tag:blogger.com,1999:blog-71463760513244085372024-02-20T01:08:59.452-05:00Broken and WokenBroken and Wokeneliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.comBlogger52125tag:blogger.com,1999:blog-7146376051324408537.post-24242872524185069402020-06-12T09:04:00.000-04:002020-06-12T09:05:01.071-04:00Ashes on the Tongue<span id="docs-internal-guid-bab054a9-7fff-b396-a498-15488adaade5"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-size: 11pt; white-space: pre-wrap;">Felix has been to a few demonstrations, most recently the Disability Pride Parade in New York City. While I am proud of him, he did not show any great pleasure at being stuck in a car for five hours as we drove from his school in New Hampshire only to be wheeled through the sweltering streets of Manhattan in July. He scowled most of the time, and his vocalizations veered towards the screechy and annoyed. So even if pandemic precautions had not prohibited it, I would not have taken him to the Black Lives Matter protest in our little town in New Hampshire. That was for my daughters and me. As a healthy white mother and as a student of history, I felt that I had no choice but to be there. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">My first teacher was black. His name was Gordon. He scooped me up and whisked me to safety when a classmate was angrily grinding sand into my scalp. She was black, too. It is possible I was staring at her skin, and it is possible that's what enraged her. I hadn’t realized the variety of color people’s skin could come in. All my family members were white, and we lived in an all-white neighborhood in Cambridge, Massachusetts. That preschool was my first taste of anything approaching diversity. Established in response to the Boston busing riots, it was a cheerful place of finger paints, building blocks, and daily naps, with a student body carefully culled from families who were half black, half white, half working class, half middle class. As an incubator for raising people committed to inclusion, it worked, at least on me. I have felt a distance from and discomfort in groups that are one class or one color ever since. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Gordon had a gentle laugh, didn’t mind my shyness, and was my source of comfort and safety. I loved him and have often wondered if his influence protected me from the fear of black men that social scientists tell us exists in the white heart. Speaking for myself, when I was of an age to feel frightened of boys, the white ones scared me most. I had not yet studied American racism, yet my body must have known that while black boys might annoy me, they wouldn’t risk seriously hurting me. White boys, on the other hand? There was little holding them back. They could do what they wanted, and still get appointed to the Supreme Court. </span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I am writing about my somatic experience of racism because Toni Morrison called out white writers for not exploring this territory. I cannot speak for anyone besides myself here, but I feel it as a curdling fury, a disgust with property and possession, a desire to cast off everything I own and wander around in sackcloth. I recognize this as a desire for purity, a wish to detach myself from my country’s history and cultural legacy, to cleanse myself from sins that the entire nation has been steeped in for generations. My family stretches back to those first boatloads of white people. We’ve got genocide, stolen land, the slave trade, Jim Crow, redlining, mass incarceration, and more on our conscience. None of this cuts down on my lifespan, lands me in jail, robs me of my children, but it weighs and sours. It's a poison that gives power, ashes on the tongue.</span></p><br /></span><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><span><p style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: left;"><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">“History does not refer merely, or even principally, to the past. On the contrary, the great force of history comes from the fact that we carry it within us, are unconsciously controlled by it in many ways, and history is literally present in all that we do. It could scarcely be otherwise, since it is to history that we owe our frames of reference, our identities, and our aspirations. “ James Baldwin, <i>Ebony Magazine</i> 1965.</span></p></span></blockquote><span><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">This weight lightens when I am with Felix. At this point he is seventeen and remains as unimpressed as ever by manners, customs, laws, and expectations. He may be the person most immune to racism I’ve ever met. Certainly he attracts people of all colors and creeds, and responds to them with a directness untainted by history or culture. I have written about the joy of wheeling him around the streets of New York City, witnessing and joining in moments of connection with people from all walks of life. That experience was a big reason behind Extreme Kids & Crew. I was curious: Could his ability to break down color and class barriers go beyond him? Could the disabilities of our children help dissolve some of our racism? In some ways, yes: The atmosphere at Extreme Kids & Crew is generally loving, open and integrated. The bolts of energy I felt walking the streets with Felix zing around our ballpit, too. Parents of all backgrounds and from all parts of the city tell me how good it makes them feel. I recognize there may be pains and slights that they are not telling me about. I am white. I am the founder. I hope we can use this moment to break through some of this hesitation, to locate and defuse our own biases, to build trust as a community, to become better.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">We are at a pivotal moment in history. The devastating effects of Covid, so disproportionally felt in black communities, a white supremicist President and gut-wrenching evidence of police brutality have exposed the depths of American racism to those who do not usually feel its weight. The resulting protests are encouraging. People risking Covid to march in the streets, day after day, week after week in major American cities and small ones, too. My aunt told me that in Boulder, Utah, with a population of around 200 white people, 100 demonstrated in solidarity with Black Lives Matter. Solidarity marches around the world. This activity is having an effect: in New York, the repeal of 50-a means that law enforcement agencies will no longer be able to shield police misconduct records from the public, and the defund the police movement to redirect resources to community services is gaining ground around the country. These are real changes, real causes for celebration. We need to keep moving in this direction.</span></p><br /><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">At Extreme Kids, we can find ways to shine a light on how structural racism affects disability. For example, white children are more likely to be diagnosed with autism or ADHD, whereas black children are too often labeled with “disruptive behavior disorder” and put on the path to segregated classrooms, juvenile detention, and jail. According to Erin McCauley, a doctoral student at Cornell University, more than half of black people with disabilities will be arrested by the time they reach their late twenties. Lawyers, special education educators and parents have been fighting this for years. Now is the time to escalate. We can do this. Look at those kids organizing peaceful protests day after day. Look at Ella Jones, who will be Ferguson, Missouri’s first black mayor, and likely would not have been elected without Black Lives Matter protests of the killing of Michael Brown. Look way back to my preschool, the kind, warm arms of Gordon. Almost fifty years later, his influence continues. Each thing we do, each letter, each march, each vote, each donation, each conversation, each hug (when we are allowed to hug again) each stretch of the imagination and understanding, all add up to change. What we do matters. </span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIWNS3s28md0k29hQKcEQX5l0hsWwuiQ23JoID2qYXWLiQF68AcJe3Cflj0gjZvTxDI6s63RqYP29XEXZh8o9NZvKT0-GrKijymE8_my0PNgdb8Xt4DmAoMCFZWSM3uIUy2Y1ELPhQYkaB/s2810/IMG_7429.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2094" data-original-width="2810" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIWNS3s28md0k29hQKcEQX5l0hsWwuiQ23JoID2qYXWLiQF68AcJe3Cflj0gjZvTxDI6s63RqYP29XEXZh8o9NZvKT0-GrKijymE8_my0PNgdb8Xt4DmAoMCFZWSM3uIUy2Y1ELPhQYkaB/s320/IMG_7429.jpeg" width="320" /></a></div><div><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div><div><span style="font-family: arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><i>Here's the sign we brought to our local Black Lives Matter protest. Let's talk and share together. Send us your and your kids artwork and ideas about how we build a better world for all of us. </i></span></div></span>eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com2tag:blogger.com,1999:blog-7146376051324408537.post-44678587134504789982020-05-29T08:22:00.001-04:002020-05-29T08:36:19.560-04:00Onwards with the Felixes! Part 2<div class="separator" style="clear: both; text-align: center;">
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The Felix Awards continue with a celebration of the prolific and talented Cece Bell, the author and illustrator of <i>El Deafo</i> and many other wonderful books. <i>El Deafo </i>won a Newbery in 2014 and is receiving a Felix in 2020 in gratitude for the impact it has had on our children. In the words of Felix Awards Committee member and poet Craig Teicher, “Our daughter read <i>El Deafo </i>maybe two years ago and has kept it within arm’s reach since—it’s far and away her favorite book, and has opened so many conversations in our family, time after time, about how to think about and understand her disabled brother, about how to understand difference in a broader context, about how to understand herself and our family within the contexts of her community.” <br />
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<b>Emily Schultz’s Interview: </b><br />
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In the graphic novel <i><a href="https://www.abramsbooks.com/product/el-deafo_9781419712173" target="_blank">El Deafo</a>,</i> by Cece Bell, a Kindergarten-aged rabbit in a polka dot bathing suit wears a hearing aid in her long ears, but secretly just wants to be like her friends. <br />
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Bell’s work tracks her real-life experience of moving from hearing to deaf following her hospitalization for meningitis as a child. She did her graduate degree in illustration and design at Kent State University before becoming a full-time author and illustrator who captured both the Eisner Award and the Newbery Honor for this book. Her other books are: <i>Rabbit & Robot: The Sleepover, Rabbit & Robot and Ribbit, I Yam a Donkey, Bee-Wigged, Itty Bitty</i>, and the <i>Sock Monkey</i> series. She has also created books with her husband Tom Angleberger, including <i>Crankee Doodle </i>and the <i>Inspector Flytrap</i> series.<br />
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In May, I spoke to her by email and asked her about her books, her own story, and her creative process. <br />
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<b>Q&A with Cece Bell</b><br />
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<b>Emily Schultz</b>: You’ve done a lot of great children’s books. When did you decide to draw your own story? When did you know you were ready to tell it, in both words and pictures?<br />
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<b>Cece Bell:</b> I decided to tell my own story when I was about 40, after a particularly difficult interaction with a grocery store employee. I was struggling to understand her, and she got angrier and angrier as the transaction continued. I should have said, “I’m deaf! Give me a break!” But instead, I said nothing. So I ended up being mad at the woman, but even madder at myself for being deaf for most of my life, but still not able to speak up about it. <br />
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One of my main goals was to show hearing people what it feels like to be deaf. I quickly realized that the graphic novel format was perfect for showing this, as I could manipulate the speech balloons in lots of fun ways to show what Cece is hearing — or not hearing — at any given moment.<br />
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Plus, I am not the best descriptive writer, so I knew I could rely on my pictures to fill in the blanks of what I was having trouble expressing.<br />
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<b>ES:</b> Could you tell me in your own words how you became hearing impaired, and how your story intersects with or diverges from the character in the graphic novel?<br />
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<b>CB:</b> I lost my hearing in 1975, when I was four-and-a-half years old. I had been sick with meningitis and was in the hospital for two weeks. It took a while after I returned home for my parents to figure it out. I think I was so happy to be back home, and so exhausted from my time in the hospital, that I didn’t quite understand what was going on. As a child, it felt like my hearing was something that was taken from me. I had identified as a hearing person for all of my short life up to that point, and suddenly I was something else: deaf. <i>El Deafo</i> (my secret childhood nickname that I gave myself) is the story of that struggle.<br />
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The book really is my story. I made some adjustments to my timeline and altered or combined scenes from my childhood so that the book would be as entertaining a story as possible. But I made no adjustments to the feelings in the book — those are 100% true.<br />
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I ended the book with a lovely, grand moment of self-acceptance because I knew lots of deaf kids — and lots of kids who might be struggling in similar ways — would be reading the book. I wanted to give them a big dose of hope! But the truth is that it took years and years for me to get there. I didn’t have one big moment; I had lots of small moments that built up over time, helping me gradually feel more comfortable about myself and the things that made me “different.” Something that really surprised me was how telling my own story got me over that final hurdle to a place where I am really happy with who I am, and proud of my deafness and how I’ve chosen to navigate it.<br />
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And one more thing: technology, though often the bane of everyone’s existence, can be quite remarkable for those of us with disabilities. E-mail and texting have changed my life as much, or more, than hearing aids have. Being able to communicate with others in the same exact way that they communicate with others has been the greatest thing to happen in my adult life. Like I said, remarkable!<br />
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<b>ES:</b> One big difference between you and the book: the book shows the character of Cece as a rabbit in a polka dot bikini (a choice I love). Why rabbits?<br />
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<b>CB:</b> Bunnies have giant ears and excellent hearing. I felt like that one rabbit in a whole community of rabbits who had big ears like everyone else, but my big ears didn’t work. In real life, the cords of my school hearing aid went up to the sides of my head — visible, but not too visible. By making the characters bunnies, I got to draw the cords going all the way over my head, which looks much more obvious. I wanted to convey that feeling of worrying about what I looked like, of being conspicuous, when I didn’t want to stand out at all. <br />
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<b>ES: </b>As she goes from being a typical hearing child, to using a hearing aid she’s very concerned with how she looks to her friends. You really do a fantastic job of portraying a child’s self-consciousness and desire to fit in. But Cece the rabbit realizes she can have friends and pick and choose her own life path. What would you say to kids today who are having the same struggle of feeling like they need to fit in and wondering how to find their friendship circle and support?<br />
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<b>CB:</b> Share the things that make you different! Don’t hide them away like I did. Kids are curious, and the sooner you explain to them how and why you might be different, the sooner they have a chance to understand you better and to accept you the way you are. <br />
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<b>ES:</b> You have a mini-essay at the back of the book about how the book is only your experience with deafness. I wondered if you could speak to that here.<br />
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<b>CB: </b>Every disability has its own spectrum. In other words, some of us struggle more than others with a similar disability, and some of us struggle less. Some of us were luckier than others in how our caregivers cared for us and provided for us. The most important thing is that there is no wrong or right way to manage your disability. It’s yours and yours alone. You don’t need to apologize for it or explain it if you don’t want to; it’ll always be a part of your life’s path, but it doesn’t have to be the main part.<br />
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<b>ES:</b> I noticed on your website you do school and Skype visits. Can you tell us about how those work, or any memorable moments from interacting with your readers?<br />
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<b>CB:</b> My school visits are very rare these days, but yes, I do Skype visits from time to time. I’m actually going to switch to Zoom — one of the better things that these strange times have taught me is that Zoom is a better platform, ha ha! Anyway, I love it when a child raises his or her hand during the question-and-answer portion of my presentation, points to a hearing aid or cochlear implant, and says, “I’ve got hearing aids, too!” I’m in awe of the bravery it takes to do and say that. I was not that child!<br />
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<b>ES:</b> It’s quite an honor to win the Newbery Award — and well deserved. Tell me about what that moment was like for you.<br />
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<b>CB: </b>Surreal! And it continues to feel that way. Like I said earlier, I don’t see myself as a very good descriptive writer, so I will never stop feeling deep gratitude to the committee for giving me that award.<br />
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<b>ES:</b> What are you working on now?<br />
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<b>CB:</b> Something super top secret! And I’m also in the early stages of a couple of potential books. I’m making videos (<a href="https://www.youtube.com/channel/UCqumqDfE9869Kow_Kygavcg" target="_blank">posted on YouTube</a> ) that are deep dives into each chapter of E<i>l Deafo</i>. And I’m just hanging in there, trying to tough out these strange times we’re living in. Do Gratitude Lists count as projects? Those, too.<br />
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Emily Schultz is the author of the novel <i>The Blondes</i>. Her next novel is <i>Little Threats</i>, forthcoming from G.P. Putnam and Sons in November 2020. Her son is an Extreme Kids kid who is on the spectrum.</h4>
eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-25388852605208671422020-05-22T08:04:00.000-04:002020-05-22T08:05:09.111-04:00Onwards with the Felixes!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpzo77sNEJdd975tTrnSI8FYF5nnU4RZzG6dFniC9YrysvlzXoiuPcseTFDUSkGTF6XiR4rclW2YcxEi5N2FMOB5Vl6Qw3tWV1D6E3ZLpux3OdKMmwG1x0vBkxJo_J7KXA2oq4dZOXiBsF/s1600/81bP5a%252BpDIL.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1245" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpzo77sNEJdd975tTrnSI8FYF5nnU4RZzG6dFniC9YrysvlzXoiuPcseTFDUSkGTF6XiR4rclW2YcxEi5N2FMOB5Vl6Qw3tWV1D6E3ZLpux3OdKMmwG1x0vBkxJo_J7KXA2oq4dZOXiBsF/s200/81bP5a%252BpDIL.jpg" width="155" /></a></div>
What do a sly, sexy, sharply political collection of poems and a graphic novel depicting flat-chested rabbits and elementary school blues have in common? The Felix Awards. This year, Extreme Kids & Crew celebrates Ilya Kaminsky for <i>Deaf Republic</i> and Cece Bell for <i>El Deafo</i>. The Felix Award Committee selected Kaminsky and Bell because their brilliant work is informed by their experience of deafness. Despite--or perhaps because of--their different takes on this experience, both artists illustrate how expansive and unbounded disability art can be.<br />
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While we understand that many people in the deaf community do not consider deafness a disability, we at Extreme Kids & Crew believe that disability, very broadly defined, is something we all share. The sooner we accept our own oddities, pains, flaws, gaps, and terrors, the sooner we can access the understanding, insight, community, creativity, humor, and forgiveness these very same things can bring. We celebrate art that brings this to light. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCdz4jSLW6hiC5ehUbYT4md742el1jLlJ92Ls5UYW0IVVZH9EslAv6lsXOa8kyoyT07X4B755YzZjGLmJTR6vEw0UXkb20N-d65XysFUP4RPWGchcQ8gTvUWXnDx30t0iDpE-iGd72KG27/s1600/STK648179.jpg" imageanchor="1" style="clear: right; display: inline !important; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" data-original-height="1600" data-original-width="1060" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCdz4jSLW6hiC5ehUbYT4md742el1jLlJ92Ls5UYW0IVVZH9EslAv6lsXOa8kyoyT07X4B755YzZjGLmJTR6vEw0UXkb20N-d65XysFUP4RPWGchcQ8gTvUWXnDx30t0iDpE-iGd72KG27/s200/STK648179.jpg" width="131" /></a>To introduce you to our 2020 Felix Award honorees, the novelist and Extreme Kids parent Emily Schultz has conducted interviews with both of them. Below is her Q&A with Ilya Kaminsky. (I can’t recommend <i>Deaf Republic</i> highly enough. If you haven’t yet read it, now would be a good time. We’ll be discussing it at the Extreme Kids zoom book group in June.)<br />
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Next week: Cece Bell. <br />
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<i>A special thanks to the Felix Awards Committee: Brenda Shaughnessy, Craig Teicher, Jerron Herman, Maysoon Zayid, Rebecca Alson-Milkman, Eliza Factor and Amy Herzog. </i><br />
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<b>Emily Schultz’s Q&A </b><br />
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Ilya Kaminsky’s linked collection of poems <a href="https://www.graywolfpress.org/books/deaf-republic">Deaf Republic</a> is set mainly in a fictional Eastern European town under martial law. A story is told in snippets: during a puppet show, a boy is shot by a soldier; the townspeople protest by becoming deaf simultaneously. When the framing poems--both of which concern state violence in the United States--are considered, a larger story emerges.<br />
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Kaminsky came to the U.S. as a teenager and works as a writer and translator. <i>Deaf Republic</i> was the winner of the National Jewish Book Award, a finalist for the National Book Award, and was a <i>New York Times</i>’ Notable Book for 2019. It was also named Best Book of 2019 by <i>The Washington Post, Times Literary Supplement, The Telegraph, Publishers Weekly, The Guardian, Vanity Fair</i>, and <i>Library Journal</i>, among others.<br />
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In May, I spoke to Ilya over email and asked about his book, its setting and imagery, his technique and creative process. The interview has been edited for length.<br />
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<b>Emily Schultz</b>: Where did the idea for a whole town that has gone deaf come from?<br />
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<b>Ilya Kaminsky:</b> I did not have hearing aids until I was sixteen: As a deaf child I experienced my country as a nation without sound. I heard the USSR fall apart with my eyes. <br />
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Walking through the city, I watched the people; their ears were open all the time, they had no lids. I was interested in what sounds might be like. The whooshing. The hissing. The whistle. The sound of keys turning in the lock, or water moving through the pipes two floors above us. I could easily notice how the people around me spoke to one another with their eyes without realizing it. <br />
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But what if the whole country was deaf like me? So that whenever a policeman’s commands were uttered no one could hear? I liked to imagine that. Silence, that last neighborhood, untouched, as ever, by the wisdom of the government.<br />
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Those childhood imaginings feel quite relevant for me in America today. When Trump performs his press conferences, wouldn’t it be brilliant if his words landed on the deaf ears of a whole nation? What if we simply refused to hear the hatred of his pronouncements?<br />
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But — of course — the book has its own life, one quite different from mine. It is a love story that begins with newlyweds: a pregnant woman and her young husband see the soldier shoot and kill the young deaf boy. They watch the townspeople protest this murder by refusing to hear the authorities. In the middle of public calamity there is the private life of a young couple, and the depictions of days others in that imaginary town. The book is a fable, a fairy-tale in verse, but I hope it touches something in the lives of those who read it in our moment.<br />
<b><br />ES:</b> For those who haven’t read it yet, I wonder if you could tell me about Vasenka, and what type of town it is, whether there are real-life places it resembles?<br />
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<b>IK:</b> Like many others, I am a misplaced person, a refugee, a man cut in half by history. A part of me is still in Odessa, that ghost limb of a city I left. While these characters are imagined, they are also my family. I keep seeing images related by my grandmother about her arrest by Stalin’s regime in 1937:<br />
<br />
<i>When the police come to arrest her, they go straight to the kitchen. Right past her. The first policeman. Second policeman. Third. Straight to the kitchen. To the stove. To smell the stove, to see if she has burned any documents or letters. But the stove is cold. So they walk to her closet. They finger her clothes. They take some for their wives or daughters. “You won’t need any of this,” they tell her. And only then do they shove her into their black car.<br /><br />They are so busy taking her things that they don’t notice the child in the cradle. <br /><br />The infant stays in the empty apartment when she is taken to the judge. (The child in the cradle, my father, will be stolen and taken to another city. He will survive.)<br /><br />She doesn’t know this. She also doesn’t know her husband was shot right away. The judge tells her, “You have to betray your husband in order to save yourself.”<br /><br />She says, “How can I do that to the father of my child? How will I look into his eyes?” <br /><br />She doesn’t know he is already dead. <br /><br />And so she goes to Siberia for over a decade. And behind her, the infant stays. </i><br />
<br />
That is my family story, from the past. But the book, of course, was written in the present, in America today.<br />
<br />
As Americans we want to distance ourselves from a text like this one. But there is pain right here in our neighborhoods: We see stolen elections, voter suppression. Is this happening in a foreign country? No. A young man shot by police in the open street lying for hours on the pavement behind police tape, lying there for many hours: That is a very American image. And we talk about it for a bit on TV and online. And then we move on, like it never happened. And children keep being killed in our streets. This silence is a very American silence.<br />
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That image of a shot boy lying in the middle of the street is central to <i>Deaf Republic</i>. Of course, the book is a dream, a fable. But as you note, it begins and ends in the reality of the United States today. That is intentional. It is a warning of what we might become. Of what kind of country we have already become.<br />
<br />
Americans seem to keep pretending that history is something that happens elsewhere, a misfortune that befalls other people. But history is lying there in the middle of the street. Showing us who we are.<br />
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<b>ES:</b> I love the way you use birds more than once to show sound — danger. You also punctuate the poems with street dogs (they are medics, and later “thin as philosophers”). Tell me about why you have let animals into the poems. To me, these are very cinematic touches.<br />
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<b>IK: </b>Humans aren’t the only citizens in our streets: the pigeon, the dogs, the rats, the sparrows, mosquitoes and so on are cohabitating this place with us. We can pretend they don’t exist. We can pretend we don’t live in nature. But where will that take us? In most fairy tales worth remembering humans and animals talk to each other; objects, too, talk. There are no walls, real imaginary. There is an act of engagement of reaching out, stepping outside the predictable, the prescribed. And, of course, poetry — any poetry — by definition, is one giant step outside the prescribed and predictable. The reaching out to the other.<br />
<br />
It happens, in poetry, also on the level of speech itself — poetry wants to leap away from the generic. It wants to broaden the ranges of the possible in the language itself. The language shouldn’t limit us, it says, it should blast us open. The silences inside the language shouldn’t be suffocating. They should be revealing. Poetry understands silences. The language that we share with animals — anyone who has pets knows this — isn’t stiffening, it is not one where in silence is a suffocation, it is one where silence is a language all its own, a tongue of gestures, of engagement, of understanding. Same should happen on the page.<br />
<br />
I tilt this conversation towards language because that slightly odd attitude towards speech is important to me.<br />
<br />
When we came to this country, I was sixteen years old. We settled in Rochester, New York. The question of writing poetry in English would have been funny, since none of us spoke English — I myself hardly knew the alphabet. But arriving in Rochester was rather a lucky event — that place was a magical gift; it was like arriving at a writing colony, a Yaddo of sorts. There was nothing to do except for writing poetry. Why English then — why not Russian? My father died in 1994, a year after our arrival to America. I understood right away that it would be impossible for me to write about his death in the Russian language, as one author says of his deceased father somewhere, “Ah, don’t become mere lines of beautiful poetry.” I chose English because no one in my family or friends knew it; no one I spoke to could read what I wrote. I myself did not know the language. It was a parallel reality, an insanely beautiful freedom. It still is.<br />
<br />
After all, what changes for one as a poet when one writes in a second language?<br />
<br />
Even the shape of my face changed when I began to live inside the English language.<br />
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But I wouldn’t make a big deal out of writing in a language that is not one’s own. It’s the experience of so many people in the world; those who have left their homes because of wars, environmental disasters, and so on. <br />
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What’s important for a poet speaking another language are those little thefts between languages, those strange angles of looking at another literature, “slant” moments in speech, oddities and their music. <br />
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<b>ES</b>: This image of the newborn placed atop a piano and a song no one hears being played to her really stayed with me (in the poem “Arrival”). There are tender moments throughout the book, especially the love poems between Alphonso and Sonya. Did you write the poems consecutively or order them later to construct the narrative? Or did you always know what the story linking the poems would be?<br />
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<b>IK</b>: Yes, many poems in this book have to do with civic strife. But the story circles around the life of two newlyweds, the moments of small joys in a young marriage. It is a book of motherhood and fatherhood; it is a book of private happiness. I am a love poet, or a poet in love with the world. It is just who I am. If the world is falling apart, I have to say the truth. But I don’t stop being in love with that world.<br />
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True witness isn’t just about violence and war. To only notice those things is to witness only a part of our existence. But there is also wonder.<br />
<br />
I see it as my duty to report this lyricism in the whirl of our griefs. It is a personal responsibility for me: My father was a Jewish child in occupied Odessa who not only suffered, but also learned to dance. He was shaved bald so that Germans wouldn’t notice his dark hair. The Russian woman who hid him, Natalia, hid him for three years. It is not an easy thing, to keep a restless child inside for three years. Natalia taught him how to tango. And so they danced for the three years of that war, in a room where the curtains were always drawn. Once, he escaped outside to play and the German soldiers saw him, so he ran to the market and hid behind boxes of tomatoes. All my friends tell me there are too many tomatoes in my poems. They say there is too much dancing. Is there enough? I don’t know. <br />
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Today Ukraine is at war again. I go there about once a year. Donetsk is occupied. In Odessa, that party town, there are terrorist attacks. A café I liked to frequent got blown up hours before I was to meet a friend there. That friend, the poet Boris Khersonsky, gathered neighbors around the ruined entrance to the café and read his poems aloud. Some folks brought food to give away for free. <br />
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Even on the most unnerving days there are very tender moments. We have a duty to report them, too.<br />
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Here is another image from the early 1990s, from a different war: Transnistria, just sixty-five miles from our apartment in Odessa. I am fifteen years old. People knock on our door saying they fled without a change of underwear, asking to please let them make a phone call. In this chaos people lose their pensions, their homes, but they still go to the city garden in Odessa and dance while old men squeeze their accordions. Old women polka across the street, their medals clinking, beer bottles raised in the air as the rest of us clap from the benches. Time squeezes us like two pleats of an accordion. <br />
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Is it foolish to speak of little joys that occur in the middle of tragedy? It is our humanity. Whatever we have left of it. We must not deny it to ourselves.<br />
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As to the second part of your question — the one about the writing process — I write in lines. So the lines find their way on paper whether I overhear two boys insulting each other at the gas station, or see a gull cleaning her feet, or two old men playing dominoes on a hood of a car, or two young women kissing at the fish market. They become lines on receipts, on my hands, on a water bottle, on other people’s poems. Lines collect for years, but once in a while they discover that other lines are sexy and, well, the poems may come from that sort of a relationship. If I am lucky. Which isn’t often. But one has to have faith.<br />
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<b>ES:</b> What are you working on next?<br />
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<b>IK: </b>I am writing new poems and finishing a book of essays. And, I am also working on being a better husband to my wife! And, a better friend to my cat! And, a better dancer in my kitchen!<br />
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Emily Schultz is the author of the novel <i>The Blondes</i>. Her next novel is <i>Little Threats</i>, forthcoming from G.P. Putnam and Sons in November 2020. Her son is an Extreme Kids kid who is on the spectrum.<br />
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-27384722395087181562020-05-16T12:51:00.002-04:002020-05-16T12:53:51.483-04:00Join us for The Octopus Museum<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0IpR0_LQ_07EY4z1EVBm8cX5_oOwwKmu-d3VOoDvDd9gqW759AEjlXzc8BAJV4bLcfh5Hg1ek1Gc7IeUYpK_Cc5kxiaASL7VALfPhCxtqapg0exzoIAWhglgeb-F3UDp7GltsRC6nB2-q/s1600/Photo+on+5-23-19+at+11.47+AM.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0IpR0_LQ_07EY4z1EVBm8cX5_oOwwKmu-d3VOoDvDd9gqW759AEjlXzc8BAJV4bLcfh5Hg1ek1Gc7IeUYpK_Cc5kxiaASL7VALfPhCxtqapg0exzoIAWhglgeb-F3UDp7GltsRC6nB2-q/s400/Photo+on+5-23-19+at+11.47+AM.jpeg" width="340" /></a></td></tr>
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<i>Mollusks grew shells, homes, and stayed inside for millions more years, sometimes daring to stick a foot out, footing around for food.</i><br />
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Feeling like a mollusk? I recommend Brenda Shaughnessy's <i>The Octopus Museum.</i> Our Extreme Book Club will be meeting with her to discuss this wonderfully funny, dark, excruciating, furious collection of poems the evening of Wednesday, May 27. Expect a conversation that leaps from disability:<br />
<br />
<i>Before health insurance there was health, a pre-existing condition before the weird paper-cut-on-the-neck had you eventually getting around in a wheelbarrow pulled by a gentle mule named Sinister. Sure it's metaphoric. Also tru</i>e.<br />
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To apocalypse:<br />
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<i>And what if we lose the car? Running on some side road to--Pennsylvania/airport/Atlantic/evacuation center/relocation camp/as yet unknown. Trying to buy a blow up raft for four people. Can't take the wheelchair.</i><br />
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With a tidal pool of points between. Please join us! All are welcome. Contact me if you'd like an invitation.eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-84803383285564797382020-05-01T14:53:00.001-04:002020-05-04T12:42:52.357-04:00Pickled? Try This.<span id="docs-internal-guid-464c19ac-7fff-50d9-f280-b70362f10a21"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSLsosWn2MkjjMMt4If8gPncHeuLLUOk4kcn9DRxmKKqx5rZ7wYWcpNhgim07RO5-FwNxDjdwqsxY45A1WG5te0_aXCocZLAvMapqAOvciH2yQDViJ9wO_ucjFcgVggh-fq-LsfwBbTrJh/s1600/IMG_7016.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="897" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSLsosWn2MkjjMMt4If8gPncHeuLLUOk4kcn9DRxmKKqx5rZ7wYWcpNhgim07RO5-FwNxDjdwqsxY45A1WG5te0_aXCocZLAvMapqAOvciH2yQDViJ9wO_ucjFcgVggh-fq-LsfwBbTrJh/s400/IMG_7016.jpeg" width="223" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Illustration by Kate Samworth in<br />
<i>Why Fish Don't Exis</i>t by Lulu Miller.<br />
Simon & Schuster, 2020.</td></tr>
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<span id="docs-internal-guid-464c19ac-7fff-50d9-f280-b70362f10a21"><span style="font-family: "calibri" , sans-serif; font-size: 12pt; vertical-align: baseline; white-space: pre-wrap;">Thank you, Lulu Miller, for dragging me out of my vat of sadness. I’d been feeling pickled, missing my son, loathing Covid, sick of the rain. Then I opened </span><span style="font-family: "calibri" , sans-serif; font-size: 12pt; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">Why Fish Don’t Exist</span><span style="font-family: "calibri" , sans-serif; font-size: 12pt; vertical-align: baseline; white-space: pre-wrap;">, a memoir-biography mash-up by the co-creator and host of NPR’s science podcast Invisibilia, and the great swirling madness and sparkle of the world returned.</span></span></div>
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<span id="docs-internal-guid-464c19ac-7fff-50d9-f280-b70362f10a21"><span style="font-family: "calibri" , sans-serif; font-size: 12pt; font-style: italic; vertical-align: baseline; white-space: pre-wrap;">Why Fish Don’t Exist</span><span style="font-family: "calibri" , sans-serif; font-size: 12pt; vertical-align: baseline; white-space: pre-wrap;"> is of particular interest to those concerned with disability as it poses fundamental questions about the nature of classification. How do we separate one species, one population, one group from another? Who gets to draw these lines, and what tools do they use? Miller traces the life and thinking of David Starr Jordan (1851-1930), a mustachioed taxonomist who rose to great heights in the early twentieth century. He named and identified a fifth of the world’s fishes! He was the first president of Stanford University! He had mountains named after him! The murky side of his worldly success unwinds like a detective story: it seems likely that he poisoned a woman who got in his way. Policies he advocated led to the imprisonment and sterilization of tens of thousands of others. He was one of the first cheerleaders of the American Eugenics movement; he used his influence to seed the Eugenics Record Office, an all-too-influential think tank that churned out papers asserting that criminality and “pauperism” were inherited. According to the ERO, the way to eradicate poverty was to remove or damage the reproductive organs of the poor, the feeble minded, and anyone else collectively deemed unfit. </span></span></div>
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<span id="docs-internal-guid-464c19ac-7fff-50d9-f280-b70362f10a21"><span style="font-family: "calibri" , sans-serif; font-size: 12pt; vertical-align: baseline; white-space: pre-wrap;">Why dwell on such a man? Knowing thine enemy is as important as knowing thyself. Also, he makes a great counterpoint to Lulu Miller’s own brushes with depression, wonder, whiskey, love. The interplay between his material and hers is endlessly fascinating, as are the illustrations by Kate Samworth. Yes, there are pictures: dark, intriguing ones scratched with a sewing needle. It’s a great web of a book. You can’t come out of it totally hating David Starr Jordan—or perhaps you can, but the portrait Miller paints is rich and compelling, filled with insights and discoveries too complex to detail here. More likely, you will come out of it with an altered awareness of the way we divide the world, the helpfulness and obstruction of language, and a resounding appreciation for the moments when these barriers are bridged. Not to mention the beauty and wisdom of variation and revision. This one definitely gets pride of place on my disability bookshelf. </span></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 12pt; vertical-align: baseline; white-space: pre-wrap;">Next up—or soon—This year’s Felix Award Honorees! </span></div>
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</span>eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com1tag:blogger.com,1999:blog-7146376051324408537.post-80860872600974023682020-04-24T08:31:00.003-04:002020-04-24T08:31:40.721-04:00Silas's CityTo the healthcare workers healing, to the cleaners cleaning, to the teachers e-teaching, to the feeders feeding, to the deliverers delivering, to the entertainers phone-filming, to the drag queens lip synching, to the police and prisoners, bureaucrats and scriveners, techies and tricksters, firefighters and fixers, mobster-saints, flingers of paints, butchers and bakers and candlestick makers, movers and shakers and renegade Quakers, to those out of work who have not gone berserk (and those who might have gone a little berserk), to the kids and their people, and everyone who makes our beloved NYC thrum, thank you. Our flame still burns bright, as evidenced in this wonderful picture by Silas Raines.<span style="background-color: white; color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><br /></span>
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Check out Liberty's fabulous shoes! I will enjoy bragging about Silas when he hits the big time, but for now I revel in the magic of his lines. May this picture bring you some joy, too.<br />
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Here's a profile of the artist.<br />
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Name: Silas Raines<br />
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Age: 9 1/2<br />
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Extreme Kid Since: 2013<br />
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Something you like about quarantine: no answer.<br />
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Something you don’t like about this quarantine: I’m tired of staying home, I miss my teachers and friends.<br />
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Any advice to kids (or adults) in these days of Covid?: Play with your toys, eat good food, get outside and have fun.<br />
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<i>Please submit your pandemic art to Broken & Woken. We may be able to publish it or turn it into a fundraising tee shirt for Extreme Kids & Crew!</i></div>
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com5tag:blogger.com,1999:blog-7146376051324408537.post-29731602162954256572020-04-17T07:55:00.000-04:002020-04-17T11:53:46.009-04:00Doctors, Telephone Calls and Kitchen Dancing<div style="font-family: "Times New Roman", serif; font-size: 12pt; margin: 0in 0in 0.0001pt;">
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<span style="font-family: "calibri" , sans-serif;">by Eliza Factor<o:p></o:p></span></div>
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<span style="color: #1c1e21; font-family: "calibri" , sans-serif;">My friend Jenny is a doctor at the Brooklyn hospital which serves Sunset Park, a neighborhood dear to my heart as I used to live there. I remember dodging kids playing street hockey and shopping at Winley’s Emporium, Chinese muzak and Dolly Parton songs blaring as shoppers selected from bins of carrots, bitter melon, lotus root and plantain. That was a while ago, but the neighborhood remains diverse even as real estate prices have caused displacement throughout the borough. According to the most recent census, about half of Sunset Park’s residents were born outside of the United States—primarily in China, Mexico and the Dominican Republic.</span><span style="color: #222222; font-family: "calibri" , sans-serif;"><o:p></o:p></span></div>
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<span style="color: #1c1e21; font-family: "calibri" , sans-serif;">The wealth of languages spoken in the neighborhood is a joy, but also, from my friend’s point of view, a challenge. If you are a doctor who speaks English and Hindi, how do you talk with a Spanish- or Mandarin-speaking patient? Even when doctors and patients share a common language, other barriers pop up—fissures and misunderstandings related to differences in race, religion, education, gender, age, ability. Fascinated by the role that communication plays in medicine, Jenny has spent years developing an intensive training that helps medical residents better connect with their patients. Extreme Kids & Crew has been involved in the disability component of the program; this spring, some of our parents were planning on visiting her hospital to share stories. Needless to say, that plan fell through. But communication is still on my friend’s mind.</span><span style="color: #222222; font-family: "calibri" , sans-serif;"><o:p></o:p></span></div>
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<span style="color: #1c1e21; font-family: "calibri" , sans-serif;">How best to console a person while wearing a hazmat suit? Think of the patients, separated from their families and not even able to see the faces of the doctors and nurses attending to them. Hospital workers have taken to pinning pictures of themselves to their protective gear so patients can get a visual of the human behind the mask. But the families can’t see anyone: they're stuck on the outside, unable to visit. In cases where death seems inevitable, doctors have been able to call in the next-of-kin to arrange for last good-byes. But death doesn’t always act in a predictable manner, and loved ones can’t always be reached. There is a great deal of uncertainty and anguish, both inside and outside of the hospital.</span><span style="color: #222222; font-family: "calibri" , sans-serif;"><o:p></o:p></span></div>
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<span style="color: #1c1e21; font-family: "calibri" , sans-serif;">Enter the humble telephone call. Ideally, the primary care physician would be the one to get in touch with families to provide them with updates. But it is not always possible for people running from ventilator to ventilator to look up telephone numbers, leave messages, wait for returned calls, or coordinate with translators. So my friend has gotten together a group of radiologists, neurologists and other specialists, trained them (“You ask the family what they understand of the situation first, then you tell them what you know.”), and given them the information they need to impart. Sometimes, the news they deliver is good. Sometimes, it’s not. But as difficult as the process can be, e</span><span style="color: #222222; font-family: "calibri" , sans-serif;">ven with clunky translation and broken connections, even when the news is bad, the doctors say they appreciate the work. The known, after all, is invariably better than the unknown. And regardless of the news, family members almost always thank them for calling. “They are so grateful,” Jenny said. We both teared up: this heartache and kindness at the same time, this understanding that in spite of the regulations and precautions tearing us apart, we are all caught up in the same thing.</span><span style="color: #222222; font-family: "calibri" , sans-serif;"><o:p></o:p></span></div>
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<span style="color: #1c1e21; font-family: "calibri" , sans-serif;">The Covid pandemic is often compared to a war. In the numbers of dead and the way we cannot honor the dead as we would like, there are similarities, but war is a trait of humans--and those other extremely organized and populous creatures, ants. Covid is not a multi-tiered society looking to claim our land, resources, allegiance. Covid are motes of fat and protein looking for places to replicate. If they could possess something like preference, they would undoubtably prefer not to kill us; after all, they can’t replicate on a corpse. <o:p></o:p></span></div>
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<span style="color: #1c1e21; font-family: "calibri" , sans-serif;">I find this reassuring. For once, we are not killing each other. Instead, we are working together. The “we” to which I refer is enormous. As of April 6, 184 out of the UN’s 193 member countries had either issued recommendations to restrict internal movement or enacted some level of national lockdown. I know, I know: There are people flouting the recommendations or making cynical use of them. There are political leaders whose actions seem inhumane at best. But still, in my life, I have never seen people acting in such strange and bewildering harmony. Billions of people are staying home to protect the most vulnerable among us, billions are putting their lives on the line to keep us fed, medicated, clothed, clean and healthy. The news cycle is dwelling on disability related issues practically 24/7. <o:p></o:p></span></div>
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<span style="color: #1c1e21; font-family: "calibri" , sans-serif;">There is much to be celebrated--from the exhausting, loving work happening at Jenny’s hospital, to the neighborhood volunteers delivering food and supplies to the elderly, to the city wide clamor of thanks that erupts from the streets each night at 7 pm, to the wonderfully spirited art and ad hoc performances that pop up on my computer screen, made by people from all over the world, bent on reaching out, even during quarantine, and offering encouragement. <o:p></o:p></span></div>
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<span style="color: #1c1e21; font-family: "calibri" , sans-serif;">I love the videos of Iranian doctors and nurses dancing for their patients. But as I’m stuck at home, what gets my own feet working are the clips of people getting down in their kitchens. There’s the </span><a href="https://www.facebook.com/tomas.carnelli/videos/1433454626826600/" style="color: #954f72;" target="_blank"><span style="font-family: "calibri" , sans-serif;">tango from a tiny Parisian flat</span></a><span style="color: #1c1e21; font-family: "calibri" , sans-serif;"> and those </span><a href="https://www.instagram.com/p/B--BrerBE-F/?igshid=dtn6l40yh9l" style="color: #954f72;" target="_blank"><span style="font-family: "calibri" , sans-serif;">South African ladies in their finery</span></a><span style="color: #1c1e21; font-family: "calibri" , sans-serif;">, working those hips as they mix that batter. But you don't need to dress up. You don't need impeccable rhythm. You just need to move, any way you can, and let that joy percolate. Here we are, still here!<o:p></o:p></span></div>
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<span style="color: #1c1e21; font-family: "calibri" , sans-serif;">I’ll sign off with a few Extreme Kids families, dancing from their homes to yours. Why not join them? </span><span style="color: #222222; font-family: "calibri" , sans-serif;"><o:p></o:p></span></div>
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-30416219476491547132020-04-10T15:19:00.000-04:002020-04-10T15:25:54.399-04:00Rome Is Burning<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
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by Eliza Factor<br />
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Wondering what other Extreme families are doing during this Time of Covid? A lot of us are making art. Here’s a piece I particularly love by Paulina Dunn. The words, from Richard Siken, draw on the old phrase “Fiddling while Rome burns,” an aspersion cast on Emperor Nero, said to have hung out in his version of Mar-a-lago, playing the violin while his city went up in flames. But really, what could he have done? At least he wasn’t telling people there was no fire, or to put out the flames with the eye of a newt. I, for one, would prefer the fiddle to a certain president’s talking or tweeting. </div>
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I love the way Paulina’s collage links our present situation to other times and places, the plagues and disasters lived through before, the marvelous and comical desire to be holy as the world we know goes up in smoke. My vision of holy drew from Little Women: the mother and daughters sitting around the fire, knitting socks for Union soldiers. I could do that with my girls! We could sit around the computer, watching old movies as we tore up tee shirts and turned them into a big box of face masks for the workers at Felix’s school. What happened in reality was that I realized I don’t know how to sew. It took me two hours to make a single mask, and it’s not the sort of thing I would feel good about giving to someone else, though it suffices when I leave our little bunker for supplies.<br />
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My daughters have dubbed this the Boring Apocalypse because those of us not sick or not directly helping the sick do a lot of sitting around. We wait. We have Zoom seders and eat too many cookies. We repent. We realize how lucky we are: all these cookies, all these relatives and friends who are OK. Yet living alongside this non-eventfulness is a raging concern. We write condolence emails, condolence texts, condolence posts. We practice our own versions of magic by urging light, prayers, thoughts, vibes to wend from us to those we love. It’s not boring, at least not to me. The feelings of separation and connection are too powerful. </div>
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This Sunday will be the first Easter I won’t be hovering by Felix, ready to grab a dyed egg before he chomps right through the shell. His absence is a hollowness in my heart, and yet I do not bear it alone. In Rome, in Bejing, in Maplewood, New Jersey, others feel this same ache. And probably also this same wonder at the creativity of our children, the new ways we find of helping each other, the clearness of the skies, and the thoughts that spring up in the quietness. </div>
eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-56799991307428820672020-04-03T08:11:00.000-04:002020-04-03T08:12:51.306-04:00Dispatch from Dublinby Eliza Factor<br />
founder of Extreme Kids & Crew<br />
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I clean, I cough, I ponder seedlings and prevailing winds. We are up in New Hampshire, to be near Felix, but due to Covid 19 we cannot visit him. We can only wait, and growl at our internet connection, which comes via satellite and wavers when the clouds go by. Time expands. My heart contracts. A middle aged adult resident at Felix’s school has died. But Felix is healthy, far removed, in good spirits.<o:p></o:p></div>
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You can’t hear sirens here. You hear the wind blowing through the branches, chickadees, our dog barking at his own invisible threats. I attack the storeroom behind the garage, in the hopes of resuscitating a work bench back there. I sweep up years’ worth of mouse pellets that might carry the hantavirus, a silty layer of dust that might trigger my asthma. I swab inky black blobs that might be black mold. None of it bothers me. That’s the thing about wartime thinking. Get a shiny new repository of fear and the old ones fade into has-beens. I wonder if molds, motes and viruses hold microscopic conventions. If they ponder best practices for tamping down the human population. If they consider Covid 19 their reigning champion.<o:p></o:p></div>
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I told Felix it was heroic of us, remaining in our respective houses, meeting only over the phone. We are being Daoist superheroes, fighting the disease by doing nothing. “Ha ha ha!” he roared. He has been in a marvelous mood recently, laughing up a storm. Maybe it amuses him. We, who usually hurry everywhere, stepping into his slower, stationary world, making a big deal of what for him is quite ordinary. Maybe he is a vanguard, lighting the way for stillness, uncertainty, isolation. I don’t know. I just know that I’m grateful he’s happy. <o:p></o:p></div>
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His sisters, not so much. They are bored out of their minds. <o:p></o:p><span style="font-size: 12pt;">A friend is working on a community art project in Washington D.C.</span><span style="font-size: 12pt;"> </span><span style="font-size: 12pt;">The idea is to draw pictures, display them in your windows, tag your address on a treasure map.</span><span style="font-size: 12pt;"> </span><span style="font-size: 12pt;">That way neighbors walking their dogs or trying to get a breath of fresh air in a responsible, socially distant way can go hunting for art. </span></div>
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“Maybe the girls would like to do something like that,” she suggested.<o:p></o:p></div>
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“We don’t have people walking by,” I said. “We’re in the woods.” <o:p></o:p></div>
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“You’ve got foxes. Make art for the foxes.”<br />
After the girls’ daily bout with Google Classroom, I suggested we collect material from the forest, make figures, arrange them in the hollows of trees. They listened politely. They didn’t say no. They are in middle school. That’s about as good as it gets. We tromped along the path, the dog bounding ahead, Miranda lagging behind. <o:p></o:p></div>
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“What’s wrong?” I asked.<o:p></o:p></div>
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“Nothing.”<o:p></o:p></div>
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I considered a stick ledged with fungi. She tripped in a puddle.</div>
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<span style="font-size: 12pt; text-indent: 0.5in;">“Are you OK?”</span></div>
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She looked like she was about to cry. “Please, please do not make me do pine cone art.”<o:p></o:p></div>
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And so it goes. No art for the foxes. But she did paint this:<o:p></o:p></div>
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Good luck everyone. Next week, a dispatch on your art. Hang in there! <o:p></o:p></div>
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com4tag:blogger.com,1999:blog-7146376051324408537.post-38881001633722792182020-03-27T14:07:00.000-04:002020-04-03T08:29:29.053-04:00Book Crew<div class="separator" style="clear: both; text-align: center;">
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Lonely? Despairing? Missing your crew? Join me for a virtual book club.<br />
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We have a good number of great writers in the Extreme Kids & Crew community. Reading their work is a great way to support them and transport yourself from the increasingly familiar walls surrounding us all. Plus if we meet over ZOOM to discuss, we get a chance to connect, which is what Extreme Kids & Crew is all about. <br />
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I have put together a preliminary list that can easily be expanded. I would love this to last beyond Covid 19. There will be a beyond, people. I promise. <br />
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First up is particularly apt. A Kirkus Review and NPR Best Book of the Year, <i>The Blondes</i> is a dark, comic, superbly entertaining account of a rabies like pandemic that affects only blonde women who must do whatever they can to hide their hair. By Emily Schultz. First meeting: <b>Wednesday, April 29 at 7:30 p.m. </b><br />
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Next Up:<br />
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<i>The Octopus Museum</i> by Brenda Shaughnessy<br />
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<i>Deaf Republic </i>by 2020's Felix Honoree Ilya Kaminsky<br />
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<i>Kids Like Us</i> by Hilary Reyl<br />
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<i>Trembling Answers</i> by Craig Teicher<br />
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<i>St. Ivo</i> by Joanna Hershon<br />
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Let me know if you are in. I would like to read a book a month. Starting now. Email me at elizafactor@extremekidsandcrew.org<br />
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com2tag:blogger.com,1999:blog-7146376051324408537.post-56675369491342118792020-03-16T12:04:00.000-04:002020-03-16T12:04:38.706-04:00Cozy Crew<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">My hands are cleaner than they have been since 2003, when Jason and I disinfected ourselves by singing 20-second renditions of the ABC’s while scrubbing with iodine in order to visit Felix in the NICU. When he came home, there were times when I’d be stuck in the house for months--when running to the corner to buy a carton of milk was a rare and delicious taste of freedom. The handwashing and homeboundness we are all in now feels a bit like </span><span style="background-color: white; font-family: "roboto" , sans-serif; font-size: 10pt; vertical-align: baseline; white-space: pre-wrap;">déjà</span><span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"> vu all over again. </span><br />
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">But of course, this is no longer a personal matter--it’s citywide, statewide, countrywide, worldwide. As strange as all this feels--retreating into a sort of hibernation right when the daffodils are blooming--our precautions are for the very best of reasons. Those of us who are young and healthy are not acting to protect ourselves, but to prevent the disease from hurting the elderly and those with weakened immune systems. Our seclusion is a form of mass altruism. That we are so radically acting on this--schools closing, sports on hold, stores shuttered--is a reminder that we as a society can shift habitual behavior. If we can do this to mitigate the impact of COVID-19, imagine the other things we can do when we work together.</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Already, things are shifting: satellites show dramatic drops in air pollution in China and Italy. No doubt the air quality in the United States will improve also; there may also be fewer mass shootings, as there will be fewer crowds to shoot into. Opportunities for positive change can come from this. But for now, we are in the hunkering-down stage, and a big challenge is how to stay connected in isolation. </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">In my neighborhood, we have created a Google doc that connects neighbors who need help--with groceries, prescriptions, dog walking--to neighbors who can help them. And then there is the Google classroom, despised by my children, but at least it’s something. </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">At Extreme Kids, we’ve been thinking a lot about how we can connect online and outside. Contact sports and playground equipment are not recommended, but what about a daily scavenger hunt? Find a crocus. Find a tree that’s waving at you. Find graffiti, a barking dog, a jumping squirrel, a yellow car. I will be organizing a virtual book club for both adults and children featuring works by this year’s Felix Awardees--more on that soon. Meanwhile, I encourage you and your kids to dance, draw, invent new recipes, write plays or comedy routines or poems. Record your work and send it to me! I will post it here. We will share what we do best. We will call it Operation Cosy Crew.</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">The disability community is used to the world being topsy-turvy--to routines being broken, to medical solutions not working as planned. Coping, humor, resilience, creativity, working together are things we are good at. Let’s use this time well. Let’s treasure what we have.</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Please send your family’s pictures, films, stories to elizafactor@extremekidsandcrew.org</span></div>
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com1tag:blogger.com,1999:blog-7146376051324408537.post-57532200883339554002019-08-01T12:33:00.001-04:002019-08-01T12:33:14.496-04:00The Thing About Staring<a name='more'></a><div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: inherit;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">by Wendy Caster</span></span><br />
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<span style="font-family: inherit;"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">"Don't stare!"</span></span><br />
<span style="font-family: inherit; white-space: pre-wrap;">"Stop staring!"</span><br />
<span style="font-family: inherit; white-space: pre-wrap;">"Staring is rude!"</span><br />
<span style="font-family: inherit; white-space: pre-wrap;">We virtually all agree that staring is a no-no, but I have a question: what should we do instead?</span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I fear that the other side of staring is ignoring, and that makes people invisible. </span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I've been on both sides of staring: as the double-take speed-starer when surprised by what's in front of me and as the staree when I was bald from chemo. </span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I only minded some of the stares: the ones that seemed judgmental. (Was I reading the starers' minds/faces correctly? Who knows?) There was a young girl who stared at me, openly, frankly, curiously, in the lobby of a restaurant. I said hello to her and she said hello back and that was that.</span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Of course, it's rarely that simple.</span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Before proceeding, I need to mention that I'm someone who doesn't avoid eye contact and who says hello or smiles when it occurs. It's a habit that I picked up when I lived in San Diego and that I chose to retain when I returned to New York City. I've learned that many people crave interactions, however brief. They're glad to smile back. Sometimes wonderful conversations ensue. </span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Some stare-related/double-take-related anecdotes:</span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">A thin, dark-skinned young man, easily seven feet tall, enters a college hallway lined with students, mostly white, sitting against the walls. </span><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Everyone</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> does a double-take; most then look away quickly. I smile at him. He says, "Why do people do that?" I answer, "You're very striking!" And he says, "I don't like it." And who could blame him? But who could blame the students in the hallway? </span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">In an interview, a woman with dwarfism says that she hated, hated, hated the double-takes and frank stares she received growing up in a rural area where she was the only little person. Then one day her family went to a small city and she saw a person with dwarfism. And she did a double-take. And she really wanted to stare. </span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">A version of Ibsen's </span><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Doll's House</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> is done with a cast of unusually tall women and unusually short men, many of whom are dwarfs. The show is superb, and an extra benefit is </span><span style="font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">getting to stare.</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> In one scene, the lead male takes his shirt off, and I'm fascinated by the structure of his body. I've always been curious, and now I know. And I never feel a desire to stare at a person with dwarfism again. </span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I'm walking in the East Village right after a sudden thunderstorm (this is some years ago). It's crowded, and more than a few people are soaking wet. I notice a drenched couple with a kid in a stroller arguing. You can see that they are miserable. You can also see that they are Ethan Hawk and Uma Thurman. It's the East Village. No one bothers them. But every single person who passes by does a double-take. I don't envy them.</span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Taking a walk, I see a young girl in a stroller squirming with childish energy. I smile at her and even laugh a little. Then I realize that she's not squirming; she's spasming from some sort of neuromuscular disorder. Shit. </span><span style="font-family: inherit; white-space: pre-wrap;">One day, waiting for my chemo treatment, I make eye contact with a young man in the waiting room. As I smile, I realize that half of his face is covered with burn scars. He frowns and looks away. Did he think I was staring in the bad way? I guess so/hope not? But should he be the one person in the waiting room I wouldn't look at or say hi to?</span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I'm waiting in line at Trader Joe's. They send me to a cashier, then ask me to wait as they take care of a young woman in a wheelchair. She's wearing an NYU sweatshirt, and I ask her how she likes going there. It turns out we have a lot in common and we chat amiably until she leaves. I hate to say this, because it's embarrassing, but it's the first time I've ever been able to have a regular ole conversation with a visibly disabled person in that way. Which is my fault in some ways, but not in others.</span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">And this is where we get back to "what do we do instead?" I don't think every double-take can be eliminated; they happen before our decision-making mind is engaged. We can decide to then not look, and I think that's mostly what people do, but is that really an answer? On the other hand, how can you treat people as just people when your first response announced that you were shocked or surprised by them?</span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I don't have an answer to this question. I wish I did.</span><br />
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><b style="white-space: normal;">Wendy Caster is an award-winning writer. She lives in New York City.</b></span></div>
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-72600749548104323742019-04-28T10:30:00.000-04:002019-04-28T10:11:47.937-04:00Jerron Herman: The 2019 Felix Award Recipient<div dir="ltr" style="line-height: 1.295; margin-bottom: 8pt; margin-top: 0pt; text-align: justify;">
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<span style="font-size: 11pt; line-height: 1.295; white-space: pre-wrap;"><span style="color: #444444; font-family: "arial" , "helvetica" , sans-serif;"><i>In honor of Jerron Herman, 2019's Felix Award honoree, we are reposting his wonderful advice to kids--useful for adults, too. Come celebrate him on<a href="https://www.extremekidsandcrew.org/the-felix-awards" target="_blank"> May 15 at the Felix Awards</a>!</i></span></span><br />
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<span style="font-size: 11pt; line-height: 1.295; white-space: pre-wrap;"><span style="color: #444444; font-family: "arial" , "helvetica" , sans-serif;">Upon reading this know that I’ve just turned 26. I’m officially in my mid-twenties, an old man. (Don’t laugh!) But I’m writing to my younger self--my silly, creative, bolder self--and I’m remembering how much that person still exists. One of the realities of being a disabled person is the question, “what’s wrong with [insert body part]?” as in, “what’s wrong with your eyes?” or “what’s wrong with your speech?” In my case, it was “what’s wrong with your arm and leg?” I have Hemiplegia Cerebral Palsy. It’s a neuromuscular disorder that keeps the left side of my body from moving voluntarily. Synaptic nerves travel from my brain, but misfire along the way, cutting off signals to my muscles. </span></span></div>
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<span style="color: #444444; font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And that would be my response, every single time. I would say it as I hung on the monkey bars with one-hand (and totally nail it); I would say it in line for Four Square and Wall Ball, where I would </span><span style="background-color: transparent; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">inevitably </span><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">reign as king of the game. I said it when I turned six, and seven, and eight, but around sixteen they stopped asking. I started to get more looks than questions and though there was less talking to do, I still had to explain how capable I was. I did this by being silly, creative, and bold. By telling killer jokes as I tripped over my left foot, or learning to cut my waffles with a pizza cutter instead of a knife and fork, I became invincible. When I gave someone the definition of </span><span style="background-color: transparent; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Hemiplegia Cerebral Palsy,</span><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> I was ready. </span></span></div>
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<span style="color: #444444; font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Here’s a secret, though: I find it easier to just give a medical definition to a six-year-old when they boldly ask than it would be to live without the question at all. This is how I move through life; you may have another way, to which I would say, </span><span style="background-color: transparent; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Yeeehaw! Please email me at…</span><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> Ultimately, friends, I’m here to encourage you to be your version of silly, creative, and bold. Silliness tells the world you understand your value. Your disability doesn’t keep you from laughing because it offers the same ups and downs as grades, friends, and pizza slices – it’s a part of life, and life is funny. Creativity communicates to the world your higher intelligence. As you adapt to an environment with your disability, be it taking an elevator or striking up a conversation with a stranger, your brain is used a little differently, but always with cool results. Boldness changes as you grow, so there is no one way to be bold, either. </span></span></div>
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<span style="color: #444444; font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">One way to be bold as a young person is to be unafraid to try new things. Once I wanted to rock climb, but I couldn’t do it because the equipment didn’t help me. But notice, I </span><span style="background-color: transparent; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">wanted</span><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> and </span><span style="background-color: transparent; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">tried</span><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> to rock climb, knowing there was a 50% chance it wouldn’t work. Boldness is also not being afraid of your own disability but embracing it as part of you, just like your hair and smelly feet are part of you. You might be thinking, “hey, I can change my hair color </span><span style="background-color: transparent; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">and </span><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">change my socks! I can’t change my disability.” You’re right. </span></span></div>
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<span style="color: #444444; font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">But here’s another secret: you can change how you </span><span style="background-color: transparent; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">think</span><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> about your disability. I used to think my CP was an alien from another world; I didn’t know its language, and it seemed like it didn’t like or listen to me. Now I think of it more as a rambunctious cousin that just needs a PB&J to calm down. That same cousin, though, is the main reason I’m a professional dancer in New York City, working with Heidi Latsky Dance. As I learn to use him, I create really cool art that I never thought was possible. I think my CP and I speak the same language now, but sometimes we still don’t. Changing how you think about your disability opens up opportunities that you can’t imagine. </span></span></div>
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<span style="color: #444444; font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Back to this scary question of “what’s wrong?” I have rethought why people even ask. I used to think they wanted to hurt or ridicule me. Now, I think they’re curious. I’m so deliciously different from anything they’ve seen that they must know more. I’m an expert with </span><span style="background-color: transparent; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">all</span><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> the answers to the universe (not </span><span style="background-color: transparent; font-size: 11pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">really)</span><span style="background-color: transparent; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">.</span></span></div>
<span style="font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "arial" , "helvetica" , sans-serif;">That’s why I think it’s a good idea to have your answer in mind, friends, to the question, “what’s wrong with [insert here]?” The answer could be a medical definition, or an entire life of rock climbing, laughing with your friends, dancing, or doing good work. Or the answer could also simply be, “nothing.” Each answer would be right.</span></span><br />
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<b><span style="background-color: white; color: #222222; font-family: sans-serif; font-size: 13.696px;">Jerron Herman is a principal dancer and Company Associate at Heidi Latsky Dance, joining the company in 2011 having never danced before. Since then, Jerron has been featured with the company at venues like Lincoln Center, NYU Skirball, American Dance Festival, and the Whitney Museum. Through press and interviews Jerron was featured in an LA Press Club winning piece by John Bathke, Open Studio with Jared Bowen for PBS, and for his work in the world premiere of HLD's TRIPTYCH, the New York Times called him, "...the inexhaustible Mr. Herman." </span><span style="background-color: white; color: #222222; font-family: sans-serif; font-size: 13.696px;">Jerron came to New York from the Bay Area in 2009 to pursue art and consumes it in varied forms, as a writer, lyricist, dancer, and history buff. </span></b><br />
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-43716987267571913942019-03-19T09:30:00.001-04:002019-03-19T09:35:15.073-04:00Diversity and Disability<style type="text/css">
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For four years, my son went to a New York City public school that is coveted among parents in Brownstone Brooklyn, and that enshrines the false belief that it is inclusive to all. Among a handful of schools, it offers a progressive curriculum, opportunities to connect with similar parents, and what journalist Nikole Hannah-Jones has termed “curated diversity”: the kind of diversity “white parents like . . . so they’ll still be the majority and there won’t be too many black kids.” Its website features the ubiquitous collage of smiling black and brown faces. For the last three years, the school has participated in New York City’s Diversity in Admissions pilot, under which low income children receive priority for a percentage of kindergarten seats. In classrooms, PTA meetings, and on the playground, there were earnest and well-intended discussions about race, gender, and sexual orientation.</div>
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But like many progressive-minded schools that attract well-intentioned, well-off families, the school had little interest in nurturing neurodiversity. Although the principal often referred to the school as an “inclusion school,” which means that students with disabilities learn alongside their neurotypical peers and instruction is differentiated for all, it has a massive flaw when it comes to special needs diversity, and that flaw reveals itself in every layer of the community: the administration, the teachers, the parents, and the kids. </div>
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During the time my son attended the school, both kids and parents stigmatized the Integrated Co-Teaching (ICT) classroom in each grade, which is where many kids with Individualized Education Programs (IEPs) are placed. A student told me he was glad he wasn’t in the class “with the bad kids,” and parents lobbied the administration to ensure that their kids were not placed in that classroom. Kids who struggled to adhere to behavioral norms were particularly singled out. A parent told our sitter that my son, who has ADHD and other special needs, was “dangerous.” One of my son’s classmates referred to him as “a bad boy” throughout the four years he was a student there. The school did little to stop this kind of stigmatizing, despite my requests to teachers and administrators. Parents shrugged it off.</div>
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These statements and attitudes harm everyone, but they harm kids with disabilities most directly. The school’s inability to reflect on the damage this stigma inflicted on children with special needs seems at odds with its espoused commitment to restorative justice, which encourages members of the community to reflect on harms, consider their root causes, and determine how to make amends.<span class="Apple-converted-space"> </span></div>
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My son, who is now 9, has struggled at school and at home as a result of his disabilities. This past fall, in fourth grade, things got worse, and the school responded by cracking down in ways that flew in the face of its restorative justice ideals. The school suspended my son several times. Each time, administrators violated the <span class="s2">Chancellor’s Regulations</span> in numerous ways – including not providing appropriate notice, not collecting appropriate documentation, and not contacting me within appropriate time frames. When I inquired about these issues, school personnel told me that because the school operates within a restorative justice framework, they don’t know how to follow the regulations that govern a suspension.</div>
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In one written statement, a sports coach described my son’s behavior as “completely unhinged.” When I pointed out to administrators that it was inappropriate to refer to a 9-year-old child in that way, I received no response. The school social worker then told me there was nothing they could do about it, because it was the coach’s right to use that language. I suggested that similarly derogatory language around race, gender, or sexual orientation would not be deemed acceptable – and received no response. The community’s flaws around special needs allowed the school to overlook the language.</div>
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In December, we left the school, where my son had been since kindergarten. I stayed in touch with a handful of parents. Beyond those people, not a single teacher, administrator, staff person, or parent has reached out to ask how we were doing.</div>
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<span class="s3">Actually, one person did reach out. My son played on a baseball team last spring with several kids from the school, in a league unconnected to it. He loved baseball, and was looking forward to playing this year, so I signed up early. In late February, after sign-up for all baseball leagues was closed, I got a call from the team’s coach. Several school parents had expressed concern about </span>my son being on the team, after word spread about an episode during an afterschool basketball practice that none of them had observed. I can’t put both of us under such scrutiny, so he will not be playing baseball this spring, despite the fact that he has been looking forward to it all year. This is the kind of bullying that highlights the community’s lack of inclusion. When I contacted the school to ask them to intervene, I received no response.<span class="Apple-converted-space"> </span></div>
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I am an entitled white person. I have a law degree and a PhD. I don’t have a lot of money, but I know how to access it. I took out a $200,000 loan to pay for a new school, because the public school system cannot educate my son. I recognized when my son’s rights were being violated, and I spoke up. When my son was suspended without due process, I complained. He has me to defend him. I worry about kids whose parents don’t have the resources I have. Those kids, apparently, can still be suspended based on the statement of a principal, without any verification of the statement, in contradiction of the Chancellor’s Regulations.<span class="Apple-converted-space"> </span></div>
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As I work through my anger and sadness over how my son and I have been excluded from a community that celebrates its embrace of diversity, I think about an interview I heard with a woman whose child was mentally ill. She said “it’s not a casserole illness” -- people don’t bring you food, check on you, and offer help. My son’s special needs didn’t merit a casserole, let alone a friendly email. They fell outside of the concerns of the school, and of many of the families that seek out schools like this one. We have a long way to go in terms of understanding that diversity includes supporting kids with special needs and their families.</div>
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<b><span style="background-color: white; color: #333333; font-family: "luxi sans" , "lucida grande" , "lucida" , "lucida sans unicode" , sans-serif; font-size: 13px; text-align: justify;">Hilary Botein is an associate professor at the Marxe School of Public and International Affairs, Baruch College, City University of New York (CUNY)</span><span style="background-color: white; color: #333333; font-family: "luxi sans" , "lucida grande" , "lucida" , "lucida sans unicode" , sans-serif; font-size: 13px; text-align: justify;">. She studies the social politics of low income housing and community development. She lives with her son in Brooklyn.</span></b></div>
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<br />eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-42345929989456959492018-08-01T09:23:00.000-04:002019-03-16T15:25:55.412-04:00The 2018 Disability Pride Parade<div style="text-align: center;">
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The Disability Pride Parade, held annually in New York since 2015, promotes awareness, increases visibility, and encourages support of people with disabilities. It's gotten bigger, more colorful, and happier every year. It's great fun, and something Extreme Kids and their people look forward to. This year, the weather was cool, the humidity broke, and the rain stopped just in time for the parade. Extreme Kids & Crew had a large presence--and a heap of fun.</div>
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Don't believe us? Look at our pictures--and come join us next year!</div>
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For the first time ever, we had a float, thanks to Caitlin's dad, Jim. He outfitted the back of his truck with a ball pit and decorated the top with festive regalia. Here's the float arriving at the starting point.</div>
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We met at the designated area with plenty of time to pose for pictures...</div>
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....grab some balloons...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8NF284V0AscGJgRWV0104DQerJ4otTJ4PsPNlLlZhRE2XBALKhxz5GOeSvAU4Ty7dBxSRzK8wQY_2YRR9PYHrS1Q3XO-dV7wkwPBzbZ5O_399xmYuGGmWa37qhahsIdIGpwzZbxwwxJfR/s1600/IMG_2981.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8NF284V0AscGJgRWV0104DQerJ4otTJ4PsPNlLlZhRE2XBALKhxz5GOeSvAU4Ty7dBxSRzK8wQY_2YRR9PYHrS1Q3XO-dV7wkwPBzbZ5O_399xmYuGGmWa37qhahsIdIGpwzZbxwwxJfR/s400/IMG_2981.jpg" width="300" /></a></div>
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...and get our signs and posters ready.</div>
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When the parade started, we got ready to cause a scene. </div>
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Somehow, Rosey and Marisa commandeered the banner...</div>
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...and we all followed them and the float along</div>
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the parade route.</div>
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We chanted, cheered, and wore clothing that spoke volumes.</div>
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We all totally called each other the night before and arranged to wear the same clothes (just kidding, but how awesome is it that the shirts match the parasols?)!</div>
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Plenty of friends and fellow-travelers were there to cheer and support us along the way.</div>
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We ambled along and took pictures as we went. Sometimes we even took pictures of other people taking pictures of us!</div>
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Costumes and capes were optional.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxB_OUE7ND0Marh6icNuq4I752qcZibpU2fJeJRPVM0hWuqDNno3up1y_S6F6sDtzmwoPHIe5-2DxsXtNndHRgdt7I2basaG9fwChDJ-cblRd2WAQZELuXI8cDCg1FnKkO7Bikp-95FNHA/s1600/37179091_10155478756316120_3014889702592348160_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxB_OUE7ND0Marh6icNuq4I752qcZibpU2fJeJRPVM0hWuqDNno3up1y_S6F6sDtzmwoPHIe5-2DxsXtNndHRgdt7I2basaG9fwChDJ-cblRd2WAQZELuXI8cDCg1FnKkO7Bikp-95FNHA/s400/37179091_10155478756316120_3014889702592348160_n.jpg" width="400" /></a></div>
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Jumping into the ball-pit afterward was optional, too, but a very popular choice.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ_agKyJzHh5F3NJ4hFww7_x7zJCSd9ijbkAfO6o2xxyRwa8jx8oAugKCLSKyecbn7uvA7QSgAcPGOU5YkM06_ghxEzUdpw-O5TY-LhNpdX4NzhU3ewTos-sGOsz2ZMut91tGO-rGWiz8u/s1600/37175309_10155478755451120_3475126462317592576_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ_agKyJzHh5F3NJ4hFww7_x7zJCSd9ijbkAfO6o2xxyRwa8jx8oAugKCLSKyecbn7uvA7QSgAcPGOU5YkM06_ghxEzUdpw-O5TY-LhNpdX4NzhU3ewTos-sGOsz2ZMut91tGO-rGWiz8u/s400/37175309_10155478755451120_3475126462317592576_n.jpg" width="400" /></a></div>
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We gave our staff and volunteers big love...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh0DmgfE0lJ_7UW4HqcjcNcdExMlyBP4F9RpmuuO-VBmoRmbK6Wnb88XXqLZVkFRrhS5-LPEl3edULfgVIvPIQGVDq6wuwcsnWizFAt_xJdngTLcQtiyHQZMRxve19JAyF5IuKwk3SUrGB/s1600/37221227_10155478756196120_1996223051682807808_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh0DmgfE0lJ_7UW4HqcjcNcdExMlyBP4F9RpmuuO-VBmoRmbK6Wnb88XXqLZVkFRrhS5-LPEl3edULfgVIvPIQGVDq6wuwcsnWizFAt_xJdngTLcQtiyHQZMRxve19JAyF5IuKwk3SUrGB/s400/37221227_10155478756196120_1996223051682807808_n.jpg" width="400" /></a></div>
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...and posed for some group photos....</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguNvMjvHBcqd8aPHN-GlYNuXUegJimBK3bxQCwBIMEq06zm14wX5jG-tHdvlc5WNO1h-diiVe7Ioa7KYbPZnTMs2fT__ZD5D04KB8y2yKpEZFp_bjPhKyPF8DsKD48cbjHbQ7r0feIILvs/s1600/37123414_10155478755351120_1057720350445404160_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguNvMjvHBcqd8aPHN-GlYNuXUegJimBK3bxQCwBIMEq06zm14wX5jG-tHdvlc5WNO1h-diiVe7Ioa7KYbPZnTMs2fT__ZD5D04KB8y2yKpEZFp_bjPhKyPF8DsKD48cbjHbQ7r0feIILvs/s320/37123414_10155478755351120_1057720350445404160_n.jpg" width="240" /></a></div>
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before going our separate ways. See you next year!</div>
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-Liz Wollman (Board member, B&W editor, mom to the pizza-eating dude above)</div>
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Liz Wollmanhttp://www.blogger.com/profile/12928232511732388712noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-50526876475845047592018-06-01T08:00:00.000-04:002018-06-01T09:59:48.189-04:00Student Film: Special Education and the Constitutionby Marisa Luft<br />
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The assignment was for one of my classes, which was called Government and You. In the class we began by studying the constitution and learning how to create a film on iMovie. We then prepared and submitted a film for a CSPAN Student-Cam competition. The task was to create a 5-7 minute-long documentary film about a <a href="http://www.studentcam.org/winners18.htm">provision of the U.S. Constitution</a> and explain why it's important to us. My group chose to do special education, since I know so much about that topic from my daily life because of my sister, Abby. I thought it would be really important to create this film to inform the public about the topic of special education and its current state in America.<br />
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">Marisa lives in Brooklyn with her parents, brother, and sister, Abby. Marisa is a talented trombone player and volunteers at Extreme Kids & Crew where her family have been members since 2011.</span></b></div>
Anonymousnoreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-46438384706032106802018-03-20T13:58:00.000-04:002018-03-20T15:26:57.846-04:00The First Double Helix Felix!<br />
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This year, Extreme Kids & Crew is honoring Sam Gold and Amy Herzog with our first Double Helix Felix. Everyone knows who Felix is (if you don’t, you can read about him <a href="https://www.elizafactor.net/strange-beauty/" target="_blank">here</a>), but why a Double Helix, other than the niftiness of the rhyme? <br />
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As we’ve learned from countless detective shows, we are identified by our DNA. By and large, our cells are guided by the same instructions for growth and propagation as everyone else’s, but there are tiny differences in pattern and expression that make you you and me me and the magnolia tree in my back yard exactly that magnolia and none other. The similarities of our collective DNA speak to the connectivity of all life, while the differences help define and record the uniqueness of each individual. Celebrating uniqueness and commonality is what Extreme Kids & Crew is all about, so it makes sense to invoke this mother of all molecules in our awards. But I wouldn’t have thought of the double helix were it not for the doubleness of our honorees. Amy and Sam are both recognized for their significant contributions to theater: Gold won a Tony for his direction of <i>Fun Home</i> and Herzog’s <i>4000 Miles</i> won an Obie for best new American play. They are married, and the parents of two young girls, 2 and 5 years old. They allow me to see a double helix somewhat removed from biology. Picture instead a twisted ladder, the sides the parents, holding and being bound by the rungs, which are the children and perhaps their careers in the theater, and all of these elements are in motion, spiraling around, together. <br />
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Herzog and Gold’s family has been given a further twist due to the DNA of their firstborn. The instructions for her cells include a rare genetic pattern known as nemaline myopathy. This means that she lives with significant physical disabilities. I met her a few months ago when her family came to visit an Extreme Kids’s playspace in a public school in Red Hook. I am proud of our playspace and was trying to show it off; she was proud of her power wheelchair and trying to show it off. Guess who won? Picture her blithely disregarding my instructions, zooming around the halls of the school, a pack of adults running after her, laughing.<br />
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As gleeful as she can be, life is difficult for her and her parents. The knowledge that comes from frequent hospitalizations and dependency on complicated, bulky and expensive medical equipment has seeped into their work, alongside deep insights on how disability shapes family life. This understanding took theatrical form in 2017 with Gold’s Broadway production of <i>The Glass Menagerie</i>, featuring Madison Ferris, an actress with muscular dystrophy, and the debut of Herzog’s play <i>Mary Jane</i>, about the mother of young boy with multiple disabilities. <br />
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Last March, when <i>The Glass Menagerie</i> was running at the Belasco Theater, Broken & Woken’s <a href="http://brokenandwoken.blogspot.com/2017/03/the-glass-menagerie.html">Liz Wollman wrote a great review</a> in which she praised Gold for emphasizing the role disability plays in Tennessee Williams’s masterpiece, and for highlighting Laura’s dexterity, awkwardness and strength, and the toll that simply moving from one part of the room to another can take on her and her family. Actors with disabilities have long been fighting for the right to play themselves on stage, instead of watching able-bodied actors be celebrated for how realistically they can pretend to limp. So I was surprised that some critics questioned Gold’s choice of Ferris, even calling it “exploitative.” I shouldn’t have been. “Exploitative” and “inappropriate” are words people use when they are uncomfortable and don’t have the words, inclination, or desire to explain why. My son’s body makes people uncomfortable, too. Discomfort is a natural reaction that goes away with exposure. All the more reason to have more Ferrises on the stage. <br />
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<tr><td class="tr-caption" style="text-align: center;">Madison Ferris, Sally Field and Joe Mantello in Gold's <i>The Glass Menagerie</i><br />
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I saw <i>Mary Jane</i> at New York Theater Workshop back in September. Herzog’s play, brilliantly and empathetically directed by Anne Kaufman, with a stellar cast and set design, holds a vivid and powerful place in my mind. The first of its two acts takes place in Mary Jane’s “junior one bedroom” apartment in Queens; the second is in the pediatric intensive care unit (PICU) of a Manhattan hospital. Four of the five cast members take double, complementary roles. In the NYTW production,Liza Colon-Zaya played the home nurse in Mary Jane’s apartment and the doctor in the PICU. Susan Pourfar was a marketing professional with a disabled child and the Orthodox Jewish mother of seven, one of whom is disabled. Brenda Wehle played the super of Mary Jane’s apartment building and the chaplain at the hospital; Danaya Esperanza was the nurse’s niece and a hospital music therapist. At the center of the piece is the titular character, played by Carrie Coon.<br />
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Mary Jane’s almost-three-year-old son is Alex. We never see him, but we hear his ventilator, and the beeps that signal trouble. We know that he is loved, but we can’t see who he is or even guess at his personality until the last scene. Thus he first appears to be a problem, a burden, a worry. Only later do we learn that he is also a stubborn, funny, animal-loving little boy who has brought his mother joy and reckless abandon. This is not a play about Alex; it’s about the web of women keeping Alex alive, and his influence. <br />
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Before giving birth, Mary Jane was married and studying to be a teacher. After, she is single and struggling to keep her job as an administrative assistant, a job she needs for health insurance and that she loses once Alex is admitted to the hospital for a weeks-long stay. The facts are grim, but the play is not maudlin, nor is it a tragedy, though it skirts with the tragic. Mary Jane has lost the comforts of a conventional middle-class life and the pleasures of an ordinary motherhood, but she has not lost her humor, her capacity for love, or her deep appreciation of her world. Her life might seem circumscribed to an outsider--an effect generated by the cramped interiors of the set design--but she is not imprisoned. <br />
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In other words, this is not a conventional narrative, where the heroine starts off stumbling in the dark, and eventually wakes up. She is awake, though exhausted and struggling, from the beginning. The dramatic movement is more an intensification of experience. When we last see Mary Jane, her son is in the O.R., his condition precarious. Nothing is resolved. Nothing is “better.” Mary Jane is with the chaplain, discussing the goldfish she bought for Alex, when she gets one of the visual auras that often precede her migraines. She studies it, fascinated, aware of its beauty, even as the pain is closing in. <br />
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<tr><td class="tr-caption" style="text-align: center;">Carrie Coon & Susan Pourfar in Herzog's <i>Mary Jane</i><br />
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I see this as an inquiry play. Questions are scattered throughout--”Where are we?” shouts the niece, needing an address to give the ambulance driver; “What is it, mom?” asks doctor, when Mary Jane can’t decipher a medical question that she had wanted to ask. The last line of the play, spoken by the chaplain, is a question. A central query the play investigates is not why, but how its characters deal with suffering. There is the husband who had a panic attack the night his son was born and subsequently left. There is the plunger-wielding super, who believes the body turns suffering into cancer, and that cancer may be outwitted by yoga, fresh vegetables, adherence to building codes. There is Chaya, the mother of seven who understands suffering to be a reality of life. She and Mary Jane meet when Chaya is visiting her daughter at the PICU and pumping milk for her two youngest at home. They get into the sort of candid conversation that mothers in such situations sometimes do. Much of it is funny, but some is groping and unadorned, as when Chaya tries to explain the relief she can feel at the hospital:<br />
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<i>There’s so much worry, it’s going in a thousand directions all the time, all I can do is keep track of the things I’m worried about. But mostly I’m worried about: will we have to go back to the hospital, will we have another month in the hospital? Because that’s the worst thing, right? The worst thing that can happen. But when we decide, okay, the disaster is here, we’re going, it’s…<br /><br />Suddenly it’s quiet. It’s like…<br /><br />…everything I have been doing, that was very nice, but it wasn’t real. This is real. And it’s a relief, that’s what it is, it’s a relief to get back to it.</i><br />
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<i>Mary Jane</i> left me shaking, overcome with awe and gratitude. I was very pleased when the community education liaison at NYTW asked me to come back and lead a post-performance talkback (Strange Beauty, my memoir about growing up with my disabled son, had just come out, and it seemed a good fit). When I returned for the discussion, I spoke about how well the production captured my own experience during Felix’s hospitalizations: the bureaucratic, stifling atmosphere; the feeling of forever waiting, shot through with dazzling moments of clarity and humanity. It also shone a light on the bonds formed between the families of special-needs parents and the people—overwhelmingly underpaid, overextended, barely acknowledged women—who help them. It was good to see these women honored on stage, as it was to see such humor, liveliness and kindness in the face of disability and dying.<br />
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Many members of the audience noted that they had been struck by Mary Jane in much the way I had. A writer who had been caring for her mother for the past fifteen years shook her head in appreciation. “Not one false note,” she said. But others could not see the humor and warmth, only the sorrow; these spectators found it unbearably difficult to watch. I was sad to learn that this play, which I found so luminous, depressed them. But that’s just it. We don’t see things the same way; we don’t experience pain the same way. <br />
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We each have our own wiggles, patterns, and experiences that make us us; that’s how DNA works. And yet we share much more in common. Theater, the best of it, reminds us of this. When disability, in all its knottiness and difficulty, is allowed on the stage, it allows us to more fully grasp who we are. Plays like Herzog’s <i>Mary Jane</i> and productions like Gold’s <i>The Glass Menagerie</i> do just this by giving the public a chance to examine the way that disability is interwoven into our lives, to grapple with it, learn from it, argue about it, and chink away at our fear. <br />
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So thank you, Amy Herzog and Sam Gold for contributing to the recent spike in representation. Honoring disability is part of our DNA; we’re thrilled that it’s part of yours, too.<br />
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<a href="http://www.extremekidsandcrew.org/donate/" target="_blank">Please, come out in person on May 3 and celebrate their Double Helix with us! </a><br />
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-31319167140507868412018-02-01T09:43:00.000-05:002018-02-01T09:43:53.249-05:00Getting to Competentby Terra Turner<span id="docs-internal-guid-fe81b19b-3f96-ecb4-451b-ae68922a1229"></span><br />
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I have been an occupational therapist for 30 years. For the past 20 years, I have treated children with developmental disabilities almost exclusively, in home, out-patient and school-based programs. While I am passionate about this work, I generally don’t talk about the machinations of it away from the job. I embraced this strategy early on. It keeps the intensity of the work out of my house and allows my other interests and needs to be tended to. People who know me well know this and don’t ask. When new people come into my life, however, they have questions. Not long ago, I was at an event and as we went around the table doing the “who are you and what do you do” dance, some folk became fascinated with my answer enough to want details on what my days entail. <br />
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I told them a story of a particularly funny tantrum one of my kids had upon learning that he would have to get his coat and hat on without the level of support I had been giving him. I knew he was ready. He was sure he was not. He huffed, puffed, fussed, cried, cursed, snorted, snotted and finally, did what I asked. He nailed it on the third try. He was so proud. He had me tell everyone we saw walking to the bus what a great job he did. <br />
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I glanced over noting a couple of my table companions had horrified expressions. They were stuck back at the point in the story where the kid rubs his snotty face up my sleeve, wrist to elbow. “I could never do that," one mumbled. I laughed and told her that's how I came to have such a strong immune system and passed the baton to the next person at the table.<br />
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When college students come to shadow me, I tell them what I understand to be the most important aspect of becoming a therapist. A head full of kinesiology, anatomy, physiology, and being able to use the most current equipment and treatment paradigms means you are knowledgeable. But being able to move in the middle of someone’s crisis, be with them, and bring that knowledge to bear toward their growth and healing is what makes you competent. <br />
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Getting to competent fundamentally changes who you are; from body function (horrific odors no longer make me gag), to what you find entertaining (graphic violence and cruelty now make me gag). My friends tease me about how optimistic and patient they believe me to be. But I’ve spent my adult life watching people go from being not able to lift their head to being able to wave and laugh as they walk out the door. I may seem patient but, truthfully, it's because I can see progress just from the way a comatose person breathes and know that the next phase is dawning and what we can do to cross that bridge.<br />
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Thirty years in, I know in my soul there is no situation where “better” is not just do-able, but already on its way, when we choose to be the people who can get there. This isn't a saintly platitude but my world-view. It's the truth every day is built on. A snotty sleeve will never be my first choice, but it's a small price to pay. <br />
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<span style="background-color: transparent; color: #222222; font-family: "arial"; font-size: 9.5pt; white-space: pre-wrap;"><b>When Terra Turner is not working as a pediatric occupational therapist she is a visual artist, avid sci-fi fan, gardener, elder care giver, foodie, community advocate and traveler. She lives in East Cleveland, Ohio in a bright yellow house.</b></span></div>
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-9037968230347780772018-01-01T09:22:00.004-05:002018-01-02T09:34:10.347-05:00Love and Memory<div class="p1" style="text-align: left;">
<span style="-webkit-text-stroke-width: initial;">by Hilary Reyl</span></div>
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<span class="s1">Before her dementia, my mother was the rational one among us.<span class="Apple-converted-space"> </span>As the daughter of a psychoanalyst, she had learned to indulge the emotional outpourings of others. I have endless memories of her on the phone to her friends, asking leading questions, providing supportive, feminist responses.<span class="Apple-converted-space"> </span>But I cannot recall hearing her confide.<span class="Apple-converted-space"> </span>Her manner and vocabulary were so straightforward that there was nothing confused or needy about her.<span class="Apple-converted-space"> </span>She had no place for histrionics in herself.<span class="Apple-converted-space"> </span>I supposed she didn’t think her own emotions would be particularly interesting to others.<span class="Apple-converted-space"> </span>Yet I longed to know them. <span class="Apple-converted-space"> </span></span></div>
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<tr><td class="tr-caption" style="text-align: center;">The author and her parents. photo credit: Joanne Leonard</td></tr>
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<span class="s1">When she met my father in the early 1960’s, he was suffering from throat cancer and had been given three months to live, a reality she successfully denied.<span class="Apple-converted-space"> </span>She acted as though it were the doctors’ job to be conservative and hers to keep life moving along.<span class="Apple-converted-space"> </span>Buoyed by her stubbornness, and soon by two daughters, my father lived on for thirty-four years.<span class="Apple-converted-space"> </span>Having lost his voice to the cancer, he spoke in a whisper that sounded like static to the untrained ear.<span class="Apple-converted-space"> </span>Only my mother, my sister and I could understand.<span class="Apple-converted-space"> </span>We translated for him to the outside world.</span></div>
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<span class="s1">When our mother talked about the early touch-and-go years when my father was in and out of surgery, she did not discuss passion, but neither did she discuss duty.<span class="Apple-converted-space"> </span>She let the fact of her loyalty speak for itself.<span class="Apple-converted-space"> </span>It was left to my sister and me to overlay her story with our own considerable romanticism.<span class="Apple-converted-space"> </span>We told it to each other as a miracle, a leap of faith, an epic of sacrificial love.<span class="Apple-converted-space"> </span>But these were our own notions. Our mother made it clear that she was not a nurse, and that our father had to care for his own wounds in private.<span class="Apple-converted-space"> </span>Ours was not a sick person’s house.<span class="Apple-converted-space"> </span>We had a disabled father, like we had a pianist father and a Chinese scholar father.<span class="Apple-converted-space"> </span>She did not indulge in any cult of victimhood.</span></div>
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<span class="s1">Our mother was realistic about the fact that she would be the family breadwinner.<span class="Apple-converted-space"> </span>Once my father had exhausted a series of academic grants allowing us to vagabond through Europe for a few years, we moved back to start middle school in Pasadena, California. It was decided that my father would be the parent at home. My mother would support us and make sure we had health insurance.<span class="Apple-converted-space"> </span>Since she was a visual artist, she said she wanted to use her eyes; she turned to cytotechnology, screening cells under a microscope for signs of cancer. <span class="Apple-converted-space"> </span>She trained for two years and went on to work for twenty-five. <span class="Apple-converted-space"> </span></span></div>
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<span class="s1">When my sister and I told her we felt guilty that she had to spend her days in a lab instead of an artist’s studio, she replied that we shouldn’t worry about her: if she’d had the burning desire to be an artist, she would have found a way.<span class="Apple-converted-space"> </span>Others had: she mentioned Toni Morrison, writing all night surrounded by babies.<span class="Apple-converted-space"> </span>It wasn’t our fault that she didn’t have such ambition.<span class="Apple-converted-space"> </span>She said this with a smug optimism, pleased with herself for coming up with an airtight, logical argument.<span class="Apple-converted-space"> </span>Her smile was unassailable.<span class="Apple-converted-space"> </span>She was fantastic at strategy games, even though she said she didn’t care about winning.</span></div>
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<span class="s1">My sister and I were sometimes frustrated that our mother didn’t have more ego.<span class="Apple-converted-space"> </span>Seeing how smart she was, we felt she could have been “somebody”: a big lawyer or a judge, maybe, or an art director or bestselling crime novelist.<span class="Apple-converted-space"> </span>But she liked to read crime novels, take baths, and help people. <span class="Apple-converted-space"> </span></span></div>
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<span class="s1">She helped found an alternative school to combat segregation in the Los Angeles school system.<span class="Apple-converted-space"> </span>She went to Guatemala to screen pap smear slides because cervical cancer was the leading cause of death for women there.<span class="Apple-converted-space"> </span>She talked her friends through endless troubles and joys.<span class="Apple-converted-space"> </span>She nurtured my sister and me with beaming pride and her conviction that we were wonderful.<span class="Apple-converted-space"> </span>Once we were off to college, she opened our house to groups of Central American refugees.<span class="Apple-converted-space"> </span>She went to Ohio during the first Obama election to help people get to the polls.<span class="Apple-converted-space"> </span></span></div>
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<span class="s1">When our father died, he left a letter asking for his ashes to be scattered in a stream in Tuolumne Meadows in the High Sierras--his favorite trout fishing spot.<span class="Apple-converted-space"> </span>He died in January, 1997.<span class="Apple-converted-space"> </span>We had to wait for the snow to melt to drive up to Yosemite with our mother, our fiancés and our father’s two best friends.<span class="Apple-converted-space"> </span>The night before we left, our mother stayed up all night, sewing silk pouches for us to carry his ashes in.<span class="Apple-converted-space"> </span>When we told her she should get some sleep, she said quite firmly that she felt sewing these pouches was what a wife should do.<span class="Apple-converted-space"> </span>But otherwise, there were few words.<span class="Apple-converted-space"> </span>She took care of us by giving us beautiful vessels, by comforting us, by not drawing attention to her own pain.</span></div>
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<span class="s1">Nearly ten years ago, when our mother began to lose her memory, my sister and I came unmoored.<span class="Apple-converted-space"> </span>We argued with her when she misremembered, trying to bring her back to reason, to set things right again.<span class="Apple-converted-space"> </span>She was the rational one, after all.<span class="Apple-converted-space"> </span>How could she not remember which granddaughter did gymnastics and which one loved dogs?<span class="Apple-converted-space"> </span>How could she not remember the plans for tomorrow that we had discussed over and over again?<span class="Apple-converted-space"> </span>How could she not know how to roast a chicken anymore?<span class="Apple-converted-space"> </span>Where was she?</span></div>
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<span class="s1">Over time, slowly, we began to let go.<span class="Apple-converted-space"> </span>There was a moment when a close friend’s father died, and I called her for comfort.<span class="Apple-converted-space"> </span>This was a man my mother had liked immensely.<span class="Apple-converted-space"> </span>He had thrown an engagement party for my husband and me.<span class="Apple-converted-space"> </span>He was part of the fabric of our life.<span class="Apple-converted-space"> </span>My mother gave me generic words of support over the phone, but I could tell she had no idea who I was talking about.<span class="Apple-converted-space"> </span>She could no longer nurture me.</span></div>
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<span class="s1">These days, as her hold on the present continues to loosen, the emotions our mother long left unspoken are surfacing.<span class="Apple-converted-space"> </span>As her rationality dissipates, she is becoming sentimental in her own right.<span class="Apple-converted-space"> </span>And she is letting us into the private landscape she shares with our father in her mind.<span class="Apple-converted-space"> </span>She speaks of him often, extolling him, missing him, making sure we know how much he mattered to her--and to us.<span class="Apple-converted-space"> </span>Her logic is fantastical, but then, the truth is no longer in fact.<span class="Apple-converted-space"> </span>She tells us that he is responsible for all good things in our life.<span class="Apple-converted-space"> </span>When we are driving now, no matter which car we are in, she invariably says how lucky we are to have such a good, safe car, and how thoughtful it was of my father to buy it.<span class="Apple-converted-space"> </span>“He took such good care of us,” she says.<span class="Apple-converted-space"> </span>Often she follows this by “Do you remember him?<span class="Apple-converted-space"> </span>He was a wonderful man.”<span class="Apple-converted-space"> </span>We tell her that he lived until we were twenty-seven and twenty-nine.<span class="Apple-converted-space"> </span>And she exclaims, “So you did know him!<span class="Apple-converted-space"> </span>I’m so glad.<span class="Apple-converted-space"> </span>I have to write that down so I don’t forget.” <span class="Apple-converted-space"> </span></span></div>
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<span class="s1">Last time I was in California, I took one of my daughters swimming and my mother watched us.<span class="Apple-converted-space"> </span>Afterwards, she told us that my father had taught her to swim, and that swimming was one of their favorite things to do together.<span class="Apple-converted-space"> </span>I did not remind her that my father had had a tracheotomy and that if his neck was ever submerged, he would drown.<span class="Apple-converted-space"> </span>She was channeling the stories of his prowess as a young man, when he was a star on his high school and college swim teams.<span class="Apple-converted-space"> </span>She had forgotten the many anxious hours she spent while he fished for trout on motor boats on Sierra lakes.<span class="Apple-converted-space"> </span>If he ever capsized, he would drown.<span class="Apple-converted-space"> </span>But not anymore.<span class="Apple-converted-space"> </span>Now, in her romantic delusions, he is her strong partner in the water.<span class="Apple-converted-space"> </span></span></div>
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<span class="s1">Our mother lives in a retirement community called Ocean House, on the water, across from the Santa Monica Pier.<span class="Apple-converted-space"> </span>She goes for long walks on the beach.<span class="Apple-converted-space"> </span>When she takes off her shoes, she sighs and tells us how much she loves the feel of the sand between her toes.<span class="Apple-converted-space"> </span>The mother who raised us would never have bothered us with her own physical impression of sand.<span class="Apple-converted-space"> </span>It is a gift to discover now.</span></div>
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<span class="s1">She tells us that she is having memory problems, that she can’t understand what is happening to her, that she hasn’t always been “like </span></div>
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this.”<span class="Apple-converted-space"> </span>Often she will attribute her confusion to something physical: low blood sugar, or a concussion from an ice skating fall when she was a girl.<span class="Apple-converted-space"> </span>But more and more, she talks about missing her husband. <span class="Apple-converted-space"> </span><br />
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<span class="s1">“Do you know why I am like this?”<span class="Apple-converted-space"> s</span>he asks.<span class="Apple-converted-space"> </span></span></div>
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<span class="s1">“What do you mean, Mommy?”</span></div>
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<span class="s1">“I’m like this because I lost the love of my life.”<span class="Apple-converted-space"> </span></span></div>
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<span class="s1"><span class="Apple-converted-space"><b>Hilary Reyl is a writer who lives with her family in New York City. Her latest novel <a href="http://www.hilaryreyl.com/book/kids-like-us/" target="_blank">Kids Like Us</a> was recently published by FSG.</b></span></span></div>
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-36756793724435920752017-12-01T08:57:00.000-05:002017-12-01T09:29:25.276-05:00Rescue Trombone and More<div class="separator" style="clear: both; text-align: center;">
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1zoY-Jn75QnsLU2s61Uzx8IeDjoOtr_2Xd991tD7Lq9BYb8svUCdYKQyxvLX5IsTkUbWyO7LzZi72KVNKxXx0mc_LScQlW8lOn_zgxlz27LuDIGmwL098tDpb4Tdl2qCf2Ct5HcPxUS2v/s1600/rescue_brokenwoken.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1576" data-original-width="1600" height="393" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1zoY-Jn75QnsLU2s61Uzx8IeDjoOtr_2Xd991tD7Lq9BYb8svUCdYKQyxvLX5IsTkUbWyO7LzZi72KVNKxXx0mc_LScQlW8lOn_zgxlz27LuDIGmwL098tDpb4Tdl2qCf2Ct5HcPxUS2v/s400/rescue_brokenwoken.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption">Rescue Trombone<br />
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This holiday season, Broken & Woken gives you the gift of Kali Evans's drawings. Kali is another of Extreme Kids's amazing crew of artists. It was difficult choosing which of her pieces to put first, but I figure that we can all use a rescue trombone. Enjoy! </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8u_arZ24nr7tVZZ0BUHD0xr5uMEr8B4W2Ob2jc2KNQBW7LiJ8pOSeKt3Xv_xflwuRyujP5dfmXGho0u5zaSzwTtJzH3FMgaIvPFHmHch1H-uc7vt_h5zvYMmKQHkfMHDeogOCT_HV3nXW/s1600/aliens2_brokenwoken.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1199" data-original-width="1600" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8u_arZ24nr7tVZZ0BUHD0xr5uMEr8B4W2Ob2jc2KNQBW7LiJ8pOSeKt3Xv_xflwuRyujP5dfmXGho0u5zaSzwTtJzH3FMgaIvPFHmHch1H-uc7vt_h5zvYMmKQHkfMHDeogOCT_HV3nXW/s400/aliens2_brokenwoken.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aliens</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQGNPe1s-RpC02u7eHzlasQKz_oMjbaYyJ6vQGwPFhtqLkChWcdng4FO8BEBac1wbqUJKybFNd3YqpF7pyQfNeQxbm7s_CQwbsFwdcf2xnsC3wlkNI49Gd8e33APaoQEU1NYqXUeaYyFal/s1600/llamadalailamaddollyllama_brokenwoken.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1036" data-original-width="1600" height="258" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQGNPe1s-RpC02u7eHzlasQKz_oMjbaYyJ6vQGwPFhtqLkChWcdng4FO8BEBac1wbqUJKybFNd3YqpF7pyQfNeQxbm7s_CQwbsFwdcf2xnsC3wlkNI49Gd8e33APaoQEU1NYqXUeaYyFal/s400/llamadalailamaddollyllama_brokenwoken.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Llama, Dalai Lama, Milo in his Dalai Lama T-Shirt, Llama Doll in Bed</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhcs4iaApSrCb9GqnyfSCZmM7TZ06bh1WB8bzbK8kSg1lYpB9rU9kk2rIrNpHbk-hJL-l89SzvHFIJM3kSl_M8fkRcc07vbE_RrRfKCIxaEEacJVJYHwNtmGoJyOQXtNOte2JhZbUZCqZu/s1600/pigsincars_brokenwoken.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1195" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhcs4iaApSrCb9GqnyfSCZmM7TZ06bh1WB8bzbK8kSg1lYpB9rU9kk2rIrNpHbk-hJL-l89SzvHFIJM3kSl_M8fkRcc07vbE_RrRfKCIxaEEacJVJYHwNtmGoJyOQXtNOte2JhZbUZCqZu/s400/pigsincars_brokenwoken.jpg" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pigs in Cars</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6XK62wlcCW5CrtMtZY037bB88gEKi0fUtKY4hniByEC4qRvBiAM7tuKjOlVFaUQ5nfsJOFaAxoI_Z3n62p_jG4rQbpDcWWsVLgOllRNg5NOUwyCnlbxy8IntqK5KW5wOyyxfEx3vrszEv/s1600/beatlepaul_brokenwoken.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1414" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6XK62wlcCW5CrtMtZY037bB88gEKi0fUtKY4hniByEC4qRvBiAM7tuKjOlVFaUQ5nfsJOFaAxoI_Z3n62p_jG4rQbpDcWWsVLgOllRNg5NOUwyCnlbxy8IntqK5KW5wOyyxfEx3vrszEv/s400/beatlepaul_brokenwoken.jpg" width="352" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Paul from the Beatles</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggOaom1ibWlgqy-GmriQDS-Ew6xyaQ6xxXyNNuN67tHG1nQNrZ_McdC-3orq8TqGsOopAxzZYTkO8Aij09Sj3LxRO_cphB448YpeOdNhJuOrl1LMhaG1mG_3s9sfKft426g8_bVZkNlZ-n/s1600/walkingdead_brokenwoken.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1240" data-original-width="1600" height="308" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggOaom1ibWlgqy-GmriQDS-Ew6xyaQ6xxXyNNuN67tHG1nQNrZ_McdC-3orq8TqGsOopAxzZYTkO8Aij09Sj3LxRO_cphB448YpeOdNhJuOrl1LMhaG1mG_3s9sfKft426g8_bVZkNlZ-n/s400/walkingdead_brokenwoken.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Walking Dead 2 on Bubble Gum Kids TV</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhufNSpDpvNIurw2yuA_rodH_4ml5obLjdB5VkvvfbOdXSzFdoirv8_apA321JcCRNMvQlPzZJKQQeAnsVH8SZWHQ8KoQ1afUNVsAWtZuNewu8WBxxEm10o6MrGoi02Z4QoAvN57prb5J4-/s1600/superearly_brokenwoken.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1196" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhufNSpDpvNIurw2yuA_rodH_4ml5obLjdB5VkvvfbOdXSzFdoirv8_apA321JcCRNMvQlPzZJKQQeAnsVH8SZWHQ8KoQ1afUNVsAWtZuNewu8WBxxEm10o6MrGoi02Z4QoAvN57prb5J4-/s400/superearly_brokenwoken.jpg" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Early Drawing</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlj0oI5SNjdE5QPFvTkZafrRRUnk3QCRznqncsWz6RC_FM_7VJ-CR-sGsZnlXxb7sZvx1awCP3Np5AJk_MGWrUb7Bpi5VLIuTTMoCMhnK7z2WytPAR0cxWDczVRkWjS3R3vwYibNN2kdTR/s1600/comic_brokenwoken.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1231" data-original-width="1600" height="307" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlj0oI5SNjdE5QPFvTkZafrRRUnk3QCRznqncsWz6RC_FM_7VJ-CR-sGsZnlXxb7sZvx1awCP3Np5AJk_MGWrUb7Bpi5VLIuTTMoCMhnK7z2WytPAR0cxWDczVRkWjS3R3vwYibNN2kdTR/s400/comic_brokenwoken.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Recent Comic Strip</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiT7KSzNWdH_NlUNwvVyyAVxVhC5brvSsxvT1Rh689D-DMRfn-Y8QaVXUzMXLrvFtxGNZ2MO2sadq1-DK1ZCtAbKmSleOGPzeicyBYHwaHeLEFORDeynrO3U5FyNB80oef7MCR2hDLdtfs/s1600/2_flier+group.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1237" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiT7KSzNWdH_NlUNwvVyyAVxVhC5brvSsxvT1Rh689D-DMRfn-Y8QaVXUzMXLrvFtxGNZ2MO2sadq1-DK1ZCtAbKmSleOGPzeicyBYHwaHeLEFORDeynrO3U5FyNB80oef7MCR2hDLdtfs/s400/2_flier+group.jpg" width="308" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Assorted Missing Flyers</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-_XxIhEDXOSrL00hmJxR2YrA4LXcO_sMKXj11XQMGL1PVZWbe1eHsRAspcDGiAAFVqFt8gkdYKL2sqOxcEQLB2uaVGcgdR0F8vTNcl8xNSuDhz1vQBfkr5r682wU5OVcVc2UzXJIbnHnF/s1600/2yearsKali_brokenwoken.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-_XxIhEDXOSrL00hmJxR2YrA4LXcO_sMKXj11XQMGL1PVZWbe1eHsRAspcDGiAAFVqFt8gkdYKL2sqOxcEQLB2uaVGcgdR0F8vTNcl8xNSuDhz1vQBfkr5r682wU5OVcVc2UzXJIbnHnF/s200/2yearsKali_brokenwoken.jpg" width="150" /></a></div>
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<span style="background-color: transparent;"> </span><span style="font-size: 12.8px;">A bio of the artist, by her mother: My daughter Kali is a fearless, joyful, outgoing kid. She’s also 10 years old and autistic. From the moment she could use a pencil (which was later than most kids), Kali would draw constantly. She started out by making patterns of scribbled “blobs.” Within a few months, these shapes evolved into drawings of insects, pirates, her favorite moments from <i>Y</i></span><span class="m_-1917248379881643146m_-3418160523253512490m_4539499281922990073gmail-s1" style="background-color: transparent; font-size: 12.8px;"><i>o Gabba Gabba</i></span><span style="font-size: 12.8px;">, and animals. By the time she turned 5, Kali would go through a composition book a week, and would literally draw herself to sleep: some mornings, I would find her asleep in bed with a pen in her hand and ink on her cheeks.</span><span class="m_-1917248379881643146m_-3418160523253512490m_4539499281922990073gmail-Apple-converted-space" style="background-color: transparent; font-size: 12.8px;"> </span></div>
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These days, Kali still loves to draw animals and mythical creatures, and has expanded her range to include different formats and media. She makes comic books about tv shows on Alaksey, her personal network; designs fictional “missing animal” fliers; and loves watching animal face painting tutorials on YouTube and practicing on herself. Art helped Kali communicate with the world, and is now an essential part of her spirit.</div>
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-90492349223541367482017-11-01T12:22:00.000-04:002017-11-01T12:22:00.835-04:00Silas's Art<div class="separator" style="clear: both; text-align: center;">
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<b>November's post celebrates the images of one of Extreme Kids & Crew's talented artists, only seven years old and already capturing the energy, beauty and mayhem of our world. The commentary and bio below are by his mother, Vanessa Connelly.</b><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHtMyVdaLKF98JKqyOs651LnoskJkqKjMKAzWcmf3s4lxGVV2bBLUP7FRQxq4QAc7Bxf4Eay9Vm-rh6M-e39We-Mi4RWhUoR9Nqun5igLTYlo5WQql9WSUEAi3PQT1KzLFA0rUkZlcWN9h/s1600/image13.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="492" data-original-width="640" height="307" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHtMyVdaLKF98JKqyOs651LnoskJkqKjMKAzWcmf3s4lxGVV2bBLUP7FRQxq4QAc7Bxf4Eay9Vm-rh6M-e39We-Mi4RWhUoR9Nqun5igLTYlo5WQql9WSUEAi3PQT1KzLFA0rUkZlcWN9h/s400/image13.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hate Cannot ..... Only Love Can Do That</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The Man Who Walked Between the Towers</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The Man Who Walked Between the Towers</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Subway Study</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Subway Study</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Subway Study</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">New York City</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSNs1gUsEzMZLrgWXoADUdvEzSeHIH4m59AVRSkv4oic9DZw4Wq6aej02yT7lFgveV0XYf2vuze_3S2I0KGBYALrbZydBFFgq-Nzo7EfJN5BwP271uqCVUhhxOET6RAqjh9MSSShxLhxXa/s1600/image17.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="554" data-original-width="640" height="346" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSNs1gUsEzMZLrgWXoADUdvEzSeHIH4m59AVRSkv4oic9DZw4Wq6aej02yT7lFgveV0XYf2vuze_3S2I0KGBYALrbZydBFFgq-Nzo7EfJN5BwP271uqCVUhhxOET6RAqjh9MSSShxLhxXa/s400/image17.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">America</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The World</td></tr>
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Silas is seven years old, autistic, and a proud Extreme Kid. He is also one of the sweetest, funniest kids you'll ever meet. Well, anyway, I think so. I'm his mom.<br />
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A few years ago, we got a copy of Jill Mullen's book <i>Drawing Autism</i>, which features painting, collage, and drawings by people on the spectrum. Silas was really intrigued by all the pictures, so we spent lots of time paging through the book and looking at them. His favorite pieces were very bright and detailed, with lots of patterns, movement, and emotion.<br />
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Silas had already begun to show an interest in drawing, but it has since become his favorite activity. During school breaks, he can easily draw for three or four hours at a time. No matter how busy we are, he makes time every day for at least a few drawings.<br />
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Silas's art tends to focus on his favorite books, movies and television shows. Scholastic characters, geography and New York City are also favorite themes. He particularly likes capturing specific scenes over and over again. His subway series has been ongoing for a few years now. He first started drawing subways after watching the "Rhapsody in Blue" segment in <i>Fantasia 2000</i>. Whenever he adds to the series, he likes to listen to the Gershwin piece while drawing quickly and deliberately.<br />
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He was very excited when I asked him if he was interested in contributing work to this month's <i>Broken and Woken</i>. He is proud of his art--and so are we.<br />
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<tr><td class="tr-caption" style="text-align: center;">The artist at work</td></tr>
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<br />eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-3187392828326418712017-10-01T09:20:00.000-04:002017-10-01T21:17:46.231-04:00The Best Beauty Treatment Ever<style type="text/css">
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<span class="s1">A note from the author, Eliza Factor: Parallax Press just published <i><a href="http://www.parallax.org/product/strange-beauty/" target="_blank">Strange Beaut</a>y</i>, a memoir about growing up with my son Felix, and how he deepened my understanding of language, community, violence, religion, and much more--but not beauty!<span class="Apple-converted-space"> </span>In spite of the title, the chapter about beauty did not fit into the narrative.<span class="Apple-converted-space"> </span>So here it is.<span class="Apple-converted-space"> </span>Some of you may have read an earlier version years ago—this one is better!<span class="Apple-converted-space"> </span>May it release you as Felix has released me. </span></h3>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrgTkfUZP12Roo_zYOD1AKmgpe5Y_iaBXxeH43-BzsqR7vN5b1ayqh6Q_qR1eB_eL6FlydfxLu0ZlBHF046ABImOGobbCgdtTLhpk8BI_rMoCpA1iFNwU46BO0uBWlsrHi62cYTA_Yxa8Q/s1600/images.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="194" data-original-width="259" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrgTkfUZP12Roo_zYOD1AKmgpe5Y_iaBXxeH43-BzsqR7vN5b1ayqh6Q_qR1eB_eL6FlydfxLu0ZlBHF046ABImOGobbCgdtTLhpk8BI_rMoCpA1iFNwU46BO0uBWlsrHi62cYTA_Yxa8Q/s1600/images.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Detail from Modigliani's Gypsy Woman with Baby</td></tr>
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Back when I was twenty or so, in love with painting, I would wander around lower Manhattan in a haze of turpentine and linseed oil, transported by the visual world. The beauty of people struck me most deeply: the arrangement of three newspaper readers on a bench, the faraway gaze of a tired man on the No. 1 Uptown, the loose folds of a panhandler’s shawl. Kandinsky was my favorite artist, but it was Modigliani who most influenced my street raptures. I had first come across his work in high school, and mistaken his portraits for the sorts of stylized faces I drew in the marginalia of my notebooks, imaginary figures that popped into being with the curve of a pencil. Then I spent my senior year of high school in France, and there on the sidewalk were men and women who could have stepped right off his canvases. He had been painting the people he saw, and doing it so well, that his understanding of his subjects’ beauty had seeped into me, seventy years later, in another country. <br />
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The people I saw as I walked to school or work or went uptown to see friends did not look like Modigliani’s French, they looked like New Yorkers, in all their variety and magnificence. I feasted on them. Those noses! Those eyelids! Those jawlines! Even a vein could be beautiful, the purple hue of a seashell, climbing delicate and rootlike up the softness of thigh or flush of cheek. Everyone was beautiful. I would argue about this with my boyfriend, who walked the same streets, yet more often saw wattle, drabness, suppurating wounds. He thought that saying everyone was beautiful devalued the idea of beauty. I thought that his lopping off great swaths of beauty was the devaluation. Beauty wasn’t uniform. It coursed out of some and dripped out of others, and took on different guises over the run of a life. There was the beauty of children who called forth adults to protect and nourish them, the stirring sexual beauty of teenagers and young adults who carried this on but complicated it with the desire for conquest, the beauty of the middle aged and old, which was not so mouthwatering but nevertheless powerful and moving. There was the beauty of the fat and the thin, the beauty of the thoughtful and the exuberant, the beauty of the purple eye-shadowed drag queen and the Amish lady at the farmer’s market selling her cheeses. There was also the beauty that pop culture, and my boyfriend, so adored: that of sexy young women. Over the course of my life, I’ve had two friends whose looks had such a conquering capacity that walking a New York City block in their company was to feel the desire not of one or two, but of a multitude upon you, as if even apartment dwellers watering their plants in the windows were stopping mid-pour to check out what was happening on the sidewalk below. That sort of beauty was a glorious thing, and well worth celebrating, but I knew that it was not the only kind.<br />
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Jump forward to my early thirties. Primping for a party, I put on a slinky black dress and spent some time in front of the mirror, arranging my hair and trying out lipsticks. When I was done, Jason, my newish boyfriend, looked me over and said, “Oooh, you got all pretty.” He meant it as a compliment, but I was furious. <i>What?! You don’t think I’m pretty in writing clothes and pencils sticking out of my hair? See if I have daughters with you!</i> Later, when we got married (we now have two daughters), he earned my complete forgiveness when I had the chicken pox. On day two of the disease, he came home from the drugstore with a bottle of Caladryl, which he dabbed over my boil-ridden butt, back, and eyelids. I could barely stand to look at my skin, I found it so repulsive, but he was gentle and unafraid. As he came to my blistered face, he smiled and said, “your eyes are still beautiful.” <br />
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I was pregnant with our first child at the time. I recovered my health, but my pregnancy became complicated. The following months centered around unnerving visits to neonatal specialists who would frown into the sonogram and say things like, <i>it will probably be OK, the asymmetries are in the range of normal. </i>Oh, the great relief of Felix’s birth! He was a beautiful baby. Perfectly gorgeous. Jason and I spent hours admiring him, a pastime we dubbed Felix TV. How delightful he was, lying on his baby quilt, arms akimbo, big eyes shining. We never tired of pointing out the becoming chubbiness of his thighs, the curve of his mouth. This is par for the course with most new parents. According to evolutionary biology, mammals are conditioned to find their offspring cute. Birds, too, I would say, judging from the care they give to their fledglings. <br />
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Because we were first-time parents, and because of Felix’s pleasing looks, we didn’t realize that he was floppier than most other babies until he was four or five months old. At that point, our doctor referred us to a cadre of specialists and advised us to get Felix physical therapy through the federal program known as Early Intervention. The dozens of doctors and evaluators we saw in the course of getting Felix approved for this program likewise found Felix attractive. The first sentence in most of his medical reports usually included the word “cute” or “adorable.” Jason liked to joke that Felix’s cuteness had been scientifically proven. <br />
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As the strangeness of our son’s body grew more obvious, I began to see how very lucky we were that Felix’s beauty was apparent to so many. At seven months, Felix couldn’t hold a rattle, roll over, sit. If you propped him into an upright position, his head would drop over sideways, as if there were no bones in his neck. Though his slump made some passersby anxious, others were attracted by his smooth skin, his plump cheeks, the fetching gleam in his green eyes. His beauty served as a gateway. I treasured it. Provided that it lasted, I trusted that it would serve to cushion the social struggles sure to figure in his future. When I mentioned this to Fred, Felix’s physical therapist, he told me about a job he’d had treating children at a large disability center whose main clientele were poor families who couldn’t place their children anywhere else. Fred’s eyes clouded up and his voice strained when he talked about this place. Most of the children there were neglected. Those who weren’t had the sort of symmetrical and radiant faces you might see in an advertisement for Corn Flakes. They might have been loud and obnoxious, but they were seen. Fred was particularly moved by a girl who could speak but whose face, touched with paralysis, was oddly contoured. She would light up, Fred said, when he came to say hi. He had the feeling she spent the rest of the day alone.<br />
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Not long after the benefits of Felix’s looks dawned on me, I became aware of the benefits of my own.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBDdXWY_sxAQLCe79aIted1fWuXmlWAO8gk3tSZvh5d5oZmaQZGinzzYEiuS-UZnZQSKQE5TARQgMG4F1WSxWHiDvQIfelo9QLLatHPe7TwlWEWZMEjkAqYDDz6977CPETdLwtkbJCpCjf/s1600/IMG_1030.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1167" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBDdXWY_sxAQLCe79aIted1fWuXmlWAO8gk3tSZvh5d5oZmaQZGinzzYEiuS-UZnZQSKQE5TARQgMG4F1WSxWHiDvQIfelo9QLLatHPe7TwlWEWZMEjkAqYDDz6977CPETdLwtkbJCpCjf/s320/IMG_1030.jpg" width="233" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Felix, 2017</td></tr>
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Up until Jason relieved me of my financial woes, I’d supported myself as a waitress. You rarely get hired as a waitress in the swankier parts of Manhattan unless you strike the boss as pretty. And though Jason and I met at a jujitsu tournament, it was not my left hook that got his attention, but my legs, in striped purple leggings, at the dance party afterwards. My appearance was not the only thing responsible for my husband and my livelihood, but it certainly played a role. Well, duh. Any reader of beauty magazines will tell you that looks are important. But I doubt that I would have realized how this applied to me without Felix. Even as a young woman, high on turpentine, reeling at the beauty of almost every New Yorker that caught my eye, I hadn’t thought of myself as beautiful. In my circles, you are not supposed to say, or even to think, “behold! I am beautiful!” To think such a thing is considered foolish, conceited, even deluded. Your friends and family tell you you’re beautiful. You pshaw their complements and linger on what you consider to be your ungainliness. This meant in early adolescence I was mortally ashamed of the thickness of my ankles. Then there was my nose, which had the shape of a ski jump and a tendency to turn new potato red under the slightest of provocations. Then pimples, fatty thighs, dull hair, and so on. I could always find a sampling of the sort of blemishes the beauty industry preys on, or creates, so as to sell $800 wrinkle creams, nose jobs, liposuctions. I had thought I was too smart to be swayed by this sort of thing. Not so.<br />
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When Felix was sixteen months old, an MRI of his brain revealed the reason behind his floppiness: lesions in his white matter. The doctors couldn’t tell us exactly how the loss of white matter would affect his development, only that it would, and that we should expect him to be “moderately to severely” disabled throughout his life. For the next year or two, I couldn’t say the word “disabled” without choking up. But it was the idea that got me choked up, not Felix, the flesh-and-blood child scooting around the house on his walker. Felix wasn’t scared or sad. He was eager, adamant, adaptive, ingenious. For each avenue that was blocked to him, he figured out alternatives. He might not be able to converse in English, but he was a master of body language. He might not have the balance to walk independently, but he could lift himself up onto the bars of his walker and swing like a gymnast, gleefully racking our nerves with his self-taught moves. I began to see that his disabilities were just things he couldn’t do. I had things that I couldn’t do, too. <br />
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Indeed, the more I thought about it, the more I came to understand that we’re all disabled, whether we are aware of it or not. This might seem like a negative viewpoint, but I have found it liberating. As I have an inordinately difficult time finding my keys or remembering names, so my neighbor can’t seem to stop chattering, so that columnist can’t seem to wrap his mind around complexity. So what? That’s who that writer is at the moment, that’s who my neighbor is, that’s who I am. We’ve all got our disabilities. We’ve got our version of cool walker tricks, too. <br />
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Breaking the boundaries of beauty took me a little longer. I think it began when a friend gave me <i>Two Whole Cakes</i>, a book by Lesley Kinzel, which I mistakenly took for a guide to eating healthily, as there was some copy about loving your body on the cover. I was so happy when I opened it and found not a diet book but a funny, smart, heartbreaking, blistering, buoyant memoir/manifesto from the trenches of the fat acceptance movement. What an eye opener! I hadn’t even known there was a fat acceptance movement. I had known, of course, that fat people had a hard time of it, and had come to consider fatness a sort of disability. But I had not grasped the day-to-day shunning and snideness that fatness entailed, which sounded worse than anything I’d experienced with Felix. As Kinzel pointed out, our culture expects fat people to be dieting continuously, whether or not dieting works; if they so much as decide to have a treat, say an ice cream cone on a summer day, they are rebuked by strangers. Why? Why should anyone care about how much someone they don’t even know weighs? <br />
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I suspect that nasty or repulsed reactions to fat people are not so different from the nervous waves of pity that Felix can plow up when he enters a place where people do not know him. Nobody wants to be fat, nobody wants to be disabled, so seeing the fat or the visibly disabled is a reminder that you don’t always get what you want. People like Felix and Leslie Kinzel stir up fear within us: fear of what we cannot control, fear of the stuff we’re trying to hide within us, fear of being ejected from the group, fear of nature having its way, of inevitable decay. If we can get outside of this fear, so much lifts. The fat person is not a horrifying blot on humanity, but a girl with sparkling eyes and cool earrings. My son is not a tragedy, but a kid who listens to too much Cold Play. So how do we this? How do we become comfortable with that which is deemed abnormal, when often it’s not abnormal at all, often it’s just life, and beautiful life at that. How do we turn beauty from an oppressive force into something more inclusive and celebratory?<br />
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Seventeen years ago, the photographer Rick Guidotti left a high-profile career in the fashion industry to start <a href="https://positiveexposure.org/gallery/#ad-image-2" target="_blank">Positive Exposure</a>, a nonprofit arts project that uses photography and film to redefine the general public’s understanding of beauty. He started on this path when, on a break from a fashion shoot, he wandered by a bus stop and saw a young girl with the remarkable pale skin and white hair of an albino. He was struck by her beauty. When he went home to find out more about her condition, he found that the photographs used to illustrate albinism were off-putting and dehumanizing. He wondered what would happen if the girl from the bus stop got the same photographic treatment as his supermodels. So he started taking pictures of people with albinism, dwarfism, genetic mutations and disabilities with the enthusiasm and appreciation usually accorded to the tall, thin, symmetrical and young. His images are gorgeous. Leafing through his photographs, you may wonder what the fuss is all about. Why are these people outcast? That is the genius of his project. When you take fear and otherness out of the equation, when you don’t allow them into your lens, you see people who are attractive and compelling. Rick told me that many who had admired his book of portraits, <i>Change The Way You See, See The Way You Change</i>, had applauded him for “capturing the inner beauty” of his subjects. He finds the comment ridiculous. He is not an x-ray technician. He is a photographer. He takes pictures of the exterior.<br />
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Meeting Rick made me wonder what had happened to that expansive understanding of beauty I had so enjoyed when I was painting. Had too much exposure to mainstream culture curdled it? Had it been my own shift from the visual arts to writing? Walking to pick up my daughters from school, I wondered if I could get it back and began studying the faces of the people I saw on Fulton Mall, imagining that I had a paintbrush in my hand. It worked. I was right back to my twenty-year-old self, gorging on dimples, laugh lines, artful piles of Nefertiti hair. Try it. Next time you’re on a crowded street, don’t look at the advertisements, blown up and trying to get your attention. Feast your eyes instead on the features of the people nearby. Imagine them enlarged, lit up, smiling down from the billboard above you. Why? Because it’s transformative, it feels good, and it’s free. Beauty is manna. If we let it, it can connect us and feed us and ignite us. <br />
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It can also serve as a tool of resistance. Consider the fiddler in Louise Erdich’s novel <i>A Plague of Doves</i>. Shamengwa’s arm was twisted and disfigured in a childhood accident, but he retained full range of motion in his hand. When playing the fiddle, he pins his gnarled arm in position with a white silk scarf, not “just any old rag,” and uses that hand to work the strings while the other works the bow. He is known for the power of his music, but his looks aren’t bad either. Here, a middle-aged judge admires him:<br />
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<blockquote class="tr_bq">
Few men know how to become old. Shamengwa did… I thought I’d like to grow old in the way he was doing it—with a certain style. Other than his arm, he was an extremely well-made old person. Anyone could see that he had been handsome, and he still cut a graceful figure, slim and medium tall. His fine head was covered with a startling white mane of thick hair, which he was proud of and every few weeks had carefully trimmed and styled… </blockquote>
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He was fine-looking, yes, but there were other things about him. Shamengwa was a man of refinement who practiced clean habits. He prepared himself carefully to meet life every day. Ojibwa language in several dialects is spoken on our reservation, along with Cree, and Michif—a mixture of all three. Owehzhee is one of the words used for the way men get themselves up—neaten, scrub, pluck stray hairs, brush each tooth, make precise parts in our hair, and, these days, press a sharp crease down the front of our blue jeans—in order to show that although the government has tried in every way possible to destroy our manhood, we are undefeatable. Owehzhee. We still look good and know it. </blockquote>
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Owehzhee reminds me of Ehzoyhee, a word that Felix coined some years ago. Felix cannot explain what his words mean, but his eyes sparkled and his tone lifted when he said Ehzoyhee. Perhaps it meant something similar to Owehzhee. We still look good and we know it. Knowledge is the key. Once Felix made me aware of my looks, I took to wearing nicer clothes than I had before. I remember in particular a green polka-dot button-down shirt from Boden. Who cared if there were blobs of baby gook smeared on the shoulder? It was a beautiful shirt, it looked great on me, and this strengthened me as I wheeled an unusual child around the supermarket, stocking up on baby formula and applesauce. <br />
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<tr><td class="tr-caption" style="text-align: center;">Nancy Mitchell, my grandmother</td></tr>
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These days, with a misogynist in the White House, we need to gird against beauty being used as an oppressive force and claim or reclaim it for ourselves. So find and honor your beauty. Granted, it is not always easy to see or admit or claim. When I started writing this, and tried bluntly saying, “I am beautiful,” to my reflection, my mind churned up one of the popular girls from my high school, raising a contoured eyebrow and laughing in derision. Ha! You? Look again. Then I realized that she was a gatekeeper, deploying her idea of beauty to keep me down. I also realized that this poor girl’s idea of beauty had surely oppressed her as much as it oppressed me. Now I can say it. I am beautiful. It’s a handy statement as it frees me from the angst I see my friends going through as hair grays and wrinkles sprout. I don’t mind looking old. I find my mother beautiful, my aunts beautiful—and my grandmother, my goodness! Ten dollar haircuts and a little ridge of Cover Girl powder caught in a wrinkle, and no one outshone her. <br />
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I admit there are times when I sag midway through toothbrushing and think, ugh, what a pallid mishmash I am, and the shade of the popular girl from high school returns. But I’m figuring out ways to smite her. One is particularly enjoyable: I imagine myself as a flamenco singer, and not just any flamenco singer, but a woman I saw some twenty years ago at N, a tiny bar in Soho. She had iron grey hair, a short, stout body and lines like half-moons under her eyes. She looked like someone I might have seen on the bus, scowling and knitting, but as she stood under the spotlight and inhaled, the room became still. Her chest expanded and her eyes shone and she became a pillar of beauty and sorrow, strength and sensuality. Flamenco was developed by the Gypsies, Jews and Moors who took flight to the hills of Andalucía, when they were persecuted by the Spanish monarchy. It grew out of determination to survive and thrive in the face of imperial repression. It is not surprising that this is the form I turn to when I am feeling oppressed. I clap my hands and pound my heels with rhythmic devastation. I imagine myself that beautiful woman of the iron grey hair. The gatekeeper disappears. <br />
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<tr><td class="tr-caption" style="text-align: center;">Annette Duzant-Tasch, whose selfies stun me with their beauty</td></tr>
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We all are beautiful. That is what Felix taught me--what I knew when I was a child, but had forgotten. So appreciate your beauty as you are right now, not as you were ten years ago or want to be in the future. Treasure your looks and the looks of your neighbors. Rear back in skepticism at enforced uniformity. When you can see beauty all around you, and shining from you, you will feel lighter and freer. It is a liberation we all can attain. You don’t need a Felix. You don’t have to call your Congressperson (though you should, for other things). You just have to open your eyes. As to those who would rank and order beauty, divide and deny it, turn it into an exclusive club: Resist them. Clap your hands and stomp your feet and sing them into dust. <br />
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eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-35332885411073208422017-08-31T16:08:00.000-04:002017-08-31T16:08:30.520-04:00Am I Disabled?<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">by Wendy Caster</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My friends keep telling me I should go on disability. Granted, I’ve been sick and largely unable to work for over a year, but am I disabled? </span></span></div>
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<span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">When I look at that sentence, I feel like laughing at myself. After all, isn’t “sick and largely unable to work” the definition of </span><span style="background-color: transparent; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">disabled</span><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">? But it’s not that simple.</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Backstory: I was diagnosed with a mean uterine cancer in April of 2016. The usual next steps followed—surgery, chemo, radiation—but they were particularly aggressive versions of each step. Just as you fight fire with fire, you fight mean with mean. As of this writing, I am cancer-free, but the treatment beat the shit out of me. I have lymphedema of my left leg, so it is swollen and heavy and uncomfortable. I am wearing a series of Velcro wraps, hip to toes, which make the leg heavier and uncomfortable-er. I have anemia, which may be getting better, but I’m still tired. I have insomnia, so it’s difficult to tell if my lethargy is caused by the anemia or lack of good sleep. I may or may not be bleeding internally. (A capsule endoscopy should clarify that, but I’m experiencing some health insurance challenges, so I’m not sure when that will happen.) The area of my left hip and then down my leg often hurts. When it does hurt, it’s bad enough to make walking difficult or even impossible. It doesn’t seem to be related to the lymphedema. Sometimes it feels like it might be sciatica, but then sometimes its quality and location change.</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Most importantly, I have lost the ability to maintain focus. Last year I had to return a freelance project undone, which was humiliating, even though the client was lovely about it.</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I have good days, but I haven’t had enough in a row to commit to a job or even a short-term project. I’ve missed many social events, given up theater tickets, and so on. My world has gotten smaller.</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">So, am I disabled?</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">As I’ve gone through this process over the past months, I’ve come to see that it’s a two-level question. (1) Am I unable to make a living? (2) Am I willing to accept the label of being a disabled person? </span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The answer to the first question is pretty clear. I cannot make a living. The answer to the second question is trickier, but it’s important. And it reminds me of my coming-out process.</span></span></div>
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<span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">When I came out as gay in 1977, embracing a label was more than a personal decision. It was deeply political. It would affect how people viewed me. It would eventually lose me a job. It would occasionally put me in danger. But--and this is an important </span><span style="background-color: transparent; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">but--</span><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">choosing to accept that label helped me change the world. Over the next decades, many people would improve their view of homosexuality and homosexuals merely because they knew me. My openness was a cure for bigotry and misperceptions. Multiply me by the millions of other openly gay people, and you have same-sex marriage, gays in the military, and other significant political advances. I was and am only one drop in the ocean that advanced gay rights, but I’m proud to be that drop.</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">During my coming-out process, I had to let go of my own misperceptions to learn what it really meant to be gay. Right now, I’m working on my disability-related misperceptions. </span></span></div>
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<span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">These misperceptions are more emotional than factual. I wonder, am I disabled </span><span style="background-color: transparent; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">enough</span><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">? (Would my embracing the label be disrespectful to people in wheelchairs?) I wonder, will I be a different person if I’m disabled?</span></span></div>
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<span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Years ago I worked on </span><span style="background-color: transparent; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Mainstream: The Magazine for the Able Disabled.</span><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> The managing editor often spoke of people’s reluctance to accept the word </span><span style="background-color: transparent; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">disabled.</span><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> He would talk about people he knew who used hearing aids, who walked with a cane, who missed work due to various illnesses, but who would never use that word about themselves. Why did it matter to him? Because the disability community had (and has) insufficient political rights, resources, and protections, because it was (and is) misunderstood, because it needed (and needs) an ocean of support to make necessary progress.</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Hey, that sounds like the whole gay thing, no?</span></span></div>
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<span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The more I think about this, and I think about this a lot, I realize that there’s a whole ‘nother factor in operation here: my father. (See, it’s not </span><span style="background-color: transparent; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">always </span><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">about the mother.) When I was a kid, I was only sick when my father said I was sick. I could feel terrible, but if he didn’t believe me or if he thought I wasn’t sick enough or if he was just in a bad mood, off to school I was sent. I internalized this to a ridiculous extent (I mean, that was </span><span style="background-color: transparent; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">decades</span><span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> ago), and I’m still not quite able to judge my own level of illness. Or disability.</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My friends are right. I can’t work, I cancel appointments, I frequently feel pretty rotten. In a real, official sense, I am disabled. So here I am, 40 years later, coming out again.</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">After I wrote all those words above, I sent an email to my oncologist that ended with, “In order for me to apply for disability, I would need a letter saying that I'm too sick to work and/or I have a diagnosis with a less-than-positive prognosis. Would you be able to write such a letter for me?” She wrote back, “I absolutely support your need to go on disability.” And I went into an immediate depression.</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My main tool for dealing with the past 15 months has been denial. When I’m not actively feeling bad or doing something health-related, I don’t focus on my situation (or, at least I didn’t until the disability thing came up). Even though I am a researching sort of a person, I didn’t do much research. It just upset me. And even though I completely believe in support groups, I didn’t go to one. I didn’t want to spend that time totally focused on my health, or lack thereof. But my doctor’s note fucked with my denial. “Oh shit,” I thought, “I’m disabled!” And I felt incredibly bad and sad. That’s the power of words. I was no sicker than I was before I read the email. I was in no more pain. I was no more disabled. But the words hit me hard. Luckily, the sadness didn’t last too long.</span></span></div>
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<span style="background-color: transparent; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #444444; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I guess this is a process. The coming out continues.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghsO3bLQtFqDdUs3HRBxr9GhxmCG07pDc4x-erxvnJm0ed3G_zwLVgm_oSxSNGIm4cypgdJoCgW1NboOJp5fybpto7BXd4GH4isCoLCq-Bal3ruF0YfbGvuxnx8CGsZpihhN5AuXj0dSqi/s1600/wendy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="540" data-original-width="720" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghsO3bLQtFqDdUs3HRBxr9GhxmCG07pDc4x-erxvnJm0ed3G_zwLVgm_oSxSNGIm4cypgdJoCgW1NboOJp5fybpto7BXd4GH4isCoLCq-Bal3ruF0YfbGvuxnx8CGsZpihhN5AuXj0dSqi/s200/wendy.jpg" width="200" /></a></div>
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<span id="docs-internal-guid-2b07416e-394c-ad4d-6c6a-1e0292c50387"><b>Wendy Caster is an award-winning writer. She lives in New York City.</b></span>eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-65529236187308557982017-08-01T08:42:00.002-04:002017-08-01T08:42:51.473-04:00Grandfather and Grandson: A Tale of Two Disabilities<h3 style="line-height: 1.2; margin-bottom: 8pt; margin-top: 0pt;">
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">by Melissa Morgenlander</span></span><br />
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">Every year, my family visited my parents at their home in Sarasota, Florida. We all liked to spend time in the pool. My daughter, Fiona, had a special bond with my mother, and they always ended up somewhere giggling together. My husband, Michael, and I enjoyed the warm-weather escape from New York City, relaxing with something to read. And my son, Quentin, usually spent the majority of his time quickly flipping through channels on the TV.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">This is a coping method for him. Quentin has autism and ADHD, and flipping channels was a way for him to deal with the fact that we were not in our regular routine. He always has a hard time when we travel somewhere that disrupts his routines and takes him out of his usual surroundings, including visits to my parents’ home. I think Quentin wanted to see the station logos at the bottom of the screen as each channel was changed. He loved the repetition, and seeing the logos brought him a relative calm: They were the same one we have on our cable system back home.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">While it took me a while to understand Quentin and his behaviors, my father merely grumbled. He always thought Quentin was simply misbehaving. He didn’t understand the coping part. Yet if we took the remote away or tried to prevent Quentin from channel switching, he’d have a meltdown. He would kick and scream and start to destroy things. So, I’d give him the remote and let him be. My father disliked this, and our disagreements about parenting always made the trip difficult.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">My father never really tried to understand Quentin. He disapproved of every strange thing he did – and believe me, Quentin did some pretty strange stuff. Quentin licked things like glass panels or coins, touched (and nearly broke) every fragile item in their home, and liked to jump into pools, even when fully clothed. My father once told me I was spoiling him by giving in to his tantrums.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">The funny thing is, my father also had a disability. His left arm was deformed – curved into a crook. His left leg muscles made him walk funny. He was born with physical deformities in the 1930’s, when no one labelled them with a diagnosis or condition; they were what they were. Through the modern-day powers of the internet, I learned that my father likely had Erb’s palsy, but we just called it “Dad’s handicap.” There was no physical therapy or medical help for this kind of condition when Dad was a boy; his mother simply did what she could to help him.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">My father grew up unable to play with the other boys in the ballparks and playgrounds of Brooklyn. He became skilled, though, at flirting with the girls who watched the games with him on the sidelines. Still, he needed help throughout his life. He needed help cutting his food, even as an adult. He couldn’t tie his shoes, so he wore loafers. And while he loved chemistry in high school, his teacher told him he couldn’t become a chemist without two good hands. So he followed his second-favorite passion: statistics.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">When I was growing up, we never talked about his arm, but not because Dad was ashamed of himself. There was simply nothing to say. He could hug me with one good arm. What else mattered? Occasionally, he’d say he felt bad he couldn’t play catch with us like other fathers, but that never made me feel like I was missing anything.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">Quentin was born in 2007, also in Brooklyn, along with his neurotypical twin, Fiona. Just as my grandmother had to learn how to adapt for my father, so I have had to learn to adapt for Quentin.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">Like my father, Quentin has difficulty playing ball or on the playground with other kids. We got stares or complaints if Quentin took someone’s toy away or did something to upset another child. I was lucky to have found Extreme Kids & Crew before he got too big to cause too much trouble. I loved coming to Extreme Kids because I could celebrate both of my children without stares or judgment. I could compare notes on therapies and schools with other parents. I wonder, sometimes, if my grandmother ever felt as lonely as I did.</span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">My parents came to visit just as Extreme Kids was beginning to take shape. I was eager to show them this community I’d found. They sat on folding chairs and watched the kids play. I remember my father eyeing one boy who had severe physical disabilities. I knew my Dad was thinking of his own disabilities; I could see it in his eyes. Later, he said to me, “I wish I had a place like this when I was a kid.” I wish he had, too.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">Last summer, my father died at the age of 85. In retirement, he spent half the year in the Berkshires in Massachusetts and the other half in Sarasota. In both places, he pursued his favorite hobbies: bridge and going to the theater. He and my mother traveled the world and visited his many friends. He was having a fantastic retirement -- the kind we would all hope for. He had come a long way from being that kid who couldn’t play ball or become a chemist.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">The last time my kids saw my Dad, we were in Sarasota during spring break. He took me aside the day we landed and quietly said, “I really want to try to connect to Quentin. How can I do that?”<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">The question choked me up a bit. For all his years of lacking sympathy, my father was finally opening up and accepting Quentin for who he is. I told him to sit quietly next to Quentin and engage him in his own world: If he’s watching TV, watch with him. If he’s reading a book, read with him. Comment and point like he does.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span class="m_-4376385540324839699gmail-s1"><span style="color: #444444;">My father tried. It wasn’t the biggest connection by any means, but Quentin sat with him for a bit. Dad watched as Quentin flipped channels. He sat close and occasionally remarked on a logo. This image is imprinted on my brain. This simple act of trying to interact with Quentin on his level, to forge a difficult relationship: this is the greatest gift he ever gave me.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span>This simple act showed acceptance and love.<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span></span></span></div>
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<span style="color: #444444;"><span class="m_-4376385540324839699gmail-s2">We are not all alike. We come together at spaces like Extreme Kids & Crew to celebrate<span class="m_-4376385540324839699gmail-Apple-converted-space"> </span>our differences, no matter what. It’s hard. The differences mig</span><span class="m_-4376385540324839699gmail-s1">ht be difficult to get past, but we must try. Just because my father had a disability didn’t mean he immediately understood my son’s. But his attempt at acceptance and understanding – after a long period of not wanting to try – is exemplary.</span></span></div>
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<span style="font-size: small;"><span style="background-color: transparent; color: #444444; font-family: Arial, Helvetica, sans-serif; vertical-align: baseline; white-space: pre-wrap;">Dr. Melissa Morgenlander is a children's media curriculum designer, researcher, and writer. She works with a variety of educational television shows, apps, and after-school programs. She also writes about the intersection of autism and media and technology on her blog, the </span><a data-saferedirecturl="https://www.google.com/url?hl=en&q=http://www.iqjournals.com/&source=gmail&ust=1501677188171000&usg=AFQjCNGm-fhFvpj1puLNi5k9-8cit6GD5A" href="http://www.iqjournals.com/" style="font-family: Arial, Helvetica, sans-serif; text-decoration-line: none;" target="_blank"><span style="background-color: transparent; text-decoration-line: underline; vertical-align: baseline; white-space: pre-wrap;">iQ Journals</span></a><span style="background-color: transparent; color: #444444; font-family: Arial, Helvetica, sans-serif; vertical-align: baseline; white-space: pre-wrap;">. Learn more about Melissa’s professional experiences from </span><a data-saferedirecturl="https://www.google.com/url?hl=en&q=http://www.melissamorgenlander.com/&source=gmail&ust=1501677188171000&usg=AFQjCNE9h4oHC-IC0EQotjTRKpvnwZTEnw" href="http://www.melissamorgenlander.com/" style="font-family: Arial, Helvetica, sans-serif; text-decoration-line: none;" target="_blank"><span style="background-color: transparent; text-decoration-line: underline; vertical-align: baseline; white-space: pre-wrap;">her website</span></a><span style="background-color: transparent; color: #444444; font-family: Arial, Helvetica, sans-serif; vertical-align: baseline; white-space: pre-wrap;">.</span></span></div>
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</style>eliza factorhttp://www.blogger.com/profile/03778212833411589297noreply@blogger.com0tag:blogger.com,1999:blog-7146376051324408537.post-41582226113602455082017-07-01T17:41:00.000-04:002017-07-01T19:05:57.213-04:00Project Ability<div class="p1">
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<tr><td style="text-align: center;"><img alt="Daniel Mui - Gravity" height="255" src="https://lh3.googleusercontent.com/6_3B1vHlO5-XbttBEyObnqCTWW65yAC1NgqiMc7YE_z1b63dmkC7Tp2Zxl3c1nxNrqaiCq6gc5Kyn8zxSblEHizfffzl6jnnzQxBw-U0MfikAmBr7RxGt7CCkG1eMgcImxVFVOkEAZJ1Zz-lvA" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="400" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gravity, by Daniel Mui</td></tr>
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<span class="s2">Many of you won’t have heard of Project Ability (est. 1984). </span><span class="s1">We are a Glasgow, Scotland-based visual arts organization creating opportunities for people with disabilities and people with mental health issues, ages 5 to 80+, to express themselves and achieve artistic excellence. </span><span class="s1">Our Create program engages with 5- to 28-year-olds </span><span class="s3">in a range of creative activities including visual arts, film and new media. We offer printmaking, painting, drawing, ceramics, textiles and more in our studios.</span></div>
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<tr><td style="text-align: center;"><img alt="Jack Hynes - Untitled" height="400" src="https://lh4.googleusercontent.com/QXZq1YvlCoyvie9oxbsTY3VMgCNiEwC3Oa-BIF_xDRMgL6yRaO1P-Tvy2C8ZWXgItLpqdHgsun1siHFJw4RCocrc2Wca9UT8qJ5ROiwJq-YFqFVFxb-SPBTxKvkDD5W0efxFQKszc47Wa3jGXA" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="251" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Untitled, by Jack</td></tr>
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All activities are fully inclusive. The professional artists who deliver the program are highly experienced in working with young people with a wide range of support needs. Project Ability has a gallery two floors down from the studios, where we put on up to 12 exhibitions a year. Several more exhibitions are held in Glasgow, other parts of the U.K. and beyond. Often parents will stay for workshops, helping their children alongside the artists and tutors. The tutors are all trained artists, and all have extensive experience working with young people with additional-support needs. The environment during our workshops is one of joy and creativity. It can get quite loud, so we have areas that are quieter for those artists who prefer to stay away from all the noise.<br />
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<tr><td style="text-align: center;"><img alt="IMG_2216" height="265" src="https://lh6.googleusercontent.com/5fgs40I4NqW7DGM9vhHrJNpWynOKyESBnHsCdB2dlL3GrmWtkmetaj1MTG3I30QNncjHn1m2PICT9oDd8TxZsWcXdqu7VZy8LCQc-C7qNq2VYEuqoJq50ZpR8xkbPjGzPGa_7lqGs0_DnXcv-w" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="400" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gabriel and his mother, working together</td></tr>
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<span class="s1"> “Art is not for one ‘individual’. It is for everyone," says Cameron, one of our artists. "Anybody can do it. It’s all about pushing yourself – going over the so-called ‘boundaries’ and exploring your inner capabilities.” </span><br />
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<tr><td style="text-align: center;"><img alt="\\ABILITY\Data\Exhibitions\Gallery Programme\Main_Gallery\2017\Young Talent\Woken and Broken Blog\Cameron Black - Line T2 on West Highland Way.jpg" height="260" src="https://lh6.googleusercontent.com/rE6w5xne0BsubmKlxvVt5P-Xg9EVvUQ4YGWH1EAo9XPo6fAfKPHJ8m4iIs7gOReaRX0eBJ6imrlpO6SkByWJRsH83kkSXcSRvS4gGndkUWer1e_vsedrN47IVy_CtaH8Fg0oGY3jyhUZHKq0Dg" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="400" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Line T2 On West Highland Way, by Cameron Black</td></tr>
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<span class="s1">"It's been too much fun hanging out with these kids and seeing their ideas come to life," </span><span class="s5">volunteer Seamus Killick wrote about his experiences in the workshops.</span><span class="s1"> "It kind of reminds me why I got so into this art stuff back in school - it's a chance to share your private world with others. To become an explorer not only in your own imagination but to pick other people’s brains too. The to-and-fro of idle chit chat is wonderful brain food for me, especially the frankness of children which can be hilarious."</span><br />
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<span class="s1">We typically offer a ratio of one artist to four young people. Creating a fully inclusive environment is important to us, and siblings and friends are welcome to attend our classes. </span><span class="s2">Our in-house program is delivered from our fully accessible and specially equipped Trongate 103 workshops and from our outreach program at venues nationwide. </span></div>
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<span class="s1">Without the tutors’ expertise the workshops wouldn’t be as successful as they are. We are proud to have an amazing team of professional artists working with us. They share their creativity with the young people and help to increase the confidence and skills of each of our young participants. </span></div>
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<span class="s1">"Our young artists are always willing to embrace new artistic challenges and are excited about trying out all of the materials that our studios offer too," according to one tutor, Tracy. "As tutors, we learn a lot from how our young artists approach their art making too, with their lack of inhibition and freedom, come some incredible results.</span><br />
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<tr><td style="text-align: center;"><img alt="Dominic Hemphill-Whyte - Untitled 2" height="640" src="https://lh5.googleusercontent.com/TenLn_M4R4WvMvEuqf6-9IoSMkkOIEM_t07WnGGIGc9MvRnDY9hma3yMhfrM1mRtRipbKw6yc6AbRxzyXVSe1HIREeBWP_sTU9roRwAOJ3Gx84LLU30aiU3hyrpvDW0GrfhILa2P6Ky7pRd1Yw" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="480" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Untitled, by Dominique</td></tr>
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<tr><td style="text-align: center;"><img alt="\\ABILITY\Data\Exhibitions\Gallery Programme\Main_Gallery\2017\Young Talent\Woken and Broken Blog\Greg Coultas - Untitled II.jpg" height="409" src="https://lh5.googleusercontent.com/Mk5q_0CYwgULLc_G5jl-YaN1_uMyZ5c-ZStd6AYd3XPQ3T1rkOdHU3_F6tJB4DcY7PHdowEgwUiPWyHJVTGchDIrOCWAuiqtaNM5V-2RoH9ujLi5HPMkmEw0DnQuzUAUkw3p1LAo_T7nhjZasA" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="624" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Untitled, by Greg</td></tr>
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<tr><td style="text-align: center;"><img alt="IMG_3399" height="366" src="https://lh3.googleusercontent.com/563DmJ8A-m9vgzCct381EzsNQQMNQ-vsNvU7qaB_9K_V6Wuu-5xSfeW-lz_I1LKVqw-nWKeqdJnW7QqqdVEVsXbJj4mpq9rf40lj1alXRZM-PHyrrNTRJR7tpX82GFn9dNDzvYKCGSjRhkP-wg" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="550" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Work in Progress, by Lauren</td></tr>
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<tr><td style="text-align: center;"><img alt="IMG_2286" height="349" src="https://lh6.googleusercontent.com/hDC5iyGjhbWmsd_Gk38fwP07V1eWwiW0lXvVkcxwaW4ArAKniT-ouhX7z6gD85HKdDSd5-u4WD4LDo4bRrGn430YVS9028g33grt_MlG0ZTZWG3YgO9x3MAkgHHDjDFz5eM6ZS9WfxtY4f9eJQ" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="523" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Obi working on "Car and Birds"</td></tr>
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We have some young artists that have complex support needs, and Project Ability is one of the few places where they can come and express themselves. Some of our projects are designed specifically with those artists in mind.</div>
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<tr><td style="text-align: center;"><img alt="Create Workshop 4" height="334" src="https://lh6.googleusercontent.com/5iRDc4GHgH90-JKJpToGtHKUVEGAbqZJKUntiianY47BALhCWTdn2jp99cVlAheFz0MDS9hAmMFZWl_JwiCtFoy0T4mQq4QDTW6ECBDqMuFbXBxhPHahJcF3BNXtlxZNvxndVjMeRMsg149RyQ" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="480" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span id="docs-internal-guid-3d0c2b0a-fff4-14ae-e312-989d48718d65"><span style="background-color: white; color: #171717; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "times" , "times new roman" , serif; font-size: x-small;">Guy working with a super long brush on this large scale painting</span></span></span></td></tr>
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<span class="s1">The finished work from one such program, <a href="http://www.project-ability.co.uk/exhibitions/project-ability-presents-found-impressions"><span class="s7">‘Found Impressions’</span></a></span><span class="s8">, </span><span class="s1">went on to be exhibited in two galleries, including ours. Artists Guy and Gabriel have been with us for quite a while now. Their parents always join in the workshops, and our Saturdays wouldn’t be nearly as enjoyable without them. </span></div>
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<span class="s1"><b>Young Talent Exhibition</b></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img alt="IMG_4063" height="368" src="https://lh6.googleusercontent.com/c2bIU7bXPpQXvhZ0zwpEPXP39MpBqgkS98zOYTOjzjYwb_K7sJmnOFdiP9g4nqd9OeHFGUiWwT6Zm3__fnBXW_A5KXn1iZj9f7zs1VbcSR37GpucGDHaioUEwBsBBCkf8sjbyXAT4yJl9Qc8yw" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="553" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span id="docs-internal-guid-3d0c2b0a-ffed-5530-b163-64cf79495b1d"><span style="background-color: white; color: #171717; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "times" , "times new roman" , serif; font-size: x-small;">Collage mixed media piece in progress by Aidan</span></span></span></td></tr>
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<span id="docs-internal-guid-3d0c2b0a-ffed-0806-113c-72d4eef3ad2b"><span style="background-color: white; color: #171717; font-family: "century gothic"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"></span></span></div>
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<a href="https://lh3.googleusercontent.com/TeVLtnqgZj-n_vWyFZpHuCmSPD56Iep6R7L37gjxADCWl28si6NGZVy2icnh-XHPp8ixtK5wkSRqf3sCAELLKW3DCaOgG6UXMxo_XLDVMoib7Ug0_Kj-C6uIHsvANIKdX0BwvNaHnN43YpDKtw" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="IMG_7492" border="0" height="265" src="https://lh3.googleusercontent.com/TeVLtnqgZj-n_vWyFZpHuCmSPD56Iep6R7L37gjxADCWl28si6NGZVy2icnh-XHPp8ixtK5wkSRqf3sCAELLKW3DCaOgG6UXMxo_XLDVMoib7Ug0_Kj-C6uIHsvANIKdX0BwvNaHnN43YpDKtw" style="border: none; color: #171717; font-family: "Century Gothic"; font-size: 11pt; transform: rotate(0rad); white-space: pre-wrap;" width="400" /></a><span class="s1">Every summer our gallery puts on a <a href="http://www.project-ability.co.uk/exhibitions/young-talent-2017"><span class="s7">‘Young Talent’</span></a> exhibit. This year's is on July 8. Every young person that works with us is encouraged to submit a piece. </span><br />
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<span class="s1">Young Talent is now in its 8</span><span class="s9"><sup>th</sup></span><span class="s1"> year and has become a highlight of the calendar. </span><span class="s1" style="text-align: center;">A reception is held at the start of the exhibition for all our young artists, their families and support workers. Children run around proudly showing off their masterpieces to friends and strangers alike. For the most part, the young people really love to see their work on display, and you can feel the </span><span style="text-align: center;">happiness and excitement buzzing around the space. </span><br />
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<span class="s1">Young Talent is one of my favorite shows of the year. It covers so many styles and mediums. With dozens of artists, the show covers a lot of ground. There's no set theme because we don’t want any barriers to participation. </span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img alt="Create Workshop 8" height="378" src="https://lh5.googleusercontent.com/B9ez900dzaOKj-mROO7M9XHv3-Whb5KYeMZ9LhNhomEQekiDNROKk9jWPe7y7PcS56WF8IfSupDOXzhteLmNEonuD31h8aruZwc0aDn2FUxHMAI80CK9U953P3eGkJbkjHPpmXXyYXR8xI9jiQ" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="565" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Super Pink Abstract</td></tr>
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</div>
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<span class="s1">Young Talent 2017 promises to be as varied as the ages and interests of the artists. There are plenty of TV- and movie-themed works, including the Smurfs, Dr Strange, The Simpsons, Adventure Time, Godzilla, R2D2, Pocahontas and the Muppets!</span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img alt="Owen Scullion - Godzilla (2)" height="352" src="https://lh5.googleusercontent.com/HtWkkw9QF3SpMcFaTaBxRkcswU5Rf121sq3G4lF_tXpUAW_wheTOLVlmnXWT-PRq3jBPByvumJqduXsVl_GzqLXHMJ-9HSzngEoZ8vVY5WhzaTVLAID0yI4ZFs0K1Kt5SP6aXagqgk-ub166eg" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="449" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Godzilla, by Owen</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img alt="Ruth - Pikachu" height="343" src="https://lh6.googleusercontent.com/VRAhFS-nTOMXoL5WSQbWo43K8o9gleZ9Tf-c2clrsMYscxeDO8pae9BMmi_tL6_79o1uAtVIVdXtyU9s0UY9d93vlYtJqpz65f6F8F3QMjfBDuZTsUNI6FCBMZNfL6dhTStuYdn7TgQMSuRCcg" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="354" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pikachu, by Ruth</td></tr>
</tbody></table>
<span id="docs-internal-guid-3d0c2b0a-0008-0c0d-f1f4-ab54c8c056da"></span>Not all our artists want to exhibit their creations. Some choose to take their works home to hang on a bedroom wall or give away as a gift. Others may not want <i>anyone</i> to see their work and find a secret space where it will be safe and unseen. Some lose interest in the work once it's finished. Anything goes. Whatever the children make is theirs, and if they sell it they get a commission of 50%-60%. Project Ability keeps the rest. </div>
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<span class="s1">Being able to help encourage and empower others to enhance their quality of life through the act of making art and being creative is what Project Ability is all about. </span></div>
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<span id="docs-internal-guid-3d0c2b0a-fffe-9acc-8edc-47e20fc9b8e4"><span style="background-color: white; color: #171717; font-family: "century gothic"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"></span></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img alt="Ross Agnew - Untitled" height="268" src="https://lh3.googleusercontent.com/akfpNeQMJnvAz9GqE5HonNdJswtChyF5McZPgQ3OEAy5JEMSTPpYSiWbUK1SaXH7LcdY1LAp_y9iHiu1cxeuvf5Zn6Zctnc5c_TXaFPise5CiZEOPHcs_YfhY-zvo7R6nOoB37PNLYiTRjPwZg" style="border: none; margin-left: auto; margin-right: auto; transform: rotate(0rad);" width="400" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Untitled, by Ross</td></tr>
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<span class="s1"><br class="Apple-interchange-newline" />Please visit our website and/or follow us on Facebook and Instagram if you’d like to learn more about the work we do! </span></div>
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<span class="s6"><a href="http://www.project-ability.co.uk/">http://www.project-ability.co.uk/</a></span></div>
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<span class="s6"><a href="https://www.facebook.com/">https://www.facebook.com/</a></span></div>
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<span class="s6"><a href="https://www.instagram.com/projectability/?hl=en">https://www.instagram.com/projectability/?hl=en</a></span><br />
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<b>Text by Heather Lander, Exhibitions Coordinator at Project Ability</b></div>
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