Monday, May 1, 2017

The 2017 Felix Awards Go to Steve Silberman and Liana Finck

Ever since Felix was born, I’ve been dogged by the word disability, unable to come up with a decent definition. The more I think about it, the more universal it becomes, and the more I fall back on my suspicion that disability is simply the condition of being human, or maybe mammalian, or maybe just alive. The conventional view is less broad. Legal language tells us that disabilities are conditions that hamper essential “life activities” like working, talking, seeing, driving, taking a test, getting a date. My not being able to find my keys, whistle, think in a straight line, or remember my neighbor’s name may impede my life activities, but they don't weigh them down unduly. Therefore, I am not disabled. It's a question of degree. I understand that I’m not as disabled as my son, who needs other people and equipment to help him get from one place to another, and who cannot converse in conventional language. But where do we draw the line between cumbersome and crippling—and why do we insist on drawing this line? 

Liana Finck plays with these sorts of questions in her New Yorker cartoons and the marvelous charts, drawings, and questions that animate her Instagram feed. Take “Superman and Unexceptional Bird.” It’s the “unexceptional” that makes this picture so funny, and gets my mind churning. I wonder: If you were born with the ability to fly, and if you regularly fluttered up to the ceiling, annoying your teachers and parents, would your wings be deemed a cool super-ability, or part of a larger disability? 

Finck's work provides excellent, amusing tools for writing and thinking about the boundaries of weird and normal, and the conundrums of such divisions, as in this analysis of acceptable out-of-the-box-ness. Where do you fit into this chart? And which you? You as a son or daughter, as a juggler, as an essay writer, as an eater of macaroni? Recently, my 10-year-old daughter worried that her laughter sounded weird. Is she a quirky laugher, or an unfortunately outré one? Is there such a thing as “in the box” laughter? 

Liana also explores with great tenderness that feeling of not knowing where you stand, but having a feeling you need to stand somewhere--the loneliness and uncertainty of being caught between this and that. 


At Extreme Kids, we don’t concern ourselves much with diagnoses, partly because they can be arbitrary or socially determined. These days, for example, the wealthier you are, the more likely your child will get an autism spectrum diagnosis, and with it, greater chances of receiving services, support, and increased public understanding. The poorer you are, the more likely your child will be labeled emotionally or behaviorally impaired, or even shipped off to JV. But even if diagnoses were more of an exact science, and more justly acquired, we at Extreme Kids would not lean on them too heavily, for our desire is simply to bring together people who do not fit the mainstream mold. No matter what their diagnosis may be, we know of one way that we can help them all: accepting their difference and trying to figure out how to learn from and connect to it.

In his celebrated book Neurotribes, Steve Silberman has delved deeply into the shifting meaning of and history of one such diagnosis: autism.  In so doing, he provides much-needed evidence that autism isn't a new phenomenon, but has been observed over centuries by researchers in many countries--notably, Hans Asperger, who lived and worked in Vienna in the 1930s. Reading about the Children’s Clinic where Asperger worked is like reading about the sort of school many parents seek for their children today: a place of inquiry guided by openness, encouragement, and attentiveness to each student’s individual personalities and passions.  



Asperger and his colleagues understood autism to be a cluster of traits, including social awkwardness; a fixation on rules, laws, and schedules; difficulty with basic life skills like dressing, bathing, or proper table manners. These traits were shared by a variety of individuals, some precocious in the arts and sciences, others so hampered that they could not speak. Asperger didn't sugarcoat autism, but he also didn't view it as a deficit. Instead, he saw it as a type of intelligence. He once said, “for success in science and art, a dash of autism is essential.” This is because people with autism are often unaffected by conventional thinking, and approach subjects with a freshness and originality that eclipses those who are more bound by social mores. Asperger’s work was cast into shadows by the depravities of World War II and the professional rivalry of Leo Kanner, who viewed autism in a far more narrow and negative light. 

Silberman’s expositions of the personalities and backgrounds of the people who tussled and strategized over the definition of autism, and their place in medical history, is a clarifying reminder of all the “not science” that goes into science, and the punitive and political uses to which medical science has been put—from institutions for “Insane Indians,” where rebellious Native people were kept in chains, to the claims of eugenics, variations of which we still struggle with today, to the psychological damage wrought by clinicians like Bruno Bettleheim, who popularized Kanner’s brand of autism in bestselling books and articles that considered autism a “suicide of the soul” caused by loveless parents. 

On a practical note, Silberman’s book explains the bureaucratic and pragmatic reasons behind the rising numbers of children diagnosed with autism today, breaking down some of the fear and misunderstanding caused by these numbers. If you haven’t seen his TED Talk on the subject, do! 


Both Liana Finck and Steve Silberman are wonderfully deserving of a Felix Award, and I am looking forward to meeting them on May 25 at Extreme Kids & Crew's annual benefit.  If you are in the New York City area, you can too! There’s no ticket. You just have to donate to Extreme Kids & Crew’s Build to the Bronx Spring Campaign.  Once you do, you will be automatically invited to the Felix Awards. Ours is not a rubber chicken gala--it's a night of dancing, celebrating, and thinking about what makes us different and the same.  I am proud to add that it has been dubbed Extreme Fun by Vanity Fair’s Agenda!

Even if you can’t come, please consider donating to our campaign—all money goes to creating and maintaining safe, creative, flexible playspaces, where families with kids with all sorts of disabilities congregate, explore, and celebrate themselves, together. 

Tuesday, March 28, 2017

The Glass Menagerie

The Glass Menagerie put Tennessee Williams on the map, launching him from near-nobody to internationally celebrated playwright. Lavishly praised by critics and embraced by audiences when it premiered on Broadway in 1944, Menagerie has long since become an American classic. It has been revived on Broadway alone seven times--at least once a decade since the 1960s. But only the current revival (at the Belasco Theater through early July) has featured a disabled actor in the role of Laura Wingfield, the young woman who, following a bout of pleurisy as a teenager, has been left with a limp and very low self-esteem.

Julieta Cervantes
That the role is usually cast with non-disabled and often conventionally beautiful actresses (Calista Flockhart and Celia Keenan-Bolger played Laura in two recent Broadway revivals) isn't terribly surprising. Broadway--really, American mass entertainment in general--has a long history of boneheadedness when it comes to any kind of difference, starting with, oh, blackface minstrelsy, wending past every white actor in an Asian or Native American or Latinx role, pausing to wave along the way at myriad straight performers playing gay or trans people, and tipping a hat at all the thespians who've won awards for stuttering, contorting, looking vacant or vaguely crazy, or learning how to sit convincingly in a wheelchair. I suppose if mass entertainment's most indelible portrayals of disability continue to hover somewhere around Forrest Gump territory, then hiring a person with an actual disability to play a character with something as seemingly slight as a bum leg is hardly a cultural priority. But in casting Madison Ferris, a 25-year-old woman with muscular dystrophy, director Sam Gold upends the longstanding interpretation of Laura as a trembling waif so emotionally fragile and physically scarred that her psyche can be pulverized by a single dashed chance at love and a little broken glass.

Williams described Menagerie as a "memory play," and in it, he recalls his life with his doting if overbearing mother, Edwina, and his beloved older sister, Rose, whose struggles with schizophrenia ended with a botched lobotomy and subsequent institutionalization. Williams's alter ego, Tom Wingfield (Joe Mantello), narrates Menagerie, looking back on his youth as an aspiring writer supporting his mother and sister with factory work. Before he follows in his father's footsteps and splits for good, Tom sneaks off nightly to drink, watch movies and--at least as I read it--enjoy the occasional furtive tryst with other closeted gay men. Amanda Wingfield (Sally Field), Edwina's alter ego, is a bitter, aging southern belle who traded status and upward mobility for a marriage to a charming, philandering alcoholic. When the play begins, Mr. Wingfield has been gone 16 years. Amanda, still reeling from the abandonment, struggles to get by in a small, dumpy St. Louis apartment where she simultaneously dotes on and resents the hell out of her two grown children.

Julieta Cervantes

In Williams's rendering, Laura's limp has left her even more awkward and shy than she was before she got sick. So anxious and self-conscious that taking classes or seeking work causes her to become physically ill, she spends her days listening to old records, wandering around town and playing with her collection of tiny glass animals. Her experience hardly plays into Amanda's near-obsessive desire to marry her off to the kind of handsome, successful man she long dreamed of for herself.

It's easy enough, then, to pair the fragile, diffident Laura with the driving, manic Amanda, which is how the show is often staged: mother becomes the emotional mouthpiece for the stunted daughter, who wants for herself what her mother wants for her. But Gold doesn't do that. An expert in family dynamics (he won a Tony for his direction of Fun Home), Gold subverts the play into one that speaks volumes about living with disability. His is not a traditional adaptation; the action here is taking place in Tom Wingfield's head. The production is starkly lit, sparsely set, often weirdly dreamlike, and at one point it rains, soaking the actors.

Some have accused Gold of exploiting disability for cheap effect. But as the mom of a special kid who hangs with parents of special kids, I'm here to tell you: This is a production that gets us.

In the opening scene, Tom bounds up a set of stairs and onto the stage. Amanda and Laura don't have it quite as easy: Mother drags a wheelchair, while helping her daughter negotiate the steps. Ferris is a wonder of strength and flexibility, and her meticulous progress up the stairs involves hands, legs, butt, and some remarkable folding. Gold stretches the moment to let Laura's efforts sink in.

Laura's disability is woven into life in the Wingfield household. I wish I could bottle the way Field's Amanda chats amiably on the phone while absentmindedly helping Laura, who is splayed on the dinner table, work through a series of PT exercises. These moments may challenge some audiences' expectations, but they're hardly exploitative. Laura's getting the treatment she needs, moving how she needs to move. In a world that wasn't designed with her in mind, that takes effort.

We notice how Laura moves because her moves are unique. Gold often has Mantello and Field sit cross-legged or in a kneeling position, as Ferris does when she's not in her wheelchair. The positions, which seem natural for Ferris, don't look terribly comfortable for other two actors, but families in close quarters can't help but pick up on each other's habits.

Because Amanda and Tom love Laura, they see her not as a collection of symptoms, but as a daughter and sister. This is something that's overlooked by many people who don't live with disability--people who stare at disabled kids or pity them, who call their parents "saints" for simply loving and raising them. In this version of Menagerie, Sally Field's Amanda comes off as less deluded than sad, a slightly broken, outspoken woman who loves her children and can't for the life of her understand why everyone else doesn't, too. She's sometimes a little inappropriate, but then, whose mom isn't?

When I saw the show, a few spectators snickered at Amanda's repeated, hotly defensive insistence that Laura was "not crippled." But when you love someone, you don't see them as a diagnosis--which is why I sometimes need to step out of myself and contemplate my son from a clinical distance or seek an outsider's perspective. I love him so much that I sometimes need to remind myself that he's not like other kids. I love him so much that I sometimes forget to see him. Amanda sees her daughter's beauty, the care she puts into her collection of glass animals, her potential. Her wheelchair? That old thing? What's the big deal?

Ferris's Laura is no shrinking violet like so many other Lauras are. She's more of a levelheaded badass than many Williams women--less a flighty, fluttery Blanche than a pensive, stolid Stella. This may frustrate purists who want Laura to have a quietly measured breakdown after the Gentleman Caller (here played beautifully by Finn Whitrock as both dim and bighearted) accidentally breaks her favorite glass animal (a unicorn, natch!). But Ferris makes a warrior of Laura: She controls of what she can and enjoys a fulfilling inner life, ultimately possessing far greater insight into the ways of an unfair world than her mother can. This upends the mother/daughter dynamic typical of The Glass Menagerie revivals, and if that bothers you, skip it. Maybe go see Phantom of the Opera.

Me? I'm hoping to return to catch Ferris' defiant reaction when Mantello's Tom, still haunted by memories of Laura, wishes aloud for her to let him be.

Tickets for The Glass Menagerie are available for deeply discounted prices on TDF.ORG and at TKTS booths for day-of sales. You can also pay full price on the broadway.com website, check broadwaybox.com for special offers, or try your luck with the TodayTix app.

Liz Wollman is associate professor of music at Baruch College, CUNY, and serves on the doctoral faculty of the theater department at the CUNY Graduate Center. She writes a lot of academic books and articles about the musical theater, and also contributes frequently to the Show Showdown blog. She's married to Andy, who edited this piece, and is the fiercely proud if occasionally inappropriate mom to Paulina and Philip. She's also an Extreme Kids & Crew board member, which makes her very happy.   

Wednesday, March 1, 2017

The Trembling Answers

A review by Eliza Factor

Do you ever have moments when you are brushing your teeth and realize with a sudden clarity that you have teeth, that they bite into flesh, that they are intricately shaped and rooted, that they are composed of such minerals as phosphorus? Phosphorous! Element number 15, blasted out of supernovae and glowing in the ocean. You are elated.  You want to celebrate this amazement with everyone you love, or at least someone you love, but by the time you’ve gotten the kids off to school, your mind has moved on to IEP meetings and dinner plans and the senator whose office you need to call. When you talk to your friends, all that comes out are goals and opinions and scheduling details.  Nor can you share your sense of wonder with your daughters.  You have learned from hard experience that they no longer want to talk about exploding stars unless they initiate the conversation.  And so your moment of delight sours into a nub of loneliness.  


If this sounds familiar, then you may find yourself consoled by Craig Morgan Teicher’s latest book of poems, The Trembling Answers (BOA Editions, Ltd.). Upon reading it, my mind probably leapt to toothbrush-centered revelations because his poetry rests so deeply in the quotidian and domestic.  His tools of day-to-day maintenance are all the more pressing and beautiful because in many of these poems the body being maintained is that of his son, born with an acute form of cerebral palsy.  A boy whose hand is “soft as tracing paper,” whose life is integrated with and dependent on “a certain amount of plastic,”  whose tending includes catheters and feeding tubes. Teicher’s sense of being encumbered and enlarged by his children is one I know well, but the way he turns these feelings into poetry is more mysterious.


I love these poems for their wit and kindness, their slaps of awareness, and their essential honesty about the limits of awareness.  It was difficult to select just one, for almost every page manages through mumbles or digs or sly appraisals to get at the sheer, lovely, agonizing beauty of it all.  But “Self-Portrait Beside Myself” is so very perfect for Broken and Woken, that perhaps it wasn’t that hard after all.


Self-Portrait Beside Myself


We’ve been lucky—March is over
and my son is still alive. My daughter
is about to crawl. And the golden
sunset light recalls
distant childhood light.
I feed my son while he sleeps
through a hole in his tummy
when the night nurse
has the night off,
and when I go to the mirror
it’s to see if the ocean-eyed man
the teenager I was had hoped to become
is anywhere in there.
The teenager is; he wants you
to see him, help him, tell him
he’s strong and gently
dramatic. He wants
to be part of a story, even
if not a true one. He wants
to fuck like mad,
even if I don’t. Standing over my son
at night, I feel quiet, only then,
no need to be me or anyone,
just listening to him breathe.
I can divide all life
into breath and waiting
for the next breath, and
the calm in the troughs
between. I wanted
to show you I could see the world
without me in the way; I can’t, not
even for a little while. I’m beside
that man watching over his son,
impressed with him and his humility.


But if that’s what it takes,
to keep my son safe—admiring
my better self rather than
being him—then ok. That’s ok.

Reprinted with permission from Craig Morgan Teicher.  The Trembling Answers may be purchased on Amazon or through his publisher, BOA Editions, Ltd.   

Wednesday, February 1, 2017

Definitions for Kids

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.
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 inevitably 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 Hemiplegia Cerebral Palsy, I was ready.
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, Yeeehaw! Please email me at… 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.
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 wanted and tried 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 and change my socks! I can’t change my disability.” You’re right.
But here’s another secret: you can change how you think 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.
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 all the answers to the universe (not really).
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.



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." 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. 


Sunday, January 1, 2017

Yahaira's Words

I met Carmen, her husband Alex and their daughters in 2012, when I oversaw Space No. 1. That was Extreme Kids & Crew’s first playspace, a comfy room on the first floor of the Coop School, which we repurposed into a creative haven for families who had children with disabilities.  Yahaira was then 4, her older sister, Luz, was 9, and Milagros was a little baby.  Carmen had found us because of Yahaira, who did not communicate with language.  Instead, she announced herself with the brightness of her eyes and the speed of her movements. She was lucky to have an older sister in Luz, who was articulate on her behalf.  Both girls wore their hair in glossy black braids that whipped in graceful arcs when they jumped into the ball pit, or dangled down and brushed the big wooden art table when they sat to draw pictures. I enjoyed talking with their mother, Carmen, but we didn’t have much time as she was busy tending to her daughters, guiding them and giving them tools to play and express themselves.

They lived in East Harlem—a real trek from Space No. 1, which was in Bedford Stuyvesant.  But they made the trip often, and I was always happy to see them.  They were the sort of family that knew exactly what Extreme Kids was about—having fun and celebrating each other, regardless of quirks and oddities.  

When we moved to Red Hook, a more remote neighborhood in Brooklyn, the trip became too difficult for Carmen’s family. I didn’t see them in person anymore, but occasionally their pictures would pop up on my Facebook feed, cheering me.  Not long ago, Carmen posted a note, written in a child’s hand.  It was by Yahaira! She had begun to write.

The day after the presidential elections, I stumbled around Manhattan’s drizzly streets, mulling over how the shift in political power could hurt people with disabilities, people in general, and the earth upon which we all live.  My fellow pedestrians seemed to be in the same somber mood. Indeed, it seemed that we had all been hit with an unsettling medical diagnosis at the same time. When I got home, I checked my Facebook feed and noticed that Carmen had posted a picture of Yahaira. On hearing that Trump had won, Yahaira had spoken. “Hillary doesn’t give up,” she said. “We must never give up.”

“Never give up.”  I couldn’t think of a better message or, for that matter, a better person to deliver it.  I contacted Carmen and asked if I could visit.  I wanted to see the whole family, and I wanted to hear Yahaira’s voice for myself.

So it was that towards the end of November, on a rainy Tuesday afternoon, I took the Number 4 train up to 125th Street and slurped through the puddles to the seventh floor of the highrise apartment building where they live. Carmen greeted me cheerfully and led me into a cozy apartment with paper cutouts of leaves decorating the living-room window.  Her mother and brother were there, watching Spanish-language soap operas, and Yahaira was just home from school.  She had the same glossy braids that I remembered, and her sneakers lit up with different colors every time she stepped. I asked her if she had anything to tell me.  She said “nothing.” I said I’d love to hear what she was up to, and she said, “I’ll tell you after lunch.”

I talked with Carmen as Yahaira spooned her soup at a table by the window.  Yahaira is now nine years old, and Luz, who would soon return from school and show me her charming sketchbook, is 14. On learning that Luz attended Trevor Day School, a competitive independent school on the Upper East Side, I congratulated her mother.  Carmen gently shook her head.  “I didn’t get her in,” she said, smiling.  “She did.”

Yahaira is in a public District 75 program at the Mickey Mantle school on West End Avenue, where she has thrived in an 8:1:1 class. She
Carmen and Yahaira
speaks both in English and Spanish.

I asked Carmen my standard question about disability: how would you define it? Carmen frowned.  “I don’t like the word,” she said, after a while. “You are saying the person can’t do something that someone else can do, but they can.  Just in a different way.  Maybe you have to tweak it, or understand it differently, or slow down.  Maybe you have to be patient.” She told me that she doesn’t usually say Yahaira has disabilities or that Yahaira has autism.  “She has all kinds of abilities.  Her memory is awesome.  We all have things that we struggle with, it’s just that with some people you can tell, and some people you can’t.”

I asked Carmen for a recent wonder.  She told me about her last parent-teacher conference at Yahaira’s school.  The teachers had told her they thought Yahaira was ready to move on.  Every quiz she’d taken, she’d earned a 95 or 100.  The teachers showed Carmen things Yahaira had written, her ideas spilling out on the page, in legible handwriting.  “I was bawling,” she said. She loved the school and didn’t know if she was ready to leave it. But, apparently, Yahaira was.

Yahaira finished her soup and came over holding her iPad, which Carmen had procured through an Autism Speaks program that grants tablets to families with limited incomes.  I asked Yahaira what her favorite apps were.  She turned the camera to herself and showed me what the various filters did to her face: funhouse mirror effects, halo-like radiations, one with bright psychedelic colors that brought out the bones in her face.  “Scary,” I said, because in the picture, she had taken on the appearance of a many-hued skull. Yahaira disagreed: “I’m in the beautiful colors of the rainbow.” Then she demonstrated how to make an image of herself into a movie. She told me she was going to be a director.


I asked her if she had anything she’d like to say to other children, particularly those children like my son, Felix, who have a lively intelligence but do not have language.  She got on her mother’s lap and said, “Time for hugs.” Her answer resonated.  Hugging is one of the chief ways we communicate with Felix.  When he was small enough that I could lift him easily, we’d sneak in hugs throughout the day.  I grew to treasure transferring him from his car seat to his wheelchair, the way that his arms would hook around my shoulders, and his chest press close to mine.  The memory of those hugs brings me courage, as do Yahaira’s words.  I'll be carrying them with me, into 2017.

Thursday, December 1, 2016

My Brother's Keepers

As a gay kid growing up in Upstate New York during the 60s and 70s, I had to hide -- from everyone, including myself. It wasn’t until I came to New York City in the late 80’s that I was finally able to admit I was gay. I was fortunate to have the support of family and friends. In fact, my younger brother Marty is also gay.  Aimee, his twin, is straight. She and Marty, like my mother, both have degrees in special education. Our youngest brother, David, is severely disabled and was born with multiple birth defects. He has always needed us to support and advocate for him, and that has made us stronger.

David’s disabilities and our advocacy on his behalf form the axis around which my family turns. His is the birthday we all worry over; his are the holiday gifts we fuss to create. We make certain he gets many, because it frustrates him to watch other people open things. Then again, he never seems to care much about what’s in the packages; tearing them open is the fun part. And we have always loved watching him go at it with abandon. So we fuss.  

Mom and Dad worked hard to create a positive environment for David. Fussing over him is what the holidays are about. I’ll never not have the holiday spirit while David’s in the world. I can’t talk about caring for him always being a blessing necessarily, because it’s not, given some of the troubles my family has had in creating the kind of environment David needs. But I do know that our advocacy on David’s behalf has fortified us all.   

We were all still kids when David entered his first group home. My parents always encouraged the people working around and for him to grant him some control of his environment.  His toothbrush, his underwear, his bathrobe, his Reeboks, his suave slippers are special to him because they’re his. Either at our family’s home or his group home, they make up his world.

Advocating for David was always second nature to me and my siblings and, in some ways, it still is.  David uses one- or two-word phrases to ask for what he wants. He can’t tell us how he feels, so he usually focuses on simple needs. He might point to the refrigerator and say “Diet Coke” and mean, “Hey, is it okay for me to get a Diet Coke, now?” The caffeine in some drinks makes David upset or anxious, so we usually get the decaffeinated kind so he can have as much as he likes.

As little kids, we always knew how David was going to feel about a situation before he did. We were careful to redirect him when he went through phases where he was terrified of Santa Claus and the Easter Bunny. As kids at the mall, we’d spot the costumed character of the season and turn David toward something else we knew he’d love: a soft-drink stand, or anything related to sports or music.  

Music is a force for good in David’s life. He’s got his own headset, programmed with his favorite tunes that he wears around the house.  He loves Billy Joel, the Carpenters, John Denver, all the “Star Wars” music and Donna Summer (my influence). He loves TV shows with music and lots of action. Sports, too. He loves “Hee-Haw!” and, with modern technology, we’ve been able to get him a great collection of his favorite shows: “The Brady Bunch,” “The Partridge Family,” and all versions of “Star Trek.” The sounds of these shows and songs make David feel safe and cared for, but most importantly, they allow him agency: he can request his favorite things and have some control over his world.

When my parents passed away, David was relocated to a home farther upstate, closer to Aimee. He spends birthdays and holidays at her house with his adoring nieces and nephew. It’s a good life—his family makes certain of that, as do the wonderful folks in the world of special education and housing in New York State.  

“We all have the capability to create our environment so that we feel either safe or satisfied, or just not bored,” Aimee told me on the phone the other day.  “David doesn’t have that capability, that luxury. He needs our help.” Aimee, Marty and I are our brother’s keepers. We keep his environment healthy and whole.  But then, David is our keeper, too. For all the struggles the family has endured, advocating for David has made us closer, wiser, tougher. Wanting David to have the best life possible, the best environment possible, has not only helped us pursue our personal goals, but also made us capable of advocating for our own best worlds, lives, and environments.  

Tuesday, November 1, 2016

Jess and Jeremy on Unseen Disability

Jess looks and acts like a typical, healthy 29-year-old female. She rides her bike nearly 50 miles a week, participates in dragon boat, has a degree in environmental science, volunteers for multiple organizations, takes care of our dog and reads a book a day. Jess is disabled.

When people hear the word “disabled,” they immediately think of someone who can’t walk, or hear, or perform simple tasks on their own. Jess can do all those things and more, but she was diagnosed with cystic fibrosis, and received a double lung transplant over six years ago. 

For the most part, her disability doesn’t prevent her from doing things that she loves to do, though it hinders her in other ways. She wears a pain patch on her arm because without it she would be in constant pain. She takes a pill before every meal to prevent stomach pain, which sometimes happens, anyway. She feels enormous pressure to overcome that pain, to overachieve and satisfy everyone, which leads to stress. Her stress can cause bouts of pancreatitis. It starts in her abdomen and works its way around to her back. The pain is so severe that it usually puts her in the hospital for two to three weeks. 

A lot of people don’t get it. They don’t understand how someone who looks so healthy and acts so “normal” can be disabled. I suspect a lot of people don’t fully grasp what she’s gone through already, and what she goes through every day. They would never suspect the feeding tube in her stomach or the port in her chest. They see her smiling and laughing, but don’t see her take 50 pills a day. They see her running and biking, but don’t see the pain she sometimes experiences after eating something as small as a chocolate bar. 

Our friends don’t get it. They’re puzzled when we go out to dinner and she only eats half her meal. They’re confused by the bruising on her legs. They think she’s clumsy, which isn’t entirely false, but they don’t know that it’s a side effect of her medication. They’re disappointed when we have to cancel plans or leave an event early. They think she’s flaky or not committed, but in truth, she’s often on the couch in agony while everyone else is having fun. 

I admit that I understand where our friends are coming from; sometimes, I don’t get it either. I’m confused when she suddenly needs help with things I’ve seen her do hundreds of times. I’m baffled when we’re sitting on the couch, and she goes from a state of calm to one of pain in a split second. 

Here’s what I do know; Jess is strong. She laughs when I tell her that and asks me what choice she has. She has a point: if she didn’t take all those pills, work out to stay healthy and occupy her mind with work and books, she would not be with us today.

Jess doesn’t like people to know she’s disabled, because the term has such negative connotations. She doesn’t want pity and she doesn’t want people to think she is using her health as an excuse. She wants you to think that she lives just like you.

Cystic fibrosis is called “the invisible illness,” which is fitting. You couldn’t pick a person with cystic fibrosis out of a line-up. I certainly didn’t know it when I first met Jess at a mixer event. We immediately hit it off and talked for over two hours, ignoring everyone else around us. I didn’t even know after our first date: dinner, a movie and a stroll around an outdoor mall. But had I known, it wouldn’t have changed anything. I’m lucky—blessed, really—that she chooses to spend what time she has with me. It’s not always easy, but it’s always worth it. 

I interviewed Jess for Broken and Woken, and to follow are excerpts from the conversation we had. 

How would you define your disability?  If I defined anyone by their disability, that would tell me nothing about their true self.  People often say they aren’t defined by their disease, and I’d have to agree.  I’m a nearly 30-something active volunteer, dragonboat-paddling, jewelry-creating, ice cream-craving dog-mom and loving partner to my fiancé. But between the cracks, you’ll find a chronically ill patient with a limited lifespan.  I’ve had cystic fibrosis since birth and had to have a double lung transplant when I was 23 because the constant lung infections had destroyed them beyond any other treatment.  I am also diabetic and experience daily pain because of my damaged pancreas.  I’ve always searched for normalcy in life, and currently feel as normal a young adult with chronic illness can.

Do you have contact with other patients with the same disability?  When I was waiting for a double lung transplant, the Internet became a wonderful place for me to talk with other individuals with cystic fibrosis. Because two people with CF can spread their infections with each other, it is frowned upon to meet in person. However, I find that the benefits of knowing someone in real life far outweigh the consequences and having normal working lungs helps assuage any fears of cross-infection. I have quite a few close friends that I visit with regularly.  I still have my connections with cystic fibrosis and lung transplant online, but I honestly cherish my real life experiences more.

Do you consider yourself disabled?  According to the government and my insurance companies, I am disabled.  Most days, I do not feel disabled. My life is fairly typical when I am not in the hospital with pancreatitis, a consequence of a lifetime of cystic fibrosis and medications.  I have a loving fiancé, a dog, many friends and hobbies.  Sometimes, as odd as it sounds, I wish I had a career in my field of study. After my transplant, I finished two bachelor’s degrees and even was accepted to graduate school in Raleigh, NC for hydrologic sciences.  Unfortunately, a full-time job could be a deadly future for me.  I would need a full-time job in order to get insurance and the lack of time for medical appointments and the amount of stress I would incur on a daily basis would leave me in the hospital much more often than I am there now. I cannot be self-sufficient, and that is difficult for someone who craves independence.

What would you say to those in your situation?  To other disabled individuals, I would let them know they are not alone in trying to find identity in the term “disabled”. A little bit of denial goes a long way.  Try your best to live as “normal” a life as you can, outside of your illness or abilities. Work, find love, raise a family (or just dogs), discover new hobbies and love those closest to you.



Jeremy Lambert is a freelance writer who enjoys spending time with his fiance, dog, and computer.  When he's not writing, he's probably yelling at the TV during sports.  You can check out his work at wordsonapole.com