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.  

Happy Holidays.

Bill Crouch is David Crouch’s older brother. He lives in New York City, has a few degrees and writes theatre reviews (sometimes). Like his brother David, he misses his family (always). 

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. 

How Special Sounds

By Danielle Boyce

It's too early to say there's anything wrong with him.

It's just teething.

It's just a growth spurt.

It's probably nothing.

Try to catch it on video.

Sometimes moms get nervous.

Have you been checked for postpartum anxiety?

The price of that drug is so high that we don't offer it here for ethical reasons.

He won't need early intervention.

We didn't properly review the first MRI.

One hundred seizures per day is your new normal.  Unless he has more than that for ten days straight, I don't want to hear about it.

That kind of surgery is not for kids like him.

He is not sick enough for nursing services.

He is too sick for day care.

He doesn't qualify for speech therapy because he can't talk.

I call the spasm seizures "Superman seizures" because their arms go up.  It's a cuter way for my patients' parents to look at it.

I think a three-piece puzzle is an unrealistic goal.

I wish I was that flexible.

Did you know when you were pregnant that something was wrong with him?

I know exactly how you feel.  My dog had seizures.

Will he grow out of it?

Your claim has been rejected.

Your request has been denied.

He is no longer seeing new patients.

Fill out this form.

We need more documentation.

He has been dropped from...

We no longer cover...

If he is hungry enough, he will eat.

How long do you think he will live?

What are those toxic medications doing to his body?

I only feed my child organic.  I hate to even give my child Tylenol.

Did he even notice you were gone?

Why don’t you just leave him at home?

Are you going to put him in a home?

If you have insurance, why do you need a fundraiser?

Did you take any medications during your pregnancy?

Do you think your age when you had him had anything to do with it?

There is a six-year wait for that benefit in this state.

If you fail three medications, the odds of anything working are almost nil.

We don't think he really has autism, but it's the only way to get services.

Can he talk?

Can he walk?

Can he feed himself?

You don't qualify for the study.

We can't watch him by ourselves.

That drug isn't legal in this state.

Just Google a list of approved private schools and visit all of them.

We can always go back in again and take out more of his brain.

Why does he drool so much?

Is he retarded?

Would you like to participate in a study?

Have you gone to Dr. Rockstar?

We no longer accept your insurance.

Please send in diapers and wipes.

Technically, it's a wheelchair.

He looks so normal.

...but we don't have one at this school.

...but we don't have one in this county.

He's doing great...for him.

Are you going to wear purple today?

Are you going to the epilepsy walk?

Do you think it's helping?

Even if we do find a mutation, there's a good chance we won't know what it means.

...but they are not allowed to change diapers.

Most kids with infantile spasms don't do half as well.

You have to be at home to sign for it.

He's too old for...

He's too young for...

The attending will stop by and then we will try to discharge you sometime today or tomorrow.

Too bad you don't live there.

Have you ever read Flowers for Algernon?

Please help.  

Please hold.

You are in my prayers.

You are such a good mother.

He's adorable.

We love him here.

The noise doesn't bother us.

We have some extra clothes that might fit him.

We will keep inviting you.

Just tell us what to do.

I will help you to get into the free diaper program.

Would you like to come over for a play date?

There are plenty of things we haven't tried.

He is my favorite patient.

We are thrilled with his progress.

Isn't he just delightful?

He is so smart.

He is just frustrated because he has trouble communicating.

We would love for you to come tell his story.

You are right.

Don't apologize.

I would be upset, too.

Let me see if we can squeeze you in.

I am so lucky to be his teacher.

He used his words today.

You must be working so hard with him at home.

How are you today, Charlie?

We are learning so much from him.

How is your other child?  Can I help her in any way?

You inspired me to hold a fundraiser.

I am proud to be related to him.

I shared your blog post.

Look how far he's come!

Great job, Mom!

He is perfect just the way he is.

I've been a neurologist long enough to know that I don't know everything.

We will cross that bridge when we come to it.

You can do this.

There's no shame in asking for help.

Scientists are making breakthroughs every day.

Your quality of life matters, too.

Let me ask my colleague what she thinks.

I know another parent who would love to talk to you.

I am so impressed with how you have handled all of this.

I will never look at kids with disabilities the same way again.

Hold on just a little while longer.

I am so sorry you are going through this.

I will sit right here and answer all of your questions.

We know you love Starbucks so we got you a gift card.

We will watch him so you can get your hair done.

You can work from home.

You can join us by phone.

I've been reading up on epilepsy.

I will run to the drug store and pick up his prescriptions.

We will send dinner to the hospital.

You're doing everything right.

This isn't your fault.

You could not have prevented this.

Let me change his diaper.

Would you like to talk to the social worker?

That doesn't sound right. Let me try to fix it.

I will schedule that for you.

You qualify.

You are eligible.

Let me take them for a few hours so you can have time alone.

My mom asks about him all the time.

I'll come to you.

He did great today.

He is such a funny kid.

Both of your children always look so nice.

Your request has been approved.

Let's have a girls' night at your place!

The case worker can handle that for you.

I have seen much messier homes.

Thank you for your help.

You're the expert.

He's your child.

Danielle Boyce is an award-winning advocate, clinical researcher, public speaker, and writer.  Her work has been published in dozens of scientific journals.  Her special needs-themed children’s book, Charlie’s Teacher, is used in children’s hospitals throughout the country.  Danielle’s blog, www.specialneedslifestyle.com follows her journey as a mother of  a son who had infantile spasms and two brain surgeries. She is the founder of Neurology Parent Professionals, a networking group for researchers, clinicians, and nonprofit executives who have children with neurological conditions.  Danielle holds a Masters in Public Health with a concentration in epidemiology.  She is the 2015 winner of the Child Neurology Foundation Hope award and the 2015 recipient of the Lundbeck Your Partner in Epilepsy award.  She has served on the Board of Directors of the Lennox-Gastaut Syndrome Foundation, is a caregiver liaison for CURE’s Core for Precision Medicine, and is a member of the Steering Committee for the Rare Epilepsy Network.  She serves on numerous caregiver advisory boards for prominent researchers and is an FDA patient representative for pediatric epilepsy.  Danielle is the Director of Translational Research at The Brain Recovery Project and has worked as a Senior Research Data Analyst for Johns Hopkins School of Medicine since 2007.  She lives in suburban Philadelphia with her two children, Ryan and Charlie.

The Challenge Bed

by Kevin Kinsella

One of my daughter's therapists told me

she was glad her work was challenging.

Because if it wasn't challenging,

she would likely be bored and unhappy.

So when I told her that I felt otherwise,

that I would rather that she be bored

and if not unhappy then less happy

and certainly less challenged

than she seemed to be with my daughter,

she disagreed vigorously, insisting

life is too short to avoid the tough stuff,

that she liked going home to her husband

and telling him about the challenges of her day,

Because who wants to hear about how easy it was?

And that was one of the things he loved about her,

that she liked to be challenged so much,

that she never shrunk away from a challenge,

never took the easy way out and, believe me,

he is quite a challenge himself.

But she wouldn't have it any other way,

because It's not about where you want to go

it's about the bus you take there. You know?

Then I imagined how wonderful their life must be – 

the two of them slipping into bed together:

He turning to her, whispering, How was your day?

She, welcoming his challenging yet tender embrace,

Terrific, I met a little girl who can't walk.

photo by Micaela Walker

Kevin Kinsella is a freelance writer and poet. His work has appeared in/on The Believer Magazine, Bomb Magazine, Tarpaulin Sky Magazine, Pif Magazine, and 2River View," among others. He is the translator (from Russian) of Sasha Chernyi's "Poems from Children's Island" (Lightful Press) and Osip Mandelstam's "Tristia" (Green Integer Books).

Micaela Walker is a photographer and freelance photo editor who has worked for Cosmopolitan, Seventeen, Allure, Lucky, Black Ink, Departures, Food + Wine, The Women’s Refugee Commission, Nomad-Chic, and the Go Vap Orphanage in Vietnam.  Her blog is roan and lula.  She serves on the board at Extreme Kids & Crew. 

Sunday, Early Summer

5:30 am.  I hear a familiar squeaking hinge and heavy uneven footfall.  Martin's up.  I wait for him to show up in our bedroom doorway, knowing that even if he doesn't appear, I'll have to get up and figure out what he is doing.

5:45 am. Back in bed. Maybe Martin will go back to sleep. Probably not. He was sitting on the toilet when I got up to look for him, but he didn’t have to go and seemed disoriented but fully awake. I told him to “rest” in his room “for a while.” Maybe he’ll play with his wooden trains. It’s happened before.

6:28 am. Thudding steps in the hallway. I’m up. “It’s not time to get up yet,” I try, guiding him back to his room. I stumble back to bed, glowering now. How does Jeff sleep through this, I think, not for the first time, as I nod off again.

7:15 am. Squeak. Thud. THUD. OK, enough. Martin is standing in the doorway. “Shower,” he says. I guess I’m up. “OK. Shower,” I say. I stretch out on my back and squeeze my eyes shut. I will savor every moment in this bed while I can. I hear the shower turn on. He’ll relish the hot water and steam for at least five minutes, I think, pulling the sheet up under my chin. After that, who knows? He’s been known to splash water all over the ceiling and walls or to squeeze gobs of shampoo and conditioner on the tiles, making a slippery, hazardous mess for the next person who stumbles in there not fully awake. Like his brother, who I am now picturing unconscious on the bathroom floor, having slipped on an invisible slick of Pantene. Shit. I’m up.

7:30 am. “OK, Martin, turn off the water,” I say. I am holding open his big red bath sheet, just like I always do. He complies, and I wait a moment before opening the shower door, watching him as he stands quietly in the warm fog. Then I open the door. He starts to script something under his breath as I tousle his wet head and wrap him in the towel. I can’t quite make out the words, but the volume gradually increases until the last syllable, which he shouts. Loudly.

“Martin!” I scold, but before I have a chance to give him a directive, he is mumbling something again. Something very similar, getting louder and louder and then, he screams. A sustained, ear-splitting shriek.

“Quiet voice, Martin,” I say sharply, “Keep your voice—” [Scream] “Martin, you must stop.” I usher him as quickly as I can out of the bathroom, through the bedroom [Scream], down the hall, and into his room. “Martin,” I say, trying to get his attention, “Martin, look at me.” I point to my nose to direct his attention to my face. Usually he points to his own nose, gives me a fleeting glance, listens. Now he looks past me, continuing the tape loop, something about Mater and the Ghost Light, then [Scream].

“No YouTube!” I announce, playing the only card in my deck, the one incentive that has always worked. The promise of YouTube motivates Martin to comply with almost any request, even hours in advance. He pauses. “YouTube!” he demands. “Yes,” I reply, “First no screaming. Then You—” [Scream]. “Martin!” He does not register what I’m saying. His whole body is caught in the loop of a script he seems compelled to repeat. He turns slightly away, steps forward, nods, mumbles about Mater and the Ghost Light. [Scream]. This time he holds the shriek, his whole face going red and taut with the effort. 

I grasp for a behavior strategy. In the 10 years since Martin’s autism diagnosis, the primary support we’ve received has been from behavioral specialists and special educators. No one can tell us why Martin stims and scripts, why he cannot tell us how he feels, why he can never explain why. We use visual schedules and positive reinforcement and simple directives to motivate him without ever fully understanding what he is thinking. “Martin,” I say, “Try to scream in a whisper.” I model this for him, then say, “You try.” He does. He tries it. I am praising him when [Scream]. “You must stop,” I say. “Mommy is sad,” I say. “You have lost YouTube,” I say. “YouTube!” he pleads [Scream].

8:45 am. We are in the kitchen. Martin has screamed through breakfast. He is pacing and mumbling and shrieking. Jeff and the older kids must be awake. Are they hiding? I can figure this out. I must figure this out. Martin is not responding to my stern voice. I am pleading now. He stares out, repeating his mumbled phrase, punctuating it with shriek after shriek. It looks like a compulsion, but is it? What does a seizure look like? What if he’s been having seizures for years? What doctor should I call?

9:15 am. Redirection. I try setting him up with MarioKart on the Wii. He is playing and mumbling and talking about Mater and screaming. I expect his voice can be heard outside. In a week we are leaving for our annual vacation, where we stay in an old cottage nestled among others near Lake Michigan [Scream]. We already get the side-eye from the cottagers there. I imagine someone hearing what I am hearing and calling the police to report child abuse. What if we can’t go to the lake anymore? Never mind that. What about today, tomorrow, every day? I can’t take him in public like this. What if he can’t go to school in the fall?

10:00 am. I am sitting in the dining room staring at the pieces of a puzzle I spread out on the table in an effort to distract myself. Martin is shrieking like clockwork in the kitchen, having abandoned the calculator and math homework page I offered in a last-ditch attempt at redirection. I hear Jeff on the stairs. He is calm. This makes me unaccountably angry. I want to talk to him, to figure this out with him, but by now Martin’s shrieks feel like blows. I can’t think straight. I keep getting up, yelling at Martin, telling him he must stop, there’s no more YouTube for you, stop, stop, STOP. Jeff quietly suggests that we should ignore the screams altogether. The more we call attention to them, he says, the harder it will be for Martin to stop fixating on the script. Jeff is right, but my ego is bruised. And I’m still mad. I pout over my puzzle pieces [Scream] and imagine that this is my life now. Martin walks into the room. “YouTube?” he asks, desperate. Then he mumbles. Then he screams. “Go away from Mommy,” I say. “Go talk to Dad.” He doesn’t want to walk away. He needs me to reassure him about YouTube [Scream]. I do not do this.

10:30 am. Jeff thinks I should get out of the house. “You need a break from this,” he says, “I’ll take over for a while.” Martin has moved into the living room. He is playing the Wii again, screaming every few minutes. Jeff and I talk in the kitchen, but all I can hear are the shrieks. I’m starting to brace for them now. Jeff does not look worried. He looks ready to spell me—this has been our approach to parenting Martin since his diagnosis. We have been spelling each other through every stage, taking turns immersing ourselves in Martin’s obsessive behaviors, monitoring him in public places, negotiating his outbursts and silences, treating the world to what we like to call Autism Performance Art. [Scream].

10:45 am. It helps to talk to Jeff. I focus on our conversation, willing myself to stay calm, puzzle this thing out with him. Then I hear Martin. “That’s better,” he says, “try marching.” We find him stomping across the living room floor; instead of screaming, he punctuates his script by slamming his feet against the rug with all the force he can muster. “That’s it,” he says, “Works every time!” He stomps again, and this time a picture frame slides off a side table. I eye the TV we recently mounted on the wall and wonder. Then I praise Martin. “What a good idea,” I say, “but marching might break something. Let’s try something else.” He moves to the recliner nearby, sits, mumbles his script. Then he slams his forearms against the upholstered arms of the chair, hard, over and over until the urge passes. “Whew,” he says, “That’s it.”

By the time I leave for the grocery store, Martin is quiet, only periodically slamming his arms against the pillows we’ve wedged between him and the chair. I am still worried. I think Jeff and I are anxious people who have passed on our broken brains, in one way or another, to each of our children. I think I am uniquely ill-suited for this job. I think it’s my fault. My thoughts are a persistent looping tangle. But at the same time, I wonder whether, even as he screamed, Martin listened to us talking in the kitchen, whether he, too, was puzzling things out, finding his own way around this new compulsion.

11:10 am. Sitting at a red light. I tell myself to focus on the positive. Maybe Martin understood our frustration. Maybe he was frustrated, too. At any rate he figured out a way to stop screaming on his own. I’m certain this won’t be the last episode, though. Will he be screaming when I get home? As encouraging as it is to know he can self-regulate, it would be better to understand why he started screaming in the first place. Why is the question I want an answer to—not just why is he suddenly unable to stop screaming? but why does his brain work the way it does? I think that if I could just understand why, if I could just understand, everything would be OK.

Inhale. Exhale. I will not understand this today or tomorrow or any time soon. I think about my grocery list and how I really should write it down and stop relying on my memory to fill the cart every week. I think about what I will make for dinner. I wonder whether Martin will try salmon again. The morning fades and I think, Jeff is there with Martin. I can worry over screaming and behavior strategies and worst-case scenarios later. I hear honking behind me. The light is green. I drive on.  

Nancy Quick Langer was born and raised in Pittsburgh, and except for the two years she spent in graduate school in Boston, the farthest she has traveled from home is through the Ft. Pitt tunnels to the suburbs south of Pittsburgh.  She is a writer and works as an English writing teacher at Duquesne University and Carlow University. She and her husband Jeff have been married for 23 years and have three children: Bea, Henry, and Martin. Nancy recently published a series of essays about Martin’s Bar Mitzvah journey in her blog not a man of words.

Broken and Woken Is Open: Call for Submissions

“Ring the bells that still can ring

Forget your perfect offering

There is a crack in everything

That’s how the light gets in.”

-Leonard Cohen

When I was rolling pennies to pay the rent, I didn’t enjoy being "broke," but I did take a certain pleasure in the word.

"Broke" spoke of subtle resistance: bosses bypassed, debts dodged, evictions evaded.

“Low income,” on the other hand, sapped me.  Where was the defiance? The soul? "Low income" invoked nothing but numbers.

Alas, it's just this sort of dehumanizing terminology that pays the bills at Extreme Kids & Crew. No bureaucrat will cut you a break, and no philanthropist will cut you a check, if you're merely broke. But you might get a little something if you say: “70% of our clients come from low-income households.”

So I've learned to be strategic.  When writing to audiences that “process requests,” I employ the logic of their organizations, tossing around phrases like “low income,” “at risk” “special needs” and the clunky but unavoidable “families with children with disabilities” without railing against the assumptions and elisions tucked into such language. 

But not here at Broken & Woken.  This blog is a refuge from Official Speak, a place to express thoughts and experiences as freely as possible.

"Disability" doesn't appear in the title of the blog, even though it's been about the places Felix has brought me and the people I’ve met along the way. 

“Disability” isn’t as annoying as many other words in Official Speak. But it's flaccid and vague, and the more you puzzle over it, the flimsier it becomes. Puzzle over it enough and you'll throw up your hands (if you have them) and say (if you speak): "Everyone’s `disabled.'"

Maybe your disability isn't apparent yet. Maybe you’re at the height of your powers -- Muhammad Ali looming over Sonny Liston. But look inside, and you’ll find something, some barely visible wiggle--the beginnings of that Parkinson’s Disease, perhaps, that will someday land you on the canvas.  Disability can't be avoided. It's the human condition. But "human condition" sounded too grand, so I went with "broken."

I'm no longer broke, but I’m still broken: by exhaustion, anguish, asthma, unpublished novels, love that soured inside me, friends I’ve left hanging, resolutions I've abandoned. My womb was broken, too, failing to protect Felix from virus or unknown agent.

No one's going to challenge me if I say I'm broken.

"Disabled," on the other hand, is strictly regulated. It’s an official category used to separate people. Great amounts of time, pixels and money go into maintaining this divide.

Take Felix: His body and the outward manifestations of his mind must be measured and considered once, twice, or three times a year, depending on the cycles of his bureaucratic overlords. This means taking him out of school and trucking him to doctors, or missing work to sit in ill-lit rooms with wilting plants and wilting social workers, spending hours answering the same questions I’ve been answering for 13 years. And only to certify that no miracle has occurred. Felix’s white matter has not spontaneously generated.  His gait is still hobbled. His speech is still strange.

Broken is not yet codified. May it never be. I can join Felix in my brokenness, and it’s a good place to meet.  It’s where the light shines in.

****

The staff of Extreme Kids & Crew asked me to start this blog in 2014 to work towards our mission of challenging cultural assumptions about disability. Liz Wollman soon stepped in to help edit, and it’s been great working with her.  But one small voice piping up out of Fort Greene, Brooklyn, is just that: one small voice. Liz, our new co-editor Andy Dunn, and I think that it’s time to invite more voices to join us, to create a reading and writing community as far-reaching and inclusive as disability itself.

We’re asking writers and artists from all over the country and beyond its borders, of many ages and backgrounds, to share experiences of disability, their own or another's.

Please note that we see disability as integral to life. We're not setting out to heal, remedy or "fix" disability. You may dress a wound, but a new one will appear. That’s nature. Our culture’s aversion to disability interests us; advice on how to "rescue" a child from autism doesn’t.

Here are the details:

Posts will appear monthly (for now).

Payment will be on publication at standard blogger rates. (Don’t quit your day jobs.)

We'll consider poetry, art, personal essays, fiction, memoirs, interviews, photographs and whatever else fits.

E-mail pitches of no more than 200 words to this address: elizwollman@gmail.com. We'll try to respond to every submission, even if we don’t use it.

On Squids and Togetherness

The following is an adaptation from my speech at the Felix Awards on May 19, 2016.

I wrote this when I was pregnant with Felix:

If you were a squid,

We could get rid of the baby clothes

And wooden blocks.

We’d put you in a sea chest

Glassy, sadly square, but filled with the best in pebbles and shells.

We’d watch, noses smushed,

Landlubbing bugs with big eyes and tentacled fingers,

Asking each other: do you think it’s happy?

What would it like to eat?

It wouldn’t be that bad,

Except for the neighbors,

The snuffling relatives,

The asinine commentary.

And what, pray tell, is wrong with a squid?

My spittle spotting the sidewalk.

Passersby would shudder or smugly pity.

But when they were gone,

We’d have fun, swirling the water and wondering.

At the time I wrote this, I was in my second trimester and recovering from a bad case of the chicken pox.  The doctors had told me that if you have to get the chicken pox when you’re pregnant, the second trimester is the best time to get it.  There was only a one-in-one-thousand chance that the virus would permeate the placenta.  So I told everyone not to worry. But Felix had stopped kicking.  For a long time, he didn’t move at all.  Then he started too swoosh. Hence the poem.

As I got my energy back and Felix started swooshing more vigorously, I forgot about the poem.  But a few months after he had been born, when Jason and I began to notice that our baby was floppier than other babies, I remembered it.  Felix’s muscle tone was so low that he could barely lift his head. He did loll about in a squid-like fashion.  Oh, my god! I thought.  I must have known, even when he was in the womb! The poem foretold other things, too:  He did attract asinine commentary.  And Jason and I did have fun, when we were alone with him, swirling the water and wondering.

But the poem told me only what I already knew—it did not hint at what I would discover. The poem speaks to the safety and pleasure of a home where you are loved and accepted as you are. I grew up in a home like that.  I knew what it felt like.  I knew that Jason and I could make a home like that for Felix.  But as Felix got older, home was not enough for him.  From the moment that he could move himself about on a walker, he would wheel that walker to the front door and bang it against the woodwork.  He wanted to go out. He wanted to explore the bigger world.

So began the walkabout period.  Sometimes this meant Felix, on his own steam, wheeling his walker down the sidewalk.  But this was a strenuous activity for him and he couldn’t keep it up for more than a block or two. So most of the time, Jason, a babysitter, or I pushed Felix in his stroller, his folded-up walker dangling from the handlebars, for miles and miles around Brooklyn and Manhattan.  When I was at the helm, we had plenty of encounters of the sort my poem had foretold: nervous shuddering, smug pitying, strangled looks of alarm.  But I had been expecting that sort of thing and barely noticed after a while.  What I hadn’t been expecting were those people whose eyes lit up when they saw us, who would break into grins or more contained nods of recognition. Not loads of people, but a far greater range than those who usually acknowledged me when I walked around the city alone or in the company of my able-bodied daughters.

There was an elder panhandler in Brooklyn Heights who effusively blessed Felix as he tucked a five dollar bill in his stroller. There was a black street preacher shouldering a placard warning about white devils who gave Felix a cheery wave before catching himself and retracting. Another memorable encounter happened on a muggy summer day when Felix was nine or ten and I was picking him up from his school in midtown Manhattan. He was in a terrible state.  I did not know why.  It could have been heat, hunger, thirst, frustration. It could have been something else entirely.  Because Felix rarely uses words, there is much about him that I cannot know.  But he makes his feelings clear. At that moment, he was screaming louder than the accumulated honking of all the taxis in New York City, and hitting his face with merciless passion. All my attention was focused on getting us to our car. I felt an instinctual need to shield him from the public when he got like that. I pushed his stroller with my body, while holding his wrists in an attempt to restrain him.  We had to stop for a red light at Park Avenue.  Beside us stood an Asian guy in a business suit.  He took Felix in and nodded in commiseration--not at me. At Felix.  “I feel just like you,” he said.

It could suck walking Felix around. We’d go somewhere in the subway, then get trapped underground because the elevator was broken.  We met with all sorts of indignities, injustices, messes.   But those encounters with other people, no matter how fleeting, buoyed me. Felix was acknowledged, kindly.  I was acknowledged, too, often by people with far more difficult lives than mine, as an equal. 

I am a privileged, white lady.  I am well aware of it.  I would not have been able to start Extreme Kids without the resources that come along with that position. But it is wonderful to be seen beyond that.  We are all so much more than our class and race, our size and sex, our abilities and disabilities.  We have so much potential to connect beyond these boundaries, and when those connections happen, they are immensely powerful.  That is what those walks with Felix really drummed into me.

What I could not have understood when I wrote that poem was that living with Felix would change my view of what people can do and how we can be with each other.  As much as the strangeness and difficulties of Felix’s life could isolate us from mainstream culture, he also led me to a marvelously unpredictable collection of people, most of whose names I would never learn but who nonetheless marked me, ignited me, held me up. Blessed little was ever said during these chance encounters, which were usually limited to a glance or a smile. But their impact was similar to music that went straight to my soul, or a book that seemed to be in direct dialogue with my innermost experience. It was that feeling of not being alone—that it wasn’t just me and Jason, swirling the water and wondering.  There were other people swirling the water, too.

I started Extreme Kids wondering if it would be possible to design a space that would get those zaps of connection happening more frequently and predictably. I also wanted to know if Felix’s ability to break down racial and cultural barriers could be applied more broadly: could our children’s disabilities be used as a force to bring people from different groups together?  I suspected so, but I didn’t have any experience other than my walks around New York with Felix.

After five years of directing and overseeing Extreme Kids, I feel confident in saying: yes. The interaction between families, the relief at being accepted, and the children’s pleasure bubbling up around our playspaces create an atmosphere that works like a tonic.  I cannot remember leaving an open play or event feeling depleted. I realize that other people may:  Children can be exhausting.  But based on other parents’ comments, hugs, letters, and the growth of the organization, I’d say the feeling of renewal is hardly mine alone.  The experience of mothering Felix and overseeing Extreme Kids & Crew has led me to believe that disability can bring out the best in us, and that it has a great, untapped power to bridge cultural and class divides.  At our playspaces, it’s not uncommon to see a Hasidic mother and a Hispanic mother trading notes on IEP’s, or a father from an affluent neighborhood swapping advice about child-rearing with a father from the projects. Most of the time at Extreme Kids, there’s an ebb and flow of people from different backgrounds getting along well, and treating each other with respect and amity.  

When I look at the news these days, I can hardly reconcile what I see at Extreme Kids with the vitriol, distrust, and fear gripping the country. It makes me wonder if it would be possible to use disability to act as a unifying force on a larger scale.  We are all touched by disability: our child’s dyslexia, our mother’s Alzheimer’s, our brother’s autism, our sister’s war wounds, our lover’s accident, our own asthma. What if we could let go of the specific cause or diagnosis, and see that our bodies and minds are always in flux--that trying to force a body or mind into fixed contours is a waste of energy and doomed to fail? What if, instead, we put our energy towards taking care of each other and learning from our differences?  This is not liberal thinking or conservative thinking; it’s old fashioned humanistic thinking and it is alive and well in the disability community, even as it has been drained from general discourse. I amuse myself, imagining Felix running for office, and then start to wonder if he might be a better choice than the other candidates. Not because he could or could not govern--but because of that gift I did not foresee when he swooshed in my womb, his wonderful knack for bringing people together.

Go Vanessa!

A guest post by my friend Vanessa Connelly, Extreme Kids & Crew board member, real estate maven, runner.  

I started running early last year, initially to try to take off some weight. I was heavy, stressed and tired, and I figured that if I gave myself the goal of a race—a half marathon, no less--I would have something to keep me motivated. I signed up for the Brooklyn Half and started a novice training program.

I have reached a point in my life where I‘ve more or less figured out the things that I'm good at, and have gotten pretty adept at avoiding the stuff that’s harder for me. That said, I've never been particularly athletic, and the training program, novice though it was, proved a challenge. I had a lot of doubts and struggled with the fact that the running wasn't coming easily for me. I was red-faced, sweaty and slow in what seemed to be a park filled with dewy gazelles.  But I kept it up and soon realized an unexpected bonus to running: quiet time alone to think.

On my runs, my thoughts often turned to my boys, and especially Silas. Silas is Autistic, and has a hard time

with verbal communication. He is very expressive, but getting words out isn't easy for him, and on some days is pretty much impossible. More often than not, he handles what I know is a very frustrating situation with a lot of good humor and grace. He's crafted ways of stringing memorized text from his favorite shows and movies together to get his point across, usually humorously. For example, A recent game of "dentist" ended with him examining my teeth and saying "the tooth, the whole tooth, and nothing but the tooth!" 

Seriously, Silas is just that awesome.

When I'm feeling up against it on a run, I’ll often think about how hard Silas works to navigate a world that isn't very friendly to his neurology, and that helps me push myself to get uncomfortable—and then to get through it. This, in turn, seems to help me sling off some of the stress that comes with being a mom to a boy in a world that isn't always so kind or accommodating to kids like him. 

When race day finally arrived and I got to the starting area of the half, I felt awkward and nervous. I was doubting myself for signing up for such a long distance, and worried about finishing. I sat down on the curb in my starting corral and started chatting with a young man and his father, who were sitting next to me. It was clear after a few exchanges that the young man, an avid runner, was Autistic. He had attended schools in Manhattan that we were considering for Sy, and he and his father told me about them and gave me some pointers for the run. They told me about the many races they had run together, and about their future plans to run a marathon. I thought about them a lot as I ran the long alphabet stretch of Ocean Parkway toward Coney Island.

I also thought about Silas--how he had somehow overcome our short-legged body type, how he is so joyful when he is running, how easy the wide strides seem to come to him. I thought about how years down the road, if I can continue the training, I may be able to keep up with him on the races we will run together. 

Silas looked great wearing the medal I got for finishing that day. 

Interview #6: Rebecca Alson-Milkman

A few weeks ago, while I was scouting for this year’s Felix Award, I went to see No Clean Lines, a show curated by the dancer and choreographer Rebecca Alson-Milkman, which featured three generations of choreographers making work about disability from three different perspectives. I had organized similar evenings myself, though centered around writing, and had found them immensely rewarding. But this was even better: I didn’t have to do any planning.  All I had to do was buy a ticket, and get to the Muriel Schulman Theatre at Triskelion Arts on Calyer Street in Greenpoint.  

I once lived in Greenpoint, 27 years ago, and back then I loved nothing more than tramping through the neighborhood’s abandoned factories and lots, some of which were filled with old sewing machines, and escaped threads from moldy spools that flew from I-beams.  I knew that a lot had changed since then, but I had glanced at a map and I had my phone, so I wasn’t worried about finding the theater. I climbed out of the G train and confidently set down Manhattan Avenue, buttoning my coat against a piercingly cold wind, which I would subsequently blame for freezing that part of my brain that knows how to orient itself. A series of unfamiliar street signs ensued, all of which I ignored. Eventually I realized that I should have long since been there.  I checked my phone, only to discover that I was late, and had been walking several blocks in precisely the opposite direction of where I was supposed to be going.  And so it was that I reached the theater out of breath, my heart pounding from running half a mile in heeled boots, my face red from embarrassment at the effort—and my error.

no clean lines in the drying concrete  photo credit:  Julie Lemberger

I did not start this article intending to write about getting lost, and yet I find that I cannot broach the show until I explain the getting there. For the dances were similarly disorienting, though purposefully so.  There was no curtain, no introduction, no one telling us what we were about to see.  It began with this: a young woman, walking with a strange gait, setting a tape recorder on the floor, speaking the same phrase into it, looping the phrases over each other, providing a muffled rhythm to which she danced, her movements jerky and yearning, her aloneness palpable. This was Alyssa Gersony, performing in her own piece, this place with the pretty-sounding name, a meditation on the incarceration and de-institutionalization of those children with disabilities who had been trapped in Willowbrook, a state-run facility on Staten Island that called itself a school, even though no lessons were ever taught and its living conditions and overcrowding rivaled those in the worst prisons.  

The second piece, Tourette Flouret, was choreographed by the LA-based Victoria Marks for the dancer Alexx Shilling, who stood before the audience in a black dress and presented us with her face, upon which she performed a remarkable and lighthearted procession of tics and eye pops.

no clean lines in the drying concrete   photo credit: Julie Lemberger

The show was anchored by Rebecca Alson-Milkman’s own piece, no clean lines in the drying concrete, with original music by Aaron Drake and a set by Piper Mavis.  If the first two dances were brilliantly disorienting solos, this one grounded me in the deepest of ways.  no clean lines in the drying concrete examines disability through the lens of family, and was inspired by Alson-Milkman’s own experience as the mother of a child with a rare neurological condition called Jacobsen syndrome.  The three dancers, Donna Costello, Jamie Graham, and Alexis Steeves, by turns graceful, staggering, exhausted, energetic, broken, revitalized, together and apart, invoke the difficulties and friction, tenderness and care, interdependence and solitude of family members as they seek to support one another and grow on their own.  Pop a couple more children in there—along with an anxious dog and a territorial cat--and I could very well have been watching my own family.  I imagine I was not alone; the dance brilliantly suggested the age-old struggles and joys of family life, particularly the intricacy with which the bodies intertwined to hold each other up. 

 no clean lines in the drying concrete  photo credit Julie Lemberger

When I reflect on this evening, I keep going back to the feeling of being lost and then found--that moment when I thought I knew what I was doing, then realized that I didn’t; that disorientation, and then the strange shame at disorientation, as if we are always supposed to know what we’re doing; and then the shame dissolving into warmth and intimacy as I found myself among people bravely exploring interdependence and imperfection.  I had not, until lingering on this evening, so clearly grasped the relation between disability and disorientation.

The following week, I met with Rebecca Alson-Milkman, eager to hear more about her son Elliot, and how he has influenced her art. I soon found myself in one of those effortless, far-reaching conversations that burble up when people who have learned similar life lessons meet. Rebecca told me that for many years, she was reluctant to integrate her experience with her son into her art, both to protect her son, and to keep something of her own that wasn't affected by his disability. But after completing two projects that were more overtly political in nature, she found that everything she had left to say artistically had been shaped by the new information she was gathering as Elliot's mother, and by seeing the world through his eyes. I am glad she took her art in this direction. She will be honored for it at Extreme Kids & Crew’s third annual Felix Awards Benefit, to be held May 19, 2016, in Brooklyn. Mark your calendars!

The Rebecca Alson-Milkman Interview

1. What is your definition of disability?

This is so hard, because it is so personal. I think with my son, Elliot, I have strived so hard not to categorize him in any one way or let him fall into people's diagnostic boxes. Of course, this runs into some problems with receiving funding to meet his needs, since diagnostic categories are the basis for children with special needs to get served by both medical and government institutions. But I have felt strongly that the way he perceives the world and acts in it are highly individualized, and based on extraordinarily creative neural and anatomical connections that deviate from what a "healthy," neurotypical person experiences. This sometimes makes life much harder for him, because the world is not set up for him. But when we are able to get him the additional support he needs and find people who make the extra effort to adapt to him (and there are so many wonderful people working in the world of disability or special needs), he flourishes and shows us all of the amazing ways he has come to understand the world.

I guess one other answer that takes into account the above and is part of how I have come to integrate disability into my recent choreography--sometimes marginalized, always living in a state of transition in between two worlds: the state of individual perception and the state of others' expectations.

2. How did you get involved in the disability community?

Growing up, my parents were both special education teachers, so I always had an awareness of learning differences. Then, when I was in my twenties and trying to support myself as a dancer, one of the many jobs I did was being a part-time tutor, exercise coach and afterschool babysitter for a girl with pervasive developmental disorder. But I didn't really get involved until I had my son, Elliot, who was born with a rare genetic syndrome called 11q terminal deletion, or Jacobsen syndrome, which has a lot of medical and learning effects or implications. 

         

3.  What drives you nuts about disability?

Mostly the way it is still treated in society- that different is somehow less than, and still a punchline. My husband and I seethe over the way "retard" is dropped in mainstream comedies, or even out of the mouths of friends of ours. We seem, as a society, to be becoming quickly aware of all sorts of ways that different cultures perceive the world, how people perceive their own race, gender and sexuality, but there is still a hair-trigger denigration of people who have some level of disability, and a lack of adjustment to that by societal institutions like schools, playgrounds, medical facilities, government funding, etc.

4. Any recent wonders you'd like to share?

A wonder or maybe just an act of hope- I am due to give birth any day now to another child. And so glad I completed a dance about three before my family becomes four.

For more about Rebecca, check out her site:  www.alsonmilkmandance.com

Photographer:  Julie Lemberger: http://julielemberger.com/