Thursday, August 31, 2017

Am I Disabled?

by Wendy Caster
My friends keep telling me I should go on disability. Granted, I’ve been sick and largely unable to work for over a year, but am I disabled?
When I look at that sentence, I feel like laughing at myself. After all, isn’t “sick and largely unable to work” the definition of disabled? But it’s not that simple.
Backstory: I was diagnosed with a mean uterine cancer in April of 2016. The usual next steps followed—surgery, chemo, radiation—but they were particularly aggressive versions of each step. Just as you fight fire with fire, you fight mean with mean. As of this writing, I am cancer-free, but the treatment beat the shit out of me. I have lymphedema of my left leg, so it is swollen and heavy and uncomfortable. I am wearing a series of Velcro wraps, hip to toes, which make the leg heavier and uncomfortable-er. I have anemia, which may be getting better, but I’m still tired. I have insomnia, so it’s difficult to tell if my lethargy is caused by the anemia or lack of good sleep. I may or may not be bleeding internally. (A capsule endoscopy should clarify that, but I’m experiencing some health insurance challenges, so I’m not sure when that will happen.) The area of my left hip and then down my leg often hurts. When it does hurt, it’s bad enough to make walking difficult or even impossible. It doesn’t seem to be related to the lymphedema. Sometimes it feels like it might be sciatica, but then sometimes its quality and location change.
Most importantly, I have lost the ability to maintain focus. Last year I had to return a freelance project undone, which was humiliating, even though the client was lovely about it.
I have good days, but I haven’t had enough in a row to commit to a job or even a short-term project. I’ve missed many social events, given up theater tickets, and so on. My world has gotten smaller.
So, am I disabled?
As I’ve gone through this process over the past months, I’ve come to see that it’s a two-level question. (1) Am I unable to make a living? (2) Am I willing to accept the label of being a disabled person?
The answer to the first question is pretty clear. I cannot make a living. The answer to the second question is trickier, but it’s important. And it reminds me of my coming-out process.
When I came out as gay in 1977, embracing a label was more than a personal decision. It was deeply political. It would affect how people viewed me. It would eventually lose me a job. It would occasionally put me in danger. But--and this is an important but--choosing to accept that label helped me change the world. Over the next decades, many people would improve their view of homosexuality and homosexuals merely because they knew me. My openness was a cure for bigotry and misperceptions. Multiply me by the millions of other openly gay people, and you have same-sex marriage, gays in the military, and other significant political advances. I was and am only one drop in the ocean that advanced gay rights, but I’m proud to be that drop.
During my coming-out process, I had to let go of my own misperceptions to learn what it really meant to be gay. Right now, I’m working on my disability-related misperceptions.
These misperceptions are more emotional than factual. I wonder, am I disabled enough? (Would my embracing the label be disrespectful to people in wheelchairs?) I wonder, will I be a different person if I’m disabled?
Years ago I worked on Mainstream: The Magazine for the Able Disabled. The managing editor often spoke of people’s reluctance to accept the word disabled. He would talk about people he knew who used hearing aids, who walked with a cane, who missed work due to various illnesses, but who would never use that word about themselves. Why did it matter to him? Because the disability community had (and has) insufficient political rights, resources, and protections, because it was (and is) misunderstood, because it needed (and needs) an ocean of support to make necessary progress.
Hey, that sounds like the whole gay thing, no?
The more I think about this, and I think about this a lot, I realize that there’s a whole ‘nother factor in operation here: my father. (See, it’s not always about the mother.) When I was a kid, I was only sick when my father said I was sick. I could feel terrible, but if he didn’t believe me or if he thought I wasn’t sick enough or if he was just in a bad mood, off to school I was sent. I internalized this to a ridiculous extent (I mean, that was decades ago), and I’m still not quite able to judge my own level of illness. Or disability.
My friends are right. I can’t work, I cancel appointments, I frequently feel pretty rotten. In a real, official sense, I am disabled. So here I am, 40 years later, coming out again.
After I wrote all those words above, I sent an email to my oncologist that ended with, “In order for me to apply for disability, I would need a letter saying that I'm too sick to work and/or I have a diagnosis with a less-than-positive prognosis. Would you be able to write such a letter for me?” She wrote back, “I absolutely support your need to go on disability.” And I went into an immediate depression.
My main tool for dealing with the past 15 months has been denial. When I’m not actively feeling bad or doing something health-related, I don’t focus on my situation (or, at least I didn’t until the disability thing came up). Even though I am a researching sort of a person, I didn’t do much research. It just upset me. And even though I completely believe in support groups, I didn’t go to one. I didn’t want to spend that time totally focused on my health, or lack thereof. But my doctor’s note fucked with my denial. “Oh shit,” I thought, “I’m disabled!” And I felt incredibly bad and sad. That’s the power of words. I was no sicker than I was before I read the email. I was in no more pain. I was no more disabled. But the words hit me hard. Luckily, the sadness didn’t last too long.
I guess this is a process. The coming out continues.

Wendy Caster is an award-winning writer. She lives in New York City.

Tuesday, August 1, 2017

Grandfather and Grandson: A Tale of Two Disabilities

by Melissa Morgenlander

Every year, my family visited my parents at their home in Sarasota, Florida. We all liked to spend time in the pool. My daughter, Fiona, had a special bond with my mother, and they always ended up somewhere giggling together. My husband, Michael, and I enjoyed the warm-weather escape from New York City, relaxing with something to read. And my son, Quentin, usually spent the majority of his time quickly flipping through channels on the TV. 

This is a coping method for him. Quentin has autism and ADHD, and flipping channels was a way for him to deal with the fact that we were not in our regular routine. He always has a hard time when we travel somewhere that disrupts his routines and takes him out of his usual surroundings, including visits to my parents’ home. I think Quentin wanted to see the station logos at the bottom of the screen as each channel was changed. He loved the repetition, and seeing the logos brought him a relative calm: They were the same one we have on our cable system back home. 

While it took me a while to understand Quentin and his behaviors, my father merely grumbled. He always thought Quentin was simply misbehaving. He didn’t understand the coping part. Yet if we took the remote away or tried to prevent Quentin from channel switching, he’d have a meltdown. He would kick and scream and start to destroy things. So, I’d give him the remote and let him be. My father disliked this, and our disagreements about parenting always made the trip difficult. 

My father never really tried to understand Quentin. He disapproved of every strange thing he did – and believe me, Quentin did some pretty strange stuff. Quentin licked things like glass panels or coins, touched (and nearly broke) every fragile item in their home, and liked to jump into pools, even when fully clothed. My father once told me I was spoiling him by giving in to his tantrums. 

The funny thing is, my father also had a disability. His left arm was deformed – curved into a crook. His left leg muscles made him walk funny. He was born with physical deformities in the 1930’s, when no one labelled them with a diagnosis or condition; they were what they were. Through the modern-day powers of the internet, I learned that my father likely had Erb’s palsy, but we just called it “Dad’s handicap.” There was no physical therapy or medical help for this kind of condition when Dad was a boy; his mother simply did what she could to help him. 

My father grew up unable to play with the other boys in the ballparks and playgrounds of Brooklyn. He became skilled, though, at flirting with the girls who watched the games with him on the sidelines. Still, he needed help throughout his life. He needed help cutting his food, even as an adult. He couldn’t tie his shoes, so he wore loafers. And while he loved chemistry in high school, his teacher told him he couldn’t become a chemist without two good hands. So he followed his second-favorite passion: statistics. 

When I was growing up, we never talked about his arm, but not because Dad was ashamed of himself. There was simply nothing to say. He could hug me with one good arm. What else mattered? Occasionally, he’d say he felt bad he couldn’t play catch with us like other fathers, but that never made me feel like I was missing anything. 
Quentin was born in 2007, also in Brooklyn, along with his neurotypical twin, Fiona. Just as my grandmother had to learn how to adapt for my father, so I have had to learn to adapt for Quentin. 

Like my father, Quentin has difficulty playing ball or on the playground with other kids. We got stares or complaints if Quentin took someone’s toy away or did something to upset another child. I was lucky to have found Extreme Kids & Crew before he got too big to cause too much trouble. I loved coming to Extreme Kids because I could celebrate both of my children without stares or judgment. I could compare notes on therapies and schools with other parents. I wonder, sometimes, if my grandmother ever felt as lonely as I did.

My parents came to visit just as Extreme Kids was beginning to take shape. I was eager to show them this community I’d found. They sat on folding chairs and watched the kids play. I remember my father eyeing one boy who had severe physical disabilities. I knew my Dad was thinking of his own disabilities; I could see it in his eyes. Later, he said to me, “I wish I had a place like this when I was a kid.” I wish he had, too. 

Last summer, my father died at the age of 85. In retirement, he spent half the year in the Berkshires in Massachusetts and the other half in Sarasota. In both places, he pursued his favorite hobbies: bridge and going to the theater. He and my mother traveled the world and visited his many friends. He was having a fantastic retirement -- the kind we would all hope for. He had come a long way from being that kid who couldn’t play ball or become a chemist. 

The last time my kids saw my Dad, we were in Sarasota during spring break. He took me aside the day we landed and quietly said, “I really want to try to connect to Quentin. How can I do that?” 

The question choked me up a bit. For all his years of lacking sympathy, my father was finally opening up and accepting Quentin for who he is. I told him to sit quietly next to Quentin and engage him in his own world: If he’s watching TV, watch with him. If he’s reading a book, read with him. Comment and point like he does. 

My father tried. It wasn’t the biggest connection by any means, but Quentin sat with him for a bit. Dad watched as Quentin flipped channels. He sat close and occasionally remarked on a logo. This image is imprinted on my brain. This simple act of trying to interact with Quentin on his level, to forge a difficult relationship: this is the greatest gift he ever gave me.  This simple act showed acceptance and love. 

We are not all alike. We come together at spaces like Extreme Kids & Crew to celebrate  our differences, no matter what. It’s hard. The differences might be difficult to get past, but we must try. Just because my father had a disability didn’t mean he immediately understood my son’s. But his attempt at acceptance and understanding – after a long period of not wanting to try – is exemplary.

Dr. Melissa Morgenlander is a children's media curriculum designer, researcher, and writer. She works with a variety of educational television shows, apps, and after-school programs. She also writes about the intersection of autism and media and technology on her blog, the iQ Journals.  Learn more about Melissa’s professional experiences from her website.