Today is my birthday, and tomorrow is the anniversary of the day I almost died. Anyone reading the medical records from my birth would be surprised to find out the baby lived in the end. I weighed two pounds, twelve ounces and was not expected to live more than a few days. Forty-five years later as of today, I am still here. I am engaged to the man of my dreams. I have the best family (by birth and by future marriage) that I could ask for. I get to do what God made me to do, which is use the arts to reach out to others.
Today is also the forty-fifth birthday of my sister, Jennie Szabo. Jennie is celebrating in heaven today, as she passed away from complications from her severe disability (Cerebral Palsy) at the age of fifteen.
My character, Jennie, the budding makeup artist who first appears in my novel Mostly on the Internet, is my tribute to my sister. It’s how I imagine she was on the inside, the woman we would have seen had she been able to move and communicate with us. Jennie may not be here with us on earth anymore, but she will be forever here through my novels.
Artists with disabilities are indeed here, and we deal with the same issues as all other artists. But there are also a few things we must deal with as people with disabilities.
Mapping out the building or room for navigation and exiting
Those without any physical issues that impact mobility can pretty much go places and not worry about how they’re going to get around and get in and out. When someone has a mobility issue, a simple trip to a new restaurant or a party necessitates scoping and planning. You check the restaurant layout to make sure you can get around the tables without careening into other diners. You make sure there’s an entrance or exit that does not involve stairs. It may even be necessary to wait longer for a table, or sit away from the crowd at a party to make sure you’re close enough to the restroom to make it there on time or get there without knocking into anyone or anything.
Taking odd paths or going the long way around places
I may not have any official disabling condition, but I was born with a drop foot, and have a partially paralyzed ankle, foot, and lower half of my left leg from the surgery I had to correct it when I was three. The calf muscle in that leg also grew incorrectly. This leaves me with terrible balance. When I’m in a restaurant or other crowded public place, I often intentionally walk all the way around the crowd to get to or from a restroom or soda fountain, I can see that there’s a shorter way. I can also see that way contains a lot of people that I am probably going to bump into if I go that way.
Getting tired faster than those without disabilities
Chronic pain and extra wear on joints, bones, and muscles are a part of many mild physical disabilities. This extra pain and extra work can be tiring. If someone with a disability needs to go home a little earlier than others, they’re not lazy or antisocial, they’re worn out. Disabled people who go to bed earlier than expected for adults are not childlike or sick. They’re genuinely tired.
Difficulty getting in and out of showers and bathtubs
Take the high step needed to get into a bathtub, combine it with a smooth and often wet floor, and add in little to grab on to for balance, and you have a potential disaster for someone with a mild physical disability.
My disability is limited to half of one leg, and I still cannot get into a shower or a tub without a handicapped rail, or stand in there and take a shower once I make it in. I can’t keep my balance on a smooth, wet floor.
Every morning, as I wait for the coffee to brew, I grab onto the window ledge and the rail I keep suctioned to the bathtub wall, and carefully climb into the tub, then sit down to wash and rinse myself with the shower water. When I’m finished, I use the rail help lift myself up and grab the window ledge again to climb out. Staying in hotels, or staying at someone else’s house, can cause problems for me. I would need a chair and a rail to use a shower stall, and if the tub doesn’t have a bar that will help me lift myself, I’m not getting in because I might not make it out.
Getting treated like children in subtle ways
For many years, I lived with my parents for reasons that had nothing to do with my disability. During those years, I often refused to go to birth family events or even acknowledge them. Looking back, the reasonable thing to do would have been to speak up, but at the time I went for complete avoidance.
The reason I refused to acknowledge family events was the way I was invited to them. Relatives, even those who were decades younger than me, would send invitations addressed to my parents full names with “and Jessica” added on. That is how you invite a child to an event. Anyone eighteen or older, no matter who else lives in the house, receives their own invitation. I was always insulted by the implication that my parents had to bring me with them to the event, that I couldn’t have gone on my own.
Most disabled people are also familiar with behaviors such as people talking to them in a higher pitch and slower, speaking directly into their face, or lumping them in with the children in social situations. I once watched a video by a man in his fifties who was approached while out in the park on a date with his girlfriend. The stranger who approached him asked the girlfriend if the man would like to play with bubbles.
Having a long story as an answer to “What did you do?” or “What happened?”
People often ask this one as an icebreaker when they see a casual acquaintance using a cane or other assistive device to walk. If you know the person well enough to know they did not have a disability beforehand, it’s okay to ask. If not, you may need to be prepared for a very long story.
I was diagnosed with Cerebral Palsy when I was born, given surgery and other treatments for it for twenty-eight years, then told I do not have it after all. The diagnosis had been made too early. It was incorrect. A doctor examined me last year and also said I do not have Cerebral Palsy, as I do not have enough symptoms of it to merit a diagnosis. I still don’t know if I have some sub-form of it, or if my physical impairments are caused entirely by the surgery I had when I was three.
Most people who ask about the cane I occasionally use to walk on snow or ice are not expecting that answer when they ask me what happened.
Difficulty getting hired even when the disability does not impact their ability to do the job
Things are looking up on this one. In the 1990’s, it was startling to see the character of Dr. Carrie Weaver on the popular t.v. drama “ER,” as few shows featured someone with a physical disability but no intellectual impairments. Today, there are two shows with main characters who have physical disabilities, but are not cognitively disabled. “Speechless” tells the story of a teen boy who uses a wheelchair to get around and a computer to talk, but is otherwise a typical somewhat nerdy teen boy. “Special” features a young gay man with cerebral palsy, written by and starring Ryan O’Connell, a writer and actor who really does have cerebral palsy. We even have a “teen heartthrob” with cerebral palsy. The teen boy on the show “Breaking Bad” is played by RJ Mitte, a young man who really has cerebral palsy, and is a celebrity crush for a lot of young women. There is even a disabled Navy Seal, John W. Quinn (retired).
Despite this progress, people still make assumptions when they learn someone has a disability, or notice a mobility issue.
False praise to a degree that would be deemed excessive even by today’s standards
Sometimes, people think the opposite of bullying someone or treating them as though they can’t do things because of a physical disability is gushing over everything they do because they have a disability. People are so afraid to seem “mean” or “discouraging” that they tell disabled people they’re wonderful at things, even when they’re not.
Today, some of this stems from the “self-esteem” movement, a trend of telling everyone they’re amazing at everything, no matter how much talent they actually possess or how hard they work at it. This is based on a program that was intended for adult children of addicts, specifically alcoholics. People who grew up with alcoholic parents often received no praise or encouragement, or if they did, it was for something rather messed up to be proud of your kid for, like hiding Mom’s bottles from Dad. Flooding these people with praise helped them experience genuine appreciation for them as people for the first time.
When you try to apply this to everyone, including people who already have a balanced view of themselves, you start tipping the scales from healthy self-regard to narcissism and entitlement. Disabled people can be narcissistic and entitled just like everyone else. But it’s also confusing. A person has to develop extra sharp “reading people” skills to determine whether they’re being encouraged because they’re actually good at something, or patronized out of pity.
I can write. I can sing. I can teach. I can learn languages very quickly. I am certainly not the greatest at any of those things, but those are the talents and skills I can offer the world. I can also act a little, but I would never impress anyone with my talent there. When I was a child, a well-meaning P.E. teacher tried to tell me I could swim really well. I can’t even keep my balance in a swimming pool, and I’m afraid of water.
Please support disabled artists….but only the work you genuinely enjoy. We want the same access to things that you have, not pity or special treatment.
Today’s article is dedicated to the memory of Jennifer Lynn Szabo (1975-1990), and to all disabled artists.