To look at me, you recognize I am a paraplegic because I’m in a wheelchair. And since my amputation surgery to end chronic infections in my left leg, you may deduce through your mental math that I am in a wheelchair because I am an amputee. However, I was born with spina bifida. I didn’t have the amputation surgery until just a couple months ago and I am newly adjusting to this new wrinkle in the fabric of my life with disabilities – plural now, not just singular.
I have many friends, some of whom live with chronic fatigue syndrome, manic depression, lupus, visual impairments and intellectual disabilities. The only telling sign that they have a disability or chronic illness is if you ask them to walk to the store, run a marathon, and sit in the hot sun, go above and beyond their scheduled routine or to read something. Consistently, they are treated as if they don’t need some sort of accommodation to work, live or participate alongside others without disabilities. And here I am sort of unburdened in exercising many rights afforded me because of ‘the look of disability’. Don’t get me wrong, I have still been passed over for work, presumed to be an idiot, or unable to accomplish something that I am very much capable of doing physically or intellectually. It happens. It’s wrong and I speak up to advocate against it, but it still happens.
I admit. I used to scoff at people climbing out of big pickups walking upright, without a cane or crutches, who would park in an accessible parking space. And there are offenders, nonetheless. I would sometimes jeer at people who used the motorized scooter shopping carts in supermarkets when they would rise without trouble to reach something on the highest shelf. Here I could barely get around a wide aisle display or reach beyond an arm’s length above my head without tipping over.
Not that that makes me bitter. I simply ask for the help I need and move on about my business. I have no idea what the challenges are for the next person compared to mine. But I had a clear stereotype in my head that that person didn’t look like they had a disability and the knee jerk reaction was irritation. I have since realized that disability and chronic illness don’t always come in their most obvious telling forms such as crutches, wheelchairs, scars, or specific speech, limb and facial features.
What do disability or the needs for accommodations really look like anyway? Disability, too, just as any other culture or ethnicity, is a melting pot of abilities and challenges, with and without tell-tale signs. Some challenges are daily and grueling. Some challenges are minor by comparison, or outwardly anyway. Others are sporadic and hard to recognize until a harsh symptom or flare-up hits the individual who may have epilepsy, lupus or multiple sclerosis. Still, others may not seem to have a disability until they speak, try to perform a task, read or understand a difficult concept in a certain subject. And then there are those on one end of a particular diagnosis who are mistaken for having the same severity of disability as someone else with a similar diagnosis on the other end of the spectrum. The spectrum is so wide, though and no two people with spina bifida, epilepsy, lupus, autism, or other disability are alike.
It’s been thought that, because my legs don’t work, that my brain also doesn’t work, or that I’m also Deaf. People speak to me loudly and ask if I’m deaf, but if I were deaf, I can’t hear you. That’s different than being hard of hearing. I’ve also been spoken to as if I’m a three-year-old. As a result, people miss out on the fullness of my intellect and humor by treating me as if I’m a child. I know they mean well and those people don’t address me with any hostility. Still, it’s still grating and a shame what assumptions can do to break down communications or hamper new acquaintances before they even start.
Many of us with disabilities are vastly underestimated and still others are vastly overestimated. On the overestimating side of the coin, for me at least, it has been presumed that I am somehow superhuman for enduring all I’ve been through. But, I think of it this way. I conjure up the image of a child faced with a challenge and I realize that a child doesn’t know differently. I’ve watched many (I said many) children with disabilities play who don’t stop for their limitations. Many go beyond their limitations’ breaking point. They take what they are given and run with it.
So, I like to think I’m living my life with a child’s eye view of my abilities and challenges. I keep my head down with proverbial chin still up and move on through. I don’t give my challenges much thought on a daily basis, even as much as I talk about them as “The Life Beyond Limits Coach”. The only thought I give them is, “How high or wide is that pass for a transfer?” or “Can I make that curb in my wheelchair without flipping?” Oftentimes, I don’t have time to really think and guess, so I take the Nike rule of thumb and “just do it”. I’ve tumbled for doing that just as easily as I’ve tumbled for analyzing my somersault from wheelchair to driver’s seat to the nth degree before taking the leap.
As for my friends who try to park in an accessible parking space or use an accessible restroom who don’t ‘look’ like me or don’t have a visible disability, they have to second guess their bodies tolerance on parking distance and the tolerances of those around them. Several of my friends have been yelled at, even physically confronted and harmed by people who think they are saving the world for folks that really ‘need’ the parking space ‘like me’.
A dear friend with an intellectual disability who was recovering from back surgery was once mistaken at a conference as my attendant. She backed off and said, “Oh no, I can’t carry that bag for her. I have a bad back.” The clerk snapped back, “Well what good are you helping her then?!” I had to intervene and directly, but politely say, “You know, people who accompany others with visible disabilities aren’t necessarily attendants. She’s a friend of mine who has a disability, too. Have a nice day.”
On the other side of that coin, my husband is often mistaken for being my attendant or being a fellow member of my ‘disability club’. The assumption goes that we travel in pairs or groups all the time. And I’ve even had peers with disabilities at conferences ask him to do things for them thinking he was an attendant. Still, if he were an attendant, he’d be my hired attendant. I say with a hearty laugh, “Get your own!” Then, I introduce them to my better half and we all sheepishly chuckle about it.
When my husband was very small, he had a significant stutter. He wasn’t the textbook (here we go, stereotypes!) stutterer who stumbled through difficult sounds and syllables of his words. Oftentimes, a person would leave the room before he could get his first word out. As a result, he was a bit shy and quiet as a kid. He did receive speech therapy in school, though, to help him. He still is, to some extent, a bit reserved, but he also no longer stutters unless he is super duper tired or stressed out. But what difference would it make? I wonder if the effects of being dismissed because he couldn’t speak quickly have made him somewhat reserved and quiet, more deliberate in speaking his mind or if he’d just be that way anyway. He’s an awesome listener, but he also has a lot to say that’s profound, witty and intelligent.
I find it interesting that the same, quiet little boy some people never stuck around to listen to is now a man with a degree in History. He’s full of dates and facts, has a working background in juvenile delinquent education and has conversations with me and others on a daily basis. And the nature of his work with juveniles, many with learning difficulties, is to discuss solutions to correct things they’ve done wrong to see if he can get them back on the straight and narrow. He has done well by me and by these juveniles to never assume anything about ability or disability, nor about living in a good or bad circumstance based on the offense, etc.
Assumptions get us in trouble every time, coming and going. Whether we have disabilities—visible or otherwise, we are all on the giving or receiving end of wrong assumptions. You know what they say about the word ‘assume’. I don’t think a donkey’s rear end would appreciate the comparison, do you?