I’d rather hang myself than hang myself

My wife found this image a couple of weeks ago on Facebook and asked what the bastard had to say about it. Always being one for replying to things in a timely manner, here is my short and sweet answer:

I think the headline says it all, I would not be caught dead in such a contraption. It’s inanely ridiculous that he needs to inconvenience himself publicly in such a manner in front of all their friends.

How low can one stoop in trying to live up to some ableist norm? Apparently low enough to hang from the ceiling like some crippled Pinoccio at one’s own wedding.

Hangman

I am pretty sure if my wife saw me hanging like that she’d get all excited and think it was some new kinky game I had invented. And in that case I would find it rather inappropriate in front of our wedding guests.

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Internalized ableism – childhood edition

This post is inspired by some stories I have read on one of my favorite blogs, whatdoyoudodear. The blogger, Mary Evelyn, who is the mother of Simeon with spina bifida, has had some very inspiring guest posts in the series called “Mothers and Daughters” where people have talked about their childhood experiences with disability.

I think most of us can agree that growing up as a disabled child is different from that of those with no disability. But I have to say, for most of my childhood I didn’t think so. I didn’t feel different until I began school. The bullying, the stares and the whispering was what made me aware of how I was never going to fit in and become that anonymous face in the crowd.

Granted, I spent way too much time in the hospital. When I was about three years old I was there for so long that I screamed and yelled when my parents came to pick me up. That was in the bad old days when visiting hours (4-6 PM) were strictly enforced even in the children’s wards. But home I went, kicking and screaming, so to punish my parents for having left me in that evil house of torture I refused to speak to them (and only them) for a full month – even at that young age I was able to teach my folks a lesson.

OK. My parents were not bad people. They were the reason I never felt different or special. They were simple people. Neither one had more than seven years of education. But they knew one thing that I think many other parents of disabled kids could learn something from. They decided from the very start that I was going to be raised just like any other kid – for better or worse. I was never given the opportunity to use my disability to my advantage. That also meant I was neither spoiled nor pampered because of it, like so many disabled kids I have encountered in my childhood and as an adult.

In fact, my mother had a simple saying that she would make me live by. She always told me: “If you want it bad enough, you can do it.” It became a mantra from my earliest years until I moved out of the house at the advanced age of sixteen. By then I knew better than my parents like most other teenagers. Needless to say, I couldn’t stand them and their horrifically antiquated way of doing everything. So off I went to test my know-it-all attitude against the harshness of reality. But this blog post is not about that particular rude awakening.

My mom’s wise words were sage advice to live by. Even when I challenged them as a twelve year old I still knew deep down she was right. My challenge went like this. I had tried to get her to buy me something that most certainly was the most important thing in the entire Universe. Don’t ask me what it was, I have no idea. Naturally, her reply was the famous, “If you want it bad enough, you can get it.” I turned around, smirking, and replied with a totally straight face: “Then I want a bigger allowance so I can afford [the most important thing in the entire Universe]” Needless to say she was taken aback. She sheepishly agreed that I was right this time around.

Thank God her bafflement prevented her from recognizing the obvious flaw in my logic. It took me many years to see it myself.

If I had wanted a bigger allowance bad enough I could simply have done more chores. Like most kids I was not very keen on doing any kind of housework. I always used the fact that I was a kid to get out of it when possible – using my disability never entered my mind.

The point of this is that she would tell others how I had always been told I could do whatever I wanted as a way of putting me on equal terms with other kids. And she firmly believed it prevented me from using my disability as an excuse for anything. She might have seen me as special but it was never because of my bodily condition. If I was special in her eyes it was for other reasons all together.

That doesn’t mean I never experienced being treated differently. That’s something that happens every day to all people with disabilities. And by different treatment I mean both preferential and discriminatory treatment. Obviously discrimination is wrong. Preferential treatment is another matter. It’s a double edged sword.
I would lie if I said I didn’t enjoy skipping amusement park lines and free admission to the movie theater. I would also be a hypocrite if I said I didn’t milk the situation and stayed on the rides until I got bored with them. I always thought my actions were justified in the light of the things I had to endure, most of which was due to people’s faulty perception of me. To a large extent I still think my actions were justified.
But I also believe preferential treatment must never become the expected. Once expectation kicks in, you know you are have crossed the threshold of being overindulged. If these small perks remain a pleasant surprise every time they occur I think their existence is justified. I also think it’s very important for parents of disabled children to teach that particular point to their offspring. Enjoy the positive things in life but never take them for granted.

At the same time the little ones need to learn to stand up for themselves (pun intended) when they are being treated unfairly. I have been an activist my whole, fighting for justice when needed and tilting at a few windmills in the process. But the most important thing I have learned is to enjoy those small moments of joy that come in everyone’s life. Learning to strike the balance between fighting for your rights and accepting the good thing that comes your way is something all parents should instill in their progenies.
Looking back I can see how growing up amongst non-disabled kids did grant me some special attention (I am sure it wasn’t all because I was the cutest kid on the block with my blond curly hair and my bright blue eyes) I never really had any disabled friends and I do consider that a stroke of luck. The only time I saw other children with disabilities was during the visits to the orthopedic hospital and the occasional dreaded meeting with other parents of disabled children. I particularly hated the latter. I was such a uppity little nerd. I liked the company of adults much more than that of other children in general and disabled kids in particular. Those cringe worthy gatherings made me feel like I was pushed into the company of kids I had nothing in common with. I was used to playing ‘normal’ games, running around playing tag or hide-and-seek. Here I had to be mindful of all those little pampered princes and princesses? Most of whom felt special as a result of overprotection and unnecessary coddling.
I don’t think my parents particularly enjoyed those meetings either. I only remember going to a few of them during my entire childhood and I know from others they were a fairly frequent occurrence.

I didn’t have any disabled role models growing up. I was not around other disabled people so there was nobody to fulfill that role for me. At the same time I didn’t feel very different except for when kids in school would bully me. It annoyed me immensely at times. But as I said before, I enjoyed the company of adults much more than that of children anyway.

When I was 14 one of my favorite adults changed all that. He helped me find the perfect role models. Perfect for me, that is, not necessarily what my parents would have called ‘perfect’ by any standards. The person who helped me was an outstanding teacher who insisted on getting me the best education possible. He would come visit me in the hospital when necessary. He made sure the school bought some weights so I could pump iron during gym class. He always went out of his way to make sure I did well. One day he brought a magazine from the National Disabled Sports Association. It was an introduction to all the sports they offered in Denmark. “Take it home and pick one,” he said. I felt no need to take it home. As soon as I had flipped through the magazine I knew I wanted to play wheelchair basketball. The pictures of it was enough for me to decide. But I took it home and a few weeks later my dad drove me to my first practice.

There I met a group of guys who would change my life forever.

The team primarily consisted of 25-35 year old men most of whom had grown up together in the ‘bright era’ of closed institutions. They had the same education in electro-mechanics (that’s what you could become if you were a young cripple in Denmark in the 1960’s) and nobody was less than 10 years older than me.

With these guys I found a camaraderie that I have never experienced anywhere else. To this day I have not met a closer knit group of people. The tone amongst them was of a character that generally was unfit for polite company. The humor was grim, bordering on morbid and always with a disability twist. The level of irreverence regarding anything disability related was more pronounced than anywhere I have experienced since – and trust me, I’ve been around! Words like ‘lame’ and ‘cripple’ were reserved for the aforementioned polite company, they were considered mainstream. In other words, this was the prime place for a 14 year old to grow some proverbial chest hairs.
I was compelled to relate to my disability in a way I had never done before. Where most people experience their disability as a symbol of exclusion it was a symbol of inclusion amongst these guys. They knew they were different and they were proud of it. They had experienced a life that I can’t even imagine to this day. Because they had grown up together (most of them were affected by the last polio epidemic in the country) they had a code of conduct and a companionship that was unique. They taught me to embrace my identity as a disabled man (even if I was still only a kid) They taught me to grow up and take responsibility for myself before I was truly ready for it. All I could do was hang on for dear life – so I did.

Through their friendship I learned to regard my disability as an intricate part of my identity. I learned to look at it as the foundation for my dignity and as the platform upon which I developed the self that I would become. It didn’t take long before I appreciated who and what I was. I was an athlete and a damn good one at that. And after a few years I was up there with some of the best in the world.

I was a virtuoso in my chair. This was also the result of dumb luck. I got my first wheelchair when I was 10 after a whole summer in the hospital and some serious surgery on both hips. That chair became my new best toy. I immediately practiced doing wheelies and soon I was practicing going down stairs. So at 14 I was the wheelchair equivalent of Evel Knievel, something that suited perfectly to my career as an athlete.

Spending 2 nights a week and many weekends away from home with the team (and a few years later with national teams, both basketball and track) my disability became my strength.

During those years I also learned how other people would see it as a limitation but I never bought into their perception. I had been taught otherwise. I was my disability and I identified with it as much as I did with my name. It served me well and nobody could tell me otherwise. It didn’t mean I was the happy-go-lucky cripple. I had my ups and downs like so many other people and many of them were connected to my life with disability. But I knew who I was, a dignified cripple.

It took me many years to realize how my attitudes towards other disabled people (particularly children) were a form of discrimination. I was practicing internalized ableism. A practice where disabled people adopt the ideal of normalcy and turn it against themselves. In my case I turned it against other children with disabilities whom I saw as undesirable and unwanted as playmates. Looking back on it I am embarrassed, especially now when I see myself as someone who fights for disability rights. I am fairly sure that always meeting those other children in artificial settings associated with something negative, like the hospital or the parent gatherings connected to the hospital, were one of the main reasons for my bad attitude towards them. So when I finally met some disabled people I could look up to it was in a setting that were full of joy and excitement.

It is my firm belief that we need to normalize the experience of disability for our kids – both those with and those without impairment – at the earliest possible age. Otherwise we risk them not being able to understand and accept disability. I consider myself lucky that I did not end up as someone who hated those I am most closely related to. It could easily have happened if I had continued practicing my internalized ableism.

I know my story is unique in many ways. But it is my sincere hope that some of you parents out there can take from it what you need to raise your children to become human beings who look at themselves as people who deserve the best in life without succumbing to the degrading limitations imposed upon them from majority culture. Help them find their self-esteem so they can live their life in a way that suits them – whatever that means.

Exoskeletons and repairing disability

Yesterday I read a tirade from a mutton headed nincompoop who put it upon himself to “repair” disability, in particular those of us who use wheelchairs as our preferred mode of locomotion. His brilliant idea: exoskeletons. According to him (of course it’s a man!) all our problems would disappear if we had exoskeletons.

The piece is called: “In the Transhumanist Age, We Should Be Repairing Disabilities Not Sidewalks.”

I repeat, repairing disabilities (sic.) Who does this person think he is? And even better, what does he think disability is? He sounds like some televangelist who wants to ‘repair homosexuality’ because we all know ‘they are just broken inside’ and need fixing. Disability is something that is there and always will be, unless we use eugenics of course – that might just be the way to ‘repair’ it.

The entire essay is built on one misconception supporting the next. The cardinal misconception is the one I just mentioned; there is no way of fixing disability. And to think that exoskeletons will do so is beyond naïve, it is downright asinine.

It almost feels sad to inform the writer that his beloved exoskeletons are just another assistive device in a long array of assistive devices going back to Paleolithic times, most likely starting with a simple stick. It’s a crutch, both literally and figuratively. Not only that, it is a hi-tech version of a technology that is tried and tested and found utterly cumbersome compared to the wheelchair which he so despises in his omnipresent ignorance of anything disability related. The exoskeletons are nothing more than fancy braces and my hairs start standing on end in the memory of how my fellow cripples had to wear those heavy and awkward contraptions on their bodies while lumbering away at a snail’s pace in the 1970’s and 80’s. So when he says:

“I’m wondering if the nearly three million Americans in wheel chairs (sic) might rather have exoskeleton suits that allow them to run, jump and play active sports.”

The answer is a resounding ‘no, they wouldn’t.’ There isn’t much running, jumping and active sports involved and it’ll be a mighty long time before there will be any. Besides we are just not interested when we have a cool device called a wheelchair. For more on why walking is overrated look here:

As the above text shows, it is a common misconception among bipedal people that we want to walk again. I am certain there are a number of people in wheelchairs who would want to walk if they suddenly were cured. But to think that such a contraption would be the answer is downright dumb. It doesn’t have much to do with walking after all.

Besides, the wheelchair is based on humankind’s most ingenious invention ever; the wheel. It is very hard to beat that, I might add. I know very few cripples who would rather be trapped in a cheap knock off of an Iron Man suit than have the freedom of locomotion that a wheelchair gives.

But then again, his language quite clearly implies that he thinks disabled people are not really people. We are more like the robots of his dreams. His parting words says it all:

“In short, let the sidewalks remain in disrepair. Instead in the transhumanist age we’re now in, let’s work to repair physically disabled human beings, and make them mobile and able-bodied again.”

So screw those who are less fortunate, let’s go play with our new toys and eventually those toys might lead Tiny Tim to Robot Heaven.

scaffolding
Disability repaired