I don’t see you as disabled

A few days ago I was talking to my co-worker. We were discussing an upcoming event (I work at a patient organization) and she says to me, “Remember, there is going to be a lot of people in wheelchairs.” I said, “Yeah, I know.” and then suddenly her eyes became twice as big and her face turned beet red, and she said, “I forgot you are also in a wheelchair.”

Now, I was sitting in my chair right in front of her with nothing between us. The evidence was right in front of her. She quickly starts explaining how she doesn’t see me as disabled and how I was different from most of our members. I understood her. I have tried it so many times. But should I be offended? I very much see myself as disabled, it’s part of my identity. I can’t imagine not being disabled, I’ve never tried it. I am proud of my disability, it has made me onto the man I am. In a sense I had every right to be offended. She didn’t see me for who I am. What is wrong with her? Is she blind or just plain stupid?

But I didn’t feel the need to be offended. There was no need for that simple reason that I have been in that situation so many times in the past. And it always happens when people become so close to me that they no longer have any defenses towards my disability. When it is the most natural thing in the world that I am who I am. So I told her that I knew she wasn’t just a co-worker anymore, I considered her a true friend. Of course I had to explain it to her, but I think she got it.

I know what goes on with others on a subconscious level. It has to do with what social psychologists call the ‘in-group, out-group model’ which is the basis for all social injustice, be it sexism, racism, or ableism. My co-worker didn’t see me as a representative of an out-group but part of her in-group and she got embarrassed because she so blatantly made me see her bias towards others in wheelchairs.

But I have also been offended in the past when people say “I don’t see you as disabled.” Often people will say it in a way where it is blatantly obvious that they do see me as something other. I think to myself, yes you do, but you might be on the road to where you want to be. If the need to say it is strong enough to be voiced, you are just not there yet. Some are sincere while others just want to be cool and feel the need to say it. To me it is such a cliché. But I can’t confront people with it. I have to be PC and just eat it. Once I answered an acquaintance, “I don’t see you as disabled either.” Wrong reply! The lady started bawling. I should have known, she was rather overweight. So here I was, a chance meeting in front of a strip mall and I had a crying lady on my hands. Just because I wanted to be a smart alec.

So back to those who truly don’t see me as disabled and don’t talk about it (first rule). They tend to forget the few instances I do need help. One friend was notorious for leaving me in his car. He’d get out of the vehicle and expect me to follow even though he had put my chair in the trunk. I have sometimes sat there for a full five minutes before he would return to pick me up. He would never excuse himself, most of the time he would give me a hard time for not having followed him into wherever we were going – he always had a wicket sense of humor, that might be the reason for or great friendship.

I travelled from Denmark to Bulgaria with another long-time friend. We drove in my van and he helped me time and again on the way there. But when we arrived at the house we were staying at that had six steps up, he started just going into the house and go about his business, not looking back and helping me. When he had done it three or four times, I decided not to say anything or make him aware of my presence – just wait in the yard. After a few minutes he came out and asked earnestly what I was doing there. Later that evening he confessed he was ‘the world’s worst aide’. Since I never paid him, all I could reply was that he was worth every penny.

So why are these deeds of apparent neglect Something positive to me? Shouldn’t I be annoyed when they don’t grant me the common courtesy of helping the that little bit I need when I need it?

No. Because they see me as I want to be seen. As a person. They see no difference between me and them, so they forget that the difference does exist when it comes to tackling certain physical barriers. They no longer practice othering when they are with me. In classical social psychological terms, I am a member of the in-group.

Othering is a difficult thing to tackle. I am convinced we all do it. I do it myself every day. If I see someone with a different cultural background I automatically have assumptions about how he or she is and what I can expect from them. I do it with people with different disabilities as well. I think it’s a biological defense mechanism, we need to be wary of those who are different, they might also be dangerous. Othering is not racism, ableism or any other -ism, but it is the basis for all of them. It is a subconscious way of acting towards those who are not know and therefore potentially not safe.

Inspiration without porn

I have spent several blog posts giving inspiration porn the bad name it deserves. I think it’s pathetic that people use images of disabled people doing perfectly normal things only to feel good about themselves. Look here and here

So today I am going to show what inspiration porn isn’t.

I have a friend in my native country of Denmark whom I still haven’t met even though we live less than 5 miles apart. We are always too busy to be able to find a time to meet so our relation is mostly through different kinds of media. We publish in similar places and we interact on social media.

I think she will be proud if she saw me introduce her as a radical-lesbian-cartoonist-disability-rights-advocate, so that is hereby done.

Since we are both into women I guess the only significant difference between us is that I am not a cartoonist – even though I’d like to be one sometimes.

About three years ago Sarah virtually stopped breathing and I virtually stopped peeing. She decided it was time for a vent and I thought I’d better go on dialysis. It has been interesting to follow her progression. It was very similar to mine in the sense that we were both born with our disability and suddenly one of our vital organs quit and we had to accept the life of a cyborg. We both find a strange satisfaction in telling our friends we are cyborgs. At the same time we curse the damn machine that limits us in out daily life.

But yesterday Sarah took the cake. She jumped off the deep end and showed that being on a vent really is no hindrance if you have a dream. She decided to audition for X-Factor Denmark and (spoiler alert for those who know Danish) not only that, she moved on to the next round.

Please allow me to introduce

Sarah, the Breathless Singer

So why is this not inspiration porn? Well, Sarah is not able to breathe. She will never be a great singer, she doesn’t have the air for it. She probably doesn’t really dream about a career in music. I know for a fact she is busy changing the world in so many other ways that I am sure her passion lies there.

To me Sarah is truly inspirational because she lives out a dream.
She is doing something that transcends her disability. She will never be a singer. But she still wanted to audition for a popular TV show. She didn’t expect to move on in the competition even though she did. She has a beautiful voice but it’s by no means a ‘great voice’. Why is it not a great voice? Because there is a piece of machinery behind her back controlling the air that goes into it. All she controls is her vocal chords.

And she did that fantastically. I am looking forward to seeing Sarah next time around. You go, girl!

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.

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

People will stare. Make it worth their while.

I found this meme on my wife’s Facebook wall today. At first I chuckled but as the day went on it kept sticking in my mind. Most of my life I thought I was a master of the art of making people stare. But at a fairly ripe age my wife would teach me how I knew nothing about it.

This is the story of how she lectured me in the fine art of making people’s stares worth their while.
People will stare
I grew up with the stares. There has never been a moment where certain people didn’t ogle me. Being so used to it I usually don’t even realize how much people stare at me. It has become second nature or part of living as wheelchair user in a bipedal world.

I still remember the discussions I had with my wife about it when we met. She was both surprised and slightly annoyed when we were out. I still remember how she would react by blatantly staring back at those who were most obvious about it. But after a while she changed tactics. She started doing exactly what this meme said – make it worth their while.

One of my favorite “make it worth their while” moments is when I ride an escalator. As most wheelchair users know, this is a pretty cheap trick. It’s fairly simple to use an escalator when you ride a manual chair. Get the track and when it starts going up, pull your wheels up to the step and your chair will rest nicely on the steps. All you have to do is to hold on to the railing all the way up like anyone else standing on their legs. I have always enjoyed the stares when I ride escalators. They go from the merely skeptical to the truly horrified.

The only trick that truly tops riding an escalator is doing wheelies down a short flight of stairs. For many years in my youth it topped the list of my “make it worth their while” moments. However as I have grown older I it has trickled down the list after I realized that witnessing it could cause a heart attack in some people – and then it suddenly not worth anybody’s while, after all.

Needless to say, my wife got a kick out of seeing me ride the escalators. She is hardly an exhibitionist but she certainly experiences a level of joy when I cause shock and horror in those who don’t know any better. So I wasn’t surprised when, after only having known her for a short while, she topped my escalator trick by putting icing on it.
She was standing behind me as we rode up to the second level of the local mall. Suddenly I feel her hand gently grabbing me by the chin and pulling my head back. I looked up and saw her face only inches away from mine. And when we made eye contact she leaned down and kissed me passionately.

I will not even try to explain what people think when they see us riding up and down the escalator, kissing like a pair of teenagers (did I mention that her perfectly plausible excuse is that we are at the perfect height when she is standing one step lower than me?) The stares we get are priceless. The looks of disbelief and puzzlement are mixed with surreptitious stares and snickers or outright laughter.

It is one thing to see a cripple ride an escalator – especially when the elevator is right next to it in plain sight. It is also – for whatever strange reason – an odd experience seeing a cripple expressing passion for a fellow human being (trust me I’ve tested it) in public. But to see both things at once apparently is so outlandishly absurd that most people don’t know what to do with themselves – and then they might as well have a good stare.

Truly a way of making all the stares in the world worthwhile!

Inspiration porn as othering

The last couple of months has sparked a lot of debate about inspiration porn outside of the disability world. It started with the now infamous Superbowl commercials from Microsoft and Toyota, both companies feeling a need to show how people with prosthetic legs are able to lead perfectly normal – albeit bionic – lives. Granted we have come a long way with prosthetic legs – and good for those who wear them.

Those commercials showed two people who live life to the best of their ability. They have managed well for themselves. They might have some extraordinarily circumstances that make them somewhat interesting. But most people I know have extraordinary life circumstances and in that light these two were not that special.

I know a single mother of 3 who has unbearable pain. So much so she can barely get up in the morning. She needs help from her daughter to put on her socks and shoes to leave the house every day. Despite that she gets up, goes to work where she is on her feel all day long only to come home and collapse in bed at night because she has spent all her energy making ends meet in her low paying job. She is an extraordinary woman in more ways than I am able to describe. But at the same time she is not potential for a Microsoft or Toyota commercial. Why is that? She is way more disabled by her chronic pain than those two people with hi-tech bionic legs have been for a mighty long time. She truly struggles with her disability and she manages magnificently.

What is the difference between the single mom I know and the now famous cripples in these commercials?

All three do everything they can to live life to the best of their ability. But there is nothing inspirational about the single mom who gets out of bed every day despite a pain level that is unimaginable for anyone who hasn’t tried giving birth while passing a kidney stone at the same time (yes, I know such a woman as well.) People see her as an ordinary woman doing what society expects from her. Not as someone in whom we can bask in our inadequacies in the holy name of inspiration porn. She doesn’t have a visibly ‘sexy’ disability like an amputation or a sexy wheelchair (I know, I am damn sexy with my one leg and my shiny wheels – no need to tell me)

Somehow society has decided what disabilities are deemed ‘legitimate’ and which ones we’d rather not care about. And when someone is perceived as having a ‘real’ disability that person is also potentially an inspirational hero for merely living their life.

Living life to its fullest is by no means wrong. It is the fact that others regard it as an inspiration that I find both wrong and disgusting. Unfortunately there are many non-disabled people who don’t get it when we protest and tell them not to use us as their magic mirror – telling them they ‘are the fairest of them all’.

In the last few years a whole industry has boomed around this idea that disabled people doing something completely ordinary are superhuman. We have become the unwilling heroes in an industry that make non-disabled people able to feel good about themselves because they can reflect their petty little lives in ours.

This feel-good industry is fueled by an objectification of people who implicitly are deemed ‘less fortunate’. And it seems to please the masses of the majority culture to no end when disabled people can overcome so-called ‘unfortunate circumstances’ and achieve some semblance of normalcy.

Recently I ran across an article by Josephine Fairley (JF) in the British newspaper, The Telegraph. The article is a poignant reminder of how people with disabilities are regarded as something different from human beings. JF not only regards inspiration porn as something good. In her view inspiration porn, is considered “progress.” The progress lies in the fact that we are now being used for her and other’s emotional absolution instead of being shunned and hidden away like we used to be in a not too distant past.

To me it’s nothing short of a tragedy. That another human being can see progress when all I see is exploitation. At the very best it’s trading one ill for another.

JF completely fails to see that inspiration porn is no better than the freak shows of yore where disabled people were exhibited and dragged around the circus ring to elicit a sense of horror from the audience. The only difference between the two types of freak show is the audience’s expected emotion. We have traded the sense of horror for a shot of feel-good, hooray for progress!

I am not blind to the fact that on the surface of things it’s better for the audience to feel good about itself than to feel horror. But regardless of the instilled emotion the result for the objectified person is not much different. We are still a symbol of that which is different, wrong and beyond the norm.

Looking at a few other articles to see what kind of woman could come to such a lopsided conclusion I was quite surprised to find out her big issue is women’s rights. How can a person be an adamant supporter of human rights for one group of people whilst joyfully gawking at another group in the virtual zoo of inspiration porn?

This can only be done through the simple mechanism of ‘othering.’ People with disabilities are essentially different from those without. We are not really people after all. We are ‘other.’ Those whom fingers are pointed at. We are basically regarded the same way people of color were 200 years ago, humanlike but fundamentally different and lesser than. We are implicitly seen as subhuman.

The fact that a (presumably intelligent) woman JF finds it in her to describe inspiration porn as progress while fighting for women’s rights tells me that we are viewed as subhuman whether it is acknowledged or not. We are simply reduced to stooges in the inspiration porn circus.

We are deviant and different by means of our physical bodies. Our deviance recreates us as a magic mirror for the majority to reflect itself in and feel good about itself. And when we are reduced to act as that magic mirror it is easy for someone like JF to fight for the rights of one minority and not for another since the other really is the Other. Subhuman and deviant.

The perks of being a wheelchair user

About a week ago I read a post on one of my favorite blogs, whatdoyoudodear.com, it’s run by a woman named Mary Evelyn. She is the mother of a little boy who has spina bifida. She has some great and often surprisingly funny observations about being the parent of a disabled child.

This particular post was aptly titled; The troubling side of wheelchair perks and special treatment. It’s about how her son gets extra attention because of his disability, how he will be offered cookies at restaurants and in the store or how a friend of hers at Disneyland experienced Mickey Mouse walking past a long line of kids to greet her disabled child. As soon as I read it I knew I wanted to write about it but it took me a few days to get my head around it since it’s a subject that sparks all kinds of opposing thoughts and feelings in me.

These are the sort of things I have experienced 1000s of times in my life. They are an intricate part of growing up with a disability, everyone has a ‘special’ eye on you and you will be the first one to attract attention from adults in public. As Mary Evelyn points out it’s a treat in a world that otherwise mostly is hostile towards her son. And I’ll admit it, I have almost always eagerly accepted the perks I was given because of my disability. I have taken in all the little tokens of supposed charity, the free trinkets and rides and whatever. They have been the fun side of having to live with a disability and I have laughed with my friends when they were over the top or just plain off the wall. But I have also always had to deal with drunks, derelicts and crazy people who either felt sorry for me or just saw me as an easy prey for their tiresome tirades – and trust me, they are very difficult to get rid of. Subtle hints have to be delivered with a jackhammer and sometimes powered by a small missile.

One of the things Mary Evelyn wonders about is when is it gonna stop and what will happen to her son when it does? When is her son no longer ‘the cute little boy in the wheelchair that deserves special attention?’ How will he react when that attention is no longer there? Those are some valid questions that I will try to answer here. Of course this is all my personal perspective and it may not apply to others but at least it’s one answer.

I could easily say it never stops. In general people treat me differently than they do others. It’s only a few weeks ago when my wife’s daughter noticed how we were able to pick up way more food at the food bank than if she had gone there with her mom. I think that is very likely. People who are naturally charitable do tend to be even more charitable towards me – even after I became an adult. I remember at a charity Christmas party where people could give gifts to whomever they saw fit I was showered with literally hundreds of gifts. I had friends bring them to my house in their cars and trucks and it took me days to unwrap them all. I tried to make people stop bringing me more gifts since I felt there were others who were more deserving than me. But every individual wanted to show me that they in particular cared about me so I gave up.

Then there are the more organized perks like free or reduced admission to certain museums or national parks or greatly reduced rides on public transport but on the grand scheme of things they will never make up for the limited access I experience in my everyday life, shops, public buildings, schools etc.

I could also say the perks do become less as I get older. As a young man I could get away with many things that I just can’t do anymore. No more free cookies at the store, no more skipping the line and staying on the rides for as long as I wanted at the local amusement park, Tivoli Gardens. The little perks definitely do diminish over time but I don’t think it’s something I ever thought about growing up. It was more of a natural process, it just happened. As a teenager I remember enjoying less attention, I wanted to be like other teens and that was very difficult when I would draw special attention from adults – so of course I mostly remember how much attention I did get. But in all honesty it was certainly less than when I was a child.

I can hear some of you scream: “But you always get the good parking spaces.” That might be true sometimes. But often they are filled with people who might or might not be worthy of using them, people who have gotten a parking pass one way or another for whatever more or less dubious reason. And when they are full I need to park at the very far end of the lot to avoid someone parking next to me. I personally wish they made disabled parking spaces that were far from the entrance for those of us who just want the more room to get out and don’t mind going a little farther to get into the store – that would make sense to me, nobody would try and ‘steal’ the space then.

But it’s really not about free cookies and parking. There are bigger issues at stake here. One of the main ones is that this charity is based on the view that we as disabled people/children are seen as different from others. As Mary Evelyn points out, the impact this kind of treatment has on siblings to disabled kids can be pretty detrimental to them. I have experienced that on many, many occasions. Unfortunately this is most often overseen or directly ignored by many people as they are not able to fathom what it’s like to be the child that is not being acknowledged. Of course, I have only experienced it second hand so I will refrain from going further into it here.

What I do want to touch upon is how these seemingly charitable acts are symbolic gestures that alienates disabled people and puts our otherness on public display. We are not naturally deserving of special treatment in all situations. Sometimes it’s nice to just be a person. Yes, a person who uses a wheelchair or someone who can’t see or one that has cognitive issues. But after all we are just people, we may be outliers on some scale of normalcy but so is everyone else. I don’t know anybody who is average in all ways of being. The problem is that we have become a symbol of that difference that exists all over. We have become that symbol because we need some compensatory measures to live our lives and most of us are glad to utilize those compensatory measures when we find them.

Unfortunately these days I experience that the wheelchair perks usually are nothing more than bribes to compensate for the lack of compensatory measures.

Everything that helps disabled people gaining access to services are fine with me but it makes no sense receive an ice cream because I can’t go up the stairs with my friends at some museum (yes, that has happened.) And it makes no sense when a friend of mine experience that he can’t bring his service dog into a restaurant and after he complained about it they offered him a free meal. That’s nothing short of an insult, how do they expect him to come to the restaurant when they won’t let him bring his service dog?

These are the kinds of things that make it really hard to happily receive things because of my disability. But then again, I’m a sucker. So I will most likely take the bribe next time it is offered to me.

Discrimination – IKEA edition

In the Scandinavian countries IKEA has a pretty sweet system for families who are shopping at their warehouses. They have a big playroom with staff where people can leave their children after the parents have filled out some paperwork and provided a mobile number so they can be called if there are problems with their offspring.

I am telling this to introduce a story I got from my Norwegian sister in-law, a story that outraged me when I read it.

A Swedish family arrives to their local IKEA with four of their five children, one of whom is Texas, a four year old boy with Down’s syndrome. They go to the playroom and fill out papers for three of the children and not for Texas. In the past they have had experiences where Texas has been denied access to the playroom because of his Down’s syndrome and his older sister because she has CP.

Assuming they have forgotten the paperwork for the fourth child the young man who oversees the children just hands them another slip and tells them that they forgot one. The mother points out that he has Down’s and the youngster replies “That’s not a problem,” and continues to let the children into the playroom. After the visit to IKEA the mother goes home and puts up a grateful post on IKEA’s Swedish Facebook page, ending up getting close to 100.000 likes within 2 days.

It seems like such an innocuous and sweet ‘human interest’ story (some might even call it inspirational – if they dare) and it makes it way to the mainstream media in several countries; so why am I so enraged by it?

I am enraged because it IS a story; because it is being repeated in newspapers in several countries; because 100.000 people think is even noteworthy, not to mention great or extraordinary. Because they fail to realize that it should never be a tear jerking event that a child gets to play with his siblings and the other kids.

What’s so sweet about treating a little boy like… a little boy? Why do nearly 100.000 people think it’s worth ‘liking’ the fact that a human being is treated like… a human being?

The simple answer to those questions is that those 100.000 people and many more with them do not see disabled people as people. They might say they do but their actions speak differently. And that is what disabled people have to endure every single day… every single day! The degradation, the humiliation, the indignity, the pity, the stares, the underhand comments, yes, we just live with it because we know intrinsically that we will never be seen as real people – at least not in our generation. And that is why some of us work hard to have future generations feel less of an impact of this subtle (or even not so subtle) discrimination that we meet on a daily basis.

If there should ever have been a story it should have been when Texas and his sister were denied their human rights. That should have earned IKEA at least 100.000 ‘thumbs down’ on Facebook. There should have been an outcry when these children were told they were sub-human by IKEA staff and refused entry to the playroom because they were not seen as children but as freaks who we can mistreat however we see fit.

Now that sort of story would have been newsworthy whereas the story of how Texas was let into the playroom seems so utterly natural that it should never have hit any kind of news outlet.

I mean, he’s not going to contaminate the other children with some kind of mongoloid cooties. He is a 4 year old boy with some developmental issues and so what? Are the other children going to not play with him because he looks different? Well, only if they have been taught not to by ignorant adults not to do so. Is he going to be seen by them as fundamentally different because of his developmental issues? I doubt it, children play with other children regardless of their age or their maturity – they take him for what he is, a four year old boy.

The only thing that will prevent him from being able to go into the playroom and play with the other kids is a lack of intelligence – and not on his part but on the part if the imbecile adults who treat him as something fundamentally different from his fellow human beings.

To make this even remotely newsworthy tells me that we as disabled are far, far from ever being accepted into the societies we live in. We are natural outcasts and the only reason we are no longer institutionalized and hidden away is that our societies have made laws against segregation. But when it comes to the way we are treated by the individual human being there is still a long way to go.

We are something to be feared. Not as individuals but on a symbolic level. We are the symbol of a tragedy and therefore we are highly feared. Who wants to deal with suddenly being blinded, deaf or losing one’s ability to walk, act or think properly – of course nobody does. I don’t want to lose some of my faculties. But that doesn’t mean that a life as a disabled person naturally is sub-human. There is a strong tendency amongst all living beings that they learn to survive with the most hostile conditions. As far as I see it it’s a biological trait that is intrinsic to being a living organism.

In that light the actual disability becomes ‘just another challenge’ for the individual. What makes it most difficult is the way it is thought about, both by the individual and by everyone else. The abstract idea of ‘disability’ is scary and anxiety invoking to most of us and that anxiety leads to a strange kind of bigotry. After all the things we fear are also the things we end up hating the most, consciously or subconsciously.

However, a vast majority of disabled people know that it is not the impairment that is the big challenge for us, it is the bigotry that comes from small minds who in many instances say they just want to do good for us while treating us as children or sub-humans. And a large number of us find it far more disabling to be that person who is not able to see their fellow human beings as fellow human beings than it is to live with a physical or mental challenge.

So to the 100.000 Swedish IKEA customers out there, shame on you for thinking IKEA did a little boy a favor by treating him as a human being.

Inspiration porn is bigotry

A friend of mine asked me the other day, why do you call it ‘inspiration porn’ when people are inspired by you? Why aren’t you flattered instead?

The last question was easy to answer. I explained the difference between inspiration porn and true inspiration to him. True inspiration simply being when someone inspires because they go beyond what is to be expected by a fellow human being. But I had to think about why it was inspiration ‘porn’ and it dawned on me that it is porn because it elicits some of the same feelings of satisfaction as porn does and under the same conditions.

Both old fashioned sexual pornography and inspiration porn objectifies a certain group of people so that another group of people can get off on it. Both types of ‘porn’ forces the second group of to view the first group through a an extremely narrow lens whereby they are seen as something that deliberately elicits a certain emotional response that has nothing to do with what they really are but everything to do with ‘how we’d like to perceive them.’

There are few things in life more gratifying than feeling good about who you are. It is a fleeting high that we can all relate to. It feels great to put one’s life into perspective and feel wonderful about ourselves. And for many the gratification of superiority is not unlike the sexual gratification of watching pornography. There’s a release of endorphins and other chemicals in the brain that make us feel better afterwards.

I’ll be the first one to admit that it is extremely easy to look at another human being who you think is in a worse predicament than yourself and think, “Thank God that’s not me”. There is one small flaw it this way of looking at our fellow humans, though. We just don’t know what it’s like to be them.

I remember back in the early 90s I became very inspired by a short clip from the movie Baraka showing the untouchables in Calcutta picking up scraps from the landfill to live on. Suddenly a young girl cracks a beautiful smile in the midst of what most of us would regard as the epitome of misery of the human condition(1:28 in the above link). A few weeks later when I was confronted by someone who found me ‘oh, so inspiring.’ That event made me think about that smile again – about how that had been my source of inspiration – and it made me realize that whatever circumstances a person is living in, they will try to make the best of it. And that nobody can ever be judged by anyone else because that other person will always use their own standards for making such a judgment.

It doesn’t matter whether one is an untouchable teenager in Calcutta, a middle aged cripple in a smart wheelchair, an old grandma with gout or a young stud who thinks the world is his oyster. We all have certain standards for what the good life is. We all have our ups and downs. What would break one will make another and vice versa. Why view another human being through the lens that is your perception of their misery?

Whenever I meet someone who is an outright bigot or even someone who expresses views of inspiration porn one thought comes to mind. My excuse is that I was born with this disability while they more or less consciously chose the thought patterns whereby they are judging me. The sad thing about it is that I have those kinds of thoughts virtually every day I go out into society.

And that is the root of the problem. There is a societal norm that disability is inherently bad. In turn, disabled people’s lives also are inherently worthless. And it is that societal norm that has to be changed if the lives of disabled people’s will ever get a chance to change. It has been said by many disability activists and disability scholars; it is not the physical challenges that make us disabled inasmuch as it is the way we are perceived by others. And that perception can change if enough people make up their minds and get behind such a change.

According to the American Psychiatric Association homosexuality was regarded a mental disorder until 1974 and had its own diagnostic category (it was abolished by a vote at a psychiatric convention – true story.) Now 40 years later gay marriage is normalized in most of the civilized world.

So what is the truth? Are homosexuals mentally disturbed freaks who should be treated for their terrible disease or should they be allowed to marry and to adopt – or even give birth to – children?

It is simply a matter of perspective and common attitudes towards a group of people that determines the truth. A perspective that (fortunately) has changed within my lifetime when it comes to gay people. And if we fundamentally can change the view on sexual preference why shouldn’t we be able to change the view on disability? Why is it so difficult to understand that disability does not equal tragedy?

There is no need to look down at us with that pouty face and tell us why we are so brave for getting up in the morning.

OK, I do think it’s an extremely brave thing of me to do; getting up in the morning – just like I think it’s a brave thing that everyone else gets out of bed (except for those annoying morning people who actually like getting up in the morning – freaks they are!) What makes a human being decide to leave their warm nest and go out and face the cruel world out there? I don’t quite get it.

The point is that nobody should feel the need for being inspired by me doing mundane, everyday things.

I am not saying that life as a disabled person is easy by any means. It is physically challenging being disabled! Most things take longer to do and many of them are difficult if not impossible to perform – like climbing stairs in a wheelchair or reading subtitles when blind. But the physical obstacles are a lot easier to deal with than the mental obstacles of living in a society where one’s basic worth as a human being is looked down upon by the majority.

The only reason someone can feel the least bit inspired by a disabled person when that person does things that are quite natural to others is that they did not value them as a human being to begin with. And when the devalued (or should I say, invalid) person performs tasks that go beyond what they are expected to do, then – and only then – do they become an inspiration.
Inspiration porn is simply belittlement in disguise. So when you think that it is so wonderful that the little blind girl is going on an outing with her classmates it says more about how you perceive her than it will ever say about who she is as a human being.
So why is it that there are not many disabled lawyers, doctors and scholars? It is not so much because of the physical barriers, it is because we have to climb the barriers of ignorance and denigration from those around us. We have to work 3-4 times as hard as others just go get over that and then we also have to fight the physical environment that we wish was the only barrier we met in our lives.