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

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.

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.

An innocent man was killed

I ran across a story about a man choosing to kill himself while still in a coma – yes, it’s true. The story clearly stated that they woke him up from his coma to let him decide whether he would live or die. Or, the way I read it, whether his family including his pregnant wife could help society save a ton of money by letting him be snuffed legally.

So what was the reason for this decision? He faced a potential future as a quadriplegic.
Here is a link to the story: http://news.yahoo.com/injured-indiana-hunter-chooses-end-life-support-181336165.html

Now, nobody knows how bad his injury was. The idiot doctors – along with the somewhat ignorant and (quite naturally) shocked family – made the decision to kill him the very day after his accident. They could not even wait for the swelling to go down so they could see what kind of damage he might have suffered before they decided on this course of action. Granted, the man had fractured his third, fourth and fifth cervical vertebrae. But he was still in a coma!!! There was no way of knowing how badly his spinal cord was damaged from just looking at the bone damage.

In my mind, this can only be interpreted as downright and premeditated MURDER!!

And I certainly hope somebody in the Indiana or US disability community sues those who were in charge of this decision for this act of homicide.

There is no excuse for killing a man under these circumstances whatsoever. I understand how his family will not be able to think straight in such a situation and therefore they should not be faced with this sort of decision. Whoever came up with the harebrained idea that they should be given this choice are the real culprits in this murder case. All they see is a man in a coma with a tube down his throat.

According to the story the tube played a major role in the decision to kill him. Of course nobody wants to see their loved one live with a tube stuck through their mouth and down their throat. And that is probably why I have never seen a quad who needed ventilation having a tube through his mouth. Ventilation is a high tech kind of thing and depending on the person, it can be very non-intrusive. But again, nobody knows what this man might have faced – because he was never given the chance to find out for himself. Nobody had the patience to wait until they could make a logical and thoughtful decision before they killed him.

And please notice that the story clearly states that he might have needed ventilation. It doesn’t state that he might never be able to walk. But my 47 years of experience with SCI tells me that there is no way in hell anybody can make a clear statement about these things within the first 24 hours of somebody’s injury. That is why this is clearly a case of premeditated murder and nothing less. There is no way that any person who knows anything about disability and is able to think straight can perceive it any differently.

The main excuse that the story states for killing him is that he wanted it for himself. The same doubt applies to him as does to his family. How can a man, injured the day before, woken up from a coma, only able to speak if they pull his life support away from him, ever make any kind of rational decision? Especially being presented with the idea that he has to live with aforementioned tube for the rest of his life – a blatant and utter lie. I have been in post surgery many times and wished there was a plug to pull when I woke up… also three days later when I was still feeling like crap, being hopped up on morphine as my only saving grace.

Of course the man wants to die. No matter how they presented the prospect of him not being able to walk or needing life support in the future, the mere idea of letting him know of these things (all of which were conjecture to everybody at the time) was so wrong that I don’t understand how there are no regulations in place against it. Let the man recover to the point where everybody have some kind of knowledge of what his prospects are before letting him know of his situation. And (this makes me want to throw up, just thinking about it) allowing him to consider any major life decisions should not be given until he has learned what his future life would potentially look like, which requires him to go through some sort of rehab in order for him to even be able to begin looking at his future in a somewhat rational light.

All of us who have been there in some capacity know that it might take years to get to the point where ‘the new life’ dawns on us and we see all the things that lay ahead of us – great and not-so-great – and we all know that this decision could never be made by someone who was just woken up from a coma.

How the doctors and administrators are allowing this sort of deliberate neglectful act is beyond my scope of comprehension. I am astounded to my deepest core. And I strongly believe it is a clear violation of the Hippocratic Oath.

I wonder if there is some kind of anti-disability legislation in Indiana that I am not aware of. Some pro-prejudice, disability-phobic law making that allows such a brutal murder to happen. And as if that wasn’t enough, letting a news agency, like Associated Press, make it into a positive story. I just have no way of showing the true level of my disgust in regard to all these people. It stinks to high heaven how little a human life is worth in Western societies in general (and Indiana in particular) where the mighty dollar and corporatism has taken over and left behind all decency and – now also – human life.

So what is the philosophical and sociological mindset behind killing this man? It is quite simply the ‘disability as tragedy’ view has always permeated Western thought since time immemorial. Disability as tragedy is the most direct outcome of ableism, a subject that many disability activists have talked extensively about so I would not go into it further here, given the importance of this story and the comments I want to make in regards to it.

The thought of living with any kind of life altering condition scares most people. And to a certain extent, it should. People might gripe about their life but when offered an alternative most would say no. It is the human condition to be afraid of the unknown and therefore we would rather choose the badness we already know over the potential badness that is lurking out there in the dark.

Disability is always perceived as one of those bad things that are out there, something that can befall any one of us at any given moment. It is the great bogey man of the old days in modern disguise. It can attack you in the middle of the night – or sometimes even in broad daylight, falling out of a tree.

But disabled people do not necessarily live worse lives than others. No, that’s not true – they do. But the main reason for the lower quality of life is not the disability as such. It is the stigma, the prejudice, the preconceived notions, the fear that others have of it, the lack of opportunity and all the other social barriers that we are faced with making our lives less worthy in the eyes of others.

I fully acknowledge if the man has claimed in the past that if he ever became disabled he would want to be put off life support. But I put as much stock in that sort of statement as I do in one from a young boy who wishes to become an astronaut when he grows up. Neither of them have any idea what ‘adult’ life actually entails preventing them from making rational decisions given their circumstances.

The article talks about ‘end of life care’ and the patient’s decision to pull the plug when facing a terminal condition. There is a blatant lack of ‘end of life care’ in this case, though. What is apparent is a man who had a tragic accident who is not facing an end of life decision. We are talking about a man who more than a reasonable chance of survival if given proper care. Not a cancer patient or someone with an end-stage chronic disease. But a young man whose life was ended by cynical and thoughtless people who couldn’t be bothered with helping him back to life so he could have a chance to see his yet unborn baby.

I am sorry, but I do not believe that ‘end of life as we know it’ qualifies for ‘end of life care.’ If indeed I am in the wrong there would be a plethora of people lining up for their lethal injections.

So who is at fault in this murder case?

Let’s start with the easy one, the man himself. He is not at fault by any means. He is clearly the victim here on all levels. He is the one to suffer the consequences of the decision. He is also the one who is blamed for having given the famous final ‘yay’. In other words, if everybody else will have a chance to live on without the guilt they obviously deserve, they will have to make him the ultimate decision maker. Since he is dead I guess it doesn’t matter too much. But regardless, he will remain the faultless victim on all counts.
His wife is not at fault either. I will give her the benefit of the doubt and say that she was ignorant of her actions, listening to the fucktards i.e. her sister-in-law and the doctors who told her to agree to this murderous act. They should clearly be incarcerated for what they did. It is enough for her to live with the realization that she was part of robbing her unborn baby of ever seeing its father.

His sister, the nurse who claims to know what her brother’s life was going to be like. She is to a large degree at fault. She quite clearly has no insight into the life of a disabled person regardless of her hollow claims. Those claims are no better than the person who thinks she knows everything about sailing because she once went for a ride on a ferry. She is clearly suffering from what I call ‘the clinicians blindness’ a condition that is seen in all places where professionals meet people with disabilities and/or chronic illnesses. The foundation for this blindness is that the clinician only sees the chronic patients when they are at their worst. They encounter all the things that can go wrong with a particular group of people, extrapolating that knowledge to the entire person and their life in general. Of course that is going to skew her view in a very negative direction to the point where she is blinded by it. So for her to make any kind of decisions based on this prejudice downright dangerous. And in this case lethal! I have a hard time holding her blameless for this fratricide, the fact that she doesn’t know better is no excuse for killing her own brother. And quite frankly if she is capable of doing that, my question is, how many other innocent people’s murder can she be held accountable for given her position as a nurse?

As for the doctors and administrators there is just no excuse. They are so at fault that I am not even going to go into the details of why – like I have stated over and over again: They are clearly guilty of premeditated murder!! Like I implied earlier, maximum security, mixed population, bunk beds and no opportunity for parole is the least we can do to rid society of these murderers.

Lastly, if I believed in heaven or hell I would also believe in a special place in the latter reserved for the family and doctors deciding to kill a fellow human being. And furthermore I would gladly apply for a job there with the promise of treating them fairly… very fairly.

Who’s disabled now?

Inspired by an essay in the Danish newspaper, Politiken, written by Sarah Glerup about her struggles with the level of understanding and insight from the people she tries to hire as aides, I thought I would write a little about the way a good many people view disabled. And I might warn you, it is not for the faint of heart. Sarah has muscular dystrophy and therefore she needs help with virtually everything. She has a degree in media science, works as a political communicator and is blessed with a remarkable talent for drawing; some of which can be seen on her blog:

Sarah starts her piece by quoting from an interview with a potential aide who claims to be well fitted for the job for the following reason: “I have a cousin with Down’s Syndrome so I already know a lot about the job.” Reading such nonsense I am not even quite sure where to start pulling this sentence apart. It assumes a level of generalization and dangerous assumptions that it makes me cringe. My head starts to spin contemplating the fact that there are people out there in the world who would make those words escape from their narrow minded consciousness, travel all the way through their vocal chords and finally pass their lips. Into the world where they will be picked up by none other than some keen observer apparently light years farther apart from the aforementioned cousin than the speaker herself – at least when it comes to level of intelligence and/or common sense.

I can’t help thinking how the moniker ‘disability’ is so incredibly inappropriate in a situation like that. The way I understand and interpret the concept of disability, the interviewee has far more to worry about than the interviewer. She obviously has to spend the rest of her life suffering from a poorly disguised cognitive/intellectual deficit leading her to be completely clueless as to what goes on in the world around her.

You might think that this woman don’t really perceive all disabled in the light of her cousin and that the quoted sentence was a slip of the tongue. Unfortunately the evidence says something else. In explaining how the cousin goes to a special school this escapes her unfortunate lips: “he goes there with other disabled people. I think there are all so cute.”

When I got that far in the essay, I couldn’t help reminiscing my youth. I had a very effective method of getting rid of people when I had had enough of their drivel about my disability (always people whom I had never met before who found it in their right to ‘feel sorry’ for me, always expressed in an indescribably pathetic manner)

My method was the following. I would look them deep in the eyes with a very serious and intense gaze, maybe even put a hand on their forearm to underpin my grave words. And when I had their full attention I would say the following: “You know, I feel very blessed, I have a disability for everyone to see. You, on the other hand, only show yours whenever you open your mouth.” And 9 out of 10 times they would get my message, shut up and disappear with their tails between their legs. The 10th person would need an even ruder brush off, which only goes to show people with cognitive deficits are not always that cute.

Unfortunately generalizations based on the ‘differentness’ of being disabled are all too common. If we are not cute all together, then we are to be pitied – and strangely enough it is my observation that those who harbor feelings of pity for me are the ones who themselves are in the greatest need of sympathy. And if we are not to be pitied, because some people think they recognize something super-human in our very existence, we are to be revered as the epitome of inspiration, usually based on the fact that we are alive (and God forbid, smiling) and able to live a life that resembles some kind of normal. If we are not inspirational and our disability prevents us from partaking in work or social life on par with others and we may end up in the hospital for a while, then we are leeches and freeloaders who are sucking the taxpayers dry by our mere existence. And if we are not leeches we might just be going about our business and suddenly a parent in front of us are pulling their screaming child in a direction where the child can stop staring at us and we are reminded that it would be best for all if we stayed home and never came out so people would forget about our existence, after all it is best if we are neither seen or heard of – ever – by these people.

In other words, the generalizations that we meet pretty much runs he gambit of human emotion and there is a plethora of specious reasons to feel one way or the other for ‘people with disabilities’. I have only mentioned some of the most obvious ones here. But at the end of the day they are all based on the most superficial and insipid sort of prejudice. The basest way of looking at another human being; finding one distinct feature that a group of people share and then making assumptions based on that particular feature while forgetting the human being wearing it. This prejudice is at the root of all bigotry, whether it be racism, sexism, misogyny, ableism, chauvinism, religious difference or any other practice of preconceived notions.

People with any sort of disability are as different from each other as any other group of people based on any arbitrary measure, like height, shoe size or hair color – just to mention a few that might not have a (well-known) -ism attached to them. What we have in common is that we are recognized by our societies to have a bodily or cognitive function that falls far enough from the statistical median to be recognized as something that requires special attention, be it medical, social or otherwise.

So what can we do to overcome this prejudice? If I knew, I am pretty sure I’d find some way to cash in on it. Unfortunately I haven’t got the answer and that is one of the (many) reasons why I am broke.

What I do know is that, yes, I see myself as disabled, but I think that’s the norm. I was born with my disability so quite naturally it’s all I know. What I see around me is all these weird ambulatory folks walking or running around in their odd bipedal fashion and think to myself, “don’t they know the wheel was invented so long ago it’s forgotten in the fog of history? Why haven’t they caught onto the fact that it’s so much easier using a wheelchair, it’s faster, it’s more fun and you can sit there pretty comfortably while roaming around.”

Ok, maybe I don’t really think so but if I was trying to reverse the ableist view that would probably be one of my first thoughts. I completely identify with having SCI because I have never known anything else. So to me it will always be the norm – even when I know it isn’t if I ask most other people.

Finally I want to apologize to people with cognitive disabilities. I have been pretty harsh on those I would not hesitate to call dumb and I have surmised they have a cognitive deficit which I truly believe they do, they are unintelligent! But in our society it’s not enough to be dim witted, dull, obtuse, slow on the uptake, mindless, moronic or idiotic to be deemed disabled and that might be why they consider themselves ‘normal’ but I think their cognitive disability is far more scary than those who are now deemed to have one. And this might be my own prejudice rearing its ugly mug here.

So call me a bigot, I might very well deserve it.

Martin Luther King and disability rights

Today it is 50 years ago Dr. Martin Luther King held his famous ‘I have a dream’ speech. Fifty years where many people have worked to expand equality around the World. And great progress has been made but even more needs to be done before we can call ourselves just somewhat equal. So I rejoice in the advancement that has been achieved. But I also weep when I re-read Dr. King’s speech. In particular, I weep reading passage:

“One hundred years later, the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination. One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languishing in the corners of American society and finds himself an exile in his own land. So we have come here today to dramatize an appalling condition.”

I weep because when I replace the word ‘disabled’ for ‘negro’ things are truly looking sad. Not just in the United States but in all the Western countries where I know disabled people – not to mention third world countries. In the intervening 50 years we truly have not come far when it comes to segregation, discrimination, poverty and misery for disabled people.

As a group we have poorer education than average, we have far poorer health (on top of our disability), we earn less money, we have a poorer social life and most importantly, we have much less access to things in our societies that others take for granted. Services are off limits for many disabled people. Stores, cinemas, museums, police stations, yes even hospitals are often off limits for those of us with different kinds of disabilities.

I am not here to compare the living conditions of disabled people in the 21st century to the black people in the 1960’s. I do not know what appalling conditions they lived under and quite honestly I dare not think about it. But I know a few things about what I and many of my peers have to endure. And that is enough to make Dr. King’s words ring equally true in our day and age as they did 50 years ago.

What my mission is today is to point out some of the subtle forms of discrimination and segregation experienced by disabled people on a daily basis. Things that were all addressed in that speech when it came to race; same things that are far from being solved today when it comes to disability.

Why is it that we are still not acknowledged as equals by others here 50 years after the civil rights movement? The easy answer is ableism, a term that is not very well known to those outside of disability circles. And if it is not known who is to blame?

I am sure I could point the finger at many groups in our societies. But I also think we have to look inwards on a day like this.

The black people of the 60’s worked diligently to be recognized. They formed groups, they took to the streets, they made their voices be heard loud and clear.

We have simply not been good enough to gather
as a coherent group to fight for the things that are blatantly wrong. Yes, we are surrounded by all kinds of discriminating practices and poor legislation. We are at the back of the line when jobs are created and we are the first ones to go when they disappear. We are dispensable in a lot of situations.

But we are also perpetuating that discrimination. We have internalized the oppression that we are faced with by accepting that we do not have the same rights as other citizens. And we have been conditioned to accept this as a fact of our societies. Too often we bow our heads and let the abuse continue – because what can we do? We don’t have a strong human rights organization behind us. We are not even a cohesive whole, being all segregated in our little individual organizations.

For a long time I have wished that we could gather enough people to engage in a march on our respective capitals. That we could be enough people to form a crip pride parade and proudly display our natural diversity. Where the wheelchair users held signs about “standing up for your rights” where the blind were wearing t-shirts saying “Blind is beautiful” where the folks with learning disabilities shouted: “I know things that you will never learn” to the tune of the deaf singing songs of their freedom.

However, I don’t have high hopes for any of that to happen. We are moving towards a world where it is survival of the fittest and where money talks. If anything we are heading for a cut-throat world where the so-called weak are going to be culled and there will be no room for individual differences.

Four wheels good, two legs better

Ok, folks. I was reminded of this device http://www.matiarobotics.com/ once again by a dear (able bodied) friend who posted it on a social media site. I had happily forgotten how ridiculous it is but now that it was brought to my attention I need to say a little about it. What makes it really ridiculous is the heading of this video: http://www.wimp.com/newdevice/  and especially the heading, “New device makes wheelchairs obsolete” That is probably the worst load of false advertising that I have seen for a long time, especially in the light of this quote on the main site from the user in the video: “By using this device, I can get up whenever I want. It’s wonderful to stand up on my own because I spend my life sitting.” (my underline) And he is right. He will spend his life sitting. Unless, of course, he lives in a world that is completely flat with no curbs, hills or floor surface obstacles.

The wheels of this device are ridiculously small and therefore it would probably work really well in an office building or a hotel or something like that – but for heaven’s sake; do not bring it outside if you don’t want to experience a spectacular spill! Aside from that, I wouldn’t use it to race a snail. Who wants to be a few inches (or feet) taller and spend three to four times as long getting from A to B? I see no forest of hands in front of me, I’m afraid. It also seems really cumbersome to get in and out of. It has a turning radius of an old fashioned hospital style wheelchair and I wonder how much it weighs in case somebody needs to pick it up over a 3 inch curb or push it up an incline.

But it is not so much the completely impractical nature of the contraption that makes me squirm when I see it. It is the overt ableism that it represents – by itself and especially by the video on the website. It is a symbol of the bipedal hegemony that unfortunately seems to be the frame of mind with people in the disability aid industry. To paraphrase George Orwell, the thinking goes something like this: “Four wheels good, two legs better.” It is not good enough to have found what up until now has been the ultimate aid for us with a walking impairment, the good old wheelchair. No, there must be some kind of device that can make it look like we are able to stand up and – hopefully – make the impression that we’re walking.

Why, I ask in all modesty? Why does it have to be so?

I don’t know who you would trick into thinking that I am walking with that thing, even if they can only see my upper body and not the actual contraption. I would still be moving like a slow and cumbersome version of R2D2, and most likely also sound like one – something that might be the only allure to a sci-fi freak. Then again, nah…

The video is worth a closer look. I assume it is made to sell the device by mentioning some of the problems that people with walking impairments have, but it utterly fails to show how their device will alleviate these problems – mainly because it never could. It also fails to address one of the most prevalent problems that many wheelchair users have, namely muscle contractions caused by extended time spent in a sitting position rendering the device utterly useless.

Let me quote what seems to be a dubbed version of what associate professor, Hurriyet Yilmass (no further credentials) says in the video and then make a few comments about the nonsense the company has chosen as its selling points. “People facing spinal cord injuries typically are forced to spend their lives in a wheelchair” Nice ableist start from the supposed professor. It amounts to me saying something like “People who have never learned to swim typically are forced to spend their life on land,” or the even more ludicrously fitting: “People who do not have the ability to fly typically are forced to spend their lives on the surface of the Earth.” Yes, we use a wheelchair. And like everybody else on this planet our circumstances ‘forces’ us live our life in the best possible way we can, for us it is using a wheelchair for others it is staying close to the surface of the earth and for some it is not getting too far out into the water.

“In addition to losing their ability to walk, they also lose the ability to stand up,” Yeah, the ability to stand up is a prerequisite for walking so what are you saying exactly? “This causes a variety of unwanted health issues, especially problems such as cardiovascular disease, blood pressure irregularities, pressure sores and problems of bowel and/or bladder functions which also directly lead to additional medical costs.” Ok. Let’s pause here for a second. Yes, she is (more or less) spot on with what she says here. But there is not ONE THING on her list that is alleviated by the stand-up-device. She is stating something blatantly obvious that has no bearing on what she is trying to push. To add insult to injury, she talks about additional medical costs, forgetting that what she is trying to sell is probably going to double or triple the medical costs of the suckers who consider buying it.

She continues her inane chatter in this way: “Other devices that help patients to stand up are usually structurally bulky, require outside assistance and cause the user to spend extended amounts of energy.” Excuse me, have you looked at this contraption? I have seen ones like it that are just about the same size – in the 1980’s, mind you. And to my limited knowledge, they were equally useless, if that is any consolation.

“The main advantages of Tec are that users can do almost everything that non-paraplegic people can do indoors without any assistance and without the need for special modifications” So, I ask, what activities can be done with this that could not be done in a wheelchair aside from reaching the high shelves and the top cupboards? I fail to see it being an advantage that it moves at a considerably slower rate of movement and a more cumbersome and unnatural body posture due to sitting up in a sling in an upright position.

“It facilitates active and comfortable participation in social life. And users can bend down and alternate between standing and sitting positions. In fact, the user is able to do so while maintaining safety and balance” This is where the misinformation virtually turns into lies. Compared to sitting down ‘active and comfortable participation in social life’ is certainly as close to untrue as it gets. Hanging in a sling will never be better than sitting on a decently fitted seat with good back support. And when you have no use of your legs, a standing position will always be sketchy at best due to the lack of a natural sense of balance. I wonder how the user can bend down, but I will leave that alone. When it comes to ‘safety and balance’ I am certain it is made so one doesn’t fall, but that still does not compare to the inherent safety and balance that comes with sitting down in a chair. That leaves us with one true statement wrapped in a load of BS, ‘one can alternate between standing and sitting’ and hooray for that! It seems like the wheelchair is superior to this ridiculous device in all areas except for reaching up high.

And that brings us right back to my statement that it is created from an ableist, bipedal mindset – and nothing else. It is not intended for making life easier for cripples, it is made for some to feel more normal while for all intents and purposes making them more impaired in their daily lives.

Inspiration porn, the modern freak show

I have written about inspiration porn earlier on this blog. It is no secret I find those who make their lives into a source for ‘inspiring’ others because we cripples are seen as tragic characters. And when we manage to live normal lives we seem to be an endless well of inspiration to those around us. So when I see fellow cripples making a living by entertaining others with their tragic but inspiring lives, I just feel like regurgitating.

Disabled people have been part of the entertainment industry probably longer than any of us know. The Romans used disabled people in their entertainment. The most typical career for dwarfs and hunchbacks in ancient Rome were performing for the ruling class (who else?) and the ones so employed would have considered themselves lucky since the majority of disabled people were silently discarded in those days. All kinds of cripples were thought of as bad omens and therefore they were quickly and silently disposed of.

Some of the best evidence of dwarfs being used amongst the European nobility are the paintings from the Spanish court painter Velazquez who painted the dwarfs at the court of Phillip IV with what looks like a great deal of compassion. His most famous painting, Las Meninas, have – along with the royal family – two dwarfs in it, María Barbola and Nicolas Pertusato. But he painted portraits of other court dwarfs as well, for instance: here and here.

The dwarfs were usually used for different kinds of entertainment and according to certain sources they usually were treated pretty badly by their employers. It is difficult to say when they started being used in the more popular sort of entertainment, like the sideshow freaks known from the 19th and 20th century where we have a lot of photo evidence.

I have a great deal of respect for the freaks, the gimps and all the other travelling performers of yore. But I also think that most people can agree that their slow disappearance up through the 20th century were a result disabled people being viewed in a different way than before. Granted there is a mighty long way to go in the human rights department, but we live in the 21st century even if it doesn’t always seem like it.

However, we still have cripples being shown off in different sorts of ways. Some of them even make living out of it, just like the royal dwarfs and the sideshow freaks I mentioned above.

The problem is that those who have replaced them are of another, and more sinister, slant. They revel in their public performance. They even draw large crowds these days. Like all entertainment cripples in history this group is seen as something of a spectacle, something to be gawked at, an object so different that they are both feared and awed at the same time.

I am talking about all the inspiration porn stars of the world.

These modern sideshow freaks, who make a living from showing off how they are differently abled (excuse me, I just need to go vomit for a while) whose intentions are not so much shock but only awe. The men and women who have managed to make a freak-show-spectacle out of their everyday life and now use it as a performing art.

If you don’t know what I am talking about then please watch this (I am really reluctant to even link to this page since I find it revolting, but the end justify the means) And while you do, think about how this person is totally playing on your emotions while at the same time he is just someone making a living out of being a cripple, just like the people in Velazquez’ paintings: http://www.youtube.com/watch?v=XKTg_INHgpc

This is what I think is going on here?

This guy is talking about dealing with things that 1000’s of us are doing every single day without making a spectacle of ourselves. In fact, you could say that he is doing the very same thing as 7 billion people do every day, namely living their lives – nothing more and nothing less.

So why is it so special? Because he is a cripple and therefore he as well as many others feel like he should be granted special privileges based on pity. But disabled people at large are not asking for special privileges, what we ask for is simply equality. Being granted opportunities that are equal to those of others is enough for us. Not being seen as special or something to be awed because we live our lives like everyone else will suffice.

So the next question is why are they/we being dealt the pity card? I personally think there are many reasons for that. I also think that the main reason is it could happen to you. Anybody can become a cripple from one moment to the next and that is something most people fear and therefore we need to feel sorry for those poor bastards who actually are crippled – because the thought of becoming one is filled with fear and dread.

But the lives of disabled people are still their lives. They have their ups and downs. (I know, it’s a bomb shell to most of you)

Regardless of who you are or what you do, I think it’s fundamentally wrong to make kids cry as the guy does in the video. But I have a particular hard time with the sinister exploitation of the kid’s feelings when it is based on making a spectacle out of being alive and being a human being. Yes, you can jump into a pool. Yes, you can play ball. Yes, you can get up when you fall to the floor. Whooptidoo, so can I.

Inspiration porn has replaced the good old freak show because times have changed. It is no longer comme il faut to be shocked at the monstrous freaks. But in this day and age where we all are striving to become better people and we all need a little bit of coaching, it is nice to have someone who obviously are in more dire straits than ourselves (I mean, look at him – he’s got no arms and no legs!) who can teach us about survival in spite of, seemingly, horrible circumstances. Nowadays it is not polite to be shocked and horrified by their abnormal ways of looking and behaving, therefore we use them to inspire us.

But really; inspiration porn is so incredibly similar to the side shows. They are both exploiting the ingrown emotional response that people have when they see someone whose body is radically different from the norm. The difference being the superficial emotion, inspiration porn elicits a feeling of admiration where the freak show elicits a feeling of shock and horror. The problem is that underlying both feelings is that of pity. Without pity there would be no need for admiration or horror because it is the fact that disabled people are seen as something pitiful that lays the foundation for feeling either emotion.

That is why these inspiration porn stars portray disability in a way that is anything but helpful when it comes to showing the world that most of us cripples live meaningful lives.

What the inspiration porn stars are doing is to show how well they have managed in the world despite their disability. But that also implies that disabled people are not supposed to make it. We are not supposed to live meaningful lives. We are fundamentally set up to fail as human beings because of our physical limitations, whatever they happen to be.

I am sorry. I just don’t think that way. I live my life the way I live my life. I have done some great things and I have done some pretty inane things. I have done lots of things that a disabled person normally wouldn’t do because my zest for life demanded it and because I was lucky enough to have people around me who were crazy (or stupid) enough to do them with me. But I have never done things despite my disability.

On the other hand I know plenty of disabled people who have lived more or less quiet lives who would not be able to perform as inspiration porn stars. And despite that they are far greater heroes in my eyes than most people because they have learned to live their lives they way they saw fit – not despite their disability but with their disability. Some of them are great inspirations to me.

The inspiration porn stars display themselves as a symbol of tragedy and courage in a setting of normal people. Someone who has overcome his tragic circumstances and now lives a life resembling something meaningful. The underlying story goes like this: “I have learned to take care of myself, isn’t that fantastic? Aren’t I great to have done so?” …and I say, no it’s not fantastic, it’s human nature. And you are no greater than the person who has overcome poverty or racial or sexual discrimination – in fact, they are way more respectable in that they don’t go out there and flaunt their bodies, they don’t exploit their situation, they don’t make kids cry bitter tears of pity.

Every one of us does whatever it takes for us to take care of ourselves in whatever capacity we can.