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.

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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.

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.

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.

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.

Better off dead

A Danish newspaper published a survey today stating that two-thirds of the people questioned support the right to an abortion because of disability in the unborn child. As usual they only mention how many were asked (1002), but not how they were asked or what the exact question was. That leaves us in the dark as to what type of abortion and what type of disability – if any – was mentioned. I know well enough what these things mean when it comes to skewing a survey, that is, they never can stand alone as a measure of anything because of the bias any type of questioning presents.

However, two-thirds of the population of a country that praises itself on being somewhat enlightened (I seriously have my doubts; having to live here every single day)…

I don’t think that most people will really get what I am saying here. Even the majority of my readers will be unable to fathom it. So I have devised a simple exercise for those of you who dare. I want you to go out into a public place where a lot of people are gathered, doesn’t matter where it is as long as you can see a bunch of people. Then you start looking at them individually while thinking about how only every third of them wants you alive. After a while you start the old counting trick… dead, dead, alive, dead, dead alive… etc.

Do you get it now? Two out of three of all the people surrounding me would rather see me gone. I know that a lot of the people I know will protest demonstratively, saying something to this extent: “It’s not you. You live a good life. Nobody would ever do such a thing to you.” And my only reply to that is: “Yes, but only because I didn’t end up as a pile of biological waste next to an operating table in the first place.”

I have no doubts that abortion of disabled fetuses is the ultimate form of discrimination. It is ableism at its worst. Abortion of disabled fetuses is not only performed regularly it is also encouraged by the hospitals. And for once I will suppress my cynical view of doctors who just want to make money or perform research on all kinds of unnecessary things. Doctors are the staunchest proponents of ableism. According to some sources 90% of people with my disability are never being born in Britain.

To most doctors ‘perfection of the human body’ is somewhat of a fundamentalist religion. We, the disabled, are the anti-Christ of that particular religion. We thumb our nose at them by our mere existence. We are living proof that the idea of perfect people in a perfect world is nothing but a pipe dream. So what better solution than to get rid of us before we are really deemed human beings? Out of sight, out of mind.

Deep down I am pro-choice when it comes to woman and childbirth. I have no problem with women making a decision about how they want to live their life. I also know that we can’t just stop medical technology even if it is the real culprit here. It is not the pre-natal screenings that are to blame for this. It is the idea behind them. They obviously rest on a philosophical platform that sees disability as a tragic life event for both the parent(s) and the unborn child.

I am absolutely certain that my mom would not have been able to stand up to the pressure of a doctor telling her that I would have been better off dead. She never questioned their assurances that all the surgeries that I underwent as a child would make my life better. Needless to say, they only made matters worse. They were nothing but experimental exercises, trying to mechanically change the way my muscles, tendons and bones worked. Now it is well-known medical knowledge that these sorts of surgeries only decrease function. The time spent in a cast ruins more than the surgery will ever be able to accomplish. But back then, they didn’t know.

And my parents never stopped to think and see that I only got worse with each surgery. Like most parents today they trusted the doctors. Doctors might not have quite the same status as they did in times past. But they are (supposed to be) the ultimate authority when it comes to our health and our bodies. So it is no wonder that so many parents opt out of having a child with a disability when they are told of all the terrible things that comes with having such a baby.

So what are these terrible things? Is it the impairment that we have to live with? Is it the lack of membership of the ‘bipedal society’? Is it the way we appear differently to others? Is it the mental capacity of living with Down’s syndrome? To me the answers to all of these are a sounding NO!

What is terrible is the normative understanding of what ‘the good life’ is. It is the outright discrimination as well as the subtle understanding that disabled are sub-humans. The eugenic doctors telling our parents that our lives are not worth living, the stranger coming up and feeling sorry for me because my life presumably must be so much worse than his (for some reason it is usually men doing this – pathetic men at that, men with whom I would never swap life circumstances), the mothers whispering to their children a little too loudly in the supermarket “yes, I also feel sorry for him”.

All the people who make the assumption that I live a terrible life are what is terrible about my life.

It is the very definition of tautology at work here. My life must be tragic because everyone assumes my life is tragic. They can all see how tragic it is and therefore it is so. And I must admit it would be absolutely horrific if I fell for the thinking that two out of three people in Denmark subscribe to. But I don’t…

I am an intelligent human being who is able to go against the social consciousness that surrounds me. I have the guts to have independent thoughts and to be a rebel (at least a minor one) and tell the majority that they are fundamentally wrong – not flawed, that I leave to myself and those like me (some of us like to be ‘flawed’ and not fit in)

Like we said in my youth on the subject ‘truth of the majority’: Eat shit, 1.000.000.000 flies can’t be wrong.

Disabled access – dog edition

One of my American friends was denied access to a restaurant yesterday. The excuse for this was that he couldn’t bring his service dog. When he asked, “Why not?”, they answered that some people might be allergic. Not only is this a lame (pun intended) excuse, especially since nobody else was in the establishment, it is also illegal to deny service animals’ entry into places that service the public under the ADA (Americans with Disabilities Act).

He is a wheelchair user like me; additionally he relies on his service dog for his daily living. Therefore it is only natural that this dog should be allowed entry into this place. I suffered from the illusion that these dogs naturally were allowed entry wherever their owner went. It is clearly a civil rights violation to deny these dogs entry – not to the dog – but to the owner who rely on them.

In my country the service dog concept is fairly new. However, using guide dogs for the blind is an old tradition, so I was fairly sure that there were specific laws not just allowing these types of dogs in public places along with their owners, but demanding their access. But I was sorely wrong, not to mention disappointed.

There is no provision in my country saying that service dogs automatically have access wherever their owner goes. The only legislation I can find on the subject is a law concerning food handling whereby the proprietor is allowed to let them in if he pleases. This in turn means that he might as well deny them access. Apparently it is totally up to the owner to decide whether the dog – and therefore the disabled person – is welcome in their establishment. So, even if service dogs are allowed in all publicly owned and run places, those places run by private people or corporations are exempt from this rule.

This sort of treatment is clearly discriminatory. Service dogs are essential for many disabled people. If these people didn’t have their dogs they would be in need of human aides. And as far as I know there is no place barring human aides from following the disabled person anywhere (then again, with my level of ignorance in this field I might be equally wrong about this).

I am already severely shameful of my country and its treatment of certain people (e.g. foreigners). This sort of wishy-washy legislation is just another sign of the spineless way our government is treating those who look, act or seem different. It doesn’t take much imagination to see how my friend could have been denied access at a Danish restaurant – even if it was perfectly accessible physically (which would have almost been a miracle to begin with). And I am truly glad to see how American law (at least on paper) does not allow this sort of differential treatment of the disabled. Even though my friend and his dog were denied access to this place illegally the ADA clearly states:

“Under the ADA, State and local governments, businesses, and nonprofit organizations that serve the public generally must allow service animals to accompany people with disabilities in all areas of the facility where the public is normally allowed to go.”

Which brings us to one of my (many) pet peeves. Why is it that these discriminatory practices are utilized over and over again despite being clearly illegal?

And the simple answer to that is retribution – or lack thereof. The laws concerning human rights and equal treatment of disabled might be reasonably good in many countries I know of. But unless there is a system of justice with reasonable punitive action in place very few people and/or businesses feel the need to do what is necessary to allow equal treatment – why should businesses spend the money or energy on compliance if their lack of action is only shrugged at by the authorities?

To me, it’s pretty simple. If my friend is denied access to this place – either because they truly don’t know the law under which they are doing business, or if they just don’t feel like letting in cripples for whatever reason – then the penalty is too lenient! If the retribution was fair (a.k.a.severe enough) they simply would follow the law.

I am usually not amongst those who believe in severe punishment for criminals. In fact, I am pretty lenient and I strongly believe in re-socializing most criminals. But I have a strong belief in the deterrent effect of reasonable punishment for differential treatment of fellow human beings. I don’t really care if it be monetary or otherwise as long as it’s going to make a difference for the individual doing the discrimination. And I actually believe that is the only way forward if we truly want to make our societies open for all, not just physically but most importantly mentally and emotionally.

Ableism and internalized ableism

So what is this ableism business all about?

It’s pretty simple, it’s like racism except towards disabled people. Ableism is the set of social practices that I am met with when I venture outside the door of my home. It is not something most people would admit they adhere to, it is much more subtle than that. I am automatically met with a number of assumptions – very often unconscious ones – that lead to me being treated in a way different from everyone else. And the kicker here is that these assumptions are based both on my actual disability as well as presumptions about my disability that only live in their head. And I am not just talking about non-disabled people here.

A great deal of my disabled friends hold onto the idea that we are fundamentally different from non-disabled, they see how we have built a world that is not created for disabled and how difficult it would be to change that world. By doing this they fail to see the more subtle discriminations, the attitudes and the unwillingness to make things easier for us. So therefore we must be fundamentally different, we are not able to live and participate fully in the societies we are (somewhat) part of.

Meanwhile there is no concrete definition of what ‘disability’ is. Disability is a continuum from the able-bodied Miss Universe type of person to the obviously disabled blind, double amputee paraplegic with a twitch. Many people are living in bodies that at one moment are perceived as ‘able’ and the very next as ‘disabled, all depending on their circumstances.

When I try to tell my disabled friends about the obvious practices of discrimination they quickly point out physical barriers and how they are not something we can do anything about. There is very little interest in discussing the non-physical barriers and I can only assume that they are not willing because it will force them to look at themselves in an entirely different light; a light where they are human beings with equal human rights and not as victims to their circumstances, a light where they would have to look past the disability to look at themselves as merely human beings with the same human needs as others. But by refusing to see ourselves simply as people we are implying that we do not deserve to be treated as equals.

Many (dare I say the majority?) choose to see themselves as ‘other’, marginalized and unworthy. There is a large contingency who subscribe to the view that the impairment itself is something inherently tragic, an ‘otherness’ so horrible that it is the reason for the poor treatment they receive and therefore also the reason for all the problems they encounter – forgetting that other people might have similar problems despite their obvious lack of any disability that they can attribute it to.

Thus the disability becomes the reason for an inferiority complex. This inferiority complex becomes the foundation for that person’s self-image and their overall understanding of disability as a concept, something they are victim to.

These practices are all part of what I call ‘internalized ableism’. A practice where disabled people internalize the ideas and prejudices of society that see disability as ‘other’, as something undesirable, as tragic and as something to be shunned if not pitied. This in turn results in the disabled person loathing themselves and their bodies. They inherently see themselves as lesser human beings and they dislike others in their group because they are the mirror image of that self-loathing. I know quite a few people who will claim how they hate other cripples – I have even been one of them myself for a while when I was younger.

This way they end up blaming themselves for the oppression they experience. Deborah Marks has explained it rather aptly in her book, “Disability: Controversial Debates and Psychosocial Perspectives” She says:

Internalized oppression is […] the result of our mistreatment. It would not exist without the real external oppression that forms the social climate in which we exist. Once oppression is internalized, little force is needed to keep us submissive. We harbour inside ourselves the pain and memories, the fears and the confusions, the negative self-images and the low expectations, turning them into weapons with which to re-injure ourselves, every day of our lives.

As Marks says, this self-degradation makes it really easy to for the norm to remain status quo. The disabled person who subscribes to this view can lean back and say to him/herself:

“Disability is something horrible bestowed upon me so how can I be expected to act normally and live a satisfying life?” And I am hard pressed to tell them that they are wrong. It is extremely difficult to tell someone they are wrong when everyone and everything around them confirm their belief.

Disability is a great excuse for wallowing in a misery that in other people might simply be called sadness. Or if it is really serious, depression, a psychological state that is expected to be dealt with and overcome within a foreseeable timeframe. But for the disabled it is not necessarily so. They are living tragic lives and in our oh-so-sympathetic understanding we forget to care for it. Misery is an existential condition for the disabled and they have an inherent right to feel so by the tragedy they represent for us.

And that view serves us disabled well. We get a great deal of attention by playing the victim role. We get empathy and care from those around us. Many end up acting so pathetic that they can’t differentiate between the care that is actually needed and a treatment that is nothing but pampering and degrading, others hate it but are not able to escape their self-inflicted victimization, thereby becoming the poster image for the ‘bitter cripple’.

The care and attention is a kind of paternalism that only perpetuates the oppressive relationship between disabled and non-disabled. It allows the non-disabled to show a profound and sincere compassion and sympathy for us while we are kept in a position of social subordination and gratitude.

It keeps us in a state where it is all right for ourselves and others to view us as dependent, helpless, innocent victims who through our physical limitations are unproductive and often a burden. We are at our most acceptable if we sit down, shut up and act as if we didn’t exist as human beings.

So what do we get out of it? By ‘buying’ the ableism idea we get the opportunity to be lazy. We become the mute and mindless receivers of charity and well-meaning. To a certain extent some might even agree with those (radicals) who say we are oppressed and that we need to point out inequalities in our lives. But nobody can expect to change our surroundings so that they are accessible to all groups of disabled. And since we can’t change our environment so we can get around without some form of aide, why even bother thinking about it? At the end of the day everyone knows that disability is all about physical impairment and not about discrimination. I mean, who would discriminate against those who everybody pities?