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.

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.

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?