Inspiration without porn

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

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

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

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

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

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

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

Please allow me to introduce

Sarah, the Breathless Singer

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

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

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

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.

Disability rights advocates are not people with disability.

As a member of the disability rights advocates community I particularly despise the term “people with disability” or even worst “person with disability.” And today my understanding of that loathing was brought to a whole new level.

One of my favorite t-shirts is the black one that says: “I’d rather be grammatically correct” on the front. And suddenly that t-shirt made so much more sense to me. I have always loved it because of my love of language and my general dislike of all that is politically correct. I have always had an idea that PC language and behavior covered over some innate fear of facing that which one tried to talk about with this convoluted sort of language.

Political correctness was just one of those things that I would scoff at and laugh about when people went to great lengths not to be offensive; when they would end up in some sort of linguistic entanglement that by no means made conversation easier or more fluid when all parties involved knew it was only done to avoid some term that everybody was thinking anyway.

The reason for all these thoughts was that I was reading an article (in Danish) by Don Kulick, professor of anthropology at University of Chicago. Don Kulick has done some research in Denmark and Sweden and found out that people in Denmark has no respect for ‘”people with disabilities” because we would never use terms like “people with disability.” Instead a word like (oh horror!) spastic is used quite frequently in Denmark. The article is interesting in itself. It’s about how despite this medieval practice of language Danes have a more liberal approach to sex and sexuality amongst cripples than they do in Sweden. And he is puzzled by how the Swedes, who apparently are so progressive when it comes to treating ‘people with disability’ with respect and correct language use, can be so incredibly lacking in their treatment of their disabled population.

It is my view that politically correct language is another way of distancing oneself from those one is trying to protect with the PC language. In other words, the language itself is what creates a distance between the speaker and the subject that is being spoken about.

As the recipient of that sort of language I am reminded that I am different. I am one of ‘them’. We all know when politically correct people use terms like “He is so special” what they really mean is “He’s a f***ing freak” and dare not say it. And the same goes for “people with disability.” To me it’s degrading and inappropriate. When I see it I feel exposed and put on display, not embraced and understood.

It is my firm belief that the use of politically correct language is a way of showing the fear that surrounds disability as a concept. Disabled people are not respected and understood as what they are, that leads to disabled people not acknowledging themselves as disabled who in turn makes them take on a victim role that requires others to speak of them in those PC terms. If we look at another group in society that has turned their disadvantage about face, we will also see a totally different use of language.

The gay community has absorbed some formerly negative terms, like dyke, queen and fairy, and made them part of our vocabulary, these terms are being used by many gays and lesbians as well as many progressive people in a totally non-offensive way. In Danish the vernacular term for gay, bøsse, is a former negatively laden word but because of it being fully embraced by the subculture of homosexuals it is now the official term for homosexuals. Just like the term nigger is being used by the black community at large, and I would not be surprised if that too could turn around and become a colloquial term someday – that, however, would require that we are not afraid of our own shadow.

In Danish we sometimes use a term that is easiest translated into ‘courtesy inframmation,’ it means that we go to such lengths in our attempt to be PC that it is likened to a disease. Unfortunately this disease is highly contagious as well as dangerous.

The second reason why I disagree with Don Kulick is his insistence on the so-called ‘person first’ approach. I can appreciate the idea of recognizing the person instead of the disability. But it also creates a discrepancy between me and certain condition of life that is totally intricate to me, namely my disability. It is true that I am not my disability, but my disability is not some curse that has been bestowed upon me (sorry folks, I do not possess the mental capacity to believe in some vengeful god that has done this to me) and that is what those people who use the term “people with disability” make it sound like.

Just like my gay friends proudly say “I am gay,” I reserve the right to proudly say “I’m disabled’ or even better “I’m a cripple.” I don’t seem to ever remember anyone mentioning a “person with homosexuality” instead of the (totally correct, albeit apparently non-PC) term “gay,” so why do I have to put up with that sort of convoluted language that nobody truly believes in but only uses in order to indulge some warped sense of piety and correctness.

So when Don Kulick talks about ‘”people with disabilities” he is practicing a subtle but all the more insipid form of ableism that I am certain he had absolutely no intention of. Never the less that is the only way I am able to read it. And unfortunately it frames the way many disabled people think about themselves and in that regard it add to the internalized ableism that is seen in so many disabled people where it leads to self-loathing.

By insisting on using “people with disability” Don Kulick is subconsciously creating a distance between himself and me (and everyone else with a disability.) That is his right as a member of a free society; though I highly doubt it is his intention to do so. But what I really balk at is the fact that he tries to distance me from my disability. That borders on an unpardonable sin – again, I don’t believe in any such thing but still… I don’t happen to have a disability. I am a cripple, a gimp, a freak; I am a lame, deformed wonk that wear it with pride. My gimpishness is a full and integral part of who I am. Something I live to its fullest extent and embrace completely. I feel it every day and expose it for everyone to look at and ask questions about – if they dare. And when I put citation marks around the term “people with disability” it is a deliberate attempt to distance myself from a term that stigmatizes me and exhibits my otherness, both from people around me and from what I intrinsically am – a cripple.

So next time I don my ‘I’d rather be grammatically correct’ t-shirt I will be wearing it proudly. I finally have grasped the difference between disability rights advocates and “people with disability” and I thank the forces that be that I am the former rather than the latter.