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.

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.

Disabled accessibility

…as opposed to accessibility for disabled.

Every day I bump into somewhere that is inaccessible, maybe not to me but then to someone else with a different kind of disability. when I say inaccessible I am not only talking about physical structures like buildings or transport or places like bathrooms. There are many things that are inaccessible as well. It might as well be a website like this one – and to be quite honest, I could be pointing my finger at myself here. I have never explored how my blog is accessible to the blind, for instance. And it could be any other sort of communicative device or medium that most of us take for granted.

Lack of access is not in and of itself discriminatory. I am one of those who have a certain level of understanding when it comes to e.g. historical buildings. I live in a city where they abound and I love living here despite the fact that there are places that I will never be able to visit. But at the same time, to my great delight, I am seeing more and more of them being retrofitted so they are accessible. And to a great extend I also have some compassion for how it is not always possible. There is a very small renaissance royal castle here that would be virtually destroyed if elevators were installed.

I am not so radical that I will demand everywhere completely accessible, to me that is a pipe dream. What really does make my bristles stand on end, though, is when I see how new building designs are made in a fashion where disabled people are forced to use a ‘special’ entrance because they didn’t think accessibility into the design to begin with. I am sure they often do it for aesthetic reasons, but I have yet to see an architect leave out the stairs for those reasons. Most of the time accessibility seems more like an afterthought which means that an elevator or some hideous ramp is ‘glued’ to the backside of the building without being part of the original design. So not only is it mismatched with that sort of thing, it also doesn’t matters that it might take ridiculously long time for the disabled to get into wherever it is they are going. Personally have I seen some pretty funky places when I have gone to some venue, museum or whatever, living quarters, offices, storage rooms, you name it.

So today when I ran across one of these ‘special’ entrances to a fairly new building, I couldn’t help thinking about a relic from my childhood. Growing up in a city where most of the residential buildings are from late 19th and early 20th century, I used to regularly encounter signs at the foot of wide swooping staircases that read something like this:

“Servants, delivery men and children must use the back entrance”

No ‘please’. It was obviously not necessary to be polite to such groups of sub-humans. These entrances would in most cases lead directly into the kitchen that in those days had a purely utilitarian purpose making it crammed and dark and smelly. And they were used for carrying all kinds of stuff up and down from the apartments, like garbage, coal and human waste (before the water closet was invented) I know it was not just in Copenhagen that this sort of signage could be seen, there is a strong tradition in the western world for having undesirables be out of sight unless they were needed. Not to mention all the ones that were not even allowed into our structures.

Making unnecessary special entrances for the disabled is no different than making delivery boys and servants use the back entrance. These sorts of entrances send mixed messages to the community at large. On the one hand are they show the proprietors as being thoughtful of the disabled people who want to use their establishments. On the other hand they are sending a message to the disabled community that even though they need not feel like they aren’t welcome they are not truly valued on equal terms and that their participation is more of an addendum than something that was thought of from the start. And by not being valued as participants we are not really valued as individuals with equal rights.

In some ways this sort of attitude is more insidious than those places both physical and virtual, where there is no accessibility at all. The completely inaccessible places are easily recognized as being discriminatory where these sorts of places are practicing a much more subtle and surreptitious kind of discrimination, one that most people will not even recognize or think about.

After I had passed the place with the hideous elevator addition I knew I would write this blog post. But another project kept nagging me. I felt inspired by the “Servants, delivery men and children must use the back entrance” sign of my childhood. And I thought to myself, why not make a “No disability access” sign that we can put up in those places where we are barred entry for whatever reason? Why not create a universally recognized sign that made it obvious to everybody that we are not welcome?

And immediately I knew what it should look like. Thanks to pictograms people worldwide have a common language for these kinds of things. So I set to it and created my image. As you can see it is pretty simple and I have found no other sign like it anywhere, so I have registered it under a ‘Creative Commons’ license which means that anybody can use it if they wish to.

Disabled, no entry copy

Once I have the time I will have a bunch of stickers made with the image so I can put them up wherever I feel the need for it. So if you want some drop me a note and I will get a bigger order. Otherwise you can always see the pictures I take of the places I will honor with this beautiful pictogram.

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?

I am such an inspiration

My whole life I have been an inspiration. Oh, I am so incredibly great and I am so amazingly able to do all kinds of things all by myself. I don’t need all the help that I seem to need. I know, because people have told me this my whole life. From certain members of my family over people I know from different walks of life to total strangers. They all tell me basically the same thing, ‘you’re such an inspiration’ and there seems to be no need for them to explain why that is so, it just is.

I particularly like the guys on the commuter train who pat me on the head and tell me how great it is to see someone like me and what an incredible inspiration I am to them… because total strangers know these things. I usually tell them that it’s good to see someone like them and how glad I am that they made it out of bed, and when they stare at me baffled I tell them that I know how hard it is for someone like them to perform such a difficult task. Most of them walk away either shaking their head or with a scared expression on their face that I so far have been unable to decipher.

But back to me, that is what this is all about.

I am categorically a brave soul. I touch on all these people lives – or should I say, hearts – merely by being alive and by going about my daily living, going to the store, eating out or taking the local commuter to where I need to go – or when I perform the amazing task of using a lift to get into my van, after all it does have several buttons (and to those who know me it’s no secret I don’t always manage to push the right one)

I bring a smile to people’s faces as I pass them in my daily routine – if I could only get paid for being so heroic and valiant.

But what I lack in income from this awesome life I lead, I get back as attention. People look at me with that smile that to some might seem condescending, a smile that I know they think is a gesture of friendliness and gratitude. Not so much because I am me, I don’t think most of them care who I am as a person. But I do know what I am to them, I am such an inspiration – not just an inspiration, but such an inspiration.

So why do I think their smiles are gestures of gratitude? I know because it is human nature. Aren’t we all grateful for who we are when we see those less fortunate than ourselves? Don’t we feel just a little bit better about ourselves when we are able to mirror our own life in their misfortune? Guilty as charged, I do. I just can’t help it, or maybe I can but it takes a lot of willpower and personal strength. No matter how I lok at it, I am still happy I am not a sub-Saharan African, deaf, gay woman with AIDS and a serious limp. I admit it, I feel thankful for not being her. I am glad to have my crippled life where I can go out in the world and be an inspiration.

I know you want to ask now. Do I know a sub-Saharan African, deaf, gay woman with AIDS and a serious limp? No, I don’t. And if I did she I would never call her an inspiration to me. I mean, what had she done to deserve it just by being a sub-Saharan African, deaf, gay woman with AIDS and a serious limp? If she had done something amazing then, yes, I might consider admiring her. But then I would admire her for what she’d done, not for who she is. What she’d done is above and beyond her being disabled (or gay or a woman or sick, for that matter) If she had created a living for herself and she now owned a thriving business, I would say ‘good for her’ but not because of, or in spite of her obvious difficulties, but because she was an amazing person who had accomplished something for herself, regardless of the hand she’d been dealt by fate.

Why should I look at that woman through her difficulties instead of looking at her as a fellow human being? Suddenly she disappears and what I am looking at is her circumstances. She becomes a symbol, an object that I can use to mirror my own life in and feel good about myself. She becomes reduced from being a person with a disability to being her disability.

She becomes the inspiration for me, an inspiration that lives outside of me, an inspiration that takes on its own life in my thoughts and my actions. Suddenly she is no longer a person but some sort of representation of how I would like to live my life in a perfect world – except I really don’t want that, because that would mean that I also would have to bear the cross of her disability. And despite my elation about being an inspiration, I know that is not what I want.

So instead she becomes a beacon of hope that things are good in the world. I have my quiet little life that I can live without too much trouble and thank God it’s not me who is that sub-Saharan African, deaf, gay woman with AIDS and a serious limp.

But at the end of the day, who am I to know whose life is more or less difficult than mine? And that is what really curdles blood when I hear: “Dear me, you are such an inspiration to me!”

ETA: I just found this that puts the subject in a more serious light:

http://badcripple.blogspot.dk/2013/04/shane-burcaw-laughter-is-not-always.html

I have to say that ‘Badcripple’ is one of my great inspirations and it was fun to beat him to a subject. I don’t think that is going to happen too often.

Going shopping

So I went to my local supermarket today and it is not just any odd convenience store. No it happens to be the biggest supermarket chain in Denmark, NETTO, which happens to be owned by the wealthiest company in the country, Maersk, which also happens to be the largest shipping company in the world. A company that apparently is too poor to accommodate their disabled customers in a decent and worthy fashion.

I just wanted to buy some groceries and what do I see to my dismay – the one – yes ONE – parking space they have at their store has been invaded. This time not by any of the usual suspects; shopping carts, bicycles, strollers or unauthorized vehicles. No, as a celebration of the coming spring the store has decided to let it be invaded by a floral display. A floral display of all things!

This is the parking space for disabled
This is the parking space for disabled

Not as in a sudden exclamation of peace, love and happiness – after all we’re talking about a commercial outfit that is not necessarily known for their sense of aesthetics. So they are exhibiting the pretty flowers that they are trying to sell at inflated prices to their customers.

What adds insult to injury is that there are about 50 non-disabled parking spaces, most of them completely empty all around this display of cheerfulness. Spaces that could easily have been converted into flower stands if they had so chosen. But that would have meant that the entrance to the door would not have been blocked – and who in their right mind want to see where to enter the store they are going to?Yes, the floral arrangement was in fact so large that it not only blocked the entire disabled parking space as well as the sign for it (God forbid anybody was going to see it and complain) it also blocked the entire entrance to the store.

Now, in their own understanding they did afford some replacement parking. On my way out I saw one of those ‘the floor is wet’ sandwich signs. [check out the pictures] With a tiny little piece of paper saying ‘handic  ap  space’ (yes, it’s true, the paper was so small that they found it wise to divide the word up into ‘handic’ and ‘ap’) This sign was conveniently placed up against some of the flowers in the back and not even close to any of the alternative parking spaces.

Notice the disabled parking sign behind all the shelves
Notice the disabled parking sign behind all the shelves

Ok, I am no idiot, I am certain the little sign had sat close to one of the other parking spaces. But that only makes it even more moronic. First of all, who but the most goodie-goodie old ladies are going to respect such an amateurish attempt at reserving a parking space for others. And secondly, and by far worse, those spaces are not wide enough for anybody with a wheelchair to get out of their vehicle. I own a van with a lift on the side and there is no way in hell I can get out if I try to squeeze into one of those.

So NETTO and Maersk, You better do better. I have decided to spend the next few weekday afternoons at your store, parked right in the driveway that goes by that parking space so your other customers will have a hard time getting past me. I plan on arriving around 3.30 when traffic really picks up and I can easily spent a good 1½ hour browsing your store and end up buying a pack of chewing gum – if I can find one cheap enough.

The 'new' type of signage, hidden away amongst the pretty flowers
The ‘new’ type of signage, hidden away amongst the pretty flowers