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.

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Discrimination – IKEA edition

In the Scandinavian countries IKEA has a pretty sweet system for families who are shopping at their warehouses. They have a big playroom with staff where people can leave their children after the parents have filled out some paperwork and provided a mobile number so they can be called if there are problems with their offspring.

I am telling this to introduce a story I got from my Norwegian sister in-law, a story that outraged me when I read it.

A Swedish family arrives to their local IKEA with four of their five children, one of whom is Texas, a four year old boy with Down’s syndrome. They go to the playroom and fill out papers for three of the children and not for Texas. In the past they have had experiences where Texas has been denied access to the playroom because of his Down’s syndrome and his older sister because she has CP.

Assuming they have forgotten the paperwork for the fourth child the young man who oversees the children just hands them another slip and tells them that they forgot one. The mother points out that he has Down’s and the youngster replies “That’s not a problem,” and continues to let the children into the playroom. After the visit to IKEA the mother goes home and puts up a grateful post on IKEA’s Swedish Facebook page, ending up getting close to 100.000 likes within 2 days.

It seems like such an innocuous and sweet ‘human interest’ story (some might even call it inspirational – if they dare) and it makes it way to the mainstream media in several countries; so why am I so enraged by it?

I am enraged because it IS a story; because it is being repeated in newspapers in several countries; because 100.000 people think is even noteworthy, not to mention great or extraordinary. Because they fail to realize that it should never be a tear jerking event that a child gets to play with his siblings and the other kids.

What’s so sweet about treating a little boy like… a little boy? Why do nearly 100.000 people think it’s worth ‘liking’ the fact that a human being is treated like… a human being?

The simple answer to those questions is that those 100.000 people and many more with them do not see disabled people as people. They might say they do but their actions speak differently. And that is what disabled people have to endure every single day… every single day! The degradation, the humiliation, the indignity, the pity, the stares, the underhand comments, yes, we just live with it because we know intrinsically that we will never be seen as real people – at least not in our generation. And that is why some of us work hard to have future generations feel less of an impact of this subtle (or even not so subtle) discrimination that we meet on a daily basis.

If there should ever have been a story it should have been when Texas and his sister were denied their human rights. That should have earned IKEA at least 100.000 ‘thumbs down’ on Facebook. There should have been an outcry when these children were told they were sub-human by IKEA staff and refused entry to the playroom because they were not seen as children but as freaks who we can mistreat however we see fit.

Now that sort of story would have been newsworthy whereas the story of how Texas was let into the playroom seems so utterly natural that it should never have hit any kind of news outlet.

I mean, he’s not going to contaminate the other children with some kind of mongoloid cooties. He is a 4 year old boy with some developmental issues and so what? Are the other children going to not play with him because he looks different? Well, only if they have been taught not to by ignorant adults not to do so. Is he going to be seen by them as fundamentally different because of his developmental issues? I doubt it, children play with other children regardless of their age or their maturity – they take him for what he is, a four year old boy.

The only thing that will prevent him from being able to go into the playroom and play with the other kids is a lack of intelligence – and not on his part but on the part if the imbecile adults who treat him as something fundamentally different from his fellow human beings.

To make this even remotely newsworthy tells me that we as disabled are far, far from ever being accepted into the societies we live in. We are natural outcasts and the only reason we are no longer institutionalized and hidden away is that our societies have made laws against segregation. But when it comes to the way we are treated by the individual human being there is still a long way to go.

We are something to be feared. Not as individuals but on a symbolic level. We are the symbol of a tragedy and therefore we are highly feared. Who wants to deal with suddenly being blinded, deaf or losing one’s ability to walk, act or think properly – of course nobody does. I don’t want to lose some of my faculties. But that doesn’t mean that a life as a disabled person naturally is sub-human. There is a strong tendency amongst all living beings that they learn to survive with the most hostile conditions. As far as I see it it’s a biological trait that is intrinsic to being a living organism.

In that light the actual disability becomes ‘just another challenge’ for the individual. What makes it most difficult is the way it is thought about, both by the individual and by everyone else. The abstract idea of ‘disability’ is scary and anxiety invoking to most of us and that anxiety leads to a strange kind of bigotry. After all the things we fear are also the things we end up hating the most, consciously or subconsciously.

However, a vast majority of disabled people know that it is not the impairment that is the big challenge for us, it is the bigotry that comes from small minds who in many instances say they just want to do good for us while treating us as children or sub-humans. And a large number of us find it far more disabling to be that person who is not able to see their fellow human beings as fellow human beings than it is to live with a physical or mental challenge.

So to the 100.000 Swedish IKEA customers out there, shame on you for thinking IKEA did a little boy a favor by treating him as a human being.

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?

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