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.

Police brutality

I don’t even know how to start this post. So I think I will start somewhere entirely different from what I want to blog about.

I have been hospitalized for 4 days over the weekend and as usual it was a hairy experience with people who more or less tried to kill me. In fact, it is so heart wrenching that I don’t want to talk about the details of it. All I want to say is that hospitals are probably the most dangerous places on Earth. And the risk of infection is the least of one’s worries when going to the hospital; the really insidious thing to a patient is the lackadaisical attitude and the carelessness of the staff that seems to be the norm rather than the exception. So I mean it in all too much seriousness when I say, I got out of there alive.

Meanwhile out in the world, or just a few kilometers from where I was lodging at the ‘worst hotel in town,’ another cripple was stripped of all his humanity by those who are supposed to serve and protect (I will refrain from uttering an opinion on what they ‘serve and protect’ these days, but it is certainly not the citizens of the country.)

In short, a man is tipped out of his wheelchair by a police officer without any reason. The officer is making an arrest of another man who apparently is a friend of the man in the wheelchair. This prompts the latter to yell at the two officers and ask where they are taking his friend interspersed with a few words from the more colorful territory of the language. One of the cops approaches him, grabs his shoulder and says “Don’t grab me” (sic) while he topples him sideways out of his chair, then he repeats his ridiculous demand, “don’t grab me, do you understand?” the man replies that he is just asking (a question) and the cop tells him he has no right to ask any questions whatsoever. The cop stands over him and yells into his face while the other cop puts the wheelchair back up. After a while they leave the scene with the man still lying on the ground unable to get back up.

A recording of the incident can be seen here: Go to 1:00 where the assault takes place. This is just one of several movies of the incident.

There are also at least 3 witnesses who consistently confirm the story, one of them who was only a few feet away saying: “I have lived in this neighborhood and seen a lot over the years. But I have never seen an officer losing his composure in a situation where everyone is calm and there is no danger at all.”

To any civilized individual this is an open and shut case. It’s a textbook example of abuse of power and police brutality. That is until one reads the paper and finds out that it is not.

No, according to the head of the police union, Claus Oxfeldt (I feel the need to mention his name only because of his complete lack of a sense of reality,) it is apparently an accident, “because the officer did not push him but held onto him all the way down.”

So it’s ok to completely incapacitate a cripple and leave him helpless on the ground on a cold evening without any way to get up and move around as long as it’s done carefully. That apparently is the conclusion the Danish authorities come to after having investigated themselves.

This is why I had no idea how to start this post. What does one say to such moronic behavior? (I have no other word for certain members of the Danish Police Force at this moment, and even then it’s an insult to morons)

I have nothing to compare it to. So I think I will ask what the officers and Claus Oxfeldt would feel like if someone came and deliberately incapacitated their legs and left them on the ground only to read in the papers the next day that it was an accident and there was no need for investigation or prosecution.

Their words and actions tells me that they would find such an act perfectly all right since that is what they did to this man. So how about rounding up Claus Oxfeldt and his colleagues, equip them with a pair of cement shoes and leave them overnight on the street all the while doing it gently while yelling into their faces that they should leave us alone.

It can only make one wonder if they might change their minds. Meanwhile we would be able to call it an accident and forget about it.

I have not even tried to go into the human rights aspect of this case. I honestly don’t have the energy for it after my hospitalization. And also, this case is so far beyond civilized human conduct that the even the dimmest of minds can see the idiocy in it. Except for Claus Oxfeldt and his cronies, of course. But then again they are excused because they have never tried the cement shoe exercise. So I guess it is only natural they don’t understand what it feels like to be left on the street completely incapacitated and stripped of all your humanity, like some vermin left to rot.

The really sad thing about this, though, is that they are still supposed to be the ones to protect and serve – even cripples. But apparently that is too tall an order for them. Poor things.

An innocent man was killed

I ran across a story about a man choosing to kill himself while still in a coma – yes, it’s true. The story clearly stated that they woke him up from his coma to let him decide whether he would live or die. Or, the way I read it, whether his family including his pregnant wife could help society save a ton of money by letting him be snuffed legally.

So what was the reason for this decision? He faced a potential future as a quadriplegic.
Here is a link to the story: http://news.yahoo.com/injured-indiana-hunter-chooses-end-life-support-181336165.html

Now, nobody knows how bad his injury was. The idiot doctors – along with the somewhat ignorant and (quite naturally) shocked family – made the decision to kill him the very day after his accident. They could not even wait for the swelling to go down so they could see what kind of damage he might have suffered before they decided on this course of action. Granted, the man had fractured his third, fourth and fifth cervical vertebrae. But he was still in a coma!!! There was no way of knowing how badly his spinal cord was damaged from just looking at the bone damage.

In my mind, this can only be interpreted as downright and premeditated MURDER!!

And I certainly hope somebody in the Indiana or US disability community sues those who were in charge of this decision for this act of homicide.

There is no excuse for killing a man under these circumstances whatsoever. I understand how his family will not be able to think straight in such a situation and therefore they should not be faced with this sort of decision. Whoever came up with the harebrained idea that they should be given this choice are the real culprits in this murder case. All they see is a man in a coma with a tube down his throat.

According to the story the tube played a major role in the decision to kill him. Of course nobody wants to see their loved one live with a tube stuck through their mouth and down their throat. And that is probably why I have never seen a quad who needed ventilation having a tube through his mouth. Ventilation is a high tech kind of thing and depending on the person, it can be very non-intrusive. But again, nobody knows what this man might have faced – because he was never given the chance to find out for himself. Nobody had the patience to wait until they could make a logical and thoughtful decision before they killed him.

And please notice that the story clearly states that he might have needed ventilation. It doesn’t state that he might never be able to walk. But my 47 years of experience with SCI tells me that there is no way in hell anybody can make a clear statement about these things within the first 24 hours of somebody’s injury. That is why this is clearly a case of premeditated murder and nothing less. There is no way that any person who knows anything about disability and is able to think straight can perceive it any differently.

The main excuse that the story states for killing him is that he wanted it for himself. The same doubt applies to him as does to his family. How can a man, injured the day before, woken up from a coma, only able to speak if they pull his life support away from him, ever make any kind of rational decision? Especially being presented with the idea that he has to live with aforementioned tube for the rest of his life – a blatant and utter lie. I have been in post surgery many times and wished there was a plug to pull when I woke up… also three days later when I was still feeling like crap, being hopped up on morphine as my only saving grace.

Of course the man wants to die. No matter how they presented the prospect of him not being able to walk or needing life support in the future, the mere idea of letting him know of these things (all of which were conjecture to everybody at the time) was so wrong that I don’t understand how there are no regulations in place against it. Let the man recover to the point where everybody have some kind of knowledge of what his prospects are before letting him know of his situation. And (this makes me want to throw up, just thinking about it) allowing him to consider any major life decisions should not be given until he has learned what his future life would potentially look like, which requires him to go through some sort of rehab in order for him to even be able to begin looking at his future in a somewhat rational light.

All of us who have been there in some capacity know that it might take years to get to the point where ‘the new life’ dawns on us and we see all the things that lay ahead of us – great and not-so-great – and we all know that this decision could never be made by someone who was just woken up from a coma.

How the doctors and administrators are allowing this sort of deliberate neglectful act is beyond my scope of comprehension. I am astounded to my deepest core. And I strongly believe it is a clear violation of the Hippocratic Oath.

I wonder if there is some kind of anti-disability legislation in Indiana that I am not aware of. Some pro-prejudice, disability-phobic law making that allows such a brutal murder to happen. And as if that wasn’t enough, letting a news agency, like Associated Press, make it into a positive story. I just have no way of showing the true level of my disgust in regard to all these people. It stinks to high heaven how little a human life is worth in Western societies in general (and Indiana in particular) where the mighty dollar and corporatism has taken over and left behind all decency and – now also – human life.

So what is the philosophical and sociological mindset behind killing this man? It is quite simply the ‘disability as tragedy’ view has always permeated Western thought since time immemorial. Disability as tragedy is the most direct outcome of ableism, a subject that many disability activists have talked extensively about so I would not go into it further here, given the importance of this story and the comments I want to make in regards to it.

The thought of living with any kind of life altering condition scares most people. And to a certain extent, it should. People might gripe about their life but when offered an alternative most would say no. It is the human condition to be afraid of the unknown and therefore we would rather choose the badness we already know over the potential badness that is lurking out there in the dark.

Disability is always perceived as one of those bad things that are out there, something that can befall any one of us at any given moment. It is the great bogey man of the old days in modern disguise. It can attack you in the middle of the night – or sometimes even in broad daylight, falling out of a tree.

But disabled people do not necessarily live worse lives than others. No, that’s not true – they do. But the main reason for the lower quality of life is not the disability as such. It is the stigma, the prejudice, the preconceived notions, the fear that others have of it, the lack of opportunity and all the other social barriers that we are faced with making our lives less worthy in the eyes of others.

I fully acknowledge if the man has claimed in the past that if he ever became disabled he would want to be put off life support. But I put as much stock in that sort of statement as I do in one from a young boy who wishes to become an astronaut when he grows up. Neither of them have any idea what ‘adult’ life actually entails preventing them from making rational decisions given their circumstances.

The article talks about ‘end of life care’ and the patient’s decision to pull the plug when facing a terminal condition. There is a blatant lack of ‘end of life care’ in this case, though. What is apparent is a man who had a tragic accident who is not facing an end of life decision. We are talking about a man who more than a reasonable chance of survival if given proper care. Not a cancer patient or someone with an end-stage chronic disease. But a young man whose life was ended by cynical and thoughtless people who couldn’t be bothered with helping him back to life so he could have a chance to see his yet unborn baby.

I am sorry, but I do not believe that ‘end of life as we know it’ qualifies for ‘end of life care.’ If indeed I am in the wrong there would be a plethora of people lining up for their lethal injections.

So who is at fault in this murder case?

Let’s start with the easy one, the man himself. He is not at fault by any means. He is clearly the victim here on all levels. He is the one to suffer the consequences of the decision. He is also the one who is blamed for having given the famous final ‘yay’. In other words, if everybody else will have a chance to live on without the guilt they obviously deserve, they will have to make him the ultimate decision maker. Since he is dead I guess it doesn’t matter too much. But regardless, he will remain the faultless victim on all counts.
His wife is not at fault either. I will give her the benefit of the doubt and say that she was ignorant of her actions, listening to the fucktards i.e. her sister-in-law and the doctors who told her to agree to this murderous act. They should clearly be incarcerated for what they did. It is enough for her to live with the realization that she was part of robbing her unborn baby of ever seeing its father.

His sister, the nurse who claims to know what her brother’s life was going to be like. She is to a large degree at fault. She quite clearly has no insight into the life of a disabled person regardless of her hollow claims. Those claims are no better than the person who thinks she knows everything about sailing because she once went for a ride on a ferry. She is clearly suffering from what I call ‘the clinicians blindness’ a condition that is seen in all places where professionals meet people with disabilities and/or chronic illnesses. The foundation for this blindness is that the clinician only sees the chronic patients when they are at their worst. They encounter all the things that can go wrong with a particular group of people, extrapolating that knowledge to the entire person and their life in general. Of course that is going to skew her view in a very negative direction to the point where she is blinded by it. So for her to make any kind of decisions based on this prejudice downright dangerous. And in this case lethal! I have a hard time holding her blameless for this fratricide, the fact that she doesn’t know better is no excuse for killing her own brother. And quite frankly if she is capable of doing that, my question is, how many other innocent people’s murder can she be held accountable for given her position as a nurse?

As for the doctors and administrators there is just no excuse. They are so at fault that I am not even going to go into the details of why – like I have stated over and over again: They are clearly guilty of premeditated murder!! Like I implied earlier, maximum security, mixed population, bunk beds and no opportunity for parole is the least we can do to rid society of these murderers.

Lastly, if I believed in heaven or hell I would also believe in a special place in the latter reserved for the family and doctors deciding to kill a fellow human being. And furthermore I would gladly apply for a job there with the promise of treating them fairly… very fairly.

Who’s disabled now?

Inspired by an essay in the Danish newspaper, Politiken, written by Sarah Glerup about her struggles with the level of understanding and insight from the people she tries to hire as aides, I thought I would write a little about the way a good many people view disabled. And I might warn you, it is not for the faint of heart. Sarah has muscular dystrophy and therefore she needs help with virtually everything. She has a degree in media science, works as a political communicator and is blessed with a remarkable talent for drawing; some of which can be seen on her blog:

Sarah starts her piece by quoting from an interview with a potential aide who claims to be well fitted for the job for the following reason: “I have a cousin with Down’s Syndrome so I already know a lot about the job.” Reading such nonsense I am not even quite sure where to start pulling this sentence apart. It assumes a level of generalization and dangerous assumptions that it makes me cringe. My head starts to spin contemplating the fact that there are people out there in the world who would make those words escape from their narrow minded consciousness, travel all the way through their vocal chords and finally pass their lips. Into the world where they will be picked up by none other than some keen observer apparently light years farther apart from the aforementioned cousin than the speaker herself – at least when it comes to level of intelligence and/or common sense.

I can’t help thinking how the moniker ‘disability’ is so incredibly inappropriate in a situation like that. The way I understand and interpret the concept of disability, the interviewee has far more to worry about than the interviewer. She obviously has to spend the rest of her life suffering from a poorly disguised cognitive/intellectual deficit leading her to be completely clueless as to what goes on in the world around her.

You might think that this woman don’t really perceive all disabled in the light of her cousin and that the quoted sentence was a slip of the tongue. Unfortunately the evidence says something else. In explaining how the cousin goes to a special school this escapes her unfortunate lips: “he goes there with other disabled people. I think there are all so cute.”

When I got that far in the essay, I couldn’t help reminiscing my youth. I had a very effective method of getting rid of people when I had had enough of their drivel about my disability (always people whom I had never met before who found it in their right to ‘feel sorry’ for me, always expressed in an indescribably pathetic manner)

My method was the following. I would look them deep in the eyes with a very serious and intense gaze, maybe even put a hand on their forearm to underpin my grave words. And when I had their full attention I would say the following: “You know, I feel very blessed, I have a disability for everyone to see. You, on the other hand, only show yours whenever you open your mouth.” And 9 out of 10 times they would get my message, shut up and disappear with their tails between their legs. The 10th person would need an even ruder brush off, which only goes to show people with cognitive deficits are not always that cute.

Unfortunately generalizations based on the ‘differentness’ of being disabled are all too common. If we are not cute all together, then we are to be pitied – and strangely enough it is my observation that those who harbor feelings of pity for me are the ones who themselves are in the greatest need of sympathy. And if we are not to be pitied, because some people think they recognize something super-human in our very existence, we are to be revered as the epitome of inspiration, usually based on the fact that we are alive (and God forbid, smiling) and able to live a life that resembles some kind of normal. If we are not inspirational and our disability prevents us from partaking in work or social life on par with others and we may end up in the hospital for a while, then we are leeches and freeloaders who are sucking the taxpayers dry by our mere existence. And if we are not leeches we might just be going about our business and suddenly a parent in front of us are pulling their screaming child in a direction where the child can stop staring at us and we are reminded that it would be best for all if we stayed home and never came out so people would forget about our existence, after all it is best if we are neither seen or heard of – ever – by these people.

In other words, the generalizations that we meet pretty much runs he gambit of human emotion and there is a plethora of specious reasons to feel one way or the other for ‘people with disabilities’. I have only mentioned some of the most obvious ones here. But at the end of the day they are all based on the most superficial and insipid sort of prejudice. The basest way of looking at another human being; finding one distinct feature that a group of people share and then making assumptions based on that particular feature while forgetting the human being wearing it. This prejudice is at the root of all bigotry, whether it be racism, sexism, misogyny, ableism, chauvinism, religious difference or any other practice of preconceived notions.

People with any sort of disability are as different from each other as any other group of people based on any arbitrary measure, like height, shoe size or hair color – just to mention a few that might not have a (well-known) -ism attached to them. What we have in common is that we are recognized by our societies to have a bodily or cognitive function that falls far enough from the statistical median to be recognized as something that requires special attention, be it medical, social or otherwise.

So what can we do to overcome this prejudice? If I knew, I am pretty sure I’d find some way to cash in on it. Unfortunately I haven’t got the answer and that is one of the (many) reasons why I am broke.

What I do know is that, yes, I see myself as disabled, but I think that’s the norm. I was born with my disability so quite naturally it’s all I know. What I see around me is all these weird ambulatory folks walking or running around in their odd bipedal fashion and think to myself, “don’t they know the wheel was invented so long ago it’s forgotten in the fog of history? Why haven’t they caught onto the fact that it’s so much easier using a wheelchair, it’s faster, it’s more fun and you can sit there pretty comfortably while roaming around.”

Ok, maybe I don’t really think so but if I was trying to reverse the ableist view that would probably be one of my first thoughts. I completely identify with having SCI because I have never known anything else. So to me it will always be the norm – even when I know it isn’t if I ask most other people.

Finally I want to apologize to people with cognitive disabilities. I have been pretty harsh on those I would not hesitate to call dumb and I have surmised they have a cognitive deficit which I truly believe they do, they are unintelligent! But in our society it’s not enough to be dim witted, dull, obtuse, slow on the uptake, mindless, moronic or idiotic to be deemed disabled and that might be why they consider themselves ‘normal’ but I think their cognitive disability is far more scary than those who are now deemed to have one. And this might be my own prejudice rearing its ugly mug here.

So call me a bigot, I might very well deserve it.

Martin Luther King and disability rights

Today it is 50 years ago Dr. Martin Luther King held his famous ‘I have a dream’ speech. Fifty years where many people have worked to expand equality around the World. And great progress has been made but even more needs to be done before we can call ourselves just somewhat equal. So I rejoice in the advancement that has been achieved. But I also weep when I re-read Dr. King’s speech. In particular, I weep reading passage:

“One hundred years later, the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination. One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languishing in the corners of American society and finds himself an exile in his own land. So we have come here today to dramatize an appalling condition.”

I weep because when I replace the word ‘disabled’ for ‘negro’ things are truly looking sad. Not just in the United States but in all the Western countries where I know disabled people – not to mention third world countries. In the intervening 50 years we truly have not come far when it comes to segregation, discrimination, poverty and misery for disabled people.

As a group we have poorer education than average, we have far poorer health (on top of our disability), we earn less money, we have a poorer social life and most importantly, we have much less access to things in our societies that others take for granted. Services are off limits for many disabled people. Stores, cinemas, museums, police stations, yes even hospitals are often off limits for those of us with different kinds of disabilities.

I am not here to compare the living conditions of disabled people in the 21st century to the black people in the 1960’s. I do not know what appalling conditions they lived under and quite honestly I dare not think about it. But I know a few things about what I and many of my peers have to endure. And that is enough to make Dr. King’s words ring equally true in our day and age as they did 50 years ago.

What my mission is today is to point out some of the subtle forms of discrimination and segregation experienced by disabled people on a daily basis. Things that were all addressed in that speech when it came to race; same things that are far from being solved today when it comes to disability.

Why is it that we are still not acknowledged as equals by others here 50 years after the civil rights movement? The easy answer is ableism, a term that is not very well known to those outside of disability circles. And if it is not known who is to blame?

I am sure I could point the finger at many groups in our societies. But I also think we have to look inwards on a day like this.

The black people of the 60’s worked diligently to be recognized. They formed groups, they took to the streets, they made their voices be heard loud and clear.

We have simply not been good enough to gather
as a coherent group to fight for the things that are blatantly wrong. Yes, we are surrounded by all kinds of discriminating practices and poor legislation. We are at the back of the line when jobs are created and we are the first ones to go when they disappear. We are dispensable in a lot of situations.

But we are also perpetuating that discrimination. We have internalized the oppression that we are faced with by accepting that we do not have the same rights as other citizens. And we have been conditioned to accept this as a fact of our societies. Too often we bow our heads and let the abuse continue – because what can we do? We don’t have a strong human rights organization behind us. We are not even a cohesive whole, being all segregated in our little individual organizations.

For a long time I have wished that we could gather enough people to engage in a march on our respective capitals. That we could be enough people to form a crip pride parade and proudly display our natural diversity. Where the wheelchair users held signs about “standing up for your rights” where the blind were wearing t-shirts saying “Blind is beautiful” where the folks with learning disabilities shouted: “I know things that you will never learn” to the tune of the deaf singing songs of their freedom.

However, I don’t have high hopes for any of that to happen. We are moving towards a world where it is survival of the fittest and where money talks. If anything we are heading for a cut-throat world where the so-called weak are going to be culled and there will be no room for individual differences.

Better off dead

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Disabled access – dog edition

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

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

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

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

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

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

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

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

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

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

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

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