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.

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Bleeding heart do-gooders

Part of my spinal cord injury is that I have had kidney and bladder problems my whole life. That has lead to virtual kidney failure that now requires dialysis. Dialysis is an extremely time consuming activity and it is also potential life threatening. I do home dialysis that has the best outcome when it comes to overall health and mortality.

For the last year and a half I have been a member of what I so far have considered the best home dialysis organization in existence. Last fall I was invited to speak at their conference in Florida. It went really well and I met some great people there.

Right after I got back to Denmark in January the president and founder of the organization died. His death left a huge vacuum as he had tried to hold onto the reins himself. So suddenly there was no leadership of the organization. It was left to 3 women who have spent until now to gather themselves. To add to the confusion the only one of them who was a kidney patient herself died 3 weeks ago, and the way I see it she was the only one who had any business being on the board of directors.

I have been writing a column on their website and I had tried to be pretty active in general in their community, talking with people and posting in different public places online connected to the organization.

After the death of Rich, the founder, I tried to reach out to the board people. I told them that I probably had some talents (like writing and communicating) that they might use. In the beginning I was brushed off – they needed time to lick their wounds after the death of Rich. I respect that and left them alone for a while.

When 2 months had gone by I tried again. This time I was completely ignored. In the meantime my wife had been asked to hand in her résumé for a position in the organization. She did that but never heard back from them. She didn’t know whether they had received it of not because of the dead silence that by now has become the norm from them.

So last Friday I decided to give it one last shot. I wrote a great piece for their website (my third since January, the first two having been ignored) and sent it off to one of the board members. By Tuesday I had heard nothing from her. I knew she’d been online, she had had time to introduce herself to a facebook group over the weekend but I was (as per usual) ignored completely.

Tuesday I had lost my cool. I posted a rant on their facebook page where many of the members could see it. I reproached them for what I thought was callousness toward the members, laziness and a complete lack of communication skills (what I have described above is just the tip of the iceberg of their lack of communication)

Wednesday I spoke with a bunch of people connected with the group, other kidney patients, professionals and partners of patients. Most of them understood and agreed with what I was saying and where I came from. With others I had some great discussions.

The person I sent my writing to Friday contacted me, pretending to have not seen my rant and being all nice. I was at the height of my rage at that time so I read her the riot act, most likely losing that friendship.

Then this morning (Thursday) I woke up and realized the one thing I had missed all along. I had discovered the proverbial elephant in the room.

The two remaining board members are both widows of deceased kidney patients. They have had their time, they had lost their loved ones and now they are trying to do something good for the world. But they are utterly unable to see things from a patient’s point of view.

I come from the disability rights world and I have worked with lots of people with mental illness professionally. In both settings ‘nothing about us without us’ is an unwavering principle that is so deeply rooted that it is rarely even articulated anymore.

The organizations I have known in the physical and mental disability world have all been run by members of that particular group. Family members were welcome as family members but that was all they were. I have never seen a non-disabled member on any of the boards I have known.

So when I see two former care partners trying to run an organization meant for patients, and when I see them shunning those of us who they are supposed to represent, all my alarm bells start ringing.

I do not disregard the experience of being a care partner. I think it comes with its own set of problems and worries. But the organization is a place for people on home-dialysis. I am convinced it was meant to be primarily for homedialyzors. The problem now is that that apparently it’s not. Yesterday I would have said it has been usurped but I know that the founder had a hard time trusting people and that he was able to control the two ladies who are now left to run the show and that is why it’s in this mess.

In the philosophy and psychology branch called phenomenology they operate with a concept of ‘what it is like to be.’ Basically it says that there is no way anyone can ever know what it is like to be someone or something that they are not. I will never know what it is like to be a woman. And the same goes for care partners, they will never know what it is like to live with kidney disease. They will never know the urgency of living we are faced with every single day because of our condition.

That is really what is so upsetting to me. There is absolutely no understanding or compassion for us as kidney patients. People die around them like flies and what do they do? They stop and bemoan their own loss. They do not think about those who are still here and how they are supposed to help US forward instead of looking back at that which no longer is.

I have been told by a few that they are working behind the scenes and are working on a political level. But if none of the people whom they are supposed to represent have any knowledge of what they are doing, I think it would be better if they go back to their knitting and exchange of cookie recipes. How can anybody represent people they ultimately want nothing to do with? People they shun like they were plagued?

I just don’t understand this. If they are so damn busy with all kinds of other things that they are not able to run the organization in a way where people feel included why is it that they don’t give it up to people who can? Why don’t they pass the baton to people who are more than eager to take over?
Is it the old ‘power corrupts’ argument again?

Basically this is a strong argument for why we as disabled need to take back our power. If we leave it to bleeding heart do-gooders we will end up being reduced to the poor people in need that society at large already see us as. No matter how much they think they are helping us they are not able to fully comprehend what it is like to live with a condition that lasts for the rest of one’s life.

This sort of charity work is an insidious form of oppression and the only people who are there to recognize it and therefore also to stop it is us –the ones who are the recipients of the charity/ oppression.

“Cripple of the week” or…

It has been a while since I wrote here. There are many reasons for that, the primary one being that I have been enjoying an extended vacation with my wife and family. So it’s definitely time for me to add another post now.

A couple of experiences have compelled me to scrutinize the subtle differences between inspiration porn and some of the disabled people that I find inspirational in a good way. I have written about what I consider inspiration porn on several occasions so I will try to not bring that up here. But there are many people out there who are true inspirations to me, other disability rights advocates and people who do amazing things, not despite of their disability but simply disabled people who are brilliant at what they do.
The latest of those experiences happened over the last few days. And it wasn’t so much a disabled person but a mother who seemed to understand what it is like to have given birth to a disabled son – a mother who actually got it when it comes to living with a disability.

The post I am referring to can be found here.

This mother is determined to let her son grow up as someone who is not only at ease with his disability but someone who proudly can say, my disability is who I am and it is part of what made me that unique, awesome being, called me. She says: “I don’t want him to say “take that!” to his diagnosis– I want him to thrive in it. I don’t want him to downplay– I want him to celebrate. I want him to say disability and hear dignity.” Unfortunately this is a rare attitude and a precious gift to a boy who is still learning to talk and understand the world. It is rare not just amongst parents to disabled children but with people in general.

I was raised in pretty much the same way. I don’t think my parents were so keenly aware of what they did as this mother is, but they had a determination to not shield me and they never let me be ashamed of my disability – subconsciously they knew that I had to embrace it to be able to live a good life with it. My mom raised me with the motto, ‘you can do whatever you set your mind to’. It has worked well for me, and even when I set my mind to things that were detrimental to me I knew that I had the power to change it. And I knew that I could always be proud of who I was regardless of how other people perceived me.

So this is why I am bringing up the story of this amazing mom. I decided to post a link to her post on my facebook wall and within a short while somebody made this comment: “cripple of the week.”

Now, the term ‘cripple of the week’ was my first exposure to the inspiration porn industry, so please let me explain. I heard the term for the first time when I was a teenager and hanging out with disabled people much older than myself. It referred to the feel-good stories that were recurring features in the weekly magazines geared towards women that abounded at the end of last century. Stores of someone who had ‘endured a life with sclerosis’ or ‘survived the onslaught of muscular dystrophy’ or ‘the little girl bound to a wheelchair’ – sop stories custom made to make the readers feel superior in their boring pedestrian lives. Stories of inspiration – the ‘there is no disability, only self-imposed limitations’ bullshit kind of thing that we are bombarded with day in and day out.

These types of stories are based on an idea that disabled people’s lives intrinsically are less worthy and when someone manages to live a somewhat fulfilling life despite the unfortunate circumstances we celebrate the mere fact that they are able to live at all – however mediocre that life is. It is based on a prejudice that in reality is way more crippling than any sort of physical impairment will ever be.
And that is where I see a lot of inspiration in the words of this wise mother. She want her son to grow up knowing that the crippling words, attitudes and prejudices is not his problem but a flaw in the eyes and mouths of those choosing to see him in that light. It is the exact opposite of the “cripple of the week” stories that I had to endure in my youth – being one of those who were often asked to be the victim of such a story (and having the stamina to say no, except for one time when I was celebrated after having won the most prestigious sports grant for young people in my country at the time)

Here is a woman who knows that her son needs to feel that disability is part of his identity. On the one hand it is not something that defines him as a person and on the other it is not something that can be downplayed or hidden away as an elephant in the room. He will have to live with it as who he is, so that he can utilize its strengths as well as its weaknesses.

I feel an immense pang of joy to know that there is a little boy out there who is so lucky to be brought up in such an environment with parents who think this way, parents who will bring the best out in their little one and support him in the best possible kind of way.

However, I feel an equal amount of sadness when people I know don’t get it, like the person who compelled me to write my post today.

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.

Inspiration porn, the modern freak show

I have written about inspiration porn earlier on this blog. It is no secret I find those who make their lives into a source for ‘inspiring’ others because we cripples are seen as tragic characters. And when we manage to live normal lives we seem to be an endless well of inspiration to those around us. So when I see fellow cripples making a living by entertaining others with their tragic but inspiring lives, I just feel like regurgitating.

Disabled people have been part of the entertainment industry probably longer than any of us know. The Romans used disabled people in their entertainment. The most typical career for dwarfs and hunchbacks in ancient Rome were performing for the ruling class (who else?) and the ones so employed would have considered themselves lucky since the majority of disabled people were silently discarded in those days. All kinds of cripples were thought of as bad omens and therefore they were quickly and silently disposed of.

Some of the best evidence of dwarfs being used amongst the European nobility are the paintings from the Spanish court painter Velazquez who painted the dwarfs at the court of Phillip IV with what looks like a great deal of compassion. His most famous painting, Las Meninas, have – along with the royal family – two dwarfs in it, María Barbola and Nicolas Pertusato. But he painted portraits of other court dwarfs as well, for instance: here and here.

The dwarfs were usually used for different kinds of entertainment and according to certain sources they usually were treated pretty badly by their employers. It is difficult to say when they started being used in the more popular sort of entertainment, like the sideshow freaks known from the 19th and 20th century where we have a lot of photo evidence.

I have a great deal of respect for the freaks, the gimps and all the other travelling performers of yore. But I also think that most people can agree that their slow disappearance up through the 20th century were a result disabled people being viewed in a different way than before. Granted there is a mighty long way to go in the human rights department, but we live in the 21st century even if it doesn’t always seem like it.

However, we still have cripples being shown off in different sorts of ways. Some of them even make living out of it, just like the royal dwarfs and the sideshow freaks I mentioned above.

The problem is that those who have replaced them are of another, and more sinister, slant. They revel in their public performance. They even draw large crowds these days. Like all entertainment cripples in history this group is seen as something of a spectacle, something to be gawked at, an object so different that they are both feared and awed at the same time.

I am talking about all the inspiration porn stars of the world.

These modern sideshow freaks, who make a living from showing off how they are differently abled (excuse me, I just need to go vomit for a while) whose intentions are not so much shock but only awe. The men and women who have managed to make a freak-show-spectacle out of their everyday life and now use it as a performing art.

If you don’t know what I am talking about then please watch this (I am really reluctant to even link to this page since I find it revolting, but the end justify the means) And while you do, think about how this person is totally playing on your emotions while at the same time he is just someone making a living out of being a cripple, just like the people in Velazquez’ paintings: http://www.youtube.com/watch?v=XKTg_INHgpc

This is what I think is going on here?

This guy is talking about dealing with things that 1000’s of us are doing every single day without making a spectacle of ourselves. In fact, you could say that he is doing the very same thing as 7 billion people do every day, namely living their lives – nothing more and nothing less.

So why is it so special? Because he is a cripple and therefore he as well as many others feel like he should be granted special privileges based on pity. But disabled people at large are not asking for special privileges, what we ask for is simply equality. Being granted opportunities that are equal to those of others is enough for us. Not being seen as special or something to be awed because we live our lives like everyone else will suffice.

So the next question is why are they/we being dealt the pity card? I personally think there are many reasons for that. I also think that the main reason is it could happen to you. Anybody can become a cripple from one moment to the next and that is something most people fear and therefore we need to feel sorry for those poor bastards who actually are crippled – because the thought of becoming one is filled with fear and dread.

But the lives of disabled people are still their lives. They have their ups and downs. (I know, it’s a bomb shell to most of you)

Regardless of who you are or what you do, I think it’s fundamentally wrong to make kids cry as the guy does in the video. But I have a particular hard time with the sinister exploitation of the kid’s feelings when it is based on making a spectacle out of being alive and being a human being. Yes, you can jump into a pool. Yes, you can play ball. Yes, you can get up when you fall to the floor. Whooptidoo, so can I.

Inspiration porn has replaced the good old freak show because times have changed. It is no longer comme il faut to be shocked at the monstrous freaks. But in this day and age where we all are striving to become better people and we all need a little bit of coaching, it is nice to have someone who obviously are in more dire straits than ourselves (I mean, look at him – he’s got no arms and no legs!) who can teach us about survival in spite of, seemingly, horrible circumstances. Nowadays it is not polite to be shocked and horrified by their abnormal ways of looking and behaving, therefore we use them to inspire us.

But really; inspiration porn is so incredibly similar to the side shows. They are both exploiting the ingrown emotional response that people have when they see someone whose body is radically different from the norm. The difference being the superficial emotion, inspiration porn elicits a feeling of admiration where the freak show elicits a feeling of shock and horror. The problem is that underlying both feelings is that of pity. Without pity there would be no need for admiration or horror because it is the fact that disabled people are seen as something pitiful that lays the foundation for feeling either emotion.

That is why these inspiration porn stars portray disability in a way that is anything but helpful when it comes to showing the world that most of us cripples live meaningful lives.

What the inspiration porn stars are doing is to show how well they have managed in the world despite their disability. But that also implies that disabled people are not supposed to make it. We are not supposed to live meaningful lives. We are fundamentally set up to fail as human beings because of our physical limitations, whatever they happen to be.

I am sorry. I just don’t think that way. I live my life the way I live my life. I have done some great things and I have done some pretty inane things. I have done lots of things that a disabled person normally wouldn’t do because my zest for life demanded it and because I was lucky enough to have people around me who were crazy (or stupid) enough to do them with me. But I have never done things despite my disability.

On the other hand I know plenty of disabled people who have lived more or less quiet lives who would not be able to perform as inspiration porn stars. And despite that they are far greater heroes in my eyes than most people because they have learned to live their lives they way they saw fit – not despite their disability but with their disability. Some of them are great inspirations to me.

The inspiration porn stars display themselves as a symbol of tragedy and courage in a setting of normal people. Someone who has overcome his tragic circumstances and now lives a life resembling something meaningful. The underlying story goes like this: “I have learned to take care of myself, isn’t that fantastic? Aren’t I great to have done so?” …and I say, no it’s not fantastic, it’s human nature. And you are no greater than the person who has overcome poverty or racial or sexual discrimination – in fact, they are way more respectable in that they don’t go out there and flaunt their bodies, they don’t exploit their situation, they don’t make kids cry bitter tears of pity.

Every one of us does whatever it takes for us to take care of ourselves in whatever capacity we can.