I don’t see you as disabled

A few days ago I was talking to my co-worker. We were discussing an upcoming event (I work at a patient organization) and she says to me, “Remember, there is going to be a lot of people in wheelchairs.” I said, “Yeah, I know.” and then suddenly her eyes became twice as big and her face turned beet red, and she said, “I forgot you are also in a wheelchair.”

Now, I was sitting in my chair right in front of her with nothing between us. The evidence was right in front of her. She quickly starts explaining how she doesn’t see me as disabled and how I was different from most of our members. I understood her. I have tried it so many times. But should I be offended? I very much see myself as disabled, it’s part of my identity. I can’t imagine not being disabled, I’ve never tried it. I am proud of my disability, it has made me onto the man I am. In a sense I had every right to be offended. She didn’t see me for who I am. What is wrong with her? Is she blind or just plain stupid?

But I didn’t feel the need to be offended. There was no need for that simple reason that I have been in that situation so many times in the past. And it always happens when people become so close to me that they no longer have any defenses towards my disability. When it is the most natural thing in the world that I am who I am. So I told her that I knew she wasn’t just a co-worker anymore, I considered her a true friend. Of course I had to explain it to her, but I think she got it.

I know what goes on with others on a subconscious level. It has to do with what social psychologists call the ‘in-group, out-group model’ which is the basis for all social injustice, be it sexism, racism, or ableism. My co-worker didn’t see me as a representative of an out-group but part of her in-group and she got embarrassed because she so blatantly made me see her bias towards others in wheelchairs.

But I have also been offended in the past when people say “I don’t see you as disabled.” Often people will say it in a way where it is blatantly obvious that they do see me as something other. I think to myself, yes you do, but you might be on the road to where you want to be. If the need to say it is strong enough to be voiced, you are just not there yet. Some are sincere while others just want to be cool and feel the need to say it. To me it is such a cliché. But I can’t confront people with it. I have to be PC and just eat it. Once I answered an acquaintance, “I don’t see you as disabled either.” Wrong reply! The lady started bawling. I should have known, she was rather overweight. So here I was, a chance meeting in front of a strip mall and I had a crying lady on my hands. Just because I wanted to be a smart alec.

So back to those who truly don’t see me as disabled and don’t talk about it (first rule). They tend to forget the few instances I do need help. One friend was notorious for leaving me in his car. He’d get out of the vehicle and expect me to follow even though he had put my chair in the trunk. I have sometimes sat there for a full five minutes before he would return to pick me up. He would never excuse himself, most of the time he would give me a hard time for not having followed him into wherever we were going – he always had a wicket sense of humor, that might be the reason for or great friendship.

I travelled from Denmark to Bulgaria with another long-time friend. We drove in my van and he helped me time and again on the way there. But when we arrived at the house we were staying at that had six steps up, he started just going into the house and go about his business, not looking back and helping me. When he had done it three or four times, I decided not to say anything or make him aware of my presence – just wait in the yard. After a few minutes he came out and asked earnestly what I was doing there. Later that evening he confessed he was ‘the world’s worst aide’. Since I never paid him, all I could reply was that he was worth every penny.

So why are these deeds of apparent neglect Something positive to me? Shouldn’t I be annoyed when they don’t grant me the common courtesy of helping the that little bit I need when I need it?

No. Because they see me as I want to be seen. As a person. They see no difference between me and them, so they forget that the difference does exist when it comes to tackling certain physical barriers. They no longer practice othering when they are with me. In classical social psychological terms, I am a member of the in-group.

Othering is a difficult thing to tackle. I am convinced we all do it. I do it myself every day. If I see someone with a different cultural background I automatically have assumptions about how he or she is and what I can expect from them. I do it with people with different disabilities as well. I think it’s a biological defense mechanism, we need to be wary of those who are different, they might also be dangerous. Othering is not racism, ableism or any other -ism, but it is the basis for all of them. It is a subconscious way of acting towards those who are not know and therefore potentially not safe.

Inspiration porn as othering

The last couple of months has sparked a lot of debate about inspiration porn outside of the disability world. It started with the now infamous Superbowl commercials from Microsoft and Toyota, both companies feeling a need to show how people with prosthetic legs are able to lead perfectly normal – albeit bionic – lives. Granted we have come a long way with prosthetic legs – and good for those who wear them.

Those commercials showed two people who live life to the best of their ability. They have managed well for themselves. They might have some extraordinarily circumstances that make them somewhat interesting. But most people I know have extraordinary life circumstances and in that light these two were not that special.

I know a single mother of 3 who has unbearable pain. So much so she can barely get up in the morning. She needs help from her daughter to put on her socks and shoes to leave the house every day. Despite that she gets up, goes to work where she is on her feel all day long only to come home and collapse in bed at night because she has spent all her energy making ends meet in her low paying job. She is an extraordinary woman in more ways than I am able to describe. But at the same time she is not potential for a Microsoft or Toyota commercial. Why is that? She is way more disabled by her chronic pain than those two people with hi-tech bionic legs have been for a mighty long time. She truly struggles with her disability and she manages magnificently.

What is the difference between the single mom I know and the now famous cripples in these commercials?

All three do everything they can to live life to the best of their ability. But there is nothing inspirational about the single mom who gets out of bed every day despite a pain level that is unimaginable for anyone who hasn’t tried giving birth while passing a kidney stone at the same time (yes, I know such a woman as well.) People see her as an ordinary woman doing what society expects from her. Not as someone in whom we can bask in our inadequacies in the holy name of inspiration porn. She doesn’t have a visibly ‘sexy’ disability like an amputation or a sexy wheelchair (I know, I am damn sexy with my one leg and my shiny wheels – no need to tell me)

Somehow society has decided what disabilities are deemed ‘legitimate’ and which ones we’d rather not care about. And when someone is perceived as having a ‘real’ disability that person is also potentially an inspirational hero for merely living their life.

Living life to its fullest is by no means wrong. It is the fact that others regard it as an inspiration that I find both wrong and disgusting. Unfortunately there are many non-disabled people who don’t get it when we protest and tell them not to use us as their magic mirror – telling them they ‘are the fairest of them all’.

In the last few years a whole industry has boomed around this idea that disabled people doing something completely ordinary are superhuman. We have become the unwilling heroes in an industry that make non-disabled people able to feel good about themselves because they can reflect their petty little lives in ours.

This feel-good industry is fueled by an objectification of people who implicitly are deemed ‘less fortunate’. And it seems to please the masses of the majority culture to no end when disabled people can overcome so-called ‘unfortunate circumstances’ and achieve some semblance of normalcy.

Recently I ran across an article by Josephine Fairley (JF) in the British newspaper, The Telegraph. The article is a poignant reminder of how people with disabilities are regarded as something different from human beings. JF not only regards inspiration porn as something good. In her view inspiration porn, is considered “progress.” The progress lies in the fact that we are now being used for her and other’s emotional absolution instead of being shunned and hidden away like we used to be in a not too distant past.

To me it’s nothing short of a tragedy. That another human being can see progress when all I see is exploitation. At the very best it’s trading one ill for another.

JF completely fails to see that inspiration porn is no better than the freak shows of yore where disabled people were exhibited and dragged around the circus ring to elicit a sense of horror from the audience. The only difference between the two types of freak show is the audience’s expected emotion. We have traded the sense of horror for a shot of feel-good, hooray for progress!

I am not blind to the fact that on the surface of things it’s better for the audience to feel good about itself than to feel horror. But regardless of the instilled emotion the result for the objectified person is not much different. We are still a symbol of that which is different, wrong and beyond the norm.

Looking at a few other articles to see what kind of woman could come to such a lopsided conclusion I was quite surprised to find out her big issue is women’s rights. How can a person be an adamant supporter of human rights for one group of people whilst joyfully gawking at another group in the virtual zoo of inspiration porn?

This can only be done through the simple mechanism of ‘othering.’ People with disabilities are essentially different from those without. We are not really people after all. We are ‘other.’ Those whom fingers are pointed at. We are basically regarded the same way people of color were 200 years ago, humanlike but fundamentally different and lesser than. We are implicitly seen as subhuman.

The fact that a (presumably intelligent) woman JF finds it in her to describe inspiration porn as progress while fighting for women’s rights tells me that we are viewed as subhuman whether it is acknowledged or not. We are simply reduced to stooges in the inspiration porn circus.

We are deviant and different by means of our physical bodies. Our deviance recreates us as a magic mirror for the majority to reflect itself in and feel good about itself. And when we are reduced to act as that magic mirror it is easy for someone like JF to fight for the rights of one minority and not for another since the other really is the Other. Subhuman and deviant.

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.

Inspiration porn is bigotry

A friend of mine asked me the other day, why do you call it ‘inspiration porn’ when people are inspired by you? Why aren’t you flattered instead?

The last question was easy to answer. I explained the difference between inspiration porn and true inspiration to him. True inspiration simply being when someone inspires because they go beyond what is to be expected by a fellow human being. But I had to think about why it was inspiration ‘porn’ and it dawned on me that it is porn because it elicits some of the same feelings of satisfaction as porn does and under the same conditions.

Both old fashioned sexual pornography and inspiration porn objectifies a certain group of people so that another group of people can get off on it. Both types of ‘porn’ forces the second group of to view the first group through a an extremely narrow lens whereby they are seen as something that deliberately elicits a certain emotional response that has nothing to do with what they really are but everything to do with ‘how we’d like to perceive them.’

There are few things in life more gratifying than feeling good about who you are. It is a fleeting high that we can all relate to. It feels great to put one’s life into perspective and feel wonderful about ourselves. And for many the gratification of superiority is not unlike the sexual gratification of watching pornography. There’s a release of endorphins and other chemicals in the brain that make us feel better afterwards.

I’ll be the first one to admit that it is extremely easy to look at another human being who you think is in a worse predicament than yourself and think, “Thank God that’s not me”. There is one small flaw it this way of looking at our fellow humans, though. We just don’t know what it’s like to be them.

I remember back in the early 90s I became very inspired by a short clip from the movie Baraka showing the untouchables in Calcutta picking up scraps from the landfill to live on. Suddenly a young girl cracks a beautiful smile in the midst of what most of us would regard as the epitome of misery of the human condition(1:28 in the above link). A few weeks later when I was confronted by someone who found me ‘oh, so inspiring.’ That event made me think about that smile again – about how that had been my source of inspiration – and it made me realize that whatever circumstances a person is living in, they will try to make the best of it. And that nobody can ever be judged by anyone else because that other person will always use their own standards for making such a judgment.

It doesn’t matter whether one is an untouchable teenager in Calcutta, a middle aged cripple in a smart wheelchair, an old grandma with gout or a young stud who thinks the world is his oyster. We all have certain standards for what the good life is. We all have our ups and downs. What would break one will make another and vice versa. Why view another human being through the lens that is your perception of their misery?

Whenever I meet someone who is an outright bigot or even someone who expresses views of inspiration porn one thought comes to mind. My excuse is that I was born with this disability while they more or less consciously chose the thought patterns whereby they are judging me. The sad thing about it is that I have those kinds of thoughts virtually every day I go out into society.

And that is the root of the problem. There is a societal norm that disability is inherently bad. In turn, disabled people’s lives also are inherently worthless. And it is that societal norm that has to be changed if the lives of disabled people’s will ever get a chance to change. It has been said by many disability activists and disability scholars; it is not the physical challenges that make us disabled inasmuch as it is the way we are perceived by others. And that perception can change if enough people make up their minds and get behind such a change.

According to the American Psychiatric Association homosexuality was regarded a mental disorder until 1974 and had its own diagnostic category (it was abolished by a vote at a psychiatric convention – true story.) Now 40 years later gay marriage is normalized in most of the civilized world.

So what is the truth? Are homosexuals mentally disturbed freaks who should be treated for their terrible disease or should they be allowed to marry and to adopt – or even give birth to – children?

It is simply a matter of perspective and common attitudes towards a group of people that determines the truth. A perspective that (fortunately) has changed within my lifetime when it comes to gay people. And if we fundamentally can change the view on sexual preference why shouldn’t we be able to change the view on disability? Why is it so difficult to understand that disability does not equal tragedy?

There is no need to look down at us with that pouty face and tell us why we are so brave for getting up in the morning.

OK, I do think it’s an extremely brave thing of me to do; getting up in the morning – just like I think it’s a brave thing that everyone else gets out of bed (except for those annoying morning people who actually like getting up in the morning – freaks they are!) What makes a human being decide to leave their warm nest and go out and face the cruel world out there? I don’t quite get it.

The point is that nobody should feel the need for being inspired by me doing mundane, everyday things.

I am not saying that life as a disabled person is easy by any means. It is physically challenging being disabled! Most things take longer to do and many of them are difficult if not impossible to perform – like climbing stairs in a wheelchair or reading subtitles when blind. But the physical obstacles are a lot easier to deal with than the mental obstacles of living in a society where one’s basic worth as a human being is looked down upon by the majority.

The only reason someone can feel the least bit inspired by a disabled person when that person does things that are quite natural to others is that they did not value them as a human being to begin with. And when the devalued (or should I say, invalid) person performs tasks that go beyond what they are expected to do, then – and only then – do they become an inspiration.
Inspiration porn is simply belittlement in disguise. So when you think that it is so wonderful that the little blind girl is going on an outing with her classmates it says more about how you perceive her than it will ever say about who she is as a human being.
So why is it that there are not many disabled lawyers, doctors and scholars? It is not so much because of the physical barriers, it is because we have to climb the barriers of ignorance and denigration from those around us. We have to work 3-4 times as hard as others just go get over that and then we also have to fight the physical environment that we wish was the only barrier we met in our lives.

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.

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.

Inspiration porn revisited

In the past week I have encountered two incidents of the most insidious kind of inspiration porn that I have seen for a long time.

The first one is your typical picture where somebody with a disability is in a situation that is so perfectly normal that to me it is mundane. But apparently it becomes something ‘special’ to a bunch of people because one of the people in it is disabled. The other incident is a family who is exploited by the sort of idiots who create this particular nasty kind of trash by having a family image stolen from their blog.
Yes, they put the photo out there on the internet but nobody asked them if they felt like being exploited before their photo was stolen and exploited in the worst possible kind of way.

So the first story is an image I found on facebook. You can see it here. A friend of mine posted it with the comment: “Should melt even the hardest of hearts…” I guess I don’t just have something harder than the hardest of hearts; apparently my heart is also cold, cynical, scornful and contemptuous if we stay with that sort of vernacular. So why am I such a cold hearted bastard?

Well, first of all. What is it about the picture that makes it so special that it deserves a go-around in the social media carrousel? As far as I know men propose to women on a daily basis, most of them get down on their knee to do it and even more of them do it in a far more romantic place than this somewhat nondescript public park. A wild guess would be that what makes it special is that he brought a wheelchair out to do it and that his knee runs no risk of bleeding since it is blatantly displayed as a prosthetic.
That said, I would like to know what it is that’s so fucking special about someone proposing only because he is disabled? Does his disability prevent him from acting out this activity in any way so that we need to feel all sappy and teary eyed? Do we need to tell the world that anyone who is not spontaneous breaking into tears is a hard hearted bastard?

I think not. As far as I know most physically disabled people are capable of doing such a thing, just like we are perfectly able to brush our teeth and go to the bathroom (funny enough, those images have still to make the rounds in the inspiration porn circus) – these things are not AN EVENT just because we are disabled. They are the very things that make us all human and disabled humans are not special only because they are disabled and all our actions are not special because we are unable to walk, hear, see or whatever else is different about us.

There is absolutely no need to plaster our daily activities all over the internet only so others can sit back and feel good about their small pathetic lives.

Then there is the question of whether the image is real. I might buy into that the guy actually wears a prosthetic, I doubt it has been photoshopped in. But I have serious doubts about the wheelchair. I think it’s a prop. As a quad friend of mine points out: “I think she’s crying because she just realized they paid 5K for a set of Emotion wheels, 400 for a backrest, 500 for a cushion and 2.5K for a chair… and he can walk. Lol” I would say if the guy is an amputee who obviously walks with crutches why would he need power assisted wheels, a custom backrest and a ROHO anti-bedsore cushion? That to me is such overkill that no insurance company would have given it to him – provided he lives in the US – and in any other civilized country he wouldn’t have been given them either. So my conclusion is that the picture is staged and therefore all the more insidious.

Besides, it is present on some of the major picture sharing sights which tells me that it was shot for commercial purposes. I will refrain from even commenting on that fact.

But whether it’s staged or not doesn’t really matter. It is a cunning and deceitful attempt at using disabled people to make others feel good and it stinks.

The other incident involves a family that is very dear to me. I have been following their blog for a while. It is written by a mother to a little boy who is born with spina bifida. A mom who continues to insist that her boy feel special because he is special and not because he is disabled. A mom who honestly writes about the ups and downs of having a disabled child that everyone else want to treat differently for all the wrong reasons. I have a particular interest in them because I see so many of the subtle things and interactions I experienced as a child with spina bifida, many of them never talked about because my parents weren’t as overtly aware.

This family had a picture stolen from a post on their blog, manipulated and commented on in a way that made them the poster family for ‘special needs families.’ All, of course, without their permission or knowledge.

Again, this is a sinister exploitation of a normal family. Yes, one of them is disabled and uses a wheelchair – and so (insert favorite expletive here) what?

He also uses glasses as does many other people but rarely are people with glasses used for this sort of inspiration porn. I wonder why. Glasses assistive devices on par with wheelchairs but for some reason wheelchairs sell better than glasses when it comes to the inspiration porn industry. And funny enough he is not wearing his glasses in the picture that was stolen so that is definitely not why they chose that particular image.

This innocent boy who is not even old enough to make a conscious decision whether he wants to be the poster child for this industry – which by the way never pays the people they exploit – he is just being used in a sinister enterprise by people he (hopefully) will never know who are abusing the fact that they scoured the internet to find his picture and used it for their own appalling purposes.

On a lighter note I got inspired by all this inspiration.

So on April fool’s day I decided to device an evil little prank on facebook. I photoshopped a picture of a brace for my crippled leg next to a prosthetic for the leg I don’t have, put it up and told people that I was working with a orthotist friend on ‘project stand up’ (needless to say, my orthotist friend, Thomas, was a little peeved that he had been scrapped for this project) I don’t remember the last time I have gotten so many likes and comments on a post, people are SOOO happy for me and support me in my efforts to stand up for the first time in more than 20 years. Now, a lot of them are just being good sports and playing along but I would not be surprised that more than half fell for it and truly believe that I am working on this project… a project that I would find utterly ridiculous and worthless. So now my conundrum is, do I tell them it was an April fool’s?

I think not.

Disability rights advocates are not people with disability.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“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.

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.