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.

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.

Four wheels good, two legs better

Ok, folks. I was reminded of this device http://www.matiarobotics.com/ once again by a dear (able bodied) friend who posted it on a social media site. I had happily forgotten how ridiculous it is but now that it was brought to my attention I need to say a little about it. What makes it really ridiculous is the heading of this video: http://www.wimp.com/newdevice/  and especially the heading, “New device makes wheelchairs obsolete” That is probably the worst load of false advertising that I have seen for a long time, especially in the light of this quote on the main site from the user in the video: “By using this device, I can get up whenever I want. It’s wonderful to stand up on my own because I spend my life sitting.” (my underline) And he is right. He will spend his life sitting. Unless, of course, he lives in a world that is completely flat with no curbs, hills or floor surface obstacles.

The wheels of this device are ridiculously small and therefore it would probably work really well in an office building or a hotel or something like that – but for heaven’s sake; do not bring it outside if you don’t want to experience a spectacular spill! Aside from that, I wouldn’t use it to race a snail. Who wants to be a few inches (or feet) taller and spend three to four times as long getting from A to B? I see no forest of hands in front of me, I’m afraid. It also seems really cumbersome to get in and out of. It has a turning radius of an old fashioned hospital style wheelchair and I wonder how much it weighs in case somebody needs to pick it up over a 3 inch curb or push it up an incline.

But it is not so much the completely impractical nature of the contraption that makes me squirm when I see it. It is the overt ableism that it represents – by itself and especially by the video on the website. It is a symbol of the bipedal hegemony that unfortunately seems to be the frame of mind with people in the disability aid industry. To paraphrase George Orwell, the thinking goes something like this: “Four wheels good, two legs better.” It is not good enough to have found what up until now has been the ultimate aid for us with a walking impairment, the good old wheelchair. No, there must be some kind of device that can make it look like we are able to stand up and – hopefully – make the impression that we’re walking.

Why, I ask in all modesty? Why does it have to be so?

I don’t know who you would trick into thinking that I am walking with that thing, even if they can only see my upper body and not the actual contraption. I would still be moving like a slow and cumbersome version of R2D2, and most likely also sound like one – something that might be the only allure to a sci-fi freak. Then again, nah…

The video is worth a closer look. I assume it is made to sell the device by mentioning some of the problems that people with walking impairments have, but it utterly fails to show how their device will alleviate these problems – mainly because it never could. It also fails to address one of the most prevalent problems that many wheelchair users have, namely muscle contractions caused by extended time spent in a sitting position rendering the device utterly useless.

Let me quote what seems to be a dubbed version of what associate professor, Hurriyet Yilmass (no further credentials) says in the video and then make a few comments about the nonsense the company has chosen as its selling points. “People facing spinal cord injuries typically are forced to spend their lives in a wheelchair” Nice ableist start from the supposed professor. It amounts to me saying something like “People who have never learned to swim typically are forced to spend their life on land,” or the even more ludicrously fitting: “People who do not have the ability to fly typically are forced to spend their lives on the surface of the Earth.” Yes, we use a wheelchair. And like everybody else on this planet our circumstances ‘forces’ us live our life in the best possible way we can, for us it is using a wheelchair for others it is staying close to the surface of the earth and for some it is not getting too far out into the water.

“In addition to losing their ability to walk, they also lose the ability to stand up,” Yeah, the ability to stand up is a prerequisite for walking so what are you saying exactly? “This causes a variety of unwanted health issues, especially problems such as cardiovascular disease, blood pressure irregularities, pressure sores and problems of bowel and/or bladder functions which also directly lead to additional medical costs.” Ok. Let’s pause here for a second. Yes, she is (more or less) spot on with what she says here. But there is not ONE THING on her list that is alleviated by the stand-up-device. She is stating something blatantly obvious that has no bearing on what she is trying to push. To add insult to injury, she talks about additional medical costs, forgetting that what she is trying to sell is probably going to double or triple the medical costs of the suckers who consider buying it.

She continues her inane chatter in this way: “Other devices that help patients to stand up are usually structurally bulky, require outside assistance and cause the user to spend extended amounts of energy.” Excuse me, have you looked at this contraption? I have seen ones like it that are just about the same size – in the 1980’s, mind you. And to my limited knowledge, they were equally useless, if that is any consolation.

“The main advantages of Tec are that users can do almost everything that non-paraplegic people can do indoors without any assistance and without the need for special modifications” So, I ask, what activities can be done with this that could not be done in a wheelchair aside from reaching the high shelves and the top cupboards? I fail to see it being an advantage that it moves at a considerably slower rate of movement and a more cumbersome and unnatural body posture due to sitting up in a sling in an upright position.

“It facilitates active and comfortable participation in social life. And users can bend down and alternate between standing and sitting positions. In fact, the user is able to do so while maintaining safety and balance” This is where the misinformation virtually turns into lies. Compared to sitting down ‘active and comfortable participation in social life’ is certainly as close to untrue as it gets. Hanging in a sling will never be better than sitting on a decently fitted seat with good back support. And when you have no use of your legs, a standing position will always be sketchy at best due to the lack of a natural sense of balance. I wonder how the user can bend down, but I will leave that alone. When it comes to ‘safety and balance’ I am certain it is made so one doesn’t fall, but that still does not compare to the inherent safety and balance that comes with sitting down in a chair. That leaves us with one true statement wrapped in a load of BS, ‘one can alternate between standing and sitting’ and hooray for that! It seems like the wheelchair is superior to this ridiculous device in all areas except for reaching up high.

And that brings us right back to my statement that it is created from an ableist, bipedal mindset – and nothing else. It is not intended for making life easier for cripples, it is made for some to feel more normal while for all intents and purposes making them more impaired in their daily lives.

Planes, trains and automobiles

I have used many kinds of transportation throughout the years. I have been lucky enough to be able to use public transport for the better part of my life when I was in Copenhagen or other metropolitan areas. I lived for most of a decade in rural Washington, hitch-hiking wherever I wanted to go. I also used my chair for long distances, and we’re talking pushing for days to get somewhere. Yes, I have been blessed with seeing large parts of the world without utilizing my own motor vehicle.

After having bad a few old beaters and a wonderful motorcycle with a sidecar while still in Washington, I finally broke down when I redeployed to Denmark and got myself a brand spanking new van (partially subsidized.) And I might as well admit it, it was a great feeling being able to move around a lot faster than before. Of course I missed the long summer nights trekking here or there while listening to the birds performing the best they know – but not enough to leave the van behind and go down the road in my chair. And I have really loved being a motorist most of the time.

There is one thing that bothers me to no end though. And that is the fickle nature of non-standard equipment in my van. I don’t know if they make it to break but I have a strong suspicion. I spend more time in the cripple garage than I do in the other garage. The lifts in the two vans I have owned so far have both been of such a nature that they can’t withstand the weather (and I am not just talking about the nasty winters here in Denmark, they are equally bad in the summertime) and if it’s not the weather that is their bane, they just decide to leak hydraulic oil, or the door decides not to open properly (something that seems to happen bi-monthly) and then I am back with the other cripples in the ‘special’ garage, looking at babbling kids with crash helmets used for walking and drooling adults driving their aides mad right before my eyes.

Sitting there it makes me wonder why it is expected that I take the day off for this task. Which immediately makes me think about all the other things I spend my time doing… as a result of my disability. Time at the hospital, time at the apothecary, time on the phone with various government and semi-government agencies, time spent filling out forms for the aforementioned agencies (and God knows they love forms – the more mindless drivel they can put into a form, the better it seems), time spend explaining some 16 year old clerk why I need to speak to one of the aforementioned government employees who actually  knows something and not a 16 year old clerk, time spent fixing and maintaining my wheelchair (or any other piece of equipment that I need for my daily living), time spent hiring, firing and trying to find new aides, time spent keeping track of their salaries and reporting them to the right person.

Then things were a lot easier when I spent my time hitch-hiking around the Western States. Me, my backpack and my sleepingbag tied to the chair. But that was half my lifetime ago and things have changed. However, I still remember the Native American guy who picked me up by Pyramid Lake in Northern Nevada and told me to travel with the hawks while handing me a hawk feather and a pack of cigarettes as a parting gift. And to this day I try to uphold my promise to this wise man and live a life that takes me where it is supposed to.

But boy, it seems difficult when I sit there staring into my coffee cup while contemplating the redundancy of getting something fixed that in reality should just work properly and not break down for the third time in 8 months.

I say, please let me pack a bag. It requires no hawk’s eye to see what direction I would take my flight. I know that and so does she.