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.