I’d rather hang myself than hang myself

My wife found this image a couple of weeks ago on Facebook and asked what the bastard had to say about it. Always being one for replying to things in a timely manner, here is my short and sweet answer:

I think the headline says it all, I would not be caught dead in such a contraption. It’s inanely ridiculous that he needs to inconvenience himself publicly in such a manner in front of all their friends.

How low can one stoop in trying to live up to some ableist norm? Apparently low enough to hang from the ceiling like some crippled Pinoccio at one’s own wedding.

Hangman

I am pretty sure if my wife saw me hanging like that she’d get all excited and think it was some new kinky game I had invented. And in that case I would find it rather inappropriate in front of our wedding guests.

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.