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.

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People will stare. Make it worth their while.

I found this meme on my wife’s Facebook wall today. At first I chuckled but as the day went on it kept sticking in my mind. Most of my life I thought I was a master of the art of making people stare. But at a fairly ripe age my wife would teach me how I knew nothing about it.

This is the story of how she lectured me in the fine art of making people’s stares worth their while.
People will stare
I grew up with the stares. There has never been a moment where certain people didn’t ogle me. Being so used to it I usually don’t even realize how much people stare at me. It has become second nature or part of living as wheelchair user in a bipedal world.

I still remember the discussions I had with my wife about it when we met. She was both surprised and slightly annoyed when we were out. I still remember how she would react by blatantly staring back at those who were most obvious about it. But after a while she changed tactics. She started doing exactly what this meme said – make it worth their while.

One of my favorite “make it worth their while” moments is when I ride an escalator. As most wheelchair users know, this is a pretty cheap trick. It’s fairly simple to use an escalator when you ride a manual chair. Get the track and when it starts going up, pull your wheels up to the step and your chair will rest nicely on the steps. All you have to do is to hold on to the railing all the way up like anyone else standing on their legs. I have always enjoyed the stares when I ride escalators. They go from the merely skeptical to the truly horrified.

The only trick that truly tops riding an escalator is doing wheelies down a short flight of stairs. For many years in my youth it topped the list of my “make it worth their while” moments. However as I have grown older I it has trickled down the list after I realized that witnessing it could cause a heart attack in some people – and then it suddenly not worth anybody’s while, after all.

Needless to say, my wife got a kick out of seeing me ride the escalators. She is hardly an exhibitionist but she certainly experiences a level of joy when I cause shock and horror in those who don’t know any better. So I wasn’t surprised when, after only having known her for a short while, she topped my escalator trick by putting icing on it.
She was standing behind me as we rode up to the second level of the local mall. Suddenly I feel her hand gently grabbing me by the chin and pulling my head back. I looked up and saw her face only inches away from mine. And when we made eye contact she leaned down and kissed me passionately.

I will not even try to explain what people think when they see us riding up and down the escalator, kissing like a pair of teenagers (did I mention that her perfectly plausible excuse is that we are at the perfect height when she is standing one step lower than me?) The stares we get are priceless. The looks of disbelief and puzzlement are mixed with surreptitious stares and snickers or outright laughter.

It is one thing to see a cripple ride an escalator – especially when the elevator is right next to it in plain sight. It is also – for whatever strange reason – an odd experience seeing a cripple expressing passion for a fellow human being (trust me I’ve tested it) in public. But to see both things at once apparently is so outlandishly absurd that most people don’t know what to do with themselves – and then they might as well have a good stare.

Truly a way of making all the stares in the world worthwhile!

Inspiration porn, the modern freak show

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

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

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

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

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

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

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

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

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

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

This is what I think is going on here?

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

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

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

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

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

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

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

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

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

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

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

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

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