Inspiration without porn

I have spent several blog posts giving inspiration porn the bad name it deserves. I think it’s pathetic that people use images of disabled people doing perfectly normal things only to feel good about themselves. Look here and here

So today I am going to show what inspiration porn isn’t.

I have a friend in my native country of Denmark whom I still haven’t met even though we live less than 5 miles apart. We are always too busy to be able to find a time to meet so our relation is mostly through different kinds of media. We publish in similar places and we interact on social media.

I think she will be proud if she saw me introduce her as a radical-lesbian-cartoonist-disability-rights-advocate, so that is hereby done.

Since we are both into women I guess the only significant difference between us is that I am not a cartoonist – even though I’d like to be one sometimes.

About three years ago Sarah virtually stopped breathing and I virtually stopped peeing. She decided it was time for a vent and I thought I’d better go on dialysis. It has been interesting to follow her progression. It was very similar to mine in the sense that we were both born with our disability and suddenly one of our vital organs quit and we had to accept the life of a cyborg. We both find a strange satisfaction in telling our friends we are cyborgs. At the same time we curse the damn machine that limits us in out daily life.

But yesterday Sarah took the cake. She jumped off the deep end and showed that being on a vent really is no hindrance if you have a dream. She decided to audition for X-Factor Denmark and (spoiler alert for those who know Danish) not only that, she moved on to the next round.

Please allow me to introduce

Sarah, the Breathless Singer

So why is this not inspiration porn? Well, Sarah is not able to breathe. She will never be a great singer, she doesn’t have the air for it. She probably doesn’t really dream about a career in music. I know for a fact she is busy changing the world in so many other ways that I am sure her passion lies there.

To me Sarah is truly inspirational because she lives out a dream.
She is doing something that transcends her disability. She will never be a singer. But she still wanted to audition for a popular TV show. She didn’t expect to move on in the competition even though she did. She has a beautiful voice but it’s by no means a ‘great voice’. Why is it not a great voice? Because there is a piece of machinery behind her back controlling the air that goes into it. All she controls is her vocal chords.

And she did that fantastically. I am looking forward to seeing Sarah next time around. You go, girl!

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 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.

“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.

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.

I am such an inspiration

My whole life I have been an inspiration. Oh, I am so incredibly great and I am so amazingly able to do all kinds of things all by myself. I don’t need all the help that I seem to need. I know, because people have told me this my whole life. From certain members of my family over people I know from different walks of life to total strangers. They all tell me basically the same thing, ‘you’re such an inspiration’ and there seems to be no need for them to explain why that is so, it just is.

I particularly like the guys on the commuter train who pat me on the head and tell me how great it is to see someone like me and what an incredible inspiration I am to them… because total strangers know these things. I usually tell them that it’s good to see someone like them and how glad I am that they made it out of bed, and when they stare at me baffled I tell them that I know how hard it is for someone like them to perform such a difficult task. Most of them walk away either shaking their head or with a scared expression on their face that I so far have been unable to decipher.

But back to me, that is what this is all about.

I am categorically a brave soul. I touch on all these people lives – or should I say, hearts – merely by being alive and by going about my daily living, going to the store, eating out or taking the local commuter to where I need to go – or when I perform the amazing task of using a lift to get into my van, after all it does have several buttons (and to those who know me it’s no secret I don’t always manage to push the right one)

I bring a smile to people’s faces as I pass them in my daily routine – if I could only get paid for being so heroic and valiant.

But what I lack in income from this awesome life I lead, I get back as attention. People look at me with that smile that to some might seem condescending, a smile that I know they think is a gesture of friendliness and gratitude. Not so much because I am me, I don’t think most of them care who I am as a person. But I do know what I am to them, I am such an inspiration – not just an inspiration, but such an inspiration.

So why do I think their smiles are gestures of gratitude? I know because it is human nature. Aren’t we all grateful for who we are when we see those less fortunate than ourselves? Don’t we feel just a little bit better about ourselves when we are able to mirror our own life in their misfortune? Guilty as charged, I do. I just can’t help it, or maybe I can but it takes a lot of willpower and personal strength. No matter how I lok at it, I am still happy I am not a sub-Saharan African, deaf, gay woman with AIDS and a serious limp. I admit it, I feel thankful for not being her. I am glad to have my crippled life where I can go out in the world and be an inspiration.

I know you want to ask now. Do I know a sub-Saharan African, deaf, gay woman with AIDS and a serious limp? No, I don’t. And if I did she I would never call her an inspiration to me. I mean, what had she done to deserve it just by being a sub-Saharan African, deaf, gay woman with AIDS and a serious limp? If she had done something amazing then, yes, I might consider admiring her. But then I would admire her for what she’d done, not for who she is. What she’d done is above and beyond her being disabled (or gay or a woman or sick, for that matter) If she had created a living for herself and she now owned a thriving business, I would say ‘good for her’ but not because of, or in spite of her obvious difficulties, but because she was an amazing person who had accomplished something for herself, regardless of the hand she’d been dealt by fate.

Why should I look at that woman through her difficulties instead of looking at her as a fellow human being? Suddenly she disappears and what I am looking at is her circumstances. She becomes a symbol, an object that I can use to mirror my own life in and feel good about myself. She becomes reduced from being a person with a disability to being her disability.

She becomes the inspiration for me, an inspiration that lives outside of me, an inspiration that takes on its own life in my thoughts and my actions. Suddenly she is no longer a person but some sort of representation of how I would like to live my life in a perfect world – except I really don’t want that, because that would mean that I also would have to bear the cross of her disability. And despite my elation about being an inspiration, I know that is not what I want.

So instead she becomes a beacon of hope that things are good in the world. I have my quiet little life that I can live without too much trouble and thank God it’s not me who is that sub-Saharan African, deaf, gay woman with AIDS and a serious limp.

But at the end of the day, who am I to know whose life is more or less difficult than mine? And that is what really curdles blood when I hear: “Dear me, you are such an inspiration to me!”

ETA: I just found this that puts the subject in a more serious light:

http://badcripple.blogspot.dk/2013/04/shane-burcaw-laughter-is-not-always.html

I have to say that ‘Badcripple’ is one of my great inspirations and it was fun to beat him to a subject. I don’t think that is going to happen too often.