“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.

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4 thoughts on ““Cripple of the week” or…

  1. Beautifully written, Henning…I have been contemplating that post & the terrible comment since yesterday, and all I can come to is the sense that a life inside of that meanness is a most severe disability. It’s really tough to find a path to compassion for people like that, but wow, she lives in a mind so small, I can’t imagine the suffering there, and probably the shame (and cycles of that) …not to excuse it at all, but such statements certainly cannot come from love or joy or freedom, which is clearly the life you have made for yourself, with the help of your parents, and the life that little boy is building with the awesome support of his family.

  2. Dear DRB,

    I have been following your blog for a couple months now and find your perspective both challenging and compelling. However, when it comes to my son, I have difficulty applying this perspective. I think this is his diagnosis (SMA Type I) seriously impacts his ability to survive beyond childhood. If it weren’t for these life expectancy issues, I think I might be more able to say (at least on a good day): “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.” But as long as his life is on the line, it seems paradoxical to me not to support a “‘take that!’ to his diagnosis” (mostly in the form of ) approach among the ways we respond.

    Care to enlighten me? Are there “levels” of disability? (Sorry if that seems crude.) Should life expectancy issues be treated differently than other issues? Or does that still have the potential to undermine society’s recognition of the “wholeness” of the differently-abled?

    Thanks for your thoughts,

    Jonathan

    P.S. For context: I originally found your blog through a post you did on a slightly famous twenty-something who has SMA type I/II. Your critique of some of the ways people respond to his disability (including even him) challenged my way of thinking. I can see how if/when my son reaches teenage years/adulthood, these issues will become very real…yet at that point it may be too late (or at least more difficult) to retrain myself, my son, and all our social circles into a proper way of understanding his situation (i.e. “he’s a young adult now and needs to be given a dignity we’ve actively been undermining over the last decade and a half…?”)

    1. Hi Jonathan,

      Thanks for your response. I appreciate you taking time to write and seek further understanding. When it comes to life expectancy issues it is a difficult thing to deal with. It is true that SMA is an insidious disease when it comes to that particular aspect and I don’t envy you or your son. Most disabled people do have a much shorter life expectancy than most people, even those of us where it is never talked about can expect to live a shorter life than average. I had a funny experience when I turned 40. I had invited an old school mate who I rarely saw and he told a story about how when I changed schools from a school for special needs kids to a regular school all the kids at my school (all 500 of them) had been told that here came a kid who nobody expected to be more than 30 and that he was delighted to be here on my 40th birthday. And I am delighted to say that I am now pushing 50, so all around it’s a cause for celebration.

      But that was not at all what I wanted to tell you. What I want to say is this. By embracing my disease fully I also embrace the fact that I am that my body is much more vulnerable and more than most I really don’t know what tomorrow brings. That means that I need to live life to its fullest here and now. I need to enjoy the moment with all that it entails. I have celebrated my disability by seeing how I could overcome it, not to be some kind of inspiration to others but because I wanted to do that for me, it is not for everybody with spinal cord injury to go live as a ski bum but it was something I wanted to experience (so screw the way I am looked at by others), was it a medically sound decision? No, not at all, but it was what I wanted at that moment. So now I have to live on dialysis because throughout the first 40 years of my life I took many of those “unsound” decisions and I am sure that if I had followed doctors orders I could have avoided dialysis for maybe another decade, but what kind of life would I have had to live to do that? What would I have had to miss out on for potentially better health in the end?

      To sum up, I have lived a ‘carpe diem’ life. I have been fortunate enough not to sacrifice my life on that alter – though I did lose a leg because if it. And my best advice to you as a caring father is to let your son do what he wants to do when he wants to do it and try not to impose any barriers on him outside of what is common sense, whether he is disabled or not. Whatever faith we have or what we believe, what we know is that we only have this life – so let’s all live it to its fullest.

      I hope that answered your question, otherwise you know where to write again.

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