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.