Normally I focus this blog about caregiving related issues. I tend not to wade into the discussion of disability related issues because there are strong and eloquent advocates who already speak to those important concerns.
However, this morning two posts scrolled across my Facebook page that got my head spinning. Welcome to my morning pre-coffee.
The first was a photo of a gorgeous baby girl. The caption to the photo said “just because I have Down syndrome doesn’t mean I am not beautiful”.
The second post was a letter authored by the mum of internet sensations Ollie and Cameron. Ollie and Cameron are three-year old UK twins who delight us with their adorable antics and playroom dancing. Most mornings, these days, my Facebook feed is full of whatever stunt Trump pulled lately and the potential risk of him “leading” the country south of us. Seeing Ollie and Cameron on my FB feed boogie-ing together, or talking about their nursery school day, restores my faith in humanity and gives me a reason to smile. Ollie and Cameron, by the way, also happen to have an extra chromosome and live with Down syndrome. The letter their mum had written was voicing concern about a recent article that described her boys as the Down stars of the internet, rather than simply the spirited boys they are.
You see, in both these situations the children involved were being labeled, first and foremost, by their disability rather than their humanity, interests, abilities, and so on. Articles and memes such as the two noted perpetuate this idea that people with disabilities are seen as their disability rather than their personhood.
My son has, over the years, been variously described as “a CP boy”, “a quadriplegic”, “a handicapped boy”, and so on. All of these descriptions limit Matthew to his disabilities rather than what I consider his important and valuable qualities. Matthew is an 17-year old boy who loves cartoons, music, stories, sensory activities, swimming, and bubbles. Yes, he happens to live with some complex disabilities but he is NOT his disabilities, just like Ollie, Cameron, and the beautiful baby without a name (don’t get me started on the fact that her diagnosis is more important than her name!) are not Down syndrome. They happen to have Down syndrome.
As a graduate student in the 90s it was hammered into me by my advisor that one always wrote about people with disabilities as “people with disabilities”. Their personhood always ought to be stressed and seen before their disability. Their disability does not define them and as someone writing about disability I should always write in such a way that respects their humanity, talents, abilities, and interest – not in spite of their disability or as some form of disability porn, but as their defining and important features. It may have been one of the most important lessons of my graduate school years, particularly given the fact that I went on to parent a child with significant disabilities.
So let’s all commit to something. See the person before the disability and in situations where the disability is noted as the defining feature call it out!