Voices Out of Turn and Without Permission

A couple of days ago the controversy about a particular gravestone placed in memory of a child with a disability by their family entered into public discussion again. You may remember that I wrote about this gravestone (as art, not as a memorial and certainly not about the family who lost their child) before. The sculpture showed a child rising out of their wheelchair and returning, whole, healthy and non-disabled, to heaven. Predictably, perhaps, I don’t like the ideas behind the statue and in fact feel that some of the sentiments that the art raises are dangerous. I felt that I had a right to comment.

My sense that I had a right to speak about this, from a disabled point of view, was confirmed when I saw this image all over social media with all sorts of people commenting. Mostly, people loved it. Really, really, loved it. And they said so, loudly. They spoke of a ‘loving God,’ of an ‘end to suffering,’ of the ‘release of the body from disability,’ for starters, but others were bolder in saying that the death of this child was ultimately a good thing because they would be whole in heaven and that the family could get on with a life unburdened.

So.

Lots of chatter.

Enter the disability community.

I was not the only blogger, by far, to write about the art and what it represents from a disability perspective. Everyone was very careful to talk about the art. Let’s review. The statue was placed in a public place and then discussed in public space. As a result of the commentary around the statue by, primarily, non disabled people, who, predictably, loved it we spoke of what the statue means to those of us who live with disability and the resultant, ‘I’d rather be dead than disabled’ comments which are whipped out to slap us across our reality on a fairly regular basis.

Yesterday, on one of the discussion threads about this, someone tore into people with disabilities who were commenting on the pictures, saying we were bringing a particular political agenda to the discussion and that HOW DARE WE CRITICIZE HOW SOMEONE MEMORIALIZES THEIR CHILD. They were wild with upset.

OK, let’s agree with something.

Most of us commenting on this statue and other similar artwork do have an agenda and a particular political point of view. Being disabled isn’t just about disability it’s also ultimately about politics. Going out to a restaurant can be a political act. Living ‘out’ and being ‘out’ while ‘being disabled’ is a challenge to how many see the world – trust me with wasn’t the hand of a disabled person that wrote the ugly laws.

Now, let’s agree with something else.

Non disabled people, who love this statue and gush over it’s lovely sentiment, have an agenda too. They have a political point about disability too. These aren’t just benign comments about a portrait of sunflowers. These are comments on the statement that they see the statue making about disability. The have given themselves permission to speak and scream when we speak, as they see it, out of turn and without permission.

But their voices are welcome.

Ours are not.

We are told we are disrespectful

We are told we have agendas.

We are told that we are using the death of a child to further our cause.

We are told to SHUT THE FUCK UP!

Unless we agree of course, then we are welcome into the mob.

Well, I believe that, even if it upsets people to hear what we have to say. We need to say it. We need to challenge, every where we can, the idea that disability is transcended by death and that death leads to release from the bonds of disability.

The image of people with disability as a polite, meek and grateful community is simply not true. The only way that people will learn that is when silence is shattered and our voices shout over the slow and steady murmur of ‘death to the disabled’ that thrums through society.