Wednesday, May 23, 2018

Does It Matter?

Does it matter that I have a disability?


It does.

People keep saying that they don't think of me as disabled.

Even though I am.

People keep saying that they don't see me that way.

Even though I am, quite visibly, disabled.

People keep saying that I shouldn't speak of myself that way.

Even though I am sitting in my chair while we talk.


People don't understand why I bristle at the idea that they are complimenting me.

Even though it's clearly offensive to tell me I'm not what I am.

People don't understand why I state that I am proud of my status as a disabled person.

Even though they understand pride in virtually every other person.

People don't understand why the conversation turns sour when they are being so sweet.

Even though it's not 'sweet' to kill off all the words I use to speak of my self.


I need those words, the words they want to eliminate, expunge, euthanize, to make my experience real. I need those words to explain my place in the world. I need those words to reify my history and my present and my future.

I need to speak those words.

I need those words to be heard.

I need those words fully scrubbed. Bright and clean, free from shame.

I am disabled.

Without contradiction.

I need that word to describe who I am.

I want to exist in language.

It is not a gift to eliminate me.

Word by word.

Taking my power and my experience and my history from me.

I am disabled.

Whether you see it or not.

Whether you think of it or not.

Whether you speak of it or not.

I am real. My experience is real. My community's history is real.


Without need for your permission.


ABEhrhardt said...

Without who you are, your words have less value. Because you wouldn't have the insider experience of disability.

It is easy to discount able people's 'take' on disability, much harder to discount yours.

You shouldn't have to defend your status as a disabled person.

When you were an advocate before you were disabled, you still had very good experience of being marginalized for being different.

But not quite in the same way as much of your current advocacy.

Of course it matters: you are out in the world, using up your energy to do things for others who might not have your abilities; it is still a huge cost to you.

clairesmum said...

The words we choose shape our reality, and our understanding of the world. Words hurt....words heal.....and each of us can and must choose our own words to speak our truth, our lived experience.

When you try to 'explain away' or reinterpret the words of another person, you are erasing that person and claiming that you know better what the person is thinking/feeling/experiencing.

Such arrogance..and such abuse of another with the words that you choose to use.

Keep writing and speaking your truth, Dave - you are teaching many of us about the power of words.

Theageingaustic said...

You are so correct. I did not discover that I was autistic until I was 70. Now, I am who I am and I am proud of my autistm. Stay strong and proud!

Rachel said...

When people think - consciously or not - that something (in this case disability) is negative, they aren't going to want people they like and respect describing themselves in a seemingly negative way. That attitude is the problem. Not the disability itself - disability is a fact of human existence. It can be a massive pain in the ass sometimes. But our disabilities don't detract in any way from our worth as human beings. I have to tell myself that a lot.