May 1, 2007

Blogging Against Disablism, Ableism, Disability Discrimination

(Blogging Against Disablism can be located by clicking the link to Diary of a Goldfish.)

The language we use around disability and discrimination varies widely, and talking about language is a very important part of understanding the way that disabled people are perceived by society... Differences may include the way that disabled people are described; as disabled people, people with disabilities, the disabled, etc.; as well as the very word for the discrimination we experience. Ableism or Ablism is the term more commonly used in the United States and thus more prevalent on the Internet as a whole. Then there's the simple and perhaps most easily understood term of Disability Discrimination... (from Diary of a Goldfish).

That little Goldfish has it right: language is key to the most significant aspect of our lives as humans, identity. Take away the right one has to choose identifiers for herself and she becomes dispossessed of selfhood. Words are not just words: they carry embedded data that serve to cue others' responses.

Put the wrong name to a thing and the meaning of the object comes into question, not the misuse of the word. So, one might say that a rose unnamed would smell as sweet, but a rose named a dandelion would never be smelled at all.

I am epileptic. Regardless of the ways others describe themselves, I am Epileptic. My life and thoughts are entwined with E. and so the one cannot be stripped away from the other. If I am to identify as a whole and complete Being, I must and do accept my manifested self as Epileptic. It is not a misused term, cry for pity, statement of heroism, bravery or courageous act.
It is an expression of my totality.

I fight against disablism by pushing back against it, by choosing how I will be identified to others. I say "I am epileptic" aloud so that it is remembered along with my name and my face. I keep my epilepsy from becoming a weaponized insult by owning it.

Witholding or mitigating how I may use the term relative to myself serves others, perhaps, but does not serve me. I am not a bisected sentience and I am unwilling to infantilize myself by allowing others to determine for me how I shall be called.

But like so many things, people work against self determination in a number of ways. First, one's use of self identifiers is called into question: "well, you are much more than just that"; then corrected: "you mean a person who happens to have epilepsy, don't you?"; and then turned inside out: "Honey, you shouldn't keep bringing it up all the time. If you just don't say anything, no one will ever know you have this terrible disease."

It can be tough to resist the dark side, especially when it comes at you wearing the faces of those you love, like your wrinkled little blue haired auntie. When it does, I just take a deep breath and remember: I'm no dandelion!
I am a flower with a name: I Am Epileptic!


Anonymous said...

From Scott:
Paula... First, you have an awesome way of writing how I feel...I think it is spot on for me. I recommend the blog to anyone looking for a proactive view on being an epileptic.

Philip. said...

A great post.

Thanks for writing it :-)

I hope you don't mind but I have added a link to your blog on mine.


seahorse said...

Great post - I'll link to you too, but it will take some time for me to get through all these fabulous contributions. It's all so thought provoking and reassuring, all at the same time.

Rick O'Shea said...

Hey :-) Got your mail and have written about you!

Strange the subtle differences of having epilepsy. Here in Ireland the phrase "being an epileptic" is almost considered un-PC. I've alwasy described myself as someone who has epilepsy. Maybe it's a way of it owning me less than the other label would...