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When It Sucks to be Deaf

When It Sucks to be Deaf

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[names have been changed, but that’s it. this is a copy/paste of an email exchange]
Hi “Jane”,

“Mary” of the IDSC said that you are all ready for me, re: captioning for the town hall on Tuesday. Great!

So what do I need to do?




Hi Meriah:
Any chance you could call me after 1 pm EST today to discuss what you need?
I’m in a board meeting this morning but need to know what specifically you need.


Um. That’s kind of funny. You want me to call you when I’m asking for a captionist for the town hall phone in because I’m deaf?

The point is, I can’t hear on the phone.



Now, to be fair to Jane, she tried. She said she was going to get Skype together for me, but since she told me her contact details only a couple of hours before the phone-in NDSS/NDSC Town Hall meeting, I couldn’t get it set up in time: I couldn’t find her or  anyone else in the system. I did not see an “add” or an “invitation” from her.

So I was stuck. And it sucked.

You know when it sucks to be deaf?

It sucks when you want to participate and you CAN’T.

It makes me feel like a kid with my nose pressed against a door with a window. I can see things are going on but I can’t get in.

You know what else sucks? When the door is to an organization that serves people with disabilities. That door is supposed to be open for me, it’s supposed to be welcoming. But instead, I have to knock and pummel. They said they’d leave the door open for me but I couldn’t find the door handle.

So you know what else sucks about being deaf?

In the end, I wonder if it’s all my fault because I couldn’t find the door handle. I couldn’t get it together with Skype, right? I couldn’t find them. I couldn’t see their names. So this is my fault, right? And it’s my fault in the first place because I can’t hear on the phone, isn’t it?

In the end, I can’t help but feel the deep irony of it all.

I couldn’t get access to a Town Hall meeting with the national organizations representing Down syndrome, a Town Hall meeting about the homicide of a young man with Down syndrome. A Town Hall in which many parents are protesting the fact that authorities are blaming the young man’s Down syndrome on his being killed.

Clearly disability access is not a present-focus with the organizations, else a phone-in Town Hall would have been held differently to begin with; captioning would be a fact and not a requested option.

And there is something else about this… and I’m having a hard time putting my finger on it.

It slips around and I can’t quite grasp it.

Something to do with the shame/blame component. Maybe when or if it connects, I can come back and we can talk some more.


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