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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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  1. Meriah

    I didn’t get in the line for questions before time ran out, so I asked via a tweet whether a transcript would be made of the conference call. I have not received a response, yet, but your experience should certainly justify a transcript being provided as a poor post hoc substitute. If also interested in a transcript, let us know what response you get.

    (And, I hope I’m not being too lame suggesting your experience can get what I asked for, when really, the point is you should have been provided what you asked for.)


    1. Jennifer Campbell says:

      Mark, we have been told several times over now that no transcript will be that no transcript will be made available. they say there was no transcript made however missed a bus in business who have used a service like they used I know that it is pretty standard to have at least a recording available to you. the group that Mariah and I are both in even offered to do the transcribing from a recording…. yet they claim that it is not available. there are many of us now you’re pretty well commenced nothing really just don’t want what was said to be in written form because trust me it did not go the way they wanted it to. they could have easily made this an online form from the very beginning as was suggested to them several times. But hmmmm…. that would have provided written documentation as well. it is shameful the way our national organizations have been handling themselves lately. we at their members need to speak out loud and clear. we will not stand for this

  2. You’re so right! We (community) definitely need to get better at cross-disability awareness and acceptance. Captioning should be automatic, especially within the disability community. Hope this opens some minds! Thanks for sharing.


  3. Ridiculous! I am sorry, Meriah, that this got all f*ed up. You could not have been the only person who needed closed captioning. Grrrr.

  4. That’s horrible! You needed to be there for all of us! Please let me know if a transcript is available. This is not your fault! xo

  5. This sucks. I am volunteering with a baby/new mommy group at Club 21 in Los Angeles. We just completed part one of a sign language class. Three of the babies are deaf. The whole conference call seemed to circle around this theme of not listening to the people they supposedly represent. I am embarrassed of any association that might be assumed with myself and these groups based on my son having Ds. Thank you for writing about this but I am sorry you had to.

  6. JUST ROAR. I can’t tell you how incredibly disgusting this to me. This organization represents people who are often deaf. JUST ROAR again.

  7. I couldn’t believe that you weren’t able to participate on call. I cannot believe an organization with the sole purpose of supporting those with disabilities….couldn’t make such an essential tool available to you. Unfortunately, there will not be a transcript available. The NDSS says the call wasn’t recorded. I find this VERY difficult to believe as all of the operator-assisted calls I have EVER been on, have been recorded.

  8. I’ve had a deaf sensitivity guy, who I emailed saying *I can’t hear well on the phone*, email asking when it would be a good time to phone me….I emailed him back to say “I’ll let you read that again and think about it” but just didn’t have the energy to respond to another thing after that.

  9. Jackson Weber says:

    I am deaf too, and I just found this by looking up “being deaf sucks”… even though I am only 15, I can relate a bit… in high school, whenever I watch a video/movie, I have to have closed captioning otherwise my cochlear implants cannot comprehend what the people on the videos are saying. It sucks. My entire life i have been bullied for having a hearing disability, and I hate how our society is run; all the bad shit happening to the good people. I’m just glad I found somebody who thinks the same way as me.

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