Deaf Community Outreach

I'm deaf. I have been since 1978, when I lost all my hearing through bacterial meningitis. Although I received a cochlear implant in 2010, it doesn't allow me enough hearing to participate in telephone conversations.

When I was diagnosed with breast cancer, I started looking for online support groups, especially for metastatic breast cancer. I found a few message boards, as well as real-time peer-led support chats. However, those real-time chats all had one unfortunate thing in common: they were all telephone-based.

I cannot be the only deaf/hard of hearing individual with breast cancer. I'm special, but not quite that much of a special snowflake. But this meant that the deaf community was being underserved and overlooked in the world of breast cancer support.

There was a metastatic support group offered through Young Survival Coalition that incorporated video, so I signed up in hopes it was something like Skype. If I wore my implant, then I might have a chance of following along at least well enough to benefit. I was wrong. Although there were some video call slots open, it was still predominantly telephone-based.

I knew the deaf community deserved more.

I spoke with the Senior Manager of Field Operations from Young Survival Coalition, Jennifer Stanley, and brought this problem to her attention. She took it to the national office and they decided to go forward with this.

Here is a copy of the email I received:

"I have talked with my National office about this and we are excited and think it is a good idea.  Our thought was to start off for the month of October to set the date/time and use the chat function of the community boards.  I can also post it on the online community board calendar.  Can you promote it through the resources you know of in the deaf/HoH community?  We would want to target the young (45’ish) and under breast cancer survivors to participate in the chat.  Since we are still in the middle of piloting this program (it’s just 4 months out since launch) we could talk about adding it to our regular line-up of calls if the interest is there as we test it through the community boards over the next two or three months.  If it seems like it’s going well and the interest for the program is there then we could start using the online video format in January.  Does this sound good to you?  We are so appreciative of you bringing this need to our attention and are excited to be a part of it going forward."

The chief problem now would be getting word out to the deaf community and making them aware of this program, in hopes of reaching those with breast cancer.

We are looking at either the third or fourth Monday of the month, a monthly meeting, at 8 pm Central time. (9 pm Eastern, 7 pm Mountain, and 6 pm West Coast times). This is open to deaf/hoh people around the world with any stage breast cancer.

I ask that the deaf/hoh community help me by boosting the signal and making this program known in hopes of reaching those of us with breast cancer. We have so little in the way of resources open to us, it is phenomenal that a national company is willing to address this need and try to open an avenue for us to have support.

And even more teeth problems

Seriously. More teeth problems. I just had a molar in my lower right jaw removed due to an abscess on Friday. By Sunday a molar in my upper left that the dental bridge is attached to started hurting. I went into the dentist today and found out it's forming a abscess there too. Really? Really? Really?

That's me and my teeth. Seriously, e-fucking-nough. So now instead of just a follow-up on Friday, I get a follow-up and a consultation for another extraction. The dentist prescribed an antibiotic for the infection, and hopefully that will manage the pain until I can get this damn thing removed, which very likely won't be until after the wedding. Why this month of all months? This is ricockulous!

As it is, the prescription hasn't hit the pharmacy yet so we're still waiting on that, and it'll take a projected 36 hours before it starts working. 

In other news, I've discovered that there is currently no live-chat peer-led breast cancer support group that is accessible to the deaf or hard of hearing community. Every single one is telephone-based. Even the ones that allow for video still require a telephone connection. I've been talking with an administrator at the Young Survival Coalition about using the forum's chatroom for a deaf-accessible peer-led breast cancer support group at 7pm Central Time, the 4th Monday of every month.

I know I'm not the only deaf person with breast cancer out there, and there's a distinct lack of accessibility for the average deaf person. Hopefully I can help change that.