Exclusion Confusion

Many late-deafened people feel isolated when their hearing loss is first diagnosed. I mentioned before that I never knew one single person who wore hearing aids when I first got mine in my early twenties. Most of my friends at the time were finishing up grad school, getting married or having babies. Usually I was the only one they had ever encountered with a hearing loss, other than possibly an elderly grandparent. Conversations revolved around the usual subjects young people that age discuss--pop culture, school, boyfriends, babies, breastfeeding, husbands, sex and childbirth. When I turned the discussion to my hearing aids, I'd be met with blank stares as they tried to process what I was going through. I learned quickly enough most people my age couldn't handle it.

The isolation was overwhelming at times. When you develop a disability at a young age, it changes you. My eyes were opened to a truth few were willing to accept-- that life is unpredictable and unfair. Disability can settle on anyone at any time for no particular reason, and there's often no cure. Depressing? It can be, but you learn to adapt and take pride in your ability to adapt, because adapting becomes your life.

I can't imagine growing up deaf or being the only six-year-old who wears hearing aids in a mainstreamed classroom of giggly first-graders, though those I've met have who grew up HH are remarkably well adjusted. Sometimes I think part of the problem for adults who lose their hearing is an identity crisis. At one time I was a different person, then my world turned upside down. My life seemed to be on hold, because not only had I developed a hearing loss, but my hearing was unstable. I've continued to lose more and more hearing all these years.

With the knowledge that my hearing could take a nosedive at any moment, it's been hard to carve out a path. I've learned to live in the present. This is where I am today. I don't know where I'll be tomorrow. I crave the stability of structure and a backup plan more than most. The unknown is scary. I'm dependant once again on something (someone) I can't count on, only this time that someone is ME. Luckily I married the Rock of Gibraltar whose unwavering devotion, routines and support is as predictable and solid as they come. He doesn't drink.

This is a great blog about camps for young HH, deaf children set up so they won't feel so isolated. http://aslci.blogspot.com/2008/06/calling-solitaires-for-research.html In a few weeks I'm going to "adult camp"-- two of them back-to-back. I couldn't be more excited. You see, late-deafened adults need to connect with each other too-- just like kids. Adult camp usually takes place in big cities. There will be interpreted workshops with CART, trips to restaurants in large groups of people who can't hear, tours for the deaf, and lots of hanging out in bars.

Conventions with HH, deaf people are the highlight of my summer. Normally, I'm paralyzed by group socializing with hearing people because of all the lips needing to be read, but not with this crowd. We write, sign and repeat as often as needed until **everyone** gets it. No judging. We all know deafness does not equal stupidity.

This year I'm going to the International Federation of Hard-of-Hearing people up in Vancouver, BC, Canada. Then I'm going to Philadephia for the Say What Club convention. There, I'm going to meet with a few DeafRead bloggers, and old friends I don't get to see all the time, and we're going to have a blast!! ALDA and HLAA also have adult "camp" (conventions) for people with hearing loss. I believe the HLAA con is coming up soon, but I couldn't swing it in addition to the two others. IFHOH was a priority since Vancouver is so close, and it rarely gets held on this continent. Also I get free room and board with an HH Canadian friend.

Because of my experience of growing up hearing, then becoming deaf, I value inclusion above all else. I've felt EXcluded too many times among the hearing that I find the exclusionary practices of DeafRead offensive. I haven't blogged about this before, but when DeafRead failed to provide CART for their convention in SF after I requested it last spring, I realized I don't really belong here, though I've stayed to learn more about Deaf culture. Also, I had hoped with the influx of CI blogs, they would become more inclusive over time.

There was really no GOOD excuse not to accommodate me. I requested the accommodations more than two months in advance of the convention. The thing is, the Say What Club is equally as small as DeafRead, and they're committed to providing interpreters as well as CART for their conventions, so ALL attending will be able to understand. I realize interpreters are expensive. We ALL know that. The point is if we want to be included, then we should all be models of inclusion.

Now DeafRead has booted off Cochlear Implant On-line under a trumped up charge that she's in cahoots with Cochlear. This is so ridiculous I'm speechless. A person can not be an "employed volunteer." She makes no money off Cochlear. While I realize many of you don't like Rachel's blog, wasn't it enough to exclude her from your "custom" feeds?

Further, I've since found out DeafRead has disallowed a cueing blog from joining.

DeafRead has become an uncomfortable and unwelcoming deaf community for those of us who use our voices.