Last summer I wrote extensively in my own blog about the two hearing loss conventions I went to. One of those was the Say What Club Convention in Philadelphia.
Over the past several years, the SWC and their conventions have helped shape my self awareness and growth in dealing with hearing loss. For our workshops, we invite guest speakers to talk about their areas of expertise and advancements in technologies serving the deaf/Deaf/HH population. Each summer I come away with new information. During the year, as many of us continue to discuss what we learned there, that information is often tossed around and expanded.
More than that, the conventions are a time to connect with friends we’ve gotten to know on-line. While convention mornings are dedicated to educational workshops, the rest of the day is free for socializing. For those new to hearing loss, losing your hearing can be an isolating experience. Most others just don’t understand the issues we struggle with, even after getting hearing aids or cochlear implants. The difficulties of keeping up with conversations in social groups and at work can take an emotional toll, while at the same time many of us grapple with the loss of daily activities we once found enjoyable.
For me, it was music– specifically playing the piano. I used to play every day for at least an hour. When it got to the point I could no longer hear the notes I played, I gave it up. I also stopped going to my book group. I had made many friends there and the discussions had once been a great source of enjoyment. But, even though they all knew I relied heavily on lip reading, it was impossible to stop the natural flow of conversation as members talked over each other to be heard. I was no longer the person they knew when I had first started going. I couldn’t follow all the lips at once and slowly pulled away. In time I gave up going to church (couldn’t hear the sermons), going to movies with friends (couldn’t hear), and my involvement in PTA activities (couldn’t hear!) I used to spend a lot of time talking on the phone to friends, and I’ve all but given that up as well. Basically my social life came to a stand still. I became a shell of the person I used to be, and I didn’t know how to deal with it.
It’s one thing to have ADA laws that require accommodations in public places, but the truth is we are rarely accommodated in our every day lives. There’s no law that a group of your PTA friends must hire a CART provider when they all go out to a restaurant for Mexican food and margaritas. There’s no law requiring private book groups to make themselves accessible to the deaf. Churches aren’t required to install FM loop systems for their sermons, much less their social activities. My life had turned upside down. I had become a hermit for all intents and purposes. Until I discovered SWC.
At my first convention I socialized so much I only went to a couple workshops. It was as if the social void I’d been feeling for years was suddenly filled to overflowing. Unlike HLAA and ALDA we don’t have monthly meetings. Instead we ‘meet’ all day long every day on-line, but only once a year in person. Writing is a great way for the deaf to communicate! Many of us live too far away from hearing loss organizations to be able to attend meetings, or the meetings may conflict with our work schedules. The great advantage of SWC is that it’s on-line, so it’s available at your convenience from your own home. Still, we realize the value of meeting in person. Our conventions are the only time many of us get to be around so many people who can’t hear at once. SWC is the one place I feel there’s a true deaf/Deaf/hh community. It’s not all about being late-deafened, or hard of hearing, or Deaf. There are all kinds of members, and I have benefitted knowing each of them.
This summer’s convention will take place in August in Portland, OR. I’m so looking forward to another great time with my peeps.