Hearing Loss Advocacy Panel – Part 1
Moderated by Jane Schlau
Here are some of the national hearing loss advocacy leaders with their thoughts about advocacy. You’ll hear from Karen Keefe, Alan Hurwitz, Terry Portis, and Claude Stout.
This is part one of two parts.
For more coverage of this great convention, please point your browser to http://www.hearinglossweb.com/res/hlorg/alda/cn/2006/2006.htm
Question 1. Please tell us about the very first time you advocated for yourself.
I started advocating for myself fairly late in life. I was born deaf and had a lot of support and accommodations growing up. And I did a lot of denying. It wasn’t until I was married that I started to think about myself and who I really am.
After my first child was born I realized I had to do something, so I went to a meeting of SHHH. But everyone there was older and I didn’t really feel like I fit in. Then my audiologist introduced me to his wife, who was a social worker. She introduced me to ALDA-Boston.
I made a TTY call to Marilyn Howe, who invited me to a party. I went and felt right at home. So I got involved with ALDA-Boston.
About that time Massachusetts was planning to cut funding for the Massachusetts Commission for the Deaf, and ALDA decided to protest. We wrote up a statement and I went to the State House to do my first advocacy.
My wife got me into this, because she has severe hearing loss. She got a cochlear implant last year, and it has been a blessing in our lives. Our sixteen year old daughter is fluent is sign. I’ve taken beginning sign language four times, and it just doesn’t stick. My first advocacy was when I was about ten and someone tried to take my Krispy Kreme donuts. [Ed. Terry’s concerned about his weight ;-]
Seriously, I guess my first advocacy was when I was teaching a GED course. One of the students was mildly retarded, according to his record. After working with him a bit, I asked him about his hearing, and he confirmed that he didn’t hear very well. So he got a hearing aid and passed the GED in a few months, and went on to become a mechanic. I wonder how many other people have been wrongly diagnosed and are not getting available help because of it.
I remember when I was 13 I delivered newspapers. I’d get up at 4:30 in the morning, walk a couple of miles to my paper route, then fold and deliver about 75 papers. And I had to collect from everyone every week. It was a wonderful job for me, because it was a great opportunity to meet and talk with people.
I saved my money and bought my first car when I was 16. Soon I noticed that it made a horrible thunk when I sped up or slowed down. I took it to a mechanic and he told me it needed a transmission and it would cost $350. Another mechanic said the same thing. I took it to a friend who was pretty knowledgeable about cars, and he took it for a drive. When he got back he asked me what was in the trunk. We opened the trunk and found my bowling ball, and that was what was making all the noise!
I was the only child of a hearing couple. I went to the School for the Deaf when I was five, and I only got to go home once a month. I was terrified, of course, but it turned out to be just what I needed. I was there for fourteen years, I had great role models, and I learned to work as a team player.
I think my first advocacy was about the curfew. We had to be in by 10 PM, and we thought that as juniors and seniors with good grades, we should be able to stay out later. We started negotiating with the administration and won that right!
2. Why did you become an advocate for other people? Why did you pick the organization you currently represent?
I always thought SHHH was a local group. But then my wife Denise told me that it’s national and has about 250 local chapters. Then one day about five years ago she told me that SHHH was looking for a National Director, and she thought I’d be perfect for it. So I sent in my resume, and the rest is history.
Moving to the Washington DC area was quite a shock. The suburb we moved to didn’t have a chapter, so we started one. I’m so glad we did, because I think it’s really important for people in national office to stay in touch with local groups. I think advocating for people with hearing loss is important because hearing loss is so misunderstood. Most people think it’s a minor inconvenience and have no idea of the impact it has on so many lives.
I graduated from Washington University here in St. Louis with a degree in Electrical Engineering. My first job was with McDonald Douglas. I was the only deaf employee at our location, so I was pretty isolated. And I got involved with some deaf organizations in the evening.
At that time Western Union was getting rid of their old TTYs. So we took them and fixed them and gave them to deaf people for communication. Then we moved to Rochester and I did the same thing there. That was in the mid-60s.
At that time the National Association of the Deaf (NAD) was the only organization for deaf people. One year I was involved with the NAD national conference, and soon I was on their Board. And my advocacy efforts grew from there.
I learned a lot of skills at the School for the Deaf and the Jr. NAD. And I was involved in the drama club. Later I went to Gallaudet, where I was involved in the student government and really got interested in public service.
I joined NAD and became their Business Manager. We did a lot of advocacy and accomplished a lot of good things. Then I became the Executive Director of the Missouri Commission for the Deaf. I was from North Carolina, and not very well known. So I had to lead by consensus.
Later I moved back to North Carolina and got a job working with deaf and hard of hearing people. I worked with Mimi Clifford there. Now I’m really trying to practice an inclusive philosophy in everything we do at TDI. . We work with all the national hearing loss organizations, and we have a legal team that donates about 10,000 hours a year to advocacy for everyone in the hearing loss community.
I got involved with ALDA because it was there. I was just lucky to bump into it. And I think I got so involved in advocacy because it was an extension of my needs.