Fall 2002 Newsletter
There is More Than One Way
Meet Jenny McKenzie, the president of the Virginia Association of the DeafBlind. She will share: 1)What is it like to live in a fuzzy world, where only things 18 inches away are clear? 2)How to function when your hands have such limited mobility that even the simplest everyday tasks of normal living take 10 times longer than "other" people? 3)Suggestions to help with life.
My disability began at age 3 ½ when I contracted encephalitis. As a result of the high fever, I went into a coma. When I came out of the coma, my hands and arms were twisted. The doctors told my parents that my vision would probably deteriorate to a certain point, then stay at that level. My first grade teacher advised my parents I had a hearing loss, but it wasn't enough to prevent me from classroom participation. When I was between 9 and 13, my hearing and vision nose-dived. I could no longer read the blackboard, even with glasses, sitting in the front row. I no longer understood classroom discussion, even with a hearing aid. Unless the teacher spoke slowly and right to me, I didn't understand. I attended public schools for children with disabilities, so I received occupational and physical therapy. While I knew I had difficulty using my hands and hearing things, my parents, for whatever reason, never told me I was legally blind, too.
In high school, even though I sat in the front row, I couldn't read the board or understand more than a word or two of the teacher's presentation. Teachers assigned a student to be my note taker for a class. Classroom interpreters were unheard of. Back then, even though I couldn't read the blackboard, I could read newspapers, and other small print if the page was only a few inches away.
After graduating from Gallaudet University, where I was one of the first multi-handicapped deaf, I started working for a little political action company in Washington, DC. Although the pay was low, and the benefits nonexistent, I stayed there for 12 years. My boss convinced me that she was the only person who would hire a person "like me." This seemed true when my efforts to find better employment were consistently unsuccessful. My boss ran into financial problems and I was laid off. Three years, and thousands of job applications later, I found a job with Fairfax Opportunity Unlimited (FOU). Their policy was "the faster you work, the more you earn". While this was great for most people, it was unfair for me. I stayed for 8 years, but never earned more than the entry level wage. Due to technology changes, FOU lost their contract with the agency we worked with. My counselor found me a job at the VA Industry for the Blind (VIB). VIB set up a contract for me with GSA in DC. This job had interesting work, good pay and benefits. They didn't renew my contract after the first year because they felt I was too slow. Since then I have not been able to secure suitable employment.
Traveling around, doing errands can be quite a challenge. If I take a bus, I can't see to read the number or destination displayed at the top or on the side. If I ask the driver, I may not be able to lip read him/her because of the distance between the bus door and the driver's seat. I'm a fair lipreader, but there are many people that I just can not lipread. Often the same problem occurs when I take a cab. When I ask the driver how much, he/she points to the meter, while talking with their face toward the meter. When I interrupt and say, "I can't see" they turn toward me, and say it again. There's about a 90% chance that I'm not going to understand. So what do I do? I just hand them a $20. Most of the time it doesn't cost that much, but I'd rather get change back then have the driver getting frustrated because I don't understand.
Have you ever looked at frozen food packaging? Have you noticed that more and more companies are putting the cooking instructions on the side panel instead of on the back where it would be easier to read? One day, a few years ago, I bought a Stouffer's product, only to find advertising on the back. After carefully scrutinizing the package on both sides and all four panels, with a magnifying glass and electronic magnifier, I located the heating instructions on a side panel. Stouffer's has red packaging with tiny, about 6 point or so, white type on a red background. That isn't enough contrast for people with normal vision to read comfortably, let alone people with vision loss. I called their customer service number. They said the solution would probably be to use Braille on the cartons, but since that was too expensive, there was nothing they could do. I tried explaining that not all visually impaired people read Braille, and suggested putting the cooking instructions on the back, in large, easy to read type. That was about three years ago, and they seem to have made no effort to change their format. While I know it doesn't make an iota of difference to Stouffer's, I am boycotting their products until they start printing readable instructions.
Communication, as I said earlier, is never easy. I don't fit in the deaf world because the limited mobility in my hands makes it impossible to sign. The form of encephalitis I had affected my mouth and tongue, making me extremely difficult for deaf to lip-read. On the other hand, I understand signs, and need an interpreter for meetings, church, and sometimes even casual conversations. I speak fairly well, and many hearing people have no problem understanding me.
Since I am legally, not totally, blind, I read large print, not Braille. Many people are also uncomfortable by how close (2 feet, max) I need to be to the speaker or interpreter. Standing too close is seen as being aggressive, and people instinctively step back. They need to stay put and let me try to see what they are saying.
So, yes, there are times when I feel very isolated. It would be very easy to travel on Self Pity Street, and admittedly, occasionally I do. But pretty soon I make a sharp right onto Life's Adventures Lane. I believe in helping others and promoting awareness of those with disabilities. Therefore, I serve on the Statewide Independent Living Council (SILC), the VA Relay Advisory Council, the Medicaid Buy-In Committee, and the Post Secondary Education Council. I am also on two local councils, the president of the VA Association of the DeafBlind, and teach an adult Sunday school class.
No one ever said life would be easy, but God has a purpose and plan for each one of us. When we reach out to Him in faith, He will show us where to go and how to be of service to others. Yes, we with severe disabilities may need more help than those who don't, but we can still enrich the world by sharing our time and talents.
