My interpretation of being Deaf-Blind . I liken it to the spectrum of purple. The two disabilities take turns, one being the hue and the other the shade. Sometimes I wish it was that simple as saying just the black and white make the final color but many variables play a role.
I was born with Congenital Rubella Syndrome, in other words German Measles. I was born before the vaccine was developed so when my mother was three months pregnant she knew that my life would be challenging as would hers. One of many bumps.
We did not discover my hearing loss until I was in first grade. Now, I’m a grown woman who’s had a career, marriages and a divorce. I’ve traveled to Europe three times, I am a landlord and working on more adventures.
As a young child, I did learn how books can be in large print, audio and Braille. In those days, accessibility was not easy, many of my books were very heavy and awkward. The machines we used like the fancy Kurzweil Machine was very big and bulky. Another, less expensive was the Vtech and only accessed at school or the library. As for my hearing loss, the only accessible things I had was a hearing aid and speech therapy.
During my teen years I realized the shade of deafness was becoming a deeper shade of purple. I could not hear conversations very well. I really needed two hearing aids. As I fought the battle of being conspicuous as being able to hear, I refused. I did not want to add one more thing to my plate. In retrospect, it would’ve helped me make friends more easily and have richer conversations with others. Luckily I did not hit many of those dark purple days because of the support I had from my family.
This brings me to a very important part of why I chose to write this blog. We cannot do things alone. I believe in learning at every age and stage. I love Hillary Clinton‘s comment about raising a child. I feel the same way about being a Deaf-Blind person. I need a village with me.
When I was younger I was introduced to the National Federation for the Blind. Truly there’s is a deep yearning in me to see people who are like me. When I go to these events it is very uplifting to hear people who are walking my road and they give me solutions for problems. I have been inspired and found true friendship.
One of the blessings of high school was my visually impaired teacher. Mr. Z for short, Introduced me to Services for the Blind and Visually Impaired and Low Vision Services. This governmental agency helps adults with Job training and support in seeking / maintaining a job. They also have senior support services. Helping with various things such as mobility, Braille and home making skills. Another support group is The American Council for the Blind . A benefit of retirement… I have the time to listen to ACB radio stations.
I call my days where I feel supported and don’t fight the deaf blindness . Accepting to use my accessibilities, the lavender days. I have found to make those easy days I need to be very organized. I am very grateful to the Five Counties because they sponsor a program called “Senior Companion” I have a helper that comes out once a week and we work anywhere from 1 to 4 hours on various projects such as reading mail, helping me run errands like grocery shopping and other shopping or going to medical appointments. This includes teaching me how to garden and assisting me with preparing a presentation for Five Counties. Many of the support devices I have such as hearing aids need maintenance. My helper does this too.
I am very proud to be who I am I have overcome many obstacles in my life. Vicariously it has made me a bit more organized and a more disciplined person. It has not stopped me from enjoying snow skiing, doing word puzzles and being a good aunt to my nieces and nephews. It has made me open to other people who are different.
Jessie is a valued volunteer with the Area Agency on Aging-Five County telephone reassurance program. She is dedicated to those she serves and passionate about assist older and disabled adults in her community. We are proud to have Jessie as part of our team and thankful to her for providing this wonderfully written insight.