The Disability Rights Fund’s Kerry Thompson contributes a piece for the Usher Syndrome Coalition blog on the importance of self-advocacy
September 30, 2015
By Kerry Thompson for the Usher Snydrome Coalition Blog
Kerry was born and raised in southern Louisiana where she was diagnosed as profoundly deaf at two years of age and at ten years, diagnosed with Retinitis Pigmentosa. After receiving her Bachelor of Science and Bachelor of Arts from Louisiana State University, as well as studying abroad in London, Kerry moved to Boston in the hopes of better opportunities for a person like herself living with Deafblindness. From there, Kerry began working for Brigham and Women’s Hospital which led to her developing a technology tool, Text4Deaf, to improve communications between healthcare providers and patients or parents who were Deaf or Hard of Hearing. Her desire to improve disability rights led to a master’s degree from Harvard University and transitioned her focus from disability rights to human rights for people with disabilities as part of her work with Disability Rights Fund. Kerry contributed to a book on violence against children with disabilities, and has served as a keynote speaker on issues such as violence, education, poverty, arts, and healthcare. She serves on the Board of Directors for Deaf Inc., as a liaison for the Deafblind Community Access Network Advisory Council and the Massachusetts Statewide Advisory Council. In 2014, she was awarded the prestigious Marshall Memorial Fellowship from the German Marshall Fund for the United States. Kerry also founded Silent Rhythms; a dance company that teaches dance to people with disabilities and herself is a Latin ballroom dancer who has performed across the US.
The decision to leave Louisiana was one of the hardest decisions I had ever made. I come from a loving, supportive family who always accepted me for who I am. My parents were my strongest advocates and fought hard to ensure that I received a good education. They learned sign language, helped me with speech therapy, and encouraged me to be friends with both Deaf and hearing children. How could I leave such a supportive network? My parents may have been my strongest advocates but they also taught me one of the most important life lesson – how to spread my wings.
It is understandable that any parent of a child with Usher syndrome feels the need to protect, to make the world an easier place to live, and to champion the needs of their child. Yet one of the most important lessons a parent can teach their child, especially a child with challenges, is how to spread their wings. The earliest lesson I recall from my parents on being independent was teaching me to cross the street. They first held my hand as we crossed the crosswalk together, then the second crossing they taught me how to pay attention to my surroundings before we crossed, finally they let go of my hand and made me cross on my own. Naturally, they were just one step behind me, biting their fingernails, while ready to scoop me out of harm’s way.
This little lesson would pave the way for me to learn to explore, broaden my horizons, and discover. As I would get older, “crossing the street” would mean crossing the city lines to go to college, crossing the Mexican border to volunteer, crossing several continents for work, crossing the Atlantic to study and pursue a fellowship. Because my parents taught me how to “cross the street,” I was able to view a world that most people never get a chance to see.
Each day the world looks a little different as my eyesight transitions due to the progressive nature of Retinitis Pigmentosa. I used to think that I had to hurry up and live life before going into social isolation. But I never truly understood what social isolation meant until I began working for Disability Rights Fund to advance human rights for people with disabilities in the developing world. Imagine a world where parents believe you are marked by the devil because of a disability, society threatens to kill you, you have never had the chance to play or go to school. Imagine a disability movement that excludes people who are Deafblind. That certainly put things into perspective for me. Whenever I would attend a disability rights conference, I was always the only Deafblind individual where thousands of people with disabilities were in attendance. When I spoke up, I was told that people who are Deafblind are incapable of speaking for themselves.
So parents of children with Usher syndrome, I beg you to teach your child that they not only have the right to be part of society but that they have a right to speak up. To youth with Usher, my advice to you is to enjoy life, never let your fear of the future hold you back and recognize the power you have to implement the change you want. To adults living with Usher, no one knows more than me the day-to-day challenges we face, but do not let these challenges push you into isolation – remind society that we exist, be vocal about your challenges, but most importantly be advocates for change. We all need to come together as advocates – not simply to advocate for awareness but to advocate for the removal of societal barriers, advocate for governmental funding for resources and research on Usher syndrome. When we come together, we are not only seeking to change one person’s life but an entire community for the better.