A Privileged Conversation
It was day two at the Bioethics conference and the small breakout group’s conversation was swirling around me as people discussed the plight of the disabled when one word catches my attention: privilege. The debate begins concerning who is the voice of, the leaders of, and the true representatives of the disabled. Those who are considered the voice of or leaders of those who are disabled were accused of being privileged in this conversation. They didn’t represent the disabled because they haven’t lived the lives of those who aren’t able to access the finest care and go to the best schools. Then I begin to speak.
When I was born, the visible disabilities immediately defined who I am and in some ways who my mom was going to become. My mother, divorced with two children, knew she had to take steps to ensure my health care needs would be met. She sought answers regarding my care and began the process of taking me to doctors for consultations and surgeries. Through all of this she found doctors who were nationally recognized and were able to meet my healthcare needs. She worked full time as a teacher and took on several part time jobs to ensure I could have the best healthcare she could afford. I was "privileged" because I had someone who sacrificed their comfort for my well- being. I was "privileged" because I had doctors, who included me in my treatment plans; who listened to me. This isn’t the type of privilege which would discount my ability to understand the needs of those who are disabled, but it could make me blind to the struggle of those who aren’t able to access this type of care.
My voice is not loud, is not heard by many, and may never influence change, but my determination to advocate for those who cannot and do not know where to start is strong. Working with those who struggle, those who are unaware of the care which exists in their community and providing comfort to those who find out their child will be disabled is a privilege. It doesn’t come with money, tenure or talk shows but it does come with smiles, hugs and heartfelt thanks. Privilege has many faces and while I believe those who have never experienced hardship should stop, step out of their comfort zone and live the life of those who are less fortunate before they legislate, write, and espouse what should and should not be in the world of disability, I also understand this is my "privileged" view.