Donna Bouclier

In the 70’s, I attended school with Mary who had a disability, although no one identified it back then. I recall being kind to her, not like the others, yet I never challenged those mean kids. I also never got to know Mary. Years later, in the 80’s, our paths crossed. She became a participant in a program I was directing for adults with developmental and intellectual disabilities. Her journey inspired me throughout the years. I wondered if life had been kind to her.

I met some of the most inspiring parents too. They were grappling stigma, prejudices and isolation while remaining pugnacious in raising their child to become the best person he/she could be. They refused to institutionalize their loved one no matter how challenging the course. They also knew that unless we changed our attitudes toward those with disabilities, their children would end up like Mary—with no friends and stigmatized.

I believe those experiences led me on a professional journey working in the disability field to help prepare me for the arrival of my daughter Alina, born in 1992 with Aicardi Syndrome. My values were rock solid, but our systems were not inclusive, participatory and all that welcoming. Alina’s access to everyday life and her rights would not be violated or compromised. She would be seen as a person first; one who is a competent, contributing member of her world. My resolve carried over to all people who were disenfranchised because of disabilities. So, when DRI offered me the opportunity to train families and self advocates from across the world and meet with their governmental officials, I readily agreed.

Their mission is my heart, their work is my passion, and their perseverance is my loyalty to them.

During our one trip to an institution in Ukraine I was ill prepared to witness the waste of human potential, the indignities they suffered and the consistent viewpoint that their life was not worth the investment. People were sentenced to die because of their severe disabilities, saturated with urine and feces confirmed to their cribs, and starving. They were imprisoned because of disabilities. I envisioned my daughter and what her life could have been like if she had been born in a different time and place and cried —- for all those who aren’t loved and given a chance to live a meaningful life. Until our world view of disability changes to that of giving respect to people with disabilities, they will not been seen as human beings whose life has meaning. Our work will never be done. As long as one institution remains open, all of our children are at risk. (See human potential: www.AlinaWorthy.com)