I worry sometimes about the shape of disability services to come. I’m heartened by stories, uplifting ones about individuals who have succeeded in their journey. Their drive and skills were supported by family and good staff along the way.
But there are those other stories that should worry us – one I read just recently about artist Teresa Pocock of Vancouver. A middle-aged woman with Down syndrome, she was forced to enter a nursing home against her wishes five years ago in Ontario. This happened in Canada, a country known for its progressive disability policies. Now back in the community, she is sharing her art and an apology from the Ontario government.
Personal advocacy and our systemic advocacy at The Arc go hand in hand. Human and civil rights are only realized in day to day living. It’s one thing to pass a law or have funding authorized, but it’s another for my grand-nephew, your sister, or your son to experience their rights or public benefits.
Yesterday, a colleague noted that recent family feedback included an emphasis on a need for:
- Staff with the capabilities to help our family members connect to their communities meaningfully
- More employment opportunities
- Longer work schedules so we can continue at our jobs
These are reasonable requests – but only by working together can they be realized. The necessary steps in personal advocacy include:
- Learn about the future, whether you or your family member is 9 or 23. What are the options?
- Connect with local affiliates and agencies to get that information, take advantage of our webinars, and see our fact sheets on the web
- Build a tentative timeline and supports plan that helps you or your loved one be prepared for the future, to have the same opportunities as others
- Get specialized help if needed, and use the new connections to get the right referrals
- Remember there is strength in numbers – join us in the advocacy effort; you will learn for your own goals, but you’ll be helping others too.
How we trend? That’s up to all of us.
Leo V. Sarkissian