reflections related to disability advocacy, family and (needed) cultural change
Wednesday, March 12, 2008
You: Allies and Advocacy
First there are the folks we have to thank. Since my daughter’s birth there have been so many people who have helped us live our life in the parallel universe of disability.
To start with we have a family and a family of friends who, without hesitation, have always been able to both celebrate with us and support us—there has never been a question about acceptance of my daughter or her disability from the folks we love. Not everyone is so lucky.
Our family also been blessed by the professionals in our life: physicians, therapists and teachers from various agencies and schools who have shared expertise and made traveling this road better. Professionals who are not able to see past their own vision of Down syndrome to value my daughter and her individual interests, strengths and needs have been rare for us.
And I already mentioned the xenagogues who light the path for us in so many ways.
There is greatness in our community as well:
Years ago our church hired a sign-language interpreter to be in religious ed with my daughter (without my asking) because that was her first language. And there were wonderful children there—one of whom signed up to be my daughter’s partner when they made their First Communion (she practiced EVERY week after the service with my daughter….)
We have families in our school who tell me regularly that they want my daughter to be in their child’s class—even now, in 7th grade. My daughter is a regular visitor at their home and at the events at their church.
We had a busdriver years ago who advocated to the district to teach my daughter more appropriate bus-behavior rather than kick her to the small bus when she went through a stint of throwing her shoes on the bus. Today her ability to ride the regular bus is considered a life skill.
There are cashiers who wait for her to hand them her money, and restaurant wait-staff that take her order from HER.
We encounter lots of folks who, though we live in a culture that is not often inclined to support people with disabilities, treat us and our daughter graciously and respectfully.
Our life is liberally seasoned with these folks—our gratitude will never be big enough.
I think (hope) that many folks have personal experiences like these to reflect on.
When we draw the circle larger than our own families and want to resolve the issues and barriers that confront and sometimes confound people with disabilities, I think we are rather slow at making alliances. Sometimes we divide ourselves by the particularities of our diagnoses and overlook the areas where we could connect with others. I think this is a huge mistake.
Someone pointed out recently that the ‘disability movement’ is a relatively new thing. While we recognize the variety of needs presented by differing diagnoses, people are uniting for common causes in new ways nowadays. The Disability Policy Seminar presented by The Arc, AAIDD, AUCD, United Cerebral Palsy and NACDD is an example of this. .
Beyond the boundaries of Developmental Disability are organizations that serve people with acquired disabilities related to health conditions or aging that we never meet. I hope the presence of the AARP and AAHSA at the Disability Policy Seminar in Washington last week is a signal that a new age of collaboration is upon us.
I think there are many ways that people with disabilities can work together to improve things. For example, much of what our constituents have learned about navigating the world with a disability could be very helpful for injured veterans and their families.
There is also lots of potential for alliances with people who do not have disabilities. For example, the playgroup (20 moms and their tykes in strollers) that meets at the church on your street would probably work with your neighborhood group and your disability rights group to petition your town for more vigilant sidewalk-shoveling and maintenance… And the relationships built working together will benefit everyone involved.
I think the possibility for creating new alliances to address common problems is largely untapped. I think it could be a new and creative addition to our advocacy tool box that has the advantage of building relationships that can be visited again as well as an effective approach to issues.
What sorts of alliances do you or your organization take part in? What issues or barriers do you now face that are also barriers for others? How could you connect with others around solutions?
And most importantly…does anyone know a good z word?????
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.