Web site: http://www.disabilityrights.org

Having grown up in the South before desegregation, I was exposed to acts of discrimination for as long as I can remember. Even as a child, I could easily understand the depth of emotions of both parties -- it was unmistakable. I was taught the traditional Southern subtleties as a matter of course -- the reasons for "keeping him in his place" and what his place was, for example. Hard lessons for a child -- and in conflict with my Sunday lessons - but well-remembered and disclaimed long before adulthood. Before I left the hospital with my third daughter, the ob-gyn (who had delivered my other two daughters) came and sat on my bed to tell me she had "an anomaly". His advice was to get her to a doctor asap, because "where there's one anomaly, there may be another." When she was three weeks old, we were told her diagnosis: a rare, progressive nonfatal disease that only a few hundred people in the world had that would cause her muscles to turn to bone, rendering her immobile; she would become "encased in stone", as one doctor said. We realized our lives would be going in a different direction and that our daughter would not have the future we had envisioned. And I also knew that her life and all of ours would not be easy because she would be so very different from others; that she would not be accepted or treated like others; and that it would impact every part of my thinking. Soon it was clear to me that I could only improve her unique situation by working for the benefit of a larger group. That is why I sought out the disability community in Chicago. We have lived in Barrington (Cook County) since 1970 where we raised our 3 daughters (now living in Chicago, Oak Park, and Seattle). As one of the founders of the Council for Disability Rights, I became its Executive Director and have recently retired from that position. Some of major issues are accessibility, voting, special education, housing (visitability: I'll do a blog on it!), and bullying. My oldest daughter manages our website (http://www.disabilityrights.org).

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