President's Address 2010. Are We Still Moving Forward: At the Intersection

Abstract

I think that, as we determine the building blocks to the future, we need to look at what we have decided in the past. The funny thing about intersections is that we often see them not as stopping points or places to explore new options but as places to plow through to get to the other side. There are numerous intersections or decision points that we must now cross. I talk here about several of these that I think are fundamental for the future of services for people who have intellectual and developmental disabilities. First, I want to share my current beliefs and how I reached them. My older sister, Marcia, had Down Syndrome. She was the oldest of a large family, and she enjoyed being at the head of so many sisters and brothers. She was not only part of our family, but she was very involved in our neighborhood growing up. Education was very important in our family, and Marcia started school at the age of 5. In those days, it was thought that people who had Down Syndrome could not learn to read. Marcia loved sports. So, she had one of us younger siblings read her the sports pages in the newspaper every day. When she was a teenager, she had my brother, Robert do this reading. No one had told him that she could not learn to read. As a result, when he got tired of reading the sports pages out loud every day, he taught her to read. Marcia was incredibly likeable. As my husband once said, Marcia always made you feel that you were special. I remember once when my brother, Michel, received a call from the bank manager of her bank. Marcia was there with a check she had gotten from Michel because she said she needed money to pay her rent and did not have it. He wrote the check to the landlord. Marcia had convinced the bank manager that it would be better to let her have it in cash. The bank manager was asking—actually demanding—Michel’s permission to give it to Marcia in cash. I do not know about you, but my bank would never make that call for me. Marcia was, without a doubt, one of the most amazing people I ever knew at convincing other people to do what she wanted. Marcia assigned me my career. She explained that things needed to be fixed so that people could live the way they wanted and be part of their communities. And she made it clear that she would be doing just that, working and being with friends and neighbors and others in her community. She was not planning to become a self-advocate. It was my job as her younger sister to create services and teach professionals so that the system would allow this to happen for everyone. My beliefs also are affected by the work I have done, work that is the result of my assignment from Marcia. Primarily, I have been involved in designing and implementing service coordination services, family and individual support services, services that people now call fiscal intermediary services, and in systems advocacy. I teach social work classes at the University of Maryland School of Social Work. I have a number of very definite beliefs. They include the following. People are much more capable than we think they are. The vast majority of families are healthy in how they function. All families need to be approached as if this is true until they demonstrate otherwise. We need to realize that we often see families at their most difficult points, when they are seeking assistance or when they are upset about how something is happening, and that they, therefore, will likely not look as healthy as they actually are. Our role as professionals is about supporting, not being in charge. So we have a responsibility to listen well and not make people ever feel that we know better than them what they should be doing. We have another and seemingly contradictory responsibility. It is our role in teaching and inspiring. That responsibility is two-fold. The first INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 48, NUMBER 6: 470–477 | DECEMBER 2010