How the World Has Changed for People with Disabilities:
As he approaches his June retirement, former Benchmark CEO and current Senior Business Adviser, Bill Swiss, reflects on how the world has changed for people with disabilities throughout his career — and what comes next.
When I arrived in Fort Wayne, Indiana in the spring of 1985, taking on the role of CEO of Benchmark Human Services, the world was a different place for people with disabilities. While the world is still far from perfect, I believe the country by any assessment has made progress.
Back at the time, the national special education mandate was still being digested by many districts and resistance at the local level was not uncommon. Among communities that were at least minimally complying, I remember thinking that it was remarkable how many special education classrooms were located in or near the basement boiler room. I’m sure today’s parents can list numerous complaints and frustrations but no parent thinks that the community does not have an obligation to educate their child.
Another gradual change has been in attitudes towards work. While sheltered workshops were not uncommon, the idea of people with disabilities, especially intellectual/developmental disabilities (IDD), performing productive work in the community, was still pretty radical. While progress has been made, I’m sure our job placement colleagues would tell you that our folks are the last hired and the first to be let go in bad times. As a personal aside, while in graduate school, I was privileged to attend a seminar led by a farsighted professor named Marc Gold. His radical concept was that people with IDD could do productive, wage-paying work. Taking their wages to shops would help them to be accepted as normal productive citizens. Pretty wild, huh?
Many of you know the story of people moving from state-run facilities to the community. In 1985 institutions were still the norm. Benchmark can rightly be proud in its history of transitioning hundreds of people into the community. In fact, Benchmark took part in Indiana’s first pilot program to move people directly into supported living. Today, as I’ve heard Doug Beebe (current Benchmark CEO) say on many occasions, the issue that remains is not moving people into, but having them become part of the community.
I think another milestone event was the national adoption of the Americans with Disabilities Act (ADA), but perhaps not for the reasons you think. Surely the ramps, parking spaces, Braille signage, etc. have been important improvements in the lives of many people. More importantly, I think, has been the fact that all of those are a daily reminder to the whole population that there are people among us who deserve respect and an opportunity in spite of any differences.
One disappointment I’ve had over my tenure has been the continued devaluation of whole groups of people with disabilities, especially IDD. I think clear evidence of that is words used to describe those people have, despite occasionally changing, continued to become derogatory, even crude. Yes, people-first language helps, but among the general populace, that is not common. And yes, it is good that we have effectively banned some of those terms. What I fear, though, is not that the words themselves are inherently despicable but rather some of society’s opinion of the people is.
So where does the next 35 years take us on this mission? I can tell you that some of the progress I have witnessed, in that time, was beyond my wildest dreams. I’ll leave it to the readers of this note to consider where we go next. In large part, it is in your hands.