Despite advances, progress on disabilities still lagging
Thirty years ago today, President George H. W. Bush signed the Americans with Disabilities Act.
It was one of the most significant breakthroughs in history for people with disabilities since President Kennedy publicly admitted that his sister was born with intellectual disabilities, creating the President’s Committee for People with Intellectual Disabilities. Issues related to disabilities had never been embraced. They were hidden. When President Franklin Roosevelt was in office, many among the general public suspected he used a wheelchair, but it was hidden most of the time from their view. Certainly, then and now, all of us extol celebrities with disabilities, such as Steven Hawking or Helen Keller’s. They were, however, intellectually gifted.
During most of the 20th century many Americans with intellectual and developmental disabilities — some 200,000 — were relegated to life in large institutions. There are thousands of stories of abuse, mandatory sterilization, segregation and the routine use of cattle prods, sometimes referred to as aversion therapy.
Journalists, such as Geraldo Rivera, exposed unspeakable neglect and abuse in New York’s Willowbrook, a facility that warehoused more than 6,000 people. Lawsuits paid for through rock concerts hosted by John Lennon and Yoko Ono, Stevie Wonder and Roberta Flack resulted in a tumultuous sea change resulting in institutional closures. States such as New Mexico, Minnesota and Michigan and many New England states to this date do not have institutions.
Still, there remains well over 50,000 people with disabilities remaining in these institutions, which have become a catalyst for pandemic exposure and death.
President Reagan was one of the first to push for employment and for radically altering Medicaid funding at large institutions for people with disabilities to live and work in the community. His administration inspired President Bush to take his vision to the next level. It was truly a difficult fight.
After the law was signed, we were hopeful that it would create a fundamental maelstrom for employment opportunities and better housing options for people with disabilities. We had hoped that it would end large segregated institutions. There was an impact. In 1999 the U.S. Supreme Court ruled in the Olmstead v. L.C. case to stop segregation against people with disabilities in large institutions. The court ruled that “segregation of persons with disabilities as a form of discrimination.” It affirmed the civil rights of people with disabilities — at least on paper. We still have a long way to go until we even see the finish line.
Now, four presidents later, thousands of people with disabilities still live in large institutions in Pennsylvania, New Jersey, New York, Mississippi, California and Texas. Employers have become more aware of the ADA. Some have begun to understand reasonable accommodation; they have more of an open mind, but it remains more of an exception to the rule when a person is hired in the private sector. Many people with disabilities are exploited to do assembly tasks in workshops and earn less than 20 cents per hour. Now, with varying degrees of lockdowns, it is becoming even more complex. Some are mandated to stay home and receive “video programming’ while first-line staff take care of them in small group homes.
COVID-19 has dramatically increased the value of both the first-line staff and in many cases people with disabilities. Some are essential employees in grocery stores and other establishments. Statistically, however, only four out of 10 people with disabilities have a job.
Thirty years ago, the worldwide web was inaugurated. The applicability and ramifications of it remain astounding. No one came close to gauging the long-term effect of this. Frankly, I had much greater hopes for the impact of the Americans with Disabilities Act. I figured by now the institutions warehousing people with disabilities would have been closed much faster. It seems even worse to consider that the spread of COVID-19 infections within institutions is greater than those in community-based homes. I also thought that many more people would have jobs and be far better included in society.
I still remain optimistic. We are in far better place than where we were 30 years ago. Many presidents have made an impact to emancipate people with disabilities and have visions for them to be employed.
Hopefully, within this next decade more Americans with disabilities will live and work in neighborhoods, have relationships and pursue happiness as the rest of us do.