Disability Pride Month

Chosen by self-advocates, the theme of this year’s Disability Pride Month is “We Belong Here, and We’re Here to Stay.” People with disabilities are part of our communities and deserve to be accepted and included. Approximately one in four people in the United States, about 70 million, have some type of disability. Disabilities are a natural part of the human condition. July is the month we recognize the diversity that exists and celebrate the 35th anniversary of the Americans with Disabilities Act.

History of Disabilities

Our history with disabilities has not always been positive. In the 1700s,1800s, and early 1900s, people with intellectual disabilities were often housed in asylums along with people with mental illnesses. These facilities were usually overcrowded, unsanitary, and lacked oversight. Perhaps one of the more infamous places was Willowbrook, an institution built for 4,000 residents but which housed 6,200. It was overcrowded, understaffed, and underfunded. Abuse and neglect were common in what was essentially a warehouse for people with disabilities and mental illnesses. In an exposé, Geraldo Rivera revealed the Willowbrook atrocities to a shocked public. Lawsuits, led by parents’ groups, eventually led to the closure of the home in 1972.

Forced sterilizations for women with intellectual disabilities were also common. In the early to mid-1900s, there was widespread belief that women with intellectual disabilities should be forced to undergo sterilization. When I hear the term eugenics, I think of Nazi Germany, but this was the attitude and law in the United States. In the  1927 landmark case of Buck vs. Bell, forced sterilization was affirmed with the comment by Chief Justice Oliver Wendell Holmes who upheld the involuntary sterilization of a woman deemed “feeble-minded” with the chilling justification that “Three generations of imbeciles are enough.” The ruling has never been overturned, and forced sterilization is still legal in thirty states.

Americans with Disabilities Act

A twenty-five-day sit-in orchestrated by 150 disability rights activists demanded that then-President Jimmy Carter sign 504 of the Rehabilitation Act of 1973. This paved the way to the passage of the Americans with Disabilities Act on July 26, 1990.  The ADA provides civil rights protections for people with disabilities.  It also prohibits employers from discriminating against individuals with disabilities and mandates that public places must be accessible. The passage of the ADA has significantly impacted people by providing more access to public places, thereby enabling them to participate fully in the community.

Individuals with Disabilities Education Act

Also passing in 1990 was the Individuals with Disabilities Education Act. The IDEA ensures that all students with disabilities receive a free public education tailored to their individual needs. What was going on before that? We won’t go too far back to atrocities in the early 1900s, but back in 1970, only about one out of five children with disabilities were accommodated in the public school system. Up until that time, there were laws that specifically excluded children who were deaf, blind, mentally retarded (the term used at the time) or emotionally disturbed from public education.

The Education for All Handicapped Children Act was passed in 1975 and required public schools to evaluate all students with disabilities, together with the parents, and formulate a plan that would most closely resemble the education of a non-disabled student. The IDEA replaced the Education for All Handicapped Children Act and focused on the individual rather than the disability, promoted research and technology development, and also helped students transition to programs post-high school graduation.  IDEA also allowed children to be educated in their neighborhood schools rather than separate schools.

Current and Future

Due to the recent bill’s passage, which calls for drastic cuts to Medicaid, there is concern in the community of people with disabilities and their families. The Arc is the largest national community-based organization advocating for and with people with intellectual and developmental disabilities (IDD) and serving them and their families. According to The Arc, Medicaid is the primary health insurance for people with disabilities. Beyond health insurance, Medicaid provides supports that allow people with disabilities to live in the community. These supports enable people with disabilities to remain in their homes with family and friends, rather than in more expensive congregate housing. State and Federal Medicaid provide 75% of funding for services for people with intellectual and developmental disabilities. At this time, there is uncertainty about which services will be cut and which will be spared, but this is cause for concern given the expected massive reductions.

Special education is also threatened. The significant downsizing of the Department of Education under the current administration could mean compromising the rights of students with disabilities. Although IDEA is still in place, the massive budget cuts may eventually impact the education offered to students with disabilities. Advocates are concerned that as funding shifts to states, there will be less stringent protections for students with disabilities.

Things are changing rapidly and not always in a positive manner.  As the sister and guardian of a brother with disabilities, I have spent more than a few sleepless hours worrying about his future. I’m hoping for the best but preparing for the worst. However, history shows that people with disabilities are strong self-advocates and are even more effective when joined by family and community. It’s a powerful group that can change the world. Self-advocates chose the motto for this year’s Disability Pride Month, and it seems especially appropriate. “We belong here, and we’re here to stay!”

We celebrate the anniversary of the ADA, but we must continue advocating for my brother and everyone with disabilities!