This Sunday marks the 30th anniversary of the day the Americans with Disabilities Act was signed into law, making it illegal to discriminate against people living with disabilities in regard to employment and access to government services. The Gazette spoke with Michael Ashley Stein, J.D. ’88, co-founder and executive director of the Harvard Law School Project on Disability, to learn more about the significance of the ADA and what it has meant for the people it protects over the past 30 years. Stein also addressed what Harvard has done since then to expand accessibility on its campuses, and provided perspective on what challenges and opportunities lie ahead.
Michael Ashley Stein
GAZETTE: Could you begin by setting the context for when the ADA first came out in 1990?
STEIN: Prior to the ADA, Americans with disabilities had been excluded from society and discriminated against by being locked away in institutions and asylums, being subjected to eugenics-driven forced sterilization, prevented from attending public school, and generally barred from social participation by lack of accessibility and stigma. The Civil Rights Movement of the 1950s and 1960s did not embrace their brothers and sisters with disabilities, as evidenced by disability not even being considered a valid category for consideration in the 1964 Civil Rights Act.
Nevertheless, the Disability Rights Movement, learning from the experiences of other movements, began asserting itself from the late 1960s. Prominently, the Independent Living Movement arose in Berkeley, Calif., with young disabled advocates claiming the right to live as equals in their own communities. These efforts were bolstered by the deinstitutionalization movement led by self-advocates with intellectual disabilities being allowed to move out of places like the Willowbrook State School where they had been living in conditions of torture, people with psychosocial disabilities seeking to live in community settings rather than in psychiatric facilities with similar track records, and disabled Vietnam War veterans who returned to the United States and found that they could no longer ride “public” transportation. Throughout this time, parents and other family members and supporters of people with disabilities advocated for and with the community.
Amid this context, two pathbreaking disability-related laws were passed in the 1970s that laid the groundwork for the ADA. The 1975 Education for All Handicapped Children Act [or EHA, which later becomes the Individuals with Disabilities Education Act], required all public schools accepting federal funds to provide equal access to education for children with disabilities. Prior to 1975, most children with disabilities were kept at home, at best sent to a special school, and at worst condemned to an institution. Many had no concept of what going to school even meant and were rendered invisible to their peers. With the EHA, children with and without disabilities began to see this reality change, albeit slowly.
A couple of years earlier, Congress passed the Rehabilitation Act of 1973, which prohibited discrimination against those living with disabilities who are employed by the federal government, participating in programs conducted by federal agencies, or receiving federal financial assistance. Neither of these laws, it’s important to note, provided protections with regard to private industry [unless they received federal funds], or within those organizations receiving state-based funds.
So, leading up to 1990, there was a lot happening to bring the disability community, and the lack of rights afforded to them, front and center.
GAZETTE: The movement toward the ADA, then, really gathered steam during the Reagan administration.
STEIN: Within [President Ronald] Reagan’s circle were several prominent individuals who were disability-rights advocates or supporters, who either had their own disabilities or firsthand experience of disability. There was Reagan’s attorney general at the end of his second term, Richard Thornburgh, who had been the governor of Pennsylvania during the deinstitutionalization movement in his state, and his wife, Ginny Thornburgh, who devoted much of her career to supporting the work of faith-based organizations on disability inclusion. The Thornburghs had a daughter who was severely disabled due to an auto accident. [Post-ADA, they came to Harvard: Ginny become the first University-wide ADA coordinator, and Dick lectured at the Kennedy School of Government.]
There was Justin Dart, a wheelchair-using disability-rights advocate and adviser to the Reagan administration who later became known as “the Godfather of the ADA.” And there was Evan Kemp, who was a quadriplegic and chair of the Equal Employment Opportunity Commission, whose parents (to his everlasting chagrin) created the muscular dystrophy telethon alongside Jerry Lewis. Even Vice President [George H.W.] Bush, who would later sign the ADA as president, had a personal connection to disability rights — he had a surgeon uncle who became a quadriplegic later in life, and a son with colitis. And so, there was a push toward the end of the Reagan administration to get a national disability law in place that would cover things not covered by the Rehabilitation Act and other statutes.
GAZETTE: Was Congress receptive to the idea?
STEIN: Ultimately, there was little resistance to the bill once it went before Congress. Disability has always been considered an “across the aisle” issue. Plus, there was a perfect storm politically at the time that made it easy to get the ADA passed. The Republicans wanted to get people off of welfare, and the Democrats wanted to enable people to live independently. And so, it was signed into law by President Bush on July 26, 1990.
GAZETTE: What has the ADA meant to people living with disabilities over the past 30 years?
STEIN: It’s not perfect legislation by any means, has been subject to challenges in the courts periodically over the past three decades, and the level of inclusivity afforded by the law has changed, sometimes for better and sometimes for worse, with those decisions. It hasn’t solved the ongoing problem of extremely high unemployment among people with disabilities — two-thirds of all Americans with a disability don’t work — and that’s a huge problem.
But, overall, thanks to the ADA, those of us with disabilities can say that we live in a more inclusive society. Prior to the ADA, if you were a person with a disability in this country, you didn’t have the expectation of being able to use public transportation or having your doctor provide sign language interpretation. You didn’t have the expectation of being able to get into a restaurant, let alone with your guide dog, or that your local library was going to offer things in Braille or large print. You didn’t have the expectation that your employer or possible employer would at least have to think about how to accommodate your psychosocial or intellectual disability. And it’s done an incredible job of making most large urban areas functionally accessible.
To me, the gold star on the ADA, and this is continually shown to be the case through periodic studies from the National Council on Disability, is that the biggest impact of the legislation is that Americans with and without disabilities actually expect the disabled to be part of the world. That’s turned everything upside down, for the better.
GAZETTE: What are some of the major struggles the disability community faces in 2020?
STEIN: In addition to the previously mentioned sky-high rates of unemployment, the groups of self-advocates with intellectual disabilities that we work with across the U.S. at the Harvard Law School Project on Disability are extremely concerned about receiving adequate health care and other life-essential services. This is deeply troubling, and so much more so in the middle of a pandemic. The death rates from COVID-19 among people with disabilities living in group homes and other congregated facilities are at least three times that of the general population [while nursing home deaths among the elderly, many of whom have disabilities, account for about a third of all deaths], and the impact on their receiving adequate support services has been horrifying. And yet rather than seeking to protect the most vulnerable, the Trump administration is pushing to eliminate the Affordable Care Act, including its protection of pre-existing conditions. The administration is also seeking to revise Medicaid-based priorities in a manner that would, in effect, force people with disabilities back into institutions like nursing homes and psychiatric institutions in order to receive life-essential services. And strikingly, Mr. Trump’s proclamation that COVID-19 was not a concern because it only affects those who don’t have good health or who are old, says loud and clear that those folks are expendable. So this is a very threatening and discomforting time for the disability community, and the groups we serve are justifiably worried. Since the beginning of the pandemic we’ve been inundated with requests for assistance from them and others within the disability rights community.
GAZETTE: You’ve been at Harvard since before the ADA was signed; you began your studies here at the Law School in 1985. How have things changed here, with regard to accessibility, over those 35 years?
STEIN: Over time, Harvard gets things right. The University certainly is committed to complying with disability laws regarding accessibility, and over 35 years the physical and virtual landscapes have dramatically transformed. But taking the next step — being welcoming of students, staff, faculty, and visitors with disabilities — remains a work in progress. Admittedly, it may not be easy for an institution as large and decentralized as Harvard to get everyone on the same page, and so we have 12 Schools that very much differ on how progressive they are in terms of fostering a disability-inclusive culture. Radcliffe, for example, gets it.
In 2017, the Provost’s Office first convened a University-wide Accessibility Committee, of which I am a part, to try to get everyone coordinated as to compliance, and this has been a worthy endeavor. Some of the projects we’re working on include providing students with standardized information about disability services across Schools, especially as it pertains to facilitating accommodations for students who are cross-registered in different programs, improving way-finding resources for accessible physical navigation of campus and campus resources, as well as supporting the accessibility of Harvard’s online presence.
I’ll say that in the 16 years that I’ve been back and teaching at Harvard Law School, we’ve seen a positive culture change related to disability. At the beginning, the only time disability was mentioned seemed to be the activities that we sponsored at the Harvard Law School Project on Disability as part of our pro bono disability work. These ranged from formal talks by academic experts and leaders to workshops for self-advocates with intellectual disabilities to advising governments around the world on disability laws, all of which included our terrific students. We continue those activities and invite participation from the University and the community. Now, however, there are a bunch of clinics on disability-related themes; the dean of students sponsors events during Mental Health Month; and there’s a strong student-based disability rights affinity group with all kinds of activities that even I don’t know about — and I think that’s especially marvelous because it means that HLS and its students have taken ownership.
Other examples across the University include affinity groups at the Kennedy School of Government, the Graduate School of Education, the Faculty of Arts and Sciences, and most recently, the Medical School. That’s all progress, and it’s been a great thrill to support and participate in this forward momentum.
GAZETTE: What more can Harvard do, moving forward?
STEIN: There are some real opportunities for Harvard to lead in fostering a more widespread culture of inclusion. Frankly, when Harvard does something, it gets noticed. That’s one of the blessings and responsibilities of being a world-class institution.
I’d love to see Harvard, broadly, use its convening power, not only to highlight the many things that people with disabilities on campus are successfully accomplishing, but also to be more inclusive across its programming and set a model for all of higher education. If any university can lead, Harvard can. So let’s do something visible and fairly easy, like having one of the speakers at graduation be a prominent person with a disability. Or better yet, let’s be bold. There has been talk of developing a disability studies concentration, which does not require creating a minor or a department but would highlight the importance of disability as a valued part of human diversity, so let’s go ahead and make such a disability studies concentration a reality. There are some real opportunities here, and I’d love to see Harvard take the lead.
Harvard’s Office of University Disability Resources (UDR) will recognize the 30th anniversary of the Americans with Disabilities Act throughout the 2020-2021 academic year. UDR invites the participation of the Harvard community and welcomes input about the commemoration. Please refer to the University Disability Resources website for updates once the fall semester begins, and contact the office via email at firstname.lastname@example.org. The Harvard Law School Project on Disability also welcomes the participation of the Harvard community in its events, including recognition of this anniversary. Please visit the HPOD website once the fall semester begins, and at any time to join its email list.