Activism by Parents of Children with Disabilities and the 30th Anniversary of the ADA

This week in North Philly Notes, Allison Carey and Pamela Block, two of the coauthors of Allies and Obstacles, write about the accomplishments of parents in the disability rights movement as well as how disability activists are coping with COVID and Black Lives Matter. 

July 26th 2020 marks the 30th anniversary of the Americans with Disabilities Act (ADA). One of the nation’s most important and innovative civil rights acts, the ADA prohibits discrimination on the basis of disability across many spheres of public life, including in education, work, transportation, telecommunication, and the provision of public services. In doing so, it also mandates the provision of accessibility and accommodations to enable full participation in society by people with disabilities. Upon signing the ADA into law, President George H. W. Bush declared, “Let the shameful wall of exclusion finally come tumbling down.”

Allies and Obstacles_smThe anniversary of the ADA calls for reflection on where we were and where we are now. In our book, Allies and Obstacles: Disability Activism and Parents of Children with Disabilities, we detail the struggles of many disabled children and their families prior to the ADA, times when disabled people were systematically excluded from access to transportation, communication, education, and employment. We also document the ways that parent activists worked together with disability activists to bring the ADA into being. Thanks to these efforts, parents raising children in a post-ADA world experience a different landscape—one with far greater attention to access and that is more likely to recognize people with disabilities as full citizens worthy of inclusion.

Despite the incredible efforts of activists, however, we have a long way to go to actually achieve equity and inclusion. Parents are both allies and obstacles along this path. For example, in Olmstead v. L. C. (1999), the Supreme Court drew on the ADA in its finding that people with disabilities have a right to live and receive services in the community and to avoid unnecessary institutionalization. Many parents have fought for deinstitutionalization and to build community services, and they praised this decision. Other parents, though, fought to preserve institutions. Indeed, the language of Olmstead prohibiting “unnecessary” institutionalizations bows to the pressure placed by parents and professionals to leave intact the idea of necessary institutionalization as determined by professionals and parents/guardians with almost no avenues for disabled people to challenge their confinement. Data from 2011 indicated more than 89,000 people with intellectual and developmental disabilities and more than 178,000 people with psychiatric diagnoses still reside in large-scale, congregate settings (National Association of State Mental Health Directors, 2017; Scott, Lakin, and Larson, 2008).

New challenges also continue to arise, built on long-standing inequalities. The spread of the Coronavirus hit the disability community especially hard, exposing stark and persistent inequities. People with disabilities were infected with and died from COVID-19 at higher rates than the general population (Kennedy, Frieden, Dick-Mosher, & Curtis, 2020; Turk, Landes, Formica, & Goss 2020). In New York City, residents of group homes were more than five times more likely than the general population to develop COVID-19 and almost five times more likely to die from it (Hakim, 2020). Despite the high risk for disabled people, medical ethicists created guidelines for medical triage and technology access that restricted access to lifesaving measures to some categories of disabled people. Disability rights groups had to sue, drawing on the ADA, to defend themselves against medical discrimination. Throughout the pandemic, parents have fought for additional funding and clearer guidelines to ensure the delivery of support services in the community, including adequate testing and protective equipment to protect their loved ones and the support staff. But parents-led organizations are also among those that continue to run congregate care facilities and failed to protect people from the risks of congregate care including the rapid spread of disease.

Attention to police violence by Black Lives Matter activism put a spotlight on the fact that disabled black, indigenous and people of color are especially vulnerable to being hurt and killed by the police. Those who should be protecting  the rights of disabled citizens, instead use “unexpected” and “noncompliant” behavior to justify violence and pre-existing conditions to excuse fatality that occurs in the course of that violence. Here too we find parents on the front lines of these struggles.  Activist and blogger Kerima Çevik, for example, recognized years ago the dangers her son, a mixed race, autistic and nonverbal teenager, might face if he encountered the police. She works with a range of organizations to build community capacity to protect him and others. The work of minority activists, however, for too long was overlooked and de-prioritized by national parent-led disability organizations, which have majority white leadership and membership. These organization tended to sideline issues of concern to minority communities, such as police violence and the disproportionate labeling of minority youth in special education, and instead focus on an agenda seen as most politically palatable.

These examples highlight that, although the ADA opened many doors and created many protections, there is still much more to do both legislatively and in regards to resisting and changing societal prejudices and structural inequalities. Parents play a complex role in this struggle. They often ally with disabled activists to fight for inclusion and empowerment. However, continued support for congregate care and dismissing the intersectionality of race and disability contribute to some of the most pressing problems we face today.

Allison Carey, Pamela Block, and Richard Scotch are having a virtual panel to celebrate the ADA’s 30th anniversary on Aug 6th at  7pm. Visit: https://mi-ada.org/ for more information

%d bloggers like this: