Courtney Felle, an intern in ACL’s Center for Policy and Evaluation, shares a personal reflection on the 31st anniversary of the Americans with Disabilities Act and the future of disability advocacy.
I was born disabled at the end of 1999, nearly a decade after the historic passage of the Americans with Disabilities Act (ADA). Growing up, I took for granted my status as part of the ADA generation: I had some (though not all) mixed-ability classes and extracurriculars, I considered accessibility features desirable and even a default for all buildings, and I expected to receive accommodations in college. For previous generations, even these simple expectations might have seemed overly-optimistic and grand—part of some imaginative, distant future. That future is now possible only because of the dedicated and ambitious work of hundreds, if not thousands, of disability activists.
But no one ever taught me about the ADA’s importance or how I fit into the history and legacy of those activists. I only began learning about the ADA during my sophomore year of college, when I wrote my first-ever disability studies paper on its passage. I wondered how such an influential and emotional moment in legislative history had gone untold and publicly unremembered, during my time growing up. I wondered how much I had lost out on as a child because disability history and community had been deprioritized, depoliticized, and separated (or even erased) from the ‘American’ narrative in my community.
I read about Justin and Yoshiko Dart’s cross-country road trip, where they collected stories from disabled individuals who were living in so many different cities and contexts, but were all clamoring for the same civil rights law. I read about disabled, LGBTQ+ advocates like Patrisha Wright, Chai Feldblum, and others, who fought to keep protections for people with HIV/AIDS in the ADA when some wanted to remove it from the draft. I read about the Section 504 protests—which included what is still the longest-recorded occupation of a federal building—and the lifelong friendships formed as disabled activists demanded full respect and personhood, creating the political foundations for the ADA a decade and a half later. And I read about advocates with so many different kinds of disabilities and overlapping identities coming together in pursuit of better legal options for as many community members as possible.
Overwhelmed by the power of collaboration and solidarity, I cried. It’s encouraging how powerful our community can be, especially when we embrace our diversity and interdependence and when we allow people at the intersections of multiple marginalized identities to set our agendas and lead our initiatives. And it’s in these moments that the ADA really shines and offers an example we can use to build strategies for disability advocacy and policy beyond the ADA.
I say “beyond the ADA” because the ADA has a complicated legacy. It widened opportunities, but often predominantly for those who were closest to accessing employment and legal protection by virtue of their class, race, disability type, and other statuses. It also reinforced problematic expectations about the importance of employment at all personal costs. As we move ahead, we must ensure that the equal opportunity it promises extends to all people with disabilities, and also consider the need for social insurance, communal responsibility, and networks of care.
As someone who identifies both descriptively and politically with chronic illness, I am especially concerned with how the ADA accommodates, or sometimes fails to accommodate, the lived realities of our bodies. The ADA focuses mainly on infrastructure accessibility, including for businesses, schools, public gathering spaces, and transportation services. These are vital initiatives that activists are still defending and pushing to implement, but they cannot be the end of our accessibility practices. What does accessibility mean for chronically ill individuals who cannot leave their homes because they do not have the physical capacity, energy, or immune safety to even arrive at the buildings that have been modified? How can we extend inclusion to everyone, not only those with the privilege and ability to enter traditional public spaces?
I’m already seeing the virtual options made available during the pandemic roll away as nondisabled individuals receive vaccinations and begin returning to in-person activities. I fear that chronically ill people, who may continue to rely on virtual and asynchronous engagement, will again experience isolation, stigmatization, and material abandonment. Similarly, I wonder how we ensure access to needed resources, including both community support and community contribution, for those in the disability community who cannot work a stable number of hours month-to-month, or even day-to-day, or cannot fit into typical standards of productivity. How do we build proactive, holistic, truly just alternatives to the gaps and failures of our current legislative landscape, including the ADA?
I believe in a future full of care, remembrance, and celebration for disabled leaders, past and present. A future in which disabled children will grow up already knowing both the highlights and the limits of the ADA; in which we commemorate important anniversaries, but also choose to recognize and practice our shared commitments to each other every day; and in which our communities hold space for everyone, without exceptions and with room for complexity. But to achieve that future, we must critically imagine it and consistently build it in the present.
The opinions expressed are the author’s, and do not necessarily reflect the perspectives or policies of ACL, HHS, or the federal government.