On Friday evening, shortly after 7:30 pm, while Zooming with two friends I’ve known since residency, talking about our concerns about the upcoming election (as we have been doing for months), I received a text from my mother, “Oh NO!!!! RBG just died.” When I looked up, Dave and Lainie knew something had changed, my face must have been clouded, my eyes already filled with sadness and despair. I said, “you guys, Ruth Bader Ginsburg died today.” We checked and then posted on Twitter and Facebook, as you do. Our phones blew up. Messages came in from across the country and around the globe. We tried to console each other. A tiny woman who was larger than life -a superhero, gone. What resonated with me the most in those moments and now is the thought that to best honor her legacy we need to fight for justice and equity.
One case at a time, Ginsburg persuaded the Supreme Court to recognize the constitutional barriers against discrimination on the basis of gender/sex. Most famously she used the 14th amendment’s guarantee for equal protection under the law to undermine the legality of sex-based discrimination. She did not treat the courts as hostile, instead she educated the courts that how the law was being interpreted at the time was discriminatory. She also very carefully made the case that gender bias negatively impacts men as well. This is a critical lesson for those of us engaged in disability justice.
Helping politicians, justices and society at large understand how discrimination against people with disabilities is harmful to everyone is a smart tactic used frequently during the ongoing disability rights movement. Disability is a human experience that can occur at any point in one’s life. People without disabilities may need to be reminded of that fact, but once they recognize that they too could develop disabilities, they may be more inclined to promote disability justice. “Nothing about us without us” is an essential component of the disability rights movement but we need also need them (people without disabilities). Just as we cannot expect African Americans to address racial injustice on their own, people with disabilities need people without disabilities to dismantle stigma and discrimination. Taking a page from the Ruth Bader Ginsburg playbook, we are reminded of her words, “fight for the things you care about but do it in a way that will lead others to join you.” To achieve disability justice, we need people without disabilities to become anti-ableist. The first step is illuminating the ableist way our society is structured and how ableists biases permeate consciously and unconsciously.
I hope my work helps the health care system understand its ableist tendencies. Through research and direct engagement, I educate my colleagues about how quality of life is defined by the person, not by the observer and that health-related quality of life measures which emphasize function are ableist and devalue the lives of people with disabilities. My health disparities and inequities research serves to remind us that disability equity is a part of health equity.
A larger anti-ableist blueprint that demonstrates that disability equity is better for everyone -people with disabilities and those without, requires great collective action, part of which is a concerted legal strategy. Ruth Bader Ginsburg argued that the laws that were designed to protect women put women lower on the gender hierarchy. Similarly, many of the policies and laws that impact people with disabilities were designed to protect them, but have the consequence of hindering their autonomy, limiting their opportunities, ‘othering’ them and fostering the idea that people with disabilities are to be pitied. The policies (e.g. sheltered employment), structures (e.g. built environment) and attitudes (e.g. stigma) that keep people with disabilities from living their lives to their fullest potential need to be systematically dismantled, just as Ruth Bader Ginsburg worked to systematically dismantle the laws that restricted women. The disability rights movement, like the women’s rights movement, is ongoing. Sometimes I feel frustrated about how long it takes to make change, then I am reminded that Ruth Bader Ginsburg said, “real change, enduring change happens one step at a time.” I look forward to honoring her legacy by acting to usher in an anti-ableist future that benefits us all.