At [Disability Lead], we believe that leading with power and influence means leading with your personal story. We kicked off our 30th-anniversary celebration of the Americans with Disabilities Act (ADA) by hosting a crucial discussion during Night of Ideas: Alive! This first-ever convening brought together powerful voices from academia, the arts, science, and civic life in Chicago, France, and beyond to engage audiences in an active reflection of what being alive was, is, and could be.
The panel titled, “The Lives We Lead: The Evolution of Disability Rights Across Generations”, featured our very own Members Emily Blum, Risa Rifkind, and Rahnee Patrick. They each spoke on their personal experience growing up with and without the ADA — and what our collective vision should be for a more inclusive, just, and equitable world.
I was happy to be in the audience to witness this conversation — my top ten takeaways below:
1. Access = equity.
The conversation began with equity at the center — highlighting the live captions that would continue throughout the night. The captions provided baseline communication access for everyone — from those who are hard of hearing to people like me live-tweeting the night.
2. Disability is what makes us human.
40 million Americans have a disability and in Chicago, 1 in 5 people have a disability. People with disabilities are not a monolith — we come from all backgrounds, all races and ethnicities, all genders and sexual orientations, all backgrounds and income levels, family histories — you name it. We are everywhere because we are everyone.
3. Spoiler alert: There is still a lot of work to be done.
Three decades after the passage of the ADA, people with disabilities still have the highest levels of poverty, lowest educational attainment, and highest unemployment rates of any population. For example, individuals with disabilities are employed at half the rate of their peers without disabilities. In Illinois in 2016, only 35% of people with disabilities were employed compared to 79% of working-age adults without disabilities.
4. The ADA is larger than just one person or one piece of legislation.
The Americans with Disabilities Act, signed into law in 1990 under the Bush administration, is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and public and private spaces. While that’s the clerical definition, the ADA is also part of a larger vision for inclusion and justice.
5. Analyze and question power structures.
Advancing Leadership’s mission is that people with disabilities will lead with power and influence — part of that work is analyzing who has power, who does not, and who is consistently left out of the decision-making process. Often, as discussed throughout the night, discrimination wasn’t a cut and dry offense. Often, discrimination is steeped in a series of microaggressions — we need to call those out and bring our current ableist and racist systems into question.
6. Trust your gut and fight for what you believe in.
Consistently, across the stories of all the panelists, they had an experience where they were discriminated against but were not sure if they should speak up and make a big deal about it. This is particularly true for this panel of all women with disabilities who are told in different ways to stay silent in fear of retribution. In order to fight against the oppression that has proceeded us, we must make daily efforts to speak up and claim our inalienable rights.
7. Future wins must be intersectional.
It was particularly important for me that we had two women of color leading this panel discussion. Traditionally, the fight for disability rights has been a white-led movement. This has opened the opportunity for conversations on how to effectuate intersectional disability justice and intentionally bring people of color into the decision-making process.
8. It takes all of us.
Disability rights are human rights. You don’t have to be the person with a disability in the room asking for people to use the microphone or for there to be an accessible entrance. All of us, with disabilities or not, must constantly ask these questions of access where we work and where we volunteer our time. Accessibility is a shared responsibility.
9. So, let’s make it better.
Even 30 years after the passing of the ADA, people with disabilities wake up every day and face a direct violation of their rights — in schools, in housing, even in just trying to go out to eat. Martin Luther King Jr. said, “Injustice anywhere is a threat to justice everywhere.” Let this be our guiding light to fight against injustice in our systems and do better.
10. The conversation doesn’t end here.
The conversation is just getting started and we have a whole year to celebrate, reflect, and ultimately, act. 2020 is a critical year for us to be proud and make ourselves heard. Make a plan for how to better root yourself in disability justice this year.
Alexandra Perez-Garcia is a nonprofit leader, development professional, and mental health and disability rights advocate. As Associate Director of Development and Communications at [Disability Lead], Alex is responsible for growing this startup organization through internal and external content production and high-quality fundraising campaigns. Previously, Alex was a Program Associate at The Chicago Community Trust, where she managed several projects related to the Trust’s commitment to racial equity, disability inclusion, and strategic growth for diverse populations and disinvested neighborhoods. In her tenure at the Trust, she was integral to the incubation and launch of the new nonprofit organization, [Disability Lead], the only leadership program in the nation that connects leaders with disabilities with civic engagement opportunities. Alex started at the Trust through the University of Chicago Public Interest Program (UCPIP), now the Kimpton Fellows program, a competitive one-year fellowship opportunity for graduates interested in launching their career in the public sector at high-impact organizations.
As an inaugural member of The Obama Foundation Community Leadership Corps, Alex founded The Beautiful You Project, aimed at creating an online community around mental health fueled by young voices of color. In the first month launched, the blog, which featured lived experiences of mental illness including her own, was read by thousands across the country. Because of her work, she was selected as a featured speaker during the 2018 Obama Foundation Summit and serves as an Alumni Ambassador for the Foundation. She also serves on the Chicago Foundation for Women’s Young Women’s Giving Council. In 2019, she was awarded the Young Alumna Award by her high school alma mater. She is a 2020 [Disability Lead] Fellow. Alex graduated with honors from UChicago with a bachelor’s degree in Psychology and Public Policy. She strongly believes in the power of personal narrative, civic engagement, and working together to infuse equity in our systems.