I benefitted from disability rights – but how can I celebrate?

How can I celebrate my rights when the people who guaranteed them are dying?

Judith Heumann, special advisor for international disability rights at the US Department of State, speaks at the opening session of the China-US Coordination Meeting on Disability in Beijing on April 12, 2016. (POOL/AFP via Getty Images)

On Tuesday, I headed to the White House to cover an event with Vice President Kamala Harris and Transportation Secretary Pete Buttigieg to commemorate the 33rd anniversary of the Americans with Disabilities Act. The month of the anniversary of the ADA always makes me a tad emotional since I was born five months after President George HW Bush signed the bill into law.

While the law did not specifically mention autism, I still benefited from its windfall. The only reason I can work as a journalist is because of the tireless work of advocates. The ADA, along with the Individuals with Disabilities Education Act, which passed that same year, meant I have never known a world where my rights as a disabled person were not codified, albeit they have not always been enforced in practice.

Ms Harris and Mr Buttigieg led the discussion about making transportation accessible to people with disabilities. Incidentally, during the 2020 Democratic presidential primary, Ms Harris released the first disability policy platform and Mr Buttigieg hired people with disabilities on his campaign and released one of the more comprehensive disability policies. Similarly, I saw many familiar faces at the roundtable that I have met throughout my roughly eight years of covering the modern-day disability rights movement.

At the same time, I could not help but feel a twinge of despair when the vice president said “we can’t celebrate these last 33 years without also remembering Judy Heumann,” the late disability rights activist who led the sit-ins at a federal building in 1977 to coerce the federal government enforce Section 504 of the Rehabilitation Act. Because of the fact that many of my community’s elders lived in a world that disregarded people with disabilities, many of the founders of the disability rights movement who ensured I could live in a better world did not have the luxury of living long enough to see people benefit from their labour.

But Ms Heumann not only did, she lived long enough to finally be heralded as an international celebrity for her work in the Clinton and Obama administrations. Her relentless efforts were chronicled in the Oscar-nominated documentary Crip Camp. Similarly, I had to the good fortune to meet her on multiple occasions, moderate a panel with her and even introduce her to my mother. Doing so felt not only like a privilege for me but also ensured that she knew her work was not in vain before she left this world.

Sadly, she is not the only leader who has passed in recent years. Ms Harris also acknowledged the presence of former congressman Tony Coelho, who helped write the ADA but had to unceremoniously resign from the House before the bill’s passage. But it also reminded me of how few legislators who helped pass the law remain.

Most recently, Lowell Weicker, the former senator from Connecticut and one of the last truly moderate Republicans, passed away at the end of last month. Similarly, Ted Kennedy, who despite being the liberal lion of the Senate brought along many Republicans to the cause of the ADA, died of brain cancer in 2009.

I also thought about how few conservative Republicans would champion the cause of disability today. Bob Dole, who led Republicans in the Senate and led the charge on the ADA, lived to see the law pass so people did not have to suffer the way he did. He also lived to see Republicans vote against the Convention on the Rights of Persons With Disabilities, an international treaty that would have protected the rights of people with disabilities internationally.

Similarly, the late Sen Orrin Hatch, a staunch conservative, later worked to try to repeal Obamacare despite the fact that many of the same advocates who helped him pass the ADA protested his efforts. I regularly say that if it were put on the Senate floor today, the ADA would not pass. Moreover, some Republicans would likely take pleasure in doing so to “own the libs.”

None of this is to say that era of disability rights was perfect. A big reason that the Senate had more comity than it does now was the fact it was much more uniformly white, male and heterosexual than it is today. It is easier for members of Congress to do business with people who look like them, but it often came at the exclusion of other marginalised groups. Similarly, the ADA was far from perfect and lacks enforcement mechanisms to this day.

All of this makes celebrating ADA month bittersweet. It reminds me how hard my predecessors had to fight to give a good life to people they would never meet. It also makes covering disability rights all the more urgent. Countless disabled and chronically ill people perished in the Covid-19 pandemic and the Biden administration has been largely indifferent to it, with Mr Biden saying the pandemic is over.

But telling stories – both recounting the stories of our forebears and chronicling the stories of modern-day advocates – matters, both in July and year-round. It requires making sure modern-day voices are heard while the new breed remembers who came before.