With Disability Pride Month in July, our trustee Mark Henderson looks back at the immeasurable impact two activists have had on the disability landscape, and why we are still fighting today
Many people know that June is LGBTQ Pride Month, a commemoration of the Stonewall Riots in New York city in 1969. What is less commonly known is that July is Disability Pride Month, a celebration similarly rooted in protest and civil disobedience which began in the USA over half a century ago.
This year, Disability Pride will be poignant, due to the recent sad deaths of two legendary disability activists: SIA’s founder and president Baroness Sue Masham, and American disability icon Judy Heumann.
Sue, a former Paralympian and then parliamentarian was, right up to her death, amongst SIA’s (and the wider disability movement’s) most formidable campaigners, as I experienced first-hand in SIA’s campaign to tackle the current care crisis. She was the embodiment of what SIA stands for.
Judy kicked off the disability rights movement (she is often called its mother) in 1970, going from civil rights sit-ins to disability portfolios in the Clinton and Obama administrations. Disabled parliamentarian Baroness Jane Campbell mourned her as:
“… my freedom fighter friend [who] gave everything to our worldwide civil rights movement”.
Judy’s life and achievements highlight what has been won by the disability rights movement internationally over the decades, but also how the same ableist prejudices and tropes continue to impact our lives and battles to this day. Because of polio, she was a tetraplegic wheelchair user from the age of two. Discrimination started early: she was refused a place in kindergarten because she was deemed a ‘fire risk’. In 1970, fresh from college, she was again refused a teaching licence because she would be a fire risk as a wheelchair user (despite pointing out that her power chair could travel faster than a walker). She brought the first civil rights court case challenging disability discrimination in a blaze of publicity. Winning that case set her on a roll. Two years later, she was leading street-level direct action which persuaded President Nixon to remove his veto on the Rehabilitation Act. This included s.504 – the first law prohibiting disability discrimination. But it was not brought into effect.
Three years later, President Carter won the White House on a pledge to do so. When he hesitated in the face of reactionary government and industry voices, complaining, as usual, about cost and practicality, it was the final straw for the disability rights movement. Judy led the famed 26-day 504 sit-in at the San Francisco federal offices. The longest non-violent occupation of a government building in US history was unplanned, but led to legendary camaraderie. Disabled people and a few PAs shared supplies and makeshift facilities for personal care, and when the authorities cut phone lines to the building, undeterred deaf occupants communicated press releases out the windows using sign language. Judy led a delegation to Washington and s.504 was finally enacted.
Over a decade later in early 1990, the fight to pass the more comprehensive Americans with Disabilities Act (ADA) was stalling in Congress, with reactionary voices again railing against the cost and effort of making workplaces and public spaces accessible. In March 1990, disability activists launched a wave of protests and direct action in Washington DC. The most famous became known as the Capitol Crawl.
On the 12 March 1990, 1,000 disability rights activists gathered outside the US Capitol Building. Michael Auberger, a SCI tetraplegic power chair user, made a speech at the bottom of the Capitol steps. He recalled how he climbed them as a non-disabled child, pre-SCI, adding that:
“we will not permit these steps to continue to be a barrier to prevent us from the equality that is rightfully ours. The preamble of the Constitution does not say: ‘We the able-bodied people’. It says: ‘We the people’.”
This was a pre-arranged cue for, ultimately, more than 60 adults and children to abandon their wheelchairs and mobility aids and crawl up the Capitol steps to illustrate the inaccessibility at the heart of American democracy. ADA was finally enacted in July 1990, and remains the main anti-discrimination law.
Disability Pride each July marks the three-decade civil rights struggle that led to ADA and celebrates the mushrooming of an international disability rights movement. Just as LGBTQ protests on homophobia and AIDS spread from the US to the UK in the 1990s, so too with disability discrimination, leading to the seminal enactment of the Disability Discrimination Act 1995. However, both Sue and Judy could explain like no one else what the right to independent living meant in practice, and how civil rights prohibiting discrimination were not enough for people who, like them, required personal assistants and care in order to be able to make (in their cases extraordinary) contributions to society. Following SCI, we get a stark illustration of the barriers that society places in the way of disabled people leading the lives that non-disabled people take for granted.
SIA vice president Martin Hibbert says: “It’s not being in a wheelchair, it’s people’s attitudes that make me feel disabled.”
This is borne out by SIA’s 2022 ‘What Matters?’ survey, which found that the top barriers to living a fulfilled everyday life were societal attitudes towards disabled people (identified by 92%), followed by barriers to accessible housing, employment, and care issues. These barriers are shared with other disabled people. We are so much stronger fighting these barriers by coming together in the pandisability movement that Disability Pride personifies.
Judy ended up leading the Obama administration’s failed effort to get the USA to ratify the UN Convention on the Rights of Disabled People (which the UK has done). Disability Pride marks not only what Judy, Sue and so many others have achieved. It also amplifies our voices in challenging the same discrimination, stigma and tropes that still exist many decades on. That is nowhere better shown than in how the tropes deployed to stop Judy attending kindergarten with non-disabled children and then from teaching are now writ large in the Grenfell Tower Inquiry.
Judy wrote in her memoir, Being Heumann, that when she first challenged her teaching ban on ‘safety’ grounds in
1970, “the Board of Education … felt ‘sorry for me, but that they had to assure the safety of pupils, such as during fire emergencies’. I was so tired of being called a fire hazard I could vomit.”
She said she learnt at that moment how institutions trot out ‘safety’ concerns to justify disability discrimination.
Over half a century later, representing survivors of the Grenfell Tower disaster demanding escape plans from high rise blocks, we have ‘safety’ deployed to justify leaving disabled people trapped in their flats while non-disabled people evacuate. In the same breath as a Government minister acknowledged to Parliament that “more than 40% of the disabled residents [in Grenfell Tower] died, and we are acutely aware of the need to ensure the safety of residents with mobility concerns”, he resisted a legal amendment giving disabled residents the right to an evacuation plan because; “On safety, how can you ensure that an evacuation of mobility impaired people is carried out in a way that does not hinder others in evacuating or the fire service in fighting the fire?”
During a recent rehab readmission, I was once again back amongst newly disabled people questioning their identity post-SCI. Grace Spence Green, who was a medical student when we did rehab together following our injuries in 2018, and is now a junior doctor and passionate disability activist, sums it up:
“For me, identifying as disabled aligns myself with a community and a cause, a thing that is bigger than me. I am so proud of that community and the work we do and that makes me proud to call myself disabled.
“On a personal level, I think my injury has forced me to grow in so many ways. At first I didn’t know what it felt like to be me. I could no longer access things I did that were previously a big part of my personality. I had to start from a blank slate again and had to work really hard to build myself up again and find things I could identify and connect with. So I’m proud of that too!”
Just as LGBTQ Pride has been instrumental in empowering a movement, so too has Disability Pride. Judy wrote:
“Some people say that what I did changed the world. But really, I simply refused to accept what I was told about who I could be. And I was willing to make a fuss about it.”
This July, let’s celebrate Sue and Judy’s determination to define who they were and what they could be. And remember: you don’t need to be a full-time civil rights activist to make a difference: just make a fuss.
This story appeared in the Summer 2023 issue of our magazine FORWARD. If you would like to receive regular copies of FORWARD by post or email, visit our shop to subscribe.