“When people say no, I really have to do something about it,” says US disability rights pioneer, Judith Heumann, who has advised presidents Clinton and Obama.

As a young activist in 1970, Heumann fought New York’s education board to become the first person in a wheelchair to teach in the city’s schools. Her influential campaigns include the 504 sit-in, a month-long occupation of a San Francisco federal building in 1977 that forced through civil rights protections for disabled people. That success paved the way for the Americans with Disabilities Act (ADA) in 1990.

Now she is the star of a Netflix documentary, Crip Camp. The film – ostensibly about a summer camp for disabled youngsters in the New York Catskills in 1971 with a vibe that’s been likened to Woodstock – charts the birth of America’s disability rights movement. Heumann, who had polio as a child, is a captivating central character, with the documentary reflecting her journey from summer camp leader to disability rights pioneer.

Today, aged 72, Covid is Heumann’s biggest concern, with disabled people disproportionately affected by the pandemic. Thirty years since her activism helped secure the ADA, the virus has brought the law’s importance into sharp focus. In Alabama, for example, the state decided learning disabled people were not eligible for ventilators that were under ration; but the Office of Civil Rights ruled this violated the ADA and the decision was reversed.

For Heumann, Trump’s failure to tackle the pandemic has intensified the challenges (“we [America] didn’t take the actions that we should have early on”) and she worries about the virus’s economic fallout. “What impact will the financial situation have at a local level on money for home and community-based services? People living in institutions, nursing homes or other group settings are dying at much higher rates than those who aren’t. For that not to happen, we need to have money to enable people to live in the community.”

Her relief when Joe Biden won the election manifested itself physically: “When it happened, I realised had this kind of perspiration – I don’t sweat very much at all – but felt like I had toxins coming out.”

Biden, she says, is “committed to bringing the disabled community into the administration”. Disabled people were involved in drafting his disability policy, she adds. The role of special adviser on disability (noticeable by its absence under Trump), which she held under Obama, is waiting to be filled. Asked if Biden has invited her to resume the post, she is staying tight-lipped. “No one’s asking anything now,” she says firmly.

Heumann says her fighting spirit and optimism come from her ex-marine father and community organiser mother who instilled a sense of equality in their young daughter; she had piano lessons instead of occupational therapy, for example, “because my parents saw that it was something my brother and I could do together”.

They “were creative and supportive and were advocates … they didn’t allow the low expectations society had for me”, says Heumann.

She recalls her father defying a teacher who was clearly reluctant for a wheelchair-using pupil to be on stage to collect her high school graduation award. Without an access ramp, a crestfallen and humiliated Heumann wanted to leave but her proud parent insisted she take her rightful place, lifting her chair on to the podium.

Her parents encouraged her to enrol in summer camp, first as a camper and then as a camp leader. Through it, Heumann met diverse disabled people with whom she later collaborated in America’s nascent disability rights movement. “I’d never met anyone who was deaf and there were also blind campers so these engagements, meeting deaf campers and learning sign language, really allowed more of us to get an understanding of the discrimination we faced in various forms. We really wanted to be able to make systemic reforms and we couldn’t if we were in our own little [disability] category.”

Heumann’s first true battle as an adult was when New York education officials denied the young, fully qualified graduate a teaching licence after deciding she could not get either herself or her students out of the school in a fire (buildings were then inaccessible). She sued for discrimination. She recalls the case in her recent memoir Being Heumann, which is longlisted for the Barbellion literary prize: “It didn’t matter how smart or how capable I was … because I couldn’t walk, I wasn’t considered qualified to teach second-graders.”

Thirty years on since the ADA, to what extent has discrimination been eradicated? She is pragmatic: “Discrimination’s been in place for hundreds and hundreds of years. I’ve never been of the mind that a law like the ADA, as good as it may be, would be able to make the kind of changes that I’d like and other disabled people would like [just] 30 years later.

“One of the reasons why I think laws like the ADA and the laws in Great Britain are important and need to have strong enforcement mechanisms is that I want to be clear that if someone is doing something that’s discriminatory there’s an action that can take place.”

She adds: “One cause of discrimination – in any group – is the lack of breaking bread together, not being together and misinformation … ultimately if people were living in the same communities and working together, we’d have more of a sense of responsibility to each other,” Heumann says. “The dramatic changes that need to happen will only happen when we recognise our humanity as people, regardless of our differences.”

She believes ignorance is partly to blame for negative attitudes. “Fear is the biggest issue, then the pity and patronising bit after that, because people don’t know what to do [when they meet a disabled person], they don’t see you as equal.”

One way to tackle this is for disability issues to be addressed in literature and history in the way gender studies and black studies are taught now, says Heumann. And better representation in media and the arts is also vital.

As Netflix introduces Heumann to a whole new audience, she says she hopes the positive changes sparked by the disability movement will inspire further action: “When you look at disabled individuals, families and friends, there are many things we learned … how to be resilient, how to keep fighting, how to keep moving forward.”

Curriculum vitae

Age: 72.

Lives: Washington DC.

Family: Married.

Education: PS 219 elementary/middle school, New York; Sheepshead Bay high school, New York; Long Island University: BA in speech pathology and theater with an emphasis on speech pathology; Berkeley, University of California, MSc public health.

Career: 2017-present: president Judith Heumann LLC; 2017-2018: senior fellow, Ford Foundation 2010-17: special adviser, international disability rights at the US Department of State (Obama administration); 2007-2010: director, department on disability services, District of Columbia; 2002-06: adviser, disability and development, World Bank; 1993-2001: assistant secretary (Clinton administration), Office of Special Education and Rehabilitation Services, US Department of Education; 1983-93: co-founder and co-director, The World Institute on Disability; 1976-82: deputy director, Center for Independent Living; 1974-75: legislative assistant, US Senate Committee on Labor and Public Welfare; 1970-73: founder and president, Disabled in Action.

Awards and honours: Honorary doctorates from six universities in the United States. Awards in recognition of disability activism and civil rights work include: Lurie Institute for Disability Policy; Henry B. Betts Award; National Council on Independent Living (Women’s Caucus Award, Max Starkloff Lifetime Achievement Award); Society for Disability Studies (President’s Award) US International Council on Disabilities (Dole-Harkin Award).

Interests: Theatre, musicals, ballet, disability literature and media.