Judy Heumann: “The battle is so much bigger than we thought it was. Unless all Disabled people are liberated, none of us can be liberated.”

Judy Heumann describes herself as a white, Jewish, 73-year-old, Disabled Woman. Judy was 18 months old when she contracted Polio. When she was 2 years old, a doctor recommended that it was in Judy’s best interest for her parents to place her in an institution, which they ignored.

She now lives in Washington DC and is a lifelong activist for Disabled people’s human rights. From 2010 to 2017, Judy served as the first Special Advisor for International Disability Rights under President Obama in the US.

In 2020, Judy was featured in one of the most talked about, revolutionary films, titled “Crip Camp”.

“Crip Camp” is an American award-winning film which followed the journey of an unconventional summer camp of Disabled Young people. Many of the Young people that attended the camp went on to become activists and prominent leaders within the Disabled People’s Movement.

In September 2021, Michelle Daley (ALLFIE Director), Micheline Mason, (Founder of ALLFIE), and Melody Powell (Inclusion Now editorial member), had the pleasure of interviewing Judy to talk about her activism, the film ‘Crip Camp’, disability justice and inclusive education.

Activism and Leadership

We wanted to know a bit more about how Judy became an activist and her decision to take leadership. We had watched the film ‘Crip Camp’ which most definitely was not the regular summer camp for Disabled children and Young people. We asked Judy:

What led you to wanting to be involved in ‘Crip Camp’?

Judy Heumann (JH): “I have been an activist since before we were using the word with other friends: working on identifying the different expectations that people had of us because we had disabilities. When I was nine, I started going to camp: Camp Oakhurst then Camp Jened, the Camp featured in ‘Crip Camp’. My overall experience of being with Disabled people my age, from when I was 9, is that it has always been very influential [for] me. Really enabled me to begin to meet other people who had disabilities, not necessarily my disability but others. There is a different type of communication that we had. …but I think there’s something very special, it has always been about being with Disabled people… I could have discussions about… things happening where I felt the disability might have been a cause for denial of the right to go to regular school, not having images of who we were, not able to think about our futures in a way non-disabled people think about their futures. Members of the people in the film we’re still friends with today.”

Judy was already aware of the different forms of social injustice based on being Jewish – “My parents are German Jewish immigrants and from Germany. They lost their families during the Holocaust” – and a girl. However, the level of injustice was to become compounded further by ableism. The educational inequality Judy experienced continues to remain a poignant moment in her life.

Fight for Inclusive Education

Like we see with parents at ALLFIE, Judy’s parents were also concerned that she received inclusive education in a mainstream school. There were obvious global parallels in the struggles of Judy’s parents asserting their rights for her to receive an inclusive education in a mainstream school back in the 1950s, as today:

JH: “Like in the UK, there were no laws on the books that made it illegal to discriminate or laws that affirmed the right to be educated, having a disability. None of that was in place [for Disabled people]”

“My Mom took me to school when I was 5 years old, [but] I was denied the right to go to school because I was a ‘fire hazard’”.

For four years Judy was home-schooled:

JH: “The New York City Board of Education sent a teacher to our house for two and a half hours a week. It wasn’t until the fourth grade when I was 9 years old that I actually started going to special classes, not in the neighbourhood school. The school programme was heavily medically focussed on speech therapy, physical therapy (PT), occupational therapy (OT). I didn’t get speech therapy, but I got OT and PT, and we had a lunch period at 11 and a rest period at 12. And at 2 o’clock we were packing up to leave. So on best days, you could get three hours of education, which you typically didn’t get for various reasons. Teaching – there were no standards, we were not being taught or using the same books as kids in the rest of school”.

“One of the interesting things that was happening was my Mom was learning to become more of an advocate, when I finally did get to go to school in these segregated classes. My Mom and other mothers learned that none of the high schools in New York City were accessible, and so if you used a wheelchair or couldn’t walk up or down steps, you were supposed to go back onto home instruction. So, a number of the mothers got together to work with the Board of Education, to address the issue and demanded that they make schools accessible, and actually it happened!”

“There were three high schools in the area where I lived in Brooklyn, but they were old and really not easily made accessible. But there was a new school that had been built and it actually did have a ramp and bathrooms that were reasonably accessible. That’s the high school I went to, with other Disabled kids.”

ALLFIE knows that the struggle for inclusive education is tied up with the legal system which is inconsistent with the United Nation’s Convention on the Rights of Persons with Disabilities (on education). Judy commented that:

JH: “The reality is the principles of inclusive education are the same for each country. The way things get implemented will in many ways depend on the socio/economic reality within the country. But the main objectives are getting children into school, getting them an inclusive setting, working with teacher training, helping people to learn how to accommodate children who have various disabilities to be able to benefit from learning, and an expectation that children can grow up to get jobs… I don’t believe that we have achieved what we need to have achieved, in terms of schooling and accommodation.”

504 Demonstrations

We had read about Judy’s campaigns and were interested to hear from her which campaign stood out to her the most and why?:

JH: “The 504 demonstrations in 1977 definitely were an amazing set of activities that went on and really engaged many people from the disability community and allies from around the country, in ultimately letting us get this major piece of legislation passed in the United States, or regulations signed to implement this particular piece of legislation. It’s called Section 504, the provision of law in the United States that says if an entity is getting money from the federal government, they may not discriminate based on disability. It took 3 to 4 years to be able to get those regulations developed because, when the law was passed there were no definitions of, for example, who were ‘Disabled people’, what is ‘discrimination’, what would be the remedies to address some of these issues.”

“We took over a floor of a federal building and it was the longest takeover of a federal building in the history of the US, still today, and we had a lot of support. Even from the mayor of San Francisco. It was kind of a ‘California Bay Area’ activity, which ultimately benefitted the Disabled people who were involved in the working groups and staying in the building and supporting and going to demonstrations outside.

There was an amazing amount of activity, and so many that were involved and not just from the disability community. One of the members of the committee that worked on the demonstrations was a founding member of the Black Panthers and he was in the building. He was able to get the Black Panther who had a kitchen – they were feeding kids in a place called Oakland California – and they were bringing food in, so people had a warm meal and food everyday… which was really important. People appreciated it and it was really one of the reasons why people were able to stay.”

“You will learn a lot about the history [from Crip Camp] of those demonstrations and the activities around getting the 504 regulations ultimately signed. That was a real high point for a lot of reasons. We have made very important changes in all of our countries. I also believe that the laws that we have, people need to continually learn about these laws and how they work, or they can’t use them.”

Intersectional oppression

Judy moved the conversation to address intersectional discrimination in more detail, which is a concern in education, particularly for Disabled people from marginalised, and under resourced communities. For example, the Department for Education (DfE) in 2019 reported that Disabled girls in English schools are exposed to a higher rate of exclusion than their non-Disabled peers [https://bit.ly/3eVWROX]:

JH: “Certainly, there are issues also around race, where kids who are Black or Brown are more likely to be in segregated programmes, particularly if they have mental health disabilities or developmental disabilities – those are still ongoing issues.

I think, also because of the diversity of our communities – you’re not just a Disabled person. You’re a Disabled person plus, plus, plus… Like I define myself as a Disabled Jewish Woman. I have spent time within the Jewish community talking about the kinds of discrimination that Disabled people face…”

“We’re not where we need to be but, certainly, I think we are making more progress.”

Global solidarity

As we approached the end of the interview, we asked Judy how she saw the future, when she started in the movement, compared to how it is now?”

JH: “It’s not better than I expected, but it is certainly much better than it was when I was growing up. For me what is better is a growing movement of people. When we look from then to today, like in all of our countries, we’re seeing a growth of our movements across disability and I think the voices of many Disabled people in our communities, and families and others are really understanding more clearly the types of discrimination that people are experiencing. And I think our movements are becoming definitely bigger – intergenerational, more people with invisible disabilities who are beginning to see the value and importance of them identifying as having a disability – which is ultimately very important.”

“Kids are still experiencing way more discrimination than they should, certainly in both our countries [in UK and America]. It is much more likely that those with [physical impairments] would be in regular programme now – not guaranteed but much more likely. Kids with other forms of disabilities [e.g. autism, mental health] are more likely to be in segregated or less integrated classes.”

“I do believe things have been changing over the last decades, because of people like us and many others. But obviously the discussion we’re having today around education is because we don’t believe we’ve achieved what we want to be able to achieve, and to ensure that Disabled children get to go to school with other kids with appropriate accommodations.”

“We still don’t see the Individuals with Disability Education Act or Section 504 of Americans with Disabilities Act being implemented to the extent that many of us believe that it needs to be, so we are still seeing children that are being segregated and not receiving an appropriate education.”

“We’ve learnt a lot about what can work. At the same time, we also know a lot that can work isn’t working because the will is not there and the laws that are there aren’t being implemented appropriately in countries like ours. More people are benefiting but not to the degree that they could or should be.”

“Over my lifetime, it has really made me feel very aligned with other Disabled people in the US and around the world because it doesn’t matter where you live, the problems – the underlying views of Disabled people – are the same.”

“The battle is so much bigger than we thought it was. Unless all Disabled people are liberated, none of us can be liberated.”

References:

• Netflix (2020). Crip Camp: A Disability Revolution. Available at: https://youtu.be/OFS8SpwioZ4
• Graham, E, et al., (2019). School exclusion: A literature review on the continued disproportionate exclusion of certain children. Available at: https://bit.ly/3eVWROX
• Heumann, J, et al (2021). Being Heumann: The Unrepentant Memoir of a Disability Rights Activist. Penguin. England