Thursday 19-11-2020 - 11:01

Being Heumann (an unrepentant memoir of a disability rights activist) by Judith Heumann

General overview

Judith Heumann is an American disability rights activist who has worked on many key projects throughout the years that helped to make America more accessible to the disabled population. She experienced ableism early on in life, when her mother had to fight for her right to attend school. She was told by the principle that she was a fire hazard due to being a wheelchair user as a result of having polio and was not permitted to register. Eventually she got a place to study at Health Conservation 21, this was a program for disabled children to allow them to go to a mainstream school, but they would be separated the whole time. She was nine years old when this happened, and when she was in the classroom she noticed all the children were of varying different ages, and yet where all were learning together. Judith also says that in the afternoon the teacher turned off the lights and told them to rest for an hour. Obviously, for some disabled people taking breaks like that is a necessity, but the fact that this was blatantly forced upon them shows how people don’t treat disabled people as individuals. It’s also important to note that at that time school was mandatory, and had been for a while, but this rule did not include disabled children, meaning people had an excuse not to educate disabled children because they simply didn’t have to. Despite the overriding expectation that she wouldn't be able to learn, the separation and infantailsing, Judith says she did enjoy school because it meant she wasn’t stuck at home everyday and she could actually learn something.

Judith went to University in the hopes of becoming a teacher, she passed all the necessary exams which just left her with the medical. It was here where she faced issues. The doctor repeatedly asked her irrelevant and invasive questions and tried to force her to walk, even though she couldn’t. It was ruled that she was unfit to teach on the basis that she couldn't walk, she knew she had to fight this ruling. At that time disability was not included in the civil rights movement, so denying someone a job based on their medical history was not considered discrimination. She decided to go down the route of publicity leading to various articles and interviews about her situation being published and gaining a lot of traction. Eventually, Judith was allowed to repeat her medical exam with a different doctor and got her license to teach. She taught for several years before her career took a turn and she became involved more in politics. 

She worked on various aspects of disability politics. One of the first things she got involved with was section 504, which recognised denying people the ability to go to things such as school was discrimination. There were difficulties in getting the law passed, which lead to various protests. As a result she met Ed Roberts, another disability activist who at the time was the director of the centre for independent living in California which helped disabled people to live independently. In California she pursued her Master’s and also worked with Senator Williams, there she worked to try and ensure disbaled children had access to quality education. A few years later she became the director for the centre of independent living, at this point section 504 had still not passed. Activists knew they had to apply pressure in a big way to ensure section 504 was signed. Groups from a variety of locations across the country staged sit ins in federal buildings, with Judith being in San Francisco. The sit-in lasted 28 days, with people trying to force them out through various means such as allowing people to leave and not come back in and cutting off the telephone lines. The San Francisco sit-in continued, and Judith talks about some key moments of intersectionality between civil rights groups, such as members of the Black Panthers bringing them food every night when they were struggling to find things to eat. After a long battle section 504 was eventually signed.

The aftermath of signing section 504 was difficult as structural changes had to be made. Public transport and buildings needed to be modified to make them accessible, but many people didn’t want to do this as it would cost money. Disabled people were, and still are framed as complaining when we ask for adjustments that allow us to participate in things that other people don’t even give a second thought too. Judith worked at a variety of different positions, such as running the Office for Special Education and Rehabilitation Services under the Clinton administration, working at the World Bank as their first Advisor on Disability and Development and was the Special Advisor on International Disability Rights under Obama. Judith played a role in advancing disability rights in the USA, working alongside other activists to try and make sure disabled people have the rights they deserve.

Favourite quotes

“At camp I didn’t have to worry about what I needed, or how much help I could ask for at one time. I didn’t have to secretly rank what I needed in order of importance so as not to ask for too much at once. I didn’t have to feel that bad feeling I got when something was inaccessible and someone said no to something I knew I could have done myself if my world had been accessible. Camp, I thought, was what it would feel like if society included us.”

“I was beginning to learn something very important: when institutions don’t want to do something, to claim something is a ‘safety issue’ is an easy argument to fall back on. It sounds so benign and protective. How could caring about safety possibly be wrong or discriminatory? It’s hard to argue against ‘safety’. Everyone wants to feel safe; It’s a basic human need.”

“When this is not understood, we get framed as ‘complaining’ and ‘selfish’, even though we’re simply asking for the same rights as everyone else. This especially happens to women. We’re called ‘demanding’ and if we refuse to back down, we’re called ‘relentless’. But labelling us ‘demanding’ and ‘relentless’ is just a different way of trying to make us ‘submit’.”

Why should you read this book?

I think this book gives a great overview of more recent disability history in the USA, including some important landmark events such as the law that means it is legally possible to define disability discrimination as just that. The fact that Judith talks through all of her life and how ableism has impacted so many different aspects of it, frequently in a very raw and personal way, really helps you to understand how everyday ableism can be. Although she has contributed so much to the American disability rights movement, allowing things to improve in vital ways, it is very interesting to see how the problems she faced decades ago do still exist today. I think she really highlights how we live in an inaccessible society, for example she mentions how excited she was the first time she saw an accessible bus. Buses tend to be wheelchair accessible now, but for most public transport only has space for one wheelchair user, so although yes it is technically ‘wheelchair accessible’ it works on the presumption that disabled people don’t go out very much so won't need to use buses often and that when they do go out they will be on their own or with someone who is not a wheelchair user. I think it is a really interesting book and would recommend that anyone reads it as it is easy to digest but still challenging in the topics that it covers.

Written by Jess Edwards, SU Disabled Students' Officer