Judith “Judy” Heumann 19.09.1947 – 04.03.2023

Judith "Judy" Heumann had a smile and a laugh that spread across her face. In the picture, she had her brown hair affixed with a tie, red glasses, light gray blouse, gold jewelery and red lipstick.
Foto: Finn Ståle Felberg

A champion for the human rights of disabled people, and a warm, inclusive and knowledgeable person has passed away.

Late on Saturday 4 March we received the sad message that Judith “Judy” Heumann, mother of the civil rights movement for the disabled in the United States, has passed away, aged 75. For Uloba, our movement’s most important role model and greatest source of inspiration is gone.

– Judy has always been there with us. She has been our ally since before Uloba was founded, says secretary general Vibeke Marøy Melstrøm.

The picture shows Judy Heumann in a red top and Uloba founder Vibeke Marøy Melstrøm in a black jacket and pink top. They sit on opposite sides of a oblong wooden conference desk. There are paper, technical equipment and other things on the desk, and you can see many people in the background. This is probably during a break in a seminar or conference.
According to Vibeke Marøy Melstrøm (pictured with Heumann), Judy Heumann gave decisive advice in the work to start up the BPA scheme in Norway. She has several times shared of her experience from a considerable political career with Uloba’s founders. Photo: Finn Ståle Felberg

According to Melstrøm and co-founder Knut Flaaum, Judy Heumann was living proof of what is possible when you fight for your rights, dare to take your rightful place and never give up.

– Losing Judy is almost like losing a part of the family, says Knut Flaaum. The two founders have both met the Independent Living pioneer on several occasions. In 2007, a delegation from Uloba travelled to Washington to celebrate the 25th anniversary of the Independent Living movement.

Heumann was the glue holding the movement together

– She was one of the really great ones. And a very warm and direct person in private, with a lot of humor and completely without novelty. She could talk to anyone, regardless of level, and she got involved in many battles. It was all or none. Such people become network builders, the glue in the movements, says Flaaum.

He remembers a dinner at the hotel Oslo Plaza in 2006, with the five founders of Uloba and guests. Among them Judy Heumann.

– I asked what she would like to drink with her meal. And she turned to me and said she would like a grappa (a traditional Italian spirit). That shocked me a little. I have never, before or after this dinner, heard of anyone drinking grappa with their meal, says Flaaum, laughing.

Like sisters

There was one person among the founders of Uloba who knew Judy better than all the others. Bente Skansgård is widely known the Norwegian disabled people’s movement, as the mother of Citizen Controlled Personal Assistance’s (Borgarstyrt personleg assistance, BPA, in Norwegian). Skansgård passed away in 2013.

– Bente met Judy Heumann and Ed Roberts, another of the Independent Living Pioneers, when she received the Fulbright scholarship and traveled to the States. These two became great sources of inspiration to her, says Bjørn Sebastian Hecter, husband of the late Bente Skansgård.

He remembers a warm friendship both professionally and privately.

Judy Heumann leaning close to Bente Skansgård, both with a thoughtful expression. Bente Skansgård has a slightly greyish, dark bob hairstyle with bangs, Judy Heumann has a similar hairstyle without bangs. Heumann is dressed in plum purple colours and has matching glasses, Skansgård wearing a blue jumper and a jacket with a fur collar, and a ring that winds up her finger.
Bente Skansgård and Judy Heumann at Uloba’s head office in 2006..

– Judy and Bente had the same fire in them, they were quick witted and sharp,  almost like sisters. They stood together both as women and in the fight for the disabled. They became good friends and often talked about their advocacy, standing at the forefront for their mutual cause.

Judy Heumann visited the home of Bente Skansgård and her husband (in their house at Kampen in Oslo, ed. note) many times. – I especially remember their laughter, it filled the whole house. When I found out that Judy had passed away, it was her laughter, her strength and will to keep fighting, that I remembered most clearly. Had Bente been alive today, this would have been a great loss for her. A giant has passed away, says Hecter.

The activist Judy Heumann

Heumann was born in Philadelphia in 1947, but grew up in Brooklyn, New York. She contracted polio when she was 18 months old, and her parents were advised by the doctors to send their daughter to grow up in an institution. That way her parents would be spared the financial and social burden raising a disabled child represented, according to the doctors.

I was learning that I had to become my own advocate

Judy Heumann

Instead, for Heumann and her family, it came to be the start of a lifelong struggle for the same human and civil rights that the rest of society had ther privilege of taking for granted. Judy was not allowed to start regular school. She who could not walk was labeled a fire hazard. Many years later, after a long struggle to become a teacher, she was also not certified as a teacher, for the same reason.

– I was learning more and more about what discrimination was, and equally important, I was learning that I had to become my own advocate, she has stated in previous interviews.

Judy Heumann attended several times in Uloba’s event. Here from the awarding of Uloba’s honorary award at the digital event Stolt Natt in 2021. Photo: Finn Ståle Felberg.

Heumann sued and won, and became the state’s first disabled teacher. She has helped found a number of national and international political organizations for the disabled, and has supported a large number of other human rights organisations, such as Human Rights Watch, the World Institute on Disability and Save the Children.

A champion for civil rights

In a TED Talk from 2018 (link), Heumann, in a red cardigan decorated with small bees that almost fly over her shoulders, gives the audience a riddle.

– How many people do you need to stop traffic on Madison Avenue in New York, during rush hour?

The answer, according to Heumann, was 50.

– And there were no universally designed paddy wagons. So then they just had to, you know, deal with us, says Heumann on the screen.

She smiles, as she often did, with her whole face.

Some would say that what I did changed the world. But what I actually did was quite simply that I refused to accept what others told me about who and what I could become. And I was willing to make a fuss about it!

Judy Heumann

Several times, Judy Heumann has been a leading force in large civil demonstrations to have civil rights for the disabled in the USA enshrined in law.

Willing to make a fuss

In “The 504 sit in”, an almost month-long occupation of a public building in San Francisco, over 100 people with a wide range of different disabilities took part in order to get Section 504 of The Rehabilitation Act signed and thus a part of the legislation. Heumann, together with several activists from the USA, planned, organized and led the protest. Heumann was also at the forefront when disabled people from all over the United States gathered in front of the Capitol building in Washington in 1990, to carry out what is now called “The capitol crawl”. Over 1,000 people dragged themselves and their wheelchairs, arms and legs up the world-famous stairs of the Capitol, the building that houses the US Congress, to make the government pass the The Americans with Disabilities Act (ADA).

Judy Heumann also attended the Camp Jened summer camp when she was young. The camp became a breeding ground for the disability movement in the United States. The Netflix documentary Crip Camp shows Heumann and her peers paving the way for civil rights and anti-discrimination. Watch the documentary in the window above.

“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 become. And I was willing to make a fuss about it”, Heumann has written in her biography Being Heumann: An Unrepentant Memoir of a Disability Rights Activist.

Later, Heumann was appointed Washington, D.C.’s first Director for the Department on Disability Services. And in 1993 she moved to Washington D.C. to serve as the Assistant Secretary of the Office of Special Education and Rehabilitation Services in the Clinton Administration. She also worked as the first Special Advisor for International Disability Rights at the U.S. State Department during the Obama Administration.

Our greatest source of inspiration

For Uloba’s General Secretary Vibeke Marøy Melstrøm, Judy Heumann will continue to be an inspiration. Through all her hard work and efforts, she will be remembered as a mother, role model and pioneer to a whole movement. Through figures like Heumann, the work towards an equal society is made a little easier.

– She has been our greatest source of ideological and political inspiration. And she has recognized Uloba as an Independent Living organization and recognised our work. When she has shared parts of her own knowledge, wisdom and considerable career in politics and advocacy with us, we are given courage and inspiration to persevere. She has reminded us that it is we disabled people ourselves who have to lead our fight.