Judith Scott (1943-2005)

She couldn’t hear, couldn’t speak and had Down syndrome.  She spent years in an institution, until her twin sister rescued her.  Yet today, her textile pieces are held in museums throughout the world and sell for tens of thousands of dollars.  This profoundly disabled person was at the same time a great artist, whose work has bought pleasure to many. 

Judith and Joyce Scott were twins, born into a middle class family in Cincinnati, Ohio.  As small children, the two girls were dressed alike, played together, and were encouraged to participate equally.   Joyce later wrote:

"At first we lived unaware and unafraid. In the sandbox where we played, pouring sand in each other's hair, wiggling toes in wetness, making our leaf and stick dishes and dinners, we still felt only the innocence of our soft skin and earthy explorations. But the forces pulling at us and threatening us grew as we grew. No longer wrapped in the protective web of our family's ties alone, we soon joined the neighborhood. There Judy was seen as different - and to a few ignorant and fearful souls, different meant dangerous. Our next-door neighbors refused to let her in their yard. Currents growing, doors slamming shut."

But Judith was born with Down syndrome, and after an attack of Scarlet Fever, she also lost her hearing.  When she was tested for entry to special school, her deafness meant that she did not respond to verbal questions, and so she was thought uneducable.  At age 7, her parents, acting on the medical advice of the time, sent her away to a residential institution for people with profound intellectual disability, where she would stay for the next 35 years.   Very distressed at being parted from her sister, Judith was seen as a disruptive presence on the wards.  Joyce wrote:

"The State Institution was a terrible place - worse than terrible - full of the awful sounds and smells of human suffering and abandonment. It still lives in my nightmares. That Judy is not haunted, that she has not been destroyed is a testament to the human spirit and most especially to hers. There is no doubt that institutional life has left its mark. Her habit of stealing small bits and pieces, of hoarding things, of being initially suspicious of strangers and of tending to isolate herself, these all reflect those terrible times. Her incredible ability to persevere and to sustain her focus, to hear her own inner voice, may also come from those years of crowded aloneness."

However, in 1986, her sister Joyce fought to get Judith out of the institution, and Judith lived together with Joyce and her family in California.  Later she moved into a community home, which meant that she enrolled at Creative Growth Arts Center, in Oakland.   She started in the painting class, where she showed no particular talent.    Several years later, she saw people working with textiles with a visiting fiber artist, Sylvia Seventy.  Judith Scott immediately gravitated to that medium, and created her own way of working.  

Her pieces consist of found objects, which she carefully wrapped in coloured fibre.  She would appropriate any object lying around the studios that she felt like, to act as the core of her sculptures, including once an electric fan, and at least one set of car keys. Each piece might take weeks of careful wrapping and weaving and knotting until she was satisfied.  Sometimes reminiscent of the figures of Alberto Giacometti, the results might look like strange animals or totem poles, or cocoons.  Often, they come in pairs.  As soon as she had finished one artwork, she would begin on the next one.

Judith worked as an artist for five days a week for eighteen years, and produced over 200 sculptures.  Her work is collected in public museums, such  as MOMA, New York or the American Museum of Folk Art, and private collections all over the world: she has become one of the most famous of all Outsider Artists.   As well as a critical study by John MacGregor, she was the subject of four different documentary films, in which she appears as almost regal, wearing a large hat, and firmly determined to make her work in the way she wanted, often carrying the large pile of glossy magazines, which she liked to look at.  Critic Eve Sedgewirk talks of her as "the holder of an obscure treasure".  Rachel Adams writes: "Looking at a piece by Judith Scott, our eyes are invited to function as organs of touch, sensing the texture and heft of the artifact, becoming aware of the relationship between our own bodies and the work of art."

Until the end, Judith remained very close to her sister and to her sister’s family, and it was in Joyce’s arms that she died of heart failure, aged 61.

Links

Judith Scott’s work can currently be seen in an exhibition called Bound and unbound at Brooklyn Museum until March 29 2015. 

There’s also a review of the show in the New York Times

Website 

Harriet McBryde Johnson (1957-2008)

“I am in the first generation to survive to such decrepitude. Because antibiotics were available, we didn't die from the childhood pneumonias that often come with weakened respiratory systems. I guess it is natural enough that most people don't know what to make of us.”

Born in Laurinburg, North Carolina on July 8, 1957, Harriet McBryde Johnson was one of five children born to parents who were college lecturers.  A  sister died of the same progressive neuromuscular condition that she herself experienced.  Thanks initially to the family’s economic security and later to her own professional career, she benefitted from the personal assistance and the power chair that enabled her to participate in American society.  She always knew that she was one of the privileged ones, who could escape what she called the “Disability Gulag”.

From an early age, Johnson realized that she would have a limited life expectancy.  She was an activist by the time she was a teenager at special school, trying to get an abusive teacher fired.  Like thousands of other disabled people, she thought that television charity telethons – such as the annual Jerry Lewis event on American TV – were demeaning and counter-productive.  Later she would describe herself as holding the world endurance record for protesting the Jerry Lewis telethon.  In return, Lewis described activists such as Johnson as the equivalent of Lebanon’s Hezbollah.

Harriet McBryde Johnson earned undergraduate and postgraduate degrees in history and public administration in Charleston.  After graduating from the University of South Carolina Law School in 1985, she set up in private practice as a lawyer, where she specialized in welfare and civil rights claims for poor people with disabilities.  She was also active in the Charleston Democratic Party, first as secretary and then as chair.

Johnson’s intelligence and confidence made her an ideal advocate for disabled people, not just in the courtroom but also in the political arena and through the pages of America’s newspapers.   She also had a wry sense of humour, as another extract from her writing demonstrates:

“It's not that I'm ugly. It's more that most people don't know how to look at me. The sight of me is routinely discombobulating. The power wheelchair is enough to inspire gawking, but that's the least of it. Much more impressive is the impact on my body of more than four decades of a muscle-wasting disease. At this stage of my life, I'm Karen Carpenter thin, flesh mostly vanished, a jumble of bones in a floppy bag of skin.”

Beginning in April 2001, her most famous intervention was a series of encounters with the Princeton philosopher Peter Singer.  A utilitarian, Singer has notoriously challenged the value of life, and suggested that it should be permissible for severely impaired newborns to be killed. In 2002, she debated publicly with Singer, and subsequently published “Unspeakable conversations”, an article in the New York Times, the source of the self-description above.  Johnson pointed out that: “The presence or absence of a disability doesn’t predict quality of life.”  Drawing on her own experience as someone with a neuromuscular impairment, she argued: 

“We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own.”  

Singer’s theories may lead him to obnoxious conclusions on the topic of disability, but he is no bigot: on other issues he is very progressive.   He is also of course formidably intelligent.  On the one occasion that I debated with him on radio, I found him a rather cold and intimidating opponent.  By matching him in person and in print, Johnson made a huge impact on all those who heard or read her, enabling millions to access and understand the arguments that the disability rights organization Not Dead Yet was propounding.  In particular, as an atheist Democrat, she helped non-disabled people understand that arguments against assisted suicide and selective abortion came not only from Christian conservatives, but  also from the disability rights community.

Johnson published two books.  The first, a memoir called Too Late to Die Young, was published in 2005 and contains eloquent descriptions of living with personal assistance, of fighting prejudice and of the value of life as a disabled person, what she called “bearing witness to our pleasures”.  In the preface, she wrote:

“For any Charleston lawyer, any Southern lawyer for that matter, storytelling skill comes so close to being a job requirement that maybe it should be tested in the bar exam.  Beyond that, for me, storytelling is a survival tool, a means of getting people to do what I want.”

A novel, Accidents of Nature, about a girl with cerebral palsy who had never known another disabled person until she went to camp, was published in 2006.

When Harriet McBryde Johnson died two years later, aged only 50, the fact that she had obituaries in both the New York Times and the Wall Street Journal demonstrates the impact her life and writing had had on American culture and politics.

Further information

Unspeakable conversations

It’s our story interview 

Ed Roberts (1939-1995)

“If I’m going to be a vegetable, I’m going to be an artichoke, prickly on the outside, with a big heart in the middle”

Before Ed Roberts contracted polio at the age of 14, he had wanted to be a marine, dragging his mother Zona to visit gun shops.  After he recovered from the disease, he was left paralysed from the neck down, able to move only two fingers and two toes.  He could barely breathe, and slept in an iron lung at night.  Yet despite this, he gained undergraduate and postgraduate degrees, worked in leadership roles in the disability movement and disability sector, married and had a son.   No wonder that he is considered a hero, and not just to disabled people.

As a teen, Ed Roberts attended school by means of a telephone connection which allowed him to listen, or speak, in class.  Then his mother insisted that he attend school for a few hours each week.  He learned to cope with the incessant staring from other students, who had never encountered a severely disabled person before.  Roberts simply decided that he would be like a star.  When it came to graduation, he encountered another obstacle: he was required to have credits in physical education and a driving licence to get his diploma.  He and his family successfully protested and he succeeded in graduating at last.

In 1962, Roberts was accepted at Berkeley.  However, he encountered another barrier when the University discovered that he was disabled.  The authorities said there would be no room for his iron lung in the student dorm.   As the Dean commented “We’ve tried cripples before but it didn’t work”.  The solution was for Roberts to live in an empty wing of Cowell hospital on campus.  He insisted that it would be a student accommodation, not a medical centre, and the Cowell Residence Program was born. 

Roberts was the first student with severe disability at Berkeley, but other disabled students soon joined him.   The fledgling disability rights group which resulted became known as “the Rolling Quads”.  They campaigned for community inclusion, and advocated for access improvements, for example the first kerb cut in America.  This was a time of political change in America.  The Rolling Quads would learn about stereotypes from the second wave feminists who were campaigning, and they pointed out to the Black Power activists that people with disabilities were also oppressed.  Meanwhile the Berkeley Physically Disabled Students Program became a national and global pioneer, offering  personal assistance services, equipment and other support to students.  Roberts’ mother Zona ran the assistance service, which recruited Viet Nam war conscientious objectors among others.   In 1967, she became a Berkeley student herself, and later she became a counsellor for disabled people.

Ed Roberts got his BA in 1964 and MA in 1966, and enrolled in a PhD program, all in Political Science.  But he left to teach at another college in California.  The Disabled Students Program led to an explosion of demand from other disabled people, who were not students, because there was no other option for finding assistance.  As a result, Berkeley Center for Independent Living was founded and Roberts returned to become its Executive Director. 

A friend of mine, Jean, remembered meeting Ed at Zona's house around this time: 

"I went in into the living room, and it was quite a big room, and there were six people in there, and one of them was in an iron lung, and the other five were in wheelchairs.  And they were watching a basketball game and Ed, in the iron lung, was watching it in a mirror over his head, upside down as it were, and they were all absolutely stoned out of their minds.  And I thought 'Oh my God!'.  I was just in a complete state of shock...  He was an extraordinary person because he wanted to have a life, and he felt he had a right to have a life.  

There’s a great story about him, when he first was accepted at UC Berkeley, he was described as 'a helpless cripple', and 'the first crippled person to go to UCB'…I just thought, after I’d got to know him a bit, it seemed so funny to me that someone would describe Ed as helpless, because a less helpless person you would never wish to meet, because he was so empowered to get what he wanted.  

Ed was quiet, and very articulate, and it sounds funny to say that, because his conversation was constantly interrupted with the breathing, the iron lung breathed for him, and when he was out of it, it was maybe four hours a  day at that point, he had to do this special breathing... so that his conversation was always interrupted by the sound of his breath... I was so conscious of his vulnerability in the world because just one thing goes wrong and he will suffocate, he will die.  

Partly because of his breathing problems there was nothing loud about him, and he was very definite, and he also made very good use of his words.  He was very economical with his words, because he had to be, so he would work out what he wanted to say and he would say it, and it had an impact when he said it."

In 1976, the Democrat Governor Jerry Brown appointed Roberts as Director of the California Department of Vocational Rehabilitation, a role he retained until the political landscape changed in 1983.  Ironically, it was this Department which had originally said that Roberts was too severely disabled to work.  While in Sacramento, Roberts married Catherine McDugan, an occupational therapist, and their son Lee was born in 1978.

After the political landscape changed and he left his State post, Ed Roberts was awarded a MacArthur Fellowship – one of their “genius awards” - giving him five years stipend plus academic funding.   He contributed the latter to the new World Institute on Disability, which he had founded alongside Judy Heumann and Joan Leon back in Berkeley.  Roberts remained director of WID for the rest of his life.  An inspirational figure to both the American and global disability movements, Roberts also contributed to the creation of Disabled People International in 1991. 

On March 14 1995, Ed Roberts died suddenly, either from a heart attack or stroke.  However, he is not forgotten.  The day of his birth, 23 January, has now become celebrated in America as Ed Roberts Day.  His wheelchair is in the Smithsonian Institution in Washington DC. 

In his memory, the Ed Roberts Campus was founded in Berkeley in 2011, bringing together the Centre for Independent Living, the World Institute on Disability, the Disability Rights and Education Development Fund, and other organisations in a fully accessible setting.  Berkeley remains globally renowned as the birthplace of modern disability rights activism, with Ed Roberts as the godfather of the movement.