Testimonies from the past

Dear Debriefers,

I’m a British historian who has worked for many years on histories of global feminisms. About a decade ago, I became intrigued by the stories of disabled women’s lives that came up in my research, and they led me into disability history.

We know it’s a history that has many painful stories of stigma, exclusion and institutionalisation. But that doesn’t sum up the past. Disabled people have a great deal more to tell us about their lives and hopes.

I want to take you with me on what has become a compulsive quest – my search for memoirs and autobiographies written by disabled people who lived in or migrated to Britain. Even as the present day sees a new wave of disability media, there’s a wealth of stories told by disabled people in the past.

These stories show how important it is to hear directly the testimony of disabled people. Experiences from their lives challenge and contradict what we know from the perspectives of medical institutions or policy professionals.

Disability Debrief is made possible by reader support. Thanks to Catherine for a new contribution.

Brief sketch of the life

Edward Albert was a black immigrant in London in the middle of the nineteenth century. He was a Jamaican-born double-leg amputee and lived precariously by cleaning a road crossing. Originally he’d been a sailor, but after frost-bite at sea, his shipmates put his feet in a hot oven to warm them, leading to dangerous burns.

Too injured to sail, he was abandoned in Chile, but made his own way back to London to claim “his rights” to compensation. He printed his story in an eight-page book titled Brief sketch of the life of Edward Albert! A native of Kingston Jamaica. Showing the hardships he underwent and the sufferings he endured in having both legs amputated. 

Albert sold this book to passers-by, and also retold his story on a small placard around his neck. His life narrative had a direct value – in terms of earning his living and securing personal dignity.

Many other disabled people have followed him by publishing their stories. I’ve found around 120 memoirs written by disabled people, with publication dates from 1821 up to the present day. They’re written by men and women in equal numbers, and by people with all kinds of impairment. The largest spike is in the 1980s when the 1981 UN year of disabled people gave a boost to their visibility and sense that their lives should be written down.

“Writing never did more for a human being”

In 1931, George Thomas published an account of his life with muscular dystrophy. He lived in Soho, London with his family, three of whom also had muscular dystrophy. They were supported by his father, a waste collector for the local council, and lived in poor conditions in a condemned house.

For the past decade Thomas had been at home, after losing “the freedom of the out of doors”. He described his life as being “deadly monotonous” and like being “buried alive”. He was constantly trying to meet people and to earn money through writing music. Cultural pursuits were one of the ways he countered stigma:

“educated people [who] when they come in contact with permanent invalidism especially in young people, always expect to find the object of their commiseration in a rather backward state mentally.”

He was proud, independent and had an ironic, class-conscious take on his situation:

“Like my more fortunate fellows, the ‘owner’ class, I am a parasite but a parasite with a clear conscience. When pressure of economic misfortune causes this little home to break up, I shall be quite prepared to go to an institution thoughtfully provided by the local authorities. I shall go with my head held high, for I shall know that not even an overwhelming physical misfortune prevented me from trying to get a ‘plum’ from the pie of life.”  

Eventually, he published his memoir: “Writing never did more for a human being than it has done, and is still doing, for me. It has enabled me to find myself.”

As though they were not present

A lot of writing about disabled people’s lives is done as though they were not present. Policy and legislative provisions are often so far from being a reality that organising history around them does violence to the truth of disabled people’s experiences.

Many books about British disability history are still organised around the perspectives of medical institutions and policy professionals. They tell us about government tussles over the cost of prosthetics for veterans, or the operation of the UK’s employment quota for disabled people.

But this is useless knowledge if, as so many memoirs tell us, prosthetic limbs were not suited to disabled people’s needs and ended up abandoned in a cupboard, or the quota system judged disabled people as unemployable and ended up preventing them from working.  

Some remarkable results

The British government produces reassuring descriptions of its work for disabled people, and has done for a long time. For example, in a 1959 statement, it described the Disablement Resettlement Officer [DRO] role. It was a “key figure in the Ministry’s services for the disabled”:

“It is he who acts as a link between the individual disabled person and the various employment services which are available to help him. […] DROs have with perseverance achieved some remarkable results in this field.”

But it’s in stark contrast with the experiences of disabled people. Felicity Lane-Fox was a wheelchair user and visited her DRO in 1964. She had already successfully worked in political research and was looking for work in journalism or publishing. The DRO told her that she was being unrealistic and in fact any such jobs would be snapped up by himself and his colleagues.

An hour-long lecture followed, recommending that she just draw benefits and not try to work: “All he did was to emphasise the painfully obvious obstacles that had always faced me.” Lane-Fox went on to become a radio phone-in host and was eventually appointed to the House of Lords. 

Recording a life

Simply being able to materially record a life was not a simple matter. Authors found many ingenious means.

William Simpson was a pilot shot down in the Battle of Britain, suffering serious burns. He wrote about his experiences in 1942, using a wax cylinder dictaphone. It had a speaking tube, which Simpson found difficult to hold between his wrists.

The technology was clumsy and required constant external help to change the cylinders. But he felt compelled to write two books in quick succession, “driven on by a force that is almost entirely nervous”. 

By the 1970s, Christine Smith could use a cassette recorder. She had been on TV, featured for writing and painting using her mouth. Encouraged to write her life story, the technology still wasn’t easy for her:

“To start recording on it, you have to press down two buttons, four buttons apart. It seemed impossible, I couldn't do it with my hands so we had to find something to enable me to do it with my mouth. After much thinking and searching, my dad found the answer. He came home one evening and said that he had seen a piece of equipment used by fishermen to prop up their fishing rods. If we cut it shorter he was sure I would be able to work the recorder. It worked.”

No false modesty

What kind of things did disabled people write about? Many framed their stories using conventional narratives of tragedy, courage and overcoming. But their lives were much richer than this, and include content that was far from conventional.

Some memoirs can suddenly move me to tears. Most are also darkly funny. Walter Barrett, severely impaired in his breathing after experiencing “Farmer’s Lung” as a teenager, described being unemployed in the 1929 recession while his wife worked as a district nurse. He took on the housework and cooking:

“I had no false modesty as I pegged out the washing on the line. I would call out to gaping onlookers: ‘only a few more smalls and I'm finished.’”

The memoirs feature blistering attacks on discrimination, accounts of inadequate education, and solidarities with friends or family. I found a great deal that I didn’t expect. For example, the huge popularity of radio was widespread across many life stories.

Radio provided an early kind of social media for people who were sometimes cut off from other kinds of social interactions. Radio Times was produced in Braille from 1927. George Thomas and his family adored the radio in the 1920s, though he worried that “Wireless is a drug, for it is so easy to take in that one feels inclined to let other things go by the board.”

Years later, Mike Brace described working for the civil service as a typist, a role often assigned to blind people. Managers kept him underemployed, and he turned to the radio: “I became a walking Radio Times and an authority on every programme.” He ended up selling ladies’ clothing in a “tally round” amongst co-workers and ran an office sweepstake, activities that earned him more than his wages from typing.

Disabled people turned radio, including Citizens Band (CB) radio, into a dynamic, accessible medium that spanned the globe, connecting with audiences and radio hams all over the world. It is not only digital and social media that have the potential to create radical networks.

“I felt I was very much on view”

The memoirs also show the intensity of mainstream media interest in disabled people, across newspapers, the radio and television. Christine Smith was not alone in a media appearance. Several memoirs had “As seen on TV” emblazoned on their front covers.

One of the most popular TV series in the UK, This is Your Life, regularly featured disabled people. Elizabeth Twistington-Higgins, was a polio survivor who wrote her memoir after featuring on the programme in 1961. Her brief celebrity was evident as she was driven back to her home in an isolation hospital:

“Travelling in a hearse-like Daimler ambulance, I felt I was very much on view. All along the route, people recognised me; they stood up in the buses and along the streets, waving as I passed. I was staggered to think that my brief appearance on television had brought this publicity. The nurse beside me acknowledged these friendly greetings. She became quite tired waving continuously on my behalf.”

Some people found the media interest intrusive or manipulative. Patronising forewords talk predictably of “immense courage”. Sensational accounts of accidents and illness were widespread across television and print. They were usually followed by moralising about stoicism and good humour.

Memoirists had to work hard to maintain control over their life stories. Bob Giddings, also a polio survivor, hated how he was depicted on television in 1967. He described in his autobiography the deceptive editing that gave viewers “the impression that here was someone in a wheelchair just having a good moan.” The producer, in his view, “showed little interest in the reality of disability” and relied on “false heroics of having got over it.”

Constructively helpful compassion

One of the important takeaways from my reading spree is an expanded sense of the politics of disability. The range of positions is important to acknowledge, to avoid any sense that disabled people all agree.

Felicity Lane-Fox, for example, was heavily involved in the Conservative Party and in the Disablement Income Group (DIG). Founded in 1965, DIG was a pan-impairment, disabled-led pressure group calling for better welfare benefits for disabled people. Lane-Fox used it to campaign for a minister for the disabled at the Cabinet level, a resource that still is not fully secured today.

Her contemporaries in the Union of the Physically Impaired Against Segregation (UPIAS) are seen as originators in the UK of the “social model” of disability. But Lane-Fox rejected their more militant activism as arrogant and damaging. She preferred what she called “constructively helpful compassion via radio”.   

A better understanding

For Christine Smith, as for many, it was ultimately the stigma of officialdom that pushed her into writing. She had initially felt that the idea of her writing a book was “a joke, because I feel it is very presumptuous and conceited of me to do so.”

“But it became a reality in my mind when the attitude of an official towards me, inferring that I didn't occupy my mind enough, gave me the final push. My main purpose in writing this account of my life, which is first and foremost a family story, is to create a better understanding of disabled people and their problems.”

More starkly, Pauline Wiltshire wanted to use her 1985 autobiography to “prove to people that she was not a fool, and that she could lead a normal life.” As a Black woman with mobility and speech impairment, she was fed up with being labelled as having intellectual disabilities by officials in England, where she had migrated in the 1970s. She reflected on how she had provided care for other children when living in a hospital in her birthplace, Jamaica, for 4 years. Aged 10, she had been called “mummy” by other children: “there was nothing much wrong with me, myself, to be able to help others who were worse off”.

Though she could not read or write, dictating a book was a project that allowed her to assert her value, pushing back against the judgements she recalled voiced by others: “Oh how can she write a book? I didn’t even think she could talk.”

Like Pauline, David Barron was also labelled as having intellectual disabilities. He charted his life in A Price to be Born, published in 1996. It tells of his institutionalisation in 1939, when he was aged 13. He was interned on an adult ward at Whixley Mid-Yorkshire Mental Deficiency Institution. He didn’t emerge for over ten years, and then had to fight to be released from being on “Licence” and thus at risk of being returned to Whixley for the slightest reason.

Revolutionary reading

These books are not lost, but they are invisible. Almost all take days to come out of library storage when I request them. Most look as though they have never been opened. But these are amazing stories, and I tell everyone around me to read them. See below for an invitation to where you can start.

I want to be the receptive audience that these authors hoped for. So many of them were rarely listened to in their own lifetimes. But I’m aware that I need to actively check my privilege in this pursuit of disabled people’s experiences. I’m a non-disabled reader and can choose when I start or stop reading.

The authors remind readers that disability never stops for them. They will never not encounter stares, be asked intrusive questions, or have to plan around access to toilets, traversing kerbstones or communication assistance.

There is dignity and moral comfort in telling one’s life story. And these authors often wrote in the hope that it would change how society treated people like them. Their writing reveals how disabled people are gaslit, told that they are “empowered” by benefit systems, schools, technologies or experts. It shows us what it was like to live within welfare structures or social environments which did not function as planned or meet people’s needs.

All too often it is only the powerful who get to tell stories. This profoundly shapes how we see the world. But writing history without the testimony of ordinary disabled people is just smoke and mirrors.

Life writing shows disabled people in three dimensions. It gives value to lives that were judged to be without value, and this makes it revolutionary reading.

Lucy

An invitation to further reading

These are the memoirs I’ve mentioned, and there are scores more waiting for new audiences:

• W H Barrett (Walter Henry). A Fenman’s Story. London: Routledge & K. Paul, 1965.
• Barron, David. A Price to Be Born: My Childhood and Life in a Mental Institution. Mencap Northern Division, 1996.
• Brace, Mike. Where There’s a Will. London: Souvenir Press, 1980.
• Giddings, Robert. You Should See Me in Pyjamas. London: Hamilton, 1981.
• Higgins, Elizabeth Twistington. Still Life: The Story of a Struggle with Disablement. London: Mowbray, 1969.
• Lane-Fox, Felicity. Triumphing over Disability. Brighton: Book Guild, 2008.
• Simpson, William. The Way of Recovery. London: H. Hamilton, 1944.
• Smith, Christine. Clouds Got in My Way. London: Eyre & Spottiswoode, 1981.
• Thomas, George. A Tenement in Soho: Or, Two Flights Up. London: J. Cape, 1931.
• Wilkie, Ellen. A Pocketful of Dynamite. London: Hodder & Stoughton, 1990.
• Wiltshire, Pauline. Living and Winning. London: Centreprise, 1985. 

Here are some recent disability and deaf histories:

• Esme Cleall, ed. Global Histories of Disability, 1700-2015: Power, Place and People. Routledge, 2023.
• Simon Jarrett. Those They Called Idiots: The Idea of the Disabled Mind from 1700 to the Present Day. Reaktion Books, 2020.
• David M. Turner and Daniel Blackie. Disability in the Industrial Revolution: Physical Impairment in British Coalmining, 1780–1880. Manchester University Press, 2018.
• Jaipreet Virdi. Hearing Happiness: Deafness Cures in History. University of Chicago Press, 2020.
• Wei Yu Wayne Tan. Blind in Early Modern Japan: Disability, Medicine, and Identity. University of Michigan Press, 2022.
• Jan Walmsley and Simon Jarrett, eds. Intellectual Disability in the Twentieth Century: Transnational Perspectives on People, Policy, and Practice. Policy Press, 2019. 

And the Disability Debrief library has curated links on history and disability.

Acknowledgements

Thanks to Kinanty Andini for the illustration.

Thanks to Peter Torres Fremlin for our conversations and his editorial input, and the many suggestions of autobiographies from friends and colleagues including Coreen McGuire and Sarah Trim West at Brunel Archives and Special Collections.

Thanks also to the readers and organisations whose support makes this work possible.