When the disabled were segregated

In the final part of her series to mark disability history month, Victoria Brignell explores the pas

Today the emphasis in Britain and America is on inclusion and independent living for disabled people. Most (though sadly not all) disabled people who want to do so are able to live in their own home. But this wasn't always the case. For much of the 20th century, it was common in the UK and USA to segregate disabled people from the rest of society.

Large numbers of British and American disabled people were put away in institutions on the grounds that it was for their own good and the good of society. For example, in 1913, the passing of the Mental Incapacity Act in Britain led to around 40,000 men and women being locked away, having been deemed "feeble-minded" or "morally defective". Many disabled people living in hospitals, special schools and care homes are known to have suffered severe emotional and physical abuse.

Institutions regularly regarded their disabled residents as second-class citizens and showed them little respect. Staff often made little attempt to empathise with disabled people's experiences, denying them autonomy, choice and dignity and at times deliberately causing them pain and discomfort. In care homes and special schools for disabled children, there was sometimes hardly any attempt to meet the children's emotional needs or acknowledge their individual identities.

In Pride against Prejudice by Jenny Morris, one disabled woman recounts her childhood experiences of living in various institutions in England in the 1940s and 1950s. In one place, disabled children had to go outdoors at 6am every morning and weren't allowed to put bedclothes over themselves at night. For half the day they were not permitted to speak so they spent much of their time making paper darts and trying to throw messages to each other. Children never had their own toys and when they were sick they were expected to eat their own vomit. When the girl's father gave her a doll for her 11th birthday, the staff wouldn't allow her to keep it.

If the nurses took a dislike to a child they would hold her under the water in a bath until she started to go blue. A group of children would be assembled to watch what was happening. On one occasion, the nurses held a child under the water for too long and the child drowned. It was impossible for the children to tell the outside world about what went on inside the institution. All letters written by the children to their parents were censored and staff were always present when the children had visitors.

In the late 1960s, a report by Margaret Oswin into a British hospital which provided long-term residential care for children with "severe chronic handicaps" was highly critical of the service the children received. Her research discovered an impersonal regime where the children's possessions were numbered and staff did not play or talk effectively with the children. Not only did the institution have substandard toilets but children in the upstairs wards had no access to the grounds.

A woman who lived in a British "mental deficiency institution" from 1952 for 16 years was interviewed by D Atkinson, M Jackson and J Walmsley for their book Forgotten Lives. She remembered: "The worst thing was I couldn't wear my own clothes. You had to wear other people's". The beds were so close together there was no space for each resident to have their own locker. They had to help themselves to clothes from one big cupboard in the ward.

In the 1950s and 60s, at one hospital for people with mental health problems, patients could only have one bath a week and toilets only had half doors so people's feet and heads were visible. At another psychiatric hospital, people who did something wrong were forced to wear their nightgowns all day. Patients weren't allowed out and couldn't have visitors. If they wet themselves, they were punished. Staff would beat up patients in the toilets at night.

Institutions sometimes had humiliating admissions rituals. One care home for people with learning disabilities used to forcibly cut girls' hair when they arrived. A girl recalled with sadness: "I had lovely hair right down my back and they cut it." If residents put up resistance, they were tied in a chair while the cutting took place and then locked in a dark room for up to half an hour before being injected.

Some British special schools used to be harsh establishments with tough discipline and rudimentary conditions. At one school, children were referred to as animals and forced to wear dishevelled clothes. If they misbehaved they might be split up from their friends. One child with a spinal deformity, a heart condition and only one lung was made to go on long walks during which she was pushed and shoved by the care staff. Whenever she sat down in the road, exhausted with the effort and desperate for a rest, she was pulled to her feet again.

As late as the 1950s, a number of special schools are known to have punished children for bed-wetting. In one case a girl was forced to stand in a corner with her wet sheets tied around her neck. In another special school, children were given so little food, they resorted to eating toothpaste and grass.

For many disabled children, British hospitals in the first half of the 20th century were places of torture where medical professionals performed repeated and futile operations to try to "perfect" their bodies. There are many harrowing examples of excessive, unnecessary surgery in Humphries and Gordon's study Out Of Sight. One boy, born in 1918 with "severely deformed hands and feet which prevented him from walking", grew up in an institution for "crippled children" which regularly sent him to hospital for surgery.

"It was so frightening," he remembered later in life. "In and out of hospital all the time...The hospital would ring up and say, 'Right, let's have him in for another op.' And off I'd be sent for some more torture at the hospital." His parents could not afford to visit him because the hospital was such a long distance from where they lived. But even if the hospital had been closer it would not have made any difference because it didn't allow the children to have visitors anyway.

Children who contracted polio in Britain in the 1940s and 1950s often had to stay in hospital for lengthy periods and found it a traumatic experience. As well as enduring long separations from their parents, they commonly had to endure brutal nursing care. One man featured in T Gould's A Summer Plague and Anne Borsay's study Disability and Social Policy in Britain since 1750 described how, despite the fact he had difficulty swallowing and breathing, the nurses would hold his nose when he didn't want his food and force greens down his throat.

Care homes, long-stay hospitals and special schools in America were on the whole no better than their British counterparts. Before the 1960s, disabled Americans who also happened to be black were particularly likely to suffer in the hands of institutions. Many black disabled Americans had to endure harsh living conditions, poor medical treatment and overcrowding. According to a recent book by Rebecca Skloot, one long-stay hospital for black disabled people near Baltimore had more than 2,700 patients in the 1950s, 800 more than its official maximum capacity.

Black men, women and children with disabilities ranging from dementia to epilepsy were housed by this institution in poorly ventilated cell blocks and windowless basement rooms with drains on the floor instead of toilets. Those who had beds usually slept two or more to a mattress, lying head to foot. If someone misbehaved they were tied to their bed or kept in a locked room. Patients were not separated by age or sex and often included sex offenders. In 1948, the only year figures are available, its death rate was far higher than its discharge rate and the hospital averaged only one doctor for every 225 patients.

There are numerous stories of German doctors under the Nazi regime using disabled patients as subjects for horrific medical experiments. But an obsession with experimenting on disabled people was not confined to Germany. Hospitals in Britain and America were also keen to experiment on disabled people in the first half of the 20th century.

In the 1920s, teeth and tonsils were regularly extracted from people with mental health problems in Britain because it was thought these parts of the body might harbour infections which could generate mental impairments. Some British psychiatric patients were given malaria to see if it would cure their mental illness. Barbiturates were often administered in the 1930s to deliberately induce a prolonged narcosis. It was widely believed that this would break faulty thought patterns. A number of psychiatrists advocated insulin coma therapy - cutting the patient's blood sugar levels to send him or her into a deep state of unconsciousness. Cardiazol was also injected into some patients to stimulate an epileptic fit. A survey in 1938 showed that 92 British institutions were using insulin coma therapy and cardiazol with more than 3500 patients undergoing one or other of these treatments.

By the 1940s, electroconvulsive therapy had become popular among British doctors who believed that passing electrical currents through the brain was a quick and cheap way of producing a shock in their patients. They also regularly practised psychosurgery, the most common form of which involved severing nerve fibres within the brain. Despite the serious side-effects, more than 10,000 such leucotomies were carried out in the 12 years from 1942.

In America, some scientists used to regularly conduct research on disabled patients without their consent. At the hospital near Baltimore, one study involved taking x-ray images of the brains of epileptic children in the hospital. Researchers drilled holes into the skulls of these young patients, drained the fluid surrounding their brains, and then pumped air or helium into the skull in place of the fluid to allow clear x-rays of the brain to be taken. (This fluid protects the brain from damage but makes x-ray images cloudy). Not surprisingly, this technique produced horrendous side-effects including severe headaches, dizziness, seizures and vomiting - side-effects which could last for two to three months until the body naturally refilled the skull with fluid. In the worst cases, the technique caused permanent brain damage and paralysis. In another study, entitled "The Use of Deep Temporal Leads in the Study of Psychomotor Epilepsy", metal probes were inserted into patients' brains.

Of course, institutional abuse of disabled people occurred in other countries as well, not just in Britain and America. There is a moving account of neglect and cruelty at a long-stay hospital for children with cerebral palsy and other disabilities in Australia in the 1960s. This was a place where children were expected to live without any affection. Nurses were discouraged from cuddling the children and parents were not allowed to give their children toys or clothes. Little attempt was made to give the children any mental stimulation. Televisions were provided but for the benefit of the staff rather than the children. None of the staff took the trouble to try to communicate with those children who had speech impairments. Many of the children communicated with each other for years while the staff assumed they were making unintelligible, meaningless noises. If a child cried, the policy was to punish him or her. This punishment consisted of locking the crying child in a small dark storeroom.

Mealtimes were particularly barbaric. All the children were expected to eat lying down, even those who were capable of sitting up. The children's heads would rest on the nurse's lap with their bodies lying across a chair placed in front of the nurse's legs. They were fed like birds with their heads tilted back. As gravity pulled the food straight to the back of the throat, they didn't have any chance to chew. Children were not given any opportunity to shut their mouths and they ended up with food piled high on their faces because they couldn't swallow it at the rate the nurse spooned it in. Each nurse was required to feed 10 children in just one hour.

Of course, not all disabled people in Britain and America were consigned to living in institutions before the disability rights movement came into being. Some did live independently in the community or were helped by their families. But living outside an institution did not guarantee respect or dignity. The so-called 'Ugly Laws' in the USA used to place restrictions on the movement of people whose physical disability might offend or frighten able-bodied people. These laws prohibited the appearance of people who were 'diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person... in or on the public ways or other public places'.

American society also became an increasingly hostile place for deaf people during the 19th century. In the early 1800s, sign language was a widely used and valued language among teachers at schools for deaf people. But from the 1860s onwards, there was a concerted campaign to banish sign language from classrooms and replace it with lip reading and speech only. Oralists condemned sign language, claiming it encouraged deaf people to associate only with each other and to avoid the hard work of learning to communicate with people who spoke English. By the start of the 20th century 40% of American deaf students were being taught without the use of sign language. This rose to 80% by the end of World War I. Despite the fact that most deaf people rejected oralist philosophy, oralism remained the orthodoxy in American schools for deaf people until the 1970s.

In the 19th and early 20th centuries, disabled people in America were exploited as a source of entertainment. Freak shows of people with physical or mental abnormalities could be seen at circuses, fairs and carnivals. But this phenomenon continued for much longer than people think. As late as the 1970s, it was possible to see disabled people touring the USA as performers in a troupe called Sideshow. The members of this modern day freak to show included accident victims with no medical insurance and a Korean War veteran suffering from post-traumatic stress disorder who had tried to take his own life by overeating but then decided to make his living as the "fattest man in the world".

Institutionalisation is not a phenomenon of the dim and distant past either. The move towards widespread independent living in the community is a relatively recent development. Although criticisms of residential care grew in the years after 1945, there was ironically an expansion of segregation of disabled people after World War II.

As recently as 1982, a 23-year-old London woman who became tetraplegic was sent to live in a long-stay hospital. Her social worker found her a place at the Putney Home for Incurables and told her this was the only option available to her. She wasn't given any choice in the matter. The building had large rooms with high ceilings and minimalist, clinical decor.

After some deliberation, the tetraplegic woman decided instead to live in a hospital run by a religious charitable trust. Although the nursing care was of a high quality, she had no control over the most basic aspects of her life and no freedom of movement. She didn't even have a say over which posters decorated the wall by her bed. When the nurses put up religious posters, the woman didn't feel able to ask for them to be taken down. Eventually, when she plucked up the courage to refuse to attend the religious services held on the ward, she was classified as a 'difficult patient'.

During the 20th century, disabled people forced to live in institutions in Britain and America were often mistreated and denied the opportunity to make basic choices about how they lived their lives. Staff accounts, official reports, academic research and the testimonies of disabled people themselves all provide plentiful evidence of inhumane practices and violations of fundamental human rights.

In this column I've given just a few examples of the ways in which disabled people in institutions have been abused and neglected. They are just the tip of a very large iceberg. Throughout history, disabled people have been denied a voice, denied the chance to tell the outside world about their experiences. The real scale of the suffering will never be known.

While British and American disabled people still suffer discrimination, poverty and lack of opportunities, there is no doubt they are now able to participate in society to a degree that previous generations could only have dreamed about. When I compare my life with those of disabled people who have gone before me, I thank my lucky stars that I was born towards the end of the 20th century.

In this article, Victoria gives her personal views. These are not the views of the BBC.