Jenny's Story Jenny’s story is a celebration of what it means to lead an ordinary life. After 19 years of living in a locked hospital, where she was denied her basic human rights and freedoms as an individual, she has for the past 20 years lived independently in her own home, making the most of things that the majority of us take for granted, such as making friends, going shopping, visiting coffee shops and getting to know people in her local area. Jenny’s Ordinary Life book tells this story. Click here to read Jenny's Story. Several photoshoots took place during the production of Jenny’s book, capturing Jenny going about her day to day life, from shopping at Bilston Market to jewellery classes at the Dorothy Parkes Centre. These images encapsulate the normality of Jenny’s life in the Black Country, as an equal citizen and active participant in her community. Along the way, we also got an insight into Jenny’s vibrant social life, meeting the many individuals Jenny knows from around the area. At the same time, we also commissioned a portrait of Jenny, portraying her in her own home. 19 years in an institution At the age of 10, Jenny was taken away from her family to live in a children’s home. She was moved at 17 to a locked ward in an institution in the West Midlands called St Margaret’s long stay hospital for people with learning disabilities. She shared a hospital bedroom and bathroom, and could rarely go out as doors inside the hospital were locked and only staff had the keys. This experience was common for people with learning disabilities at the time, as people with learning disabilities have been ‘warehoused’ in long-stay hospitals, shut off from their families and a normal life, for more than 200 years. By 1969 there were 52,100 in-patient beds for people with learning disabilities and autistic people and only 4,850 places in community residential care. Living in a long-stay hospital people experienced impoverished lives. These images have been chosen to reflect life for people with learning disabilities trapped in hospitals. Photographs of St Margaret’s long-stay hospital courtesy of Peter Higginbotham. Keys - You were locked in and could not leave. You had no privacy as you didn’t have your own room. People who lived in the hospital remember the sound of the bunch of keys held by the nurses, as they patrolled the wards. Hospital rules - The hospital was based around rules for what you could and couldn’t do. A system of negative reinforcement underpinned staff practices; if you behaved in a way which was deemed to be acceptable, you might be given a privilege such as a trip to town. If you broke a rule, something would be withheld from you. If you challenged too much, you were chemically restrained with drugs and/or placed in a seclusion room. Dehumanising labels - People were seen as sub-human and described as ‘imbeciles’, ‘mentally retarded’, ‘educationally sub-normal’ and ‘mongol’ to name but a few. Labelling human beings in this way served to render them as inferior and outside of the ‘normal’, justifying centuries of mistreatment. Chemical cosh - If you were ‘challenging’ you were given an injection to modify your behaviour. Before injections were available, if you were seen as too ‘challenging’ your teeth were removed. This still goes on today. In one month in 2019, ‘restrictive interventions’ were used over 3,245 times. 910 of these restrictions were against children https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics/at-december-2019-mhsds-october-2019-final Bath time - People were lined up at set times to bathe and clean themselves. People did not have their own individual toiletries. When people dressed, they did not have their own clothes; they wore a uniform that was made on the hospital site. All of these experiences are dehumanising. Town parole - Not everyone was allowed to visit the local town. If you were allowed, you had to be accompanied by staff. If you challenged the hospital in any way, it was rare that you would get to go out. Any visit to the local town had to be approved by someone who was in a position of control over you. ‘Deficient’ children – Children as well as adults were forced to live in long-stay hospitals. There were wards for children and babies who lived without parents in a hospital environment, many going on to live in adult wards for their whole life. In Jan 2020, there were still 230 children with learning disabilities and/or autism in locked hospitals in England. 21st century - In January 2020, there were at least 2,185 people with a learning disability and/or autism are still locked away in inpatient units. This included 230 children. In the month of December 2019 alone, 95 people were admitted to hospital. The average total length of stay in an in-patient hospital is 5.4 years. https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics/at-december-2019-mhsds-october-2019-final To read our CEO’s thoughts on the dystopian nature of hospitalisation of human beings, click here. Jenny: From locked-up to locked down Life in lock-down has taken Jenny back 19 years to when she lived at St Margaret’s. The social distancing measures that constitute the nation’s ‘new normal’, such as limitations on when and where one can go, and where and with whom one can meet, offer just a glimpse into Jenny’s ‘old normal’, which was an existence defined by restriction. "It’s like being back at the hospital. You can’t go out and its getting me down. I can’t wait to get to Primark! I’ll buy the whole shop!" – Jenny, speaking at the window. Click here to hear Jenny talk about what an ordinary life means to her Click here to hear Jenny talk about what shehas missed during lockdown.