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You can find the current article at its original source at https://www.theguardian.com/society/2019/apr/23/sister-fragile-x-syndrome-barriers-ordinary-life-institional-learning-disability
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| My sister has Fragile X syndrome. The barriers to an ordinary life are institutional | My sister has Fragile X syndrome. The barriers to an ordinary life are institutional |
| (about 1 hour later) | |
| What makes an “ordinary life” for the UK’s 1.5 million learning disabled people? Having relationships, choosing where to live or when to go out? Things that most of us take for granted are often denied to people like my sister Raana, who has Fragile X syndrome, the most common inherited cause of learning disability. | What makes an “ordinary life” for the UK’s 1.5 million learning disabled people? Having relationships, choosing where to live or when to go out? Things that most of us take for granted are often denied to people like my sister Raana, who has Fragile X syndrome, the most common inherited cause of learning disability. |
| Raana, who lives near Bournemouth in supported housing, recently made a short film about doing things she once found too difficult, such as catching a bus, doing her own shopping, eating out and paying the bill. It was screened earlier this month at a conference where everyone who spoke had a learning disability or autism, and most of the 130-strong audience worked in social care. Other speakers included dancehall fan Ben Adams, who explained how his love of music brought him friends, and Laura Small, who spoke with pride about being a parent. All the stories revealed how lives are transformed when someone’s aspirations are supported by flexible, passionate care staff. | Raana, who lives near Bournemouth in supported housing, recently made a short film about doing things she once found too difficult, such as catching a bus, doing her own shopping, eating out and paying the bill. It was screened earlier this month at a conference where everyone who spoke had a learning disability or autism, and most of the 130-strong audience worked in social care. Other speakers included dancehall fan Ben Adams, who explained how his love of music brought him friends, and Laura Small, who spoke with pride about being a parent. All the stories revealed how lives are transformed when someone’s aspirations are supported by flexible, passionate care staff. |
| Decision-makers who commission, or run, health and care services need to rethink their priorities | Decision-makers who commission, or run, health and care services need to rethink their priorities |
| At best, conferences about people with a learning disability and autism include a tokenistic guest speaker. This event put them at the heart of proceedings, reflecting the ordinary life manifesto drawn up by event organisers, charity Stay Up Late. | At best, conferences about people with a learning disability and autism include a tokenistic guest speaker. This event put them at the heart of proceedings, reflecting the ordinary life manifesto drawn up by event organisers, charity Stay Up Late. |
| The main barrier to an ordinary life is an institutional approach to care, like staff shifts that end too early to take people to evening events. Claire Summerfield, support officer at Leicestershire county council’s learning disability partnership board, said: “It’s so frustrating to have professionals holding people back – that’s what we need to break down.” Ann Fudge Schormans, a social work professor at McMaster University in Canada, said: “Conferences are very much about the professionals, the academics. The Stay Up Late event could be the start of something new.” | The main barrier to an ordinary life is an institutional approach to care, like staff shifts that end too early to take people to evening events. Claire Summerfield, support officer at Leicestershire county council’s learning disability partnership board, said: “It’s so frustrating to have professionals holding people back – that’s what we need to break down.” Ann Fudge Schormans, a social work professor at McMaster University in Canada, said: “Conferences are very much about the professionals, the academics. The Stay Up Late event could be the start of something new.” |
| Despite the closure in the 1980s of old-style institutions the “ordinary life” movement began in the 1980s for example), many challenges remain. For example, almost 2,300 people are still in inpatient assessment and treatment units (ATUs), almost eight years after abuse was exposed at Winterbourne View. This led the government to introduce a programme to move people out of ATUs into communities. Described as an “abject failure” by Norman Lamb, the minster then responsible, the transfer deadline keeps being extended and missed, and is now not until 2024.. The same week as the (un)Ordinary conference, the parliamentary joint committee on human rights heard evidence in its inquiry into the inappropriate placement of learning disabled and autistic people in mental health hospitals. | |
| ‘You can’t rehabilitate someone into society when they’re locked away’ | Saba Salman | ‘You can’t rehabilitate someone into society when they’re locked away’ | Saba Salman |
| It was also the same week as an inquest into the death of Giuseppe “Joe” Ulleri, who had Down’s syndrome. The inquest ruled that he was neglected by hospital staff after being deprived of food for 19 days. His family said that his death proved how people with learning disabilities are treated as “second-class citizens”. | It was also the same week as an inquest into the death of Giuseppe “Joe” Ulleri, who had Down’s syndrome. The inquest ruled that he was neglected by hospital staff after being deprived of food for 19 days. His family said that his death proved how people with learning disabilities are treated as “second-class citizens”. |
| The event was about radically altering the power dynamic between people who need support and those regarded as the experts on their lives. This disruption of the status quo is vital. It deserves to be replicated across the country so that decision-makers who commission, or run, health and care services might rethink their priorities and look beyond performance indicators, budgets and staff rotas, instead making it their ultimate mission to help people lead an ordinary life. As Andrew Walker from Stay Up Late’s quality checking team says: “We’re the experts. We’re the people who want to live a life … we’re no different from anyone else. We should be treated the same.” | The event was about radically altering the power dynamic between people who need support and those regarded as the experts on their lives. This disruption of the status quo is vital. It deserves to be replicated across the country so that decision-makers who commission, or run, health and care services might rethink their priorities and look beyond performance indicators, budgets and staff rotas, instead making it their ultimate mission to help people lead an ordinary life. As Andrew Walker from Stay Up Late’s quality checking team says: “We’re the experts. We’re the people who want to live a life … we’re no different from anyone else. We should be treated the same.” |
| • Saba Salman is is a social affairs journalist who specialises in learning disability issues | • Saba Salman is is a social affairs journalist who specialises in learning disability issues |
| Learning disability | Learning disability |
| Autism | Autism |
| Disability | Disability |
| Care workers | Care workers |
| Social care | Social care |
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