My sister has Fragile X syndrome. The barriers to an ordinary life are institutional

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.

With the right support and an enlightened attitude that’s mindful of people’s human rights, people with learning disabilities and autism can enjoy the things most of us take for granted. I wrote an opinion piece about this for the Guardian.

The article also describes the short film Raana made for a recent conference run by charity Stay Up Late, a ground breaking event where everyone who spoke had a learning disability or autism, and most of the 130-strong audience worked in social care.  My sister’s film shows what she can do when she has the right support, sometging that will also be reflected in my forthcoming book, Made Possible.

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.”

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