This week I met a man called Max. He was energetic, articulate, humorous and very sad. His daughter, Sarah, has Down's syndrome. And for the last 25 years, her extra gene has dominated family life, often pushing aside his needs and those of his wife and other child. As for many families with children with severe learning disabilities, daily life is one long struggle to find activities, care and financial support and being ready to drop everything when things go wrong.
I met Max as part of a project I'm doing for Ealing Mencap to create some messaging for their new website. Over the last couple of weeks I've run workshops and interviewed many people who are linked with the charity in some way. Most inspiringly - the people who use their services. I was anxious about running a workshop for them because I didn't know what to expect. How should I talk to them? Would I say something politically incorrect? Would there be long silences? Somehow, I've got through life having barely met anyone with learning disabilities or associated conditions like Down's and autism.
It's easy to take what we consider the ordinary things in life for granted. Things like working out how to get around on public transport. And rerouting yourself if you go wrong. Applying for a job, getting through the interview process successfully and learning new tasks when you start. And most important of all, making friends. It's not so easy to make even a momentary connection with someone when you find it difficult to communicate or are likely to experience rejection because you're different. Or because people like me are simply scared they'll get it wrong. I'd never seen first hand how difficult all these things are for someone with learning disabilities. Or how the expertise and empathy of the people working for an organisation like Ealing Mencap can help them overcome all these huge obstacles.
Among the people I met were three 14-year old schoolboys, all with fairly mild learning disabilities. I asked them what they'd learnt from the travel training that Ealing Mencap had provided. A hand shot up. "I can get to school on my own now. On the bus. I'm an independent traveller!" The other two took longer to get warmed up. One of them remained virtually silent, simply agreeing with what the others had said when I asked him direct questions. But towards the end, I could see he was bursting to say something. And it finally came out. Every detail of every bus route he could take. Which bus he took to school. How he could take the E3 to get back if he took the E8 by mistake. Before Ealing Mencap gave them travel training, the boys had depended on parents or on council transport to get to and from school, which singled them out as different. Travel training has given them independence and confidence, which will also serve them well when they leave school.
Getting a paid job can seem like an impossible dream to someone with learning disabilities. Ealing Mencap run training for employment. It covers things like how to apply for a job and how to act in the workplace.They have a shop that's open to the public where people can practice retail and customer service skills. They partner with many businesses and charities to provide internships and structured work experience for people with learning disabilities. Job coaches support them throughout. The partnership Ealing Mencap have with Hilton Hotels, for example, takes 12 interns a year and has an excellent record of its graduates getting (and keeping) paid jobs at the end of it.
Many adults with learning disabilities are completely isolated from people their age. They often live with parents (some of whom are elderly and becoming frail). They can't safely go out to the cinema or a gig. And many of them have no one to go with. They are unlikely to get chatting to someone in a bar or coffee shop. And they certainly can't negotiate a dating app. So they are lonely. Of all the many people I met during this process, the one who went to my heart most was a guy called Ally. He has very poor communication skills and trouble understanding even simple questions. I'd asked him (in a number of different ways) what he liked most about coming to Ealing Mencap's daytime activities for adults. He stared at me for a long time, trying to articulate his answer. "Talking" he said eventually. "Friends".
When I set my 60th birthday challenge of running 70 miles of the Grand Union Canal over 4 days, my intention was to find local charity associated with homelessness or mental health. But having seen what Ealing Mencap does for people, I've decided to raise funds for them. I'll be setting up a Just Giving page nearer the time...