Shocking experience shapes my passion for change
My first experience of walking into Dartford’s Darenth Park Hospital in the late 1980s as a speech and language therapist for adults with learning disabilities, was both incredibly depressing and shocking.
It was the beginning of my social care career and the early stages of the learning disability hospital resettlement programmes. The institution was desperately rundown and on its way to closure. Seeing the enormous wards with so many people with complex disabilities in such impoverished and restricted environments was horrible. I couldn’t believe this was happening in the UK. This raw experience was, however, instrumental in shaping my passion for inclusion and change, which carries on today.
With the incoming 1990 Community Care Act, I naively thought small-scale, community-based support would automatically lead to integration and connectedness for people with learning disabilities. To be fair, this confidence was rewarded time and again with heartwarming stories of people growing in independence. However, nearly three decades later as CEO at charity Brandon Trust, I've come to realise that while the large institutions are closed, and most people are physically living in their communities, all too often they remain isolated. I’ve seen how relatively progressive community-based services can sometimes slip backwards and very quickly become institutionalised. I believe everybody working in the field needs stimulation and support to maintain forward momentum. Support that’s fresh. Sometimes, support that looks innovative in its early days, can instead quickly go backwards.
My belief is people with learning disabilities are still very much a marginalised group, who have some of the hardest barriers to break through. Frequently they are isolated, like invisible citizens, because they have the same people supporting them day in, day out, following the same routines, and never asking the 'what next' questions. In my eyes, this is the next big challenge for our sector, and certainly my charity. Unless people are connecting to their communities they can become lonely and isolated with little stimulation. In addition, this very loneliness and isolation perpetuates the ignorance so rife amongst the rest of us, and deprives our communities of invaluable contributions.
The journey and cultural change for people with learning disabilities continues at Brandon Trust. A new phase is beginning. It’s encouraging me to see how strongly individuals are getting involved and being empowered in many different ways. We recently brought together 300 of the people we support to ask about the future. Many hopes were expressed that did not surprise us, such as the desire to work. However, by far the biggest issue for many was the desire to develop relationships and friendships with people beyond their paid staff and families. Being truly connected to society meant not just to be doing stuff in their communities, but meaning something to those people in their communities – is this not a basic human need common to us all? To put it simply, they told us they were lonely.
As a result, at Brandon Trust, we're now having extensive, ongoing conversations with those we support about relationships, learning more about people’s sense of loneliness, and exploring how we can support people to make genuine connections.
I’ve spent my whole working life, in one way or another, providing support to people with learning disabilities and there have been times when I wanted to move away from social care, particularly with the repeated cycle of people going backwards as a result of institutional behaviour, as seen in the Winterbourne View tragedy. However, the contrast and thrill is to see the great moments when people with learning disabilities are shaping their own lives and driving that forward themselves. This is the real future.