The system in the UK got it wrong once and failed badly many thousands of people with learning disabilities. But now I worry deeply that we may have got it wrong again.
I’ve had a career spanning the period ushered in by community care. In my 20s, I was ‘bright-eyed and bushy-tailed’ championing the end of the big institutions brought in by the 1990 Community Care Act. I naively thought that small scale community-based support would automatically lead to integration and connectedness for people with learning disabilities. Now, I agree that there are some excellent examples of where this has become a reality, but I realise how wrong I have been in terms of the extent to which this has become the norm.
Soon after I left university, my job was preparing people with learning disabilities to leave long-stay hospitals and move into ordinary homes in local communities with support.
Although I saw so many shocking and often inhumane scenes within the hospitals, I was confident about the active and rich lives people would, in time, have. Thankfully, this confidence was regularly rewarded with heart-warming personal tales of independence and lifestyles that matched those of society, from the mundane to the complex. But where is this now?
We like to believe that everybody is valued and involved in life, that our society is enlightened, modern and democratic. But some members of society still have no voice. People with learning disabilities in the UK are invisible; 93 out of every 100 have no job, many experience ‘hate and mate crime’ and over 3,000 are still ‘locked-up’ within ‘Assessment and Treatment Units’.
Our limited exposure to people with learning disabilities has led to most of us not even knowing what a learning disability is. What’s worse is people are still filling in the gaps with a range of unhelpful, ill-informed and negative stereotypes. When our paths do cross, we feel uncomfortable and all too often categorise them as ‘the other’.
At Brandon Trust, we brought together 300 people with learning disabilities to ask them about their achievements, the quality of their support and what they hoped to achieve in the future. Many hopes were expressed about the future that did not surprise us. These included the desire to work. However, the biggest issue was the desire to develop relationships and friendships beyond paid staff and families. People want to be truly connected to society, to mean something to people in their communities. This is a basic human need.
We now have extensive and ongoing conversations with those we support about relationships, exploring people’s sense of loneliness and how we can support them to genuinely connect with people.
This loneliness and isolation perpetuates the ignorance that is so rife in society and deprives our communities of the valuable contributions of people with learning disabilities.
Many people with learning disabilities only interact with those paid to care for them. These relationships are important and rewarding, but they aren’t enough. We all need to see and know people who are interested in us, for us, not because they are paid to look after us.
Reflecting on myself and my career, are we, the people and organisations providing social care, and the sector itself part of the problem?
In stepping in to provide support, however well-meaning, much of this support becomes an end in itself. Support should act as a catalyst, connecting people on to other non-paid people in the community. Are we creating a form of dependence and furthering isolation?
I am a passionate supporter of the principles of the Welfare State and creating a fairer society. But I wonder whether, in its own way, it too has created a dependence on formal support, has contributed to the eating away of communities and personal responsibility towards others. To add to that, how often do we hear people who care for family or friends talk about the money they are saving the Government?
The last coalition Government’s short-lived and mistrusted Big Society agenda touched on some of these ideas and held the principle of a strong community as the bedrock of a healthy and integrated society.
Rethink our priorities
It’s time to re-think our priorities; we must respond to people’s deep cries for relationships. We must find ways to enable people to genuinely connect with others in their communities; people who can see beyond their disability, share common interests and recognise their shared humanity.
At Brandon Trust, we are establishing a range of volunteering programmes aiming to connect people to buddies. With the motto, ‘Live Free’, we are looking to support people with disabilities to take their proper place in life.
However, if these ideals are to work, society needs to be ready to change, ready to welcome people into their communities.
Providers can offer opportunities for people to get involved and even training. However, as citizens, neighbours, family and friends we all need to do more. We need to play our part.
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