The Simon Heng Column: A service user’s view of social care

Lord Ashley’s Independent Living Bill was published last week. If it becomes law, we could see this as the culmination of a complete change in attitude in this country towards disabilities.

An Independent Living Act would go a long way to dispel the idea that disabled people are the “deserving” unfortunates in our society; deserving of pity, deserving of welfare.

It could also rid this country of the idea that disabled people are an inconvenience. Inconvenient, because our very presence in the community challenges the idea of a norm, and inconvenient because we need to be cared for, and we don’t wish to be treated like children in the process.

I’m sure there are some people who still think that life was much simpler when people with mental health problems, learning difficulties or physical disabilities could be shut away in asylums. Out of sight, and out of mind.

From the point of view of human rights, how can it be that, in a democratic society, some people would be routinely denied freedoms that everyone else takes for granted, purely because of their mental or physical condition?

Here are just three examples: the freedom to choose where to live, the choice of how to define oneself and one’s condition, the right to choose – for people who need physical care – who is allowed to perform intimate care.

When I became disabled, and I lost the ability to earn a living, I quickly learned that my freedom to make these choices was taken away arbitrarily. The more money you have increases the choices available to you, and most disabled people have low incomes. Although the bill doesn’t address the relationship between disability and poverty, it is an attempt to redress the balance.

People assume that the anger and depression that accompanies a disability is grief over the inability to function like other people. This might be true for most of us. But my anger, and that of many others, has been more over the loss of the capacity to be self-directed, and the loss of access to society.


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