Opinion: An advocate for disabled people

I did not choose to become an advocate for disabled and disadvantaged people. It just happened that when I heard people around me talking from a position of ignorance, I couldn’t keep my mouth shut.

I remember when I was 19, being at a conference about disabled people and personal relationships. A day centre manager told us that he didn’t allow his “patients” to start or develop romantic or sexual relationships and I exploded with indignation. These were adults he was talking about, not small children! He did not much appreciate my outburst, but members of the group did – so much so that I was hugged by a doctor who told me, tearfully, that I had transformed her thinking. I was amazed. I didn’t know doctors did hugging.

It seemed to me that my big mouth could be useful because so many of my disabled friends and comrades had been so intimidated that they found it difficult to express their thinking in public, so I have continued to speak up wherever it made sense.

However, since I started challenging the non-disabled world I have been continuously told: “it is all right for you – clever, articulate, and only physically disabled”. It always comes from the mouths of non-disabled people who are claiming to represent the interests of others who cannot speak for themselves. This interest usually means continuing to “protect” them in segregated schools and services. There is little that can make me as angry as that accusation.

First, it is the assumption that everything I know or care about comes only from my own individual experience and that I know nothing outside it. In reality, I have had more personal relationships with disabled people than any able-bodied person I know.

From age three I was in hospital with them, sent to special school with them, been a member of the disability movement with them, worked alongside them. I have known people of all ages, types and levels of impairments and backgrounds. From this rich community many of us are trying to communicate what we have learned to those who still hold a great deal of power over our lives.

Many of us are dismissed in similar ways. People with learning difficulties at last managed to form their own organisation People First and started to be powerful self-advocates for real change. And what do people say? “Ah, but they are the most able – they are not really typical”.

There is a second issue. Throughout history, each oppressed group has had to organise itself and learn how to challenge unjust laws and practices. When each group begins to organise it is inevitable that the first leaders will be those most able and best resourced from within the group, the suffragettes being an example of this.

The disability movement was largely initiated by white, middle-class males who acquired their impairments as adults. They had grown up as able-bodied young people, had access to an ordinary family life, an education, expectations, relationships, and experience of organising. How could it be otherwise? This doesn’t mean that their own struggles were irrelevant, or they had not done their homework. It does not mean they could not make a platform for each successive “layer” of their group, or that they had not already listened to and considered many different voices before they became spokespeople. In fact without the trust and support of the wider group, no one remains a leader very long.

It is true that some people in every oppressed group still do not have the means or resources to tell us directly what they need. It seems to me a fair bet, however, that their needs will be more like their close but slightly more able comrades who have experienced most of the same things than the imagined needs and consequent services dreamed up by people who have never experienced anything else than the role of provider, carer or oppressor, and whose position led each group to protest in the first place.

Micheline Mason is a writer and founder of the Alliance for Inclusive Education