Nothing about us without us

I haven’t been able to stop thinking about this (.pdf file) since I read it a week ago. It’s the text of a speech by Jim Elder-Woodward given to the Scottish Disability Equality Forum in 2000 that begins with a description of events at the 14th World Congress of Rehabilitation International in Winnipeg, Canada, in 1980.

At this Congress, Rehabilitation International published its own Charter, the central aim of which was to call on participating governments to take all necessary steps to ensure disabled people had full integration and equal participation in all aspects of the life of their communities.

However, at the same congress, the Executive of Rehabilitation International turned down an amendment to its constitution, proposed by the Swedish delegation, that disabled people should comprise 51% of its ruling body.

All hell went loose when this decision was announced. There were approximately 200 disabled people at the conference from America, Australia, Africa, Asia – everywhere, even the backwaters of Europe. No-one could understand the duplicity of these doctors, social workers, and officials from governmental and non-governmental bodies who comprised Rehabilitation Internationals Executive at that time.

Despite the shock over the executive decision, this sort of paternalism over the lives of disabled people is such a central issue to disability rights that the international rallying cry of the movement is now “Nothing about us without us!”

By 1980, disabled people worldwide had begun to organize specifically for civil rights. The first CIL (Center for Independent Living) was founded in Berkeley in 1970. UPIAS (Union of the Physically Impaired Against Segregation) was founded in Britain in 1972 with what began as a round-robin letter exchange among disabled people — some stuck in institutions. The 25-day sit-in at the San Francisco offices of the U.S. Department of Health, Education and Welfare had happened in 1977. That was to demand enforcement of Section 504 of the 1973 Rehabilitation Act, which said that any organization or service accepting federal money had to be accessible to disabled people — public transit and other public places too.

Back in 1980, as part of their rationale for excluding disabled people from their membership, the Executive of Rehabilitation International issued a statement saying that disabled people were not ready to participate in the highly complicated decision-making which they had to undertake.

RI had, at that time, been dedicated to improving the lives of disabled folks for 58 years, yet they refused to allow those same people more than token membership in the democratically-run leadership. Their rationale wasn’t uncommon, but the resulting anger at that meeting can surely be given some credit for the successes of the recent UN treaty for the rights of disabled people.

Elder-Woodward on the 1980 RI meeting again:

That night was electric. Disabled people congregated in a side room at 11 pm. There was no organisation, no format for the meeting, no leadership – just an angry mob of disabled people talking in groups and milling around the room. Then Ed Roberts got on the stage. Ed had poliomyelitis and at that time Reagan had not yet kicked him out of his job as Director of Rehabilitation for California. Puffing on his oxygen cylinder, as if he were Harold Wilson, smoking a pipe, he greeted the noisy rabble, by crying out – ‘Cabbages of world, unite!’

There was such an uproar of acknowledgement and then all went quite whilst Ed spoke about the need to develop a separate international disability movement.

Those few disabled people organised themselves there and then to draw up their own constitution and began to agree strategies and structures before going to bed at 4 am in the morning utterly exhausted.

I had never felt, nor have since, the galvanising energy which came from such a hungry angry mob of disabled people. They had come from the four corners of the world and they were in no mood to be cast aside by a load of quacks and pen-pushers.

Some of those disabled people went home to countries where the normal treatment of the disabled is beyond appalling, where constant warfare increases the number of disabled folks daily, and where to be disabled means to be sub-human.

The new UN treaty may do very little of actual practicality for most disabled people in the world. I don’t know how that all shakes out. The effectiveness of the UN is certainly a continuing debate. But symbolically the treaty is incredibly important. And in the process of hammering it out, hundreds of governments and NGOS like Rehabilitation International had to work with disabled people who were there insisting they determine their own lives. That’s a process I’m happy about.

Crossposted at The Gimp Parade