Iain Gray: We must not sacrifice dignity to expediency

It was marked in the Scottish Parliament by a debate initiated and led by Siobhan McMahon MSP, convener of the Parliament’s cross-party group on disability. The idea of disability history month is summed up in the quote “If you believe people have no history worth mentioning, it’s easy to believe they have no humanity worth defending” from William Loren Katz, the American educator and writer.

Disability rights groups have long had to fight not just to have disabled people taken seriously but to have their existence acknowledged at all.

One thread of recent Scottish history which illustrates this well is the story of how people with learning disabilities live in our country.

I was privileged to play a small part in that history in the east of Scotland when I was a health minister under Donald Dewar. I officiated at a ceremony to close a hospital down.

Ministers generally like to open hospitals, not close them. But this was Gogarburn hospital, where, for many years, we forced those with learning disabilities to live a life which was always institutionalised, often bleak and sometimes downright cruel.

My wife worked and trained in Gogarburn, and to this day we often meet people in the street whom she recognises as someone she knew as a patient. They now live, with support, in their own homes in their own communities. This is truly a history of liberation.

Like all liberation stories, it has its heroes, notably a number of visionaries in Lothian Health Board in the 1980s who fought the conservatism of their own professions, the prejudices of wider society, and the accepted wisdom that people with learning disabilities could not survive outside institutional care.

Others created the third sector organisations like Ark housing and the Action group in Edinburgh which showed what was possible and pushed the boundaries of independent living.

However, the real heroes of this struggle are the people with learning disabilities themselves and their families who fought, often for years or decades, to be treated as citizens with rights of their own.

In 1999, when I became deputy health minister, I discovered a small team of Scottish Executive officials working on a review of services for people with learning disabilities. They had quite simply gone native and become powerful advocates for the rights of disabled people. Cleverly, they used the sudden overabundance of ministers to get direct access to me and win me over to their cause.

The result was a report called The Same As You, which revolutionised the lives of thousands of Scots, and still does to this day. The power of the document lay in the efforts made to engage directly with service users – a group of people traditionally considered unable to express any opinion.

At the launch of the document in Murrayfield Stadium, people with learning disabilities told their own stories of liberation and made clear that what they wanted was more freedom, not less. It felt like a revolution – that is what it was.

The Same As You report closed the last of the long-stay hospitals, and it made clear that replacing them with “group homes” where four, five and six strangers lived together in an institution pretending to be something else was not good enough. We all want a home of our own, rented or bought, and people with learning disabilities want the same.

But … there is always a but. In 2003, out of parliament, I was approached to chair ELCAP, a voluntary organisation supporting people with learning disabilities living in the community. I thought it would be instructive to see a policy I had signed off in action. It was instructive alright. I discovered that The Same As You was still at implementation stage, and that every day for bodies like ELCAP was a battle for their service users to ensure their rights were not eroded in order to save money.

Many were still being denied a home of their own and supported only to live with strangers for “company”, ie: a saving in care costs. Families, parents and advocates still had to fight for years to get the kind of support for their sons and daughters which were supposed to be guaranteed by the document I had so proudly signed off years before.

Eight years on, and progress is still slow and constantly under threat. Local authorities tender services to the lowest bidder, pricing high-quality, highly committed organisations like ELCAP out of the market. Legislation on self-directed support, where service users can choose who provides their support, dropped off the government programme in the last parliament, although it is promised again. Worst of all, Lothian Health Board, once the most progressive in these matters, is working with its sister local authorities on a new learning disability strategy.

I have seen a draft and it features a model the sector would recognise as “core and cluster”. To my eye, it looks like a return to group living. That would be a backward step. It is cost-cutting dressed up in fancy language, but it is also a retreat from an ideal, the powerfully optimistic, and visionary belief that, with support, every Scot can live free and independently, whatever their disability.

So, in disability history month we can be proud of the story of the liberation of people with learning disabilities. But as with all revolutions we must be vigilant against revisionism and backsliding. It is time the Scottish Government showed a lead in pushing the boundaries of independent living, not pulling back from the struggle. After all, “those who don’t know history are destined to repeat it”.

• Iain Gray is Labour MSP for East Lothian and a former Scottish health minister