I caught a fascinating programme on the radio the other day. A group of people who had campaigned to end disability discrimination in the ‘70s, ‘80s and ‘90s gathered to share memories in The Reunion on Radio 4. Their discussion was chaired by Sue MacGregor, who recalled that in the 1970s the campaigners adopted what was called the “social model”. This model suggested, she explained, “that it was society, built and run by non-disabled people, which had prevented them from actively participating in a fuller working and social life”.
Given my thoughts on society’s treatment of those with dementia, Sue MacGregor’s words piqued my interest. All the more so when I discovered that among those on the radio discussion panel was Lord Hague of Richmond, a man I remember from my days as a Hansard reporter at the House of Commons. Back then he was plain William Hague, a young Minister taking the Disability Discrimination Bill through Parliament in 1995. Twenty one years ago I reported those debates as they passed through their Committee stages and made it into law.
I remember too the campaigners’ demonstrations. Scores of people in wheelchairs – many of them electric – lined Westminster Bridge. As Baroness Jane Campbell, another member of the radio panel (and wheelchair user), recalled, “Now these electric wheelchairs, you cannot lift them; it takes five grown men. And there we would stay and we would stop the traffic”. They certainly did. One of the stationary drivers was me, in sight of my office and in danger of arriving late for work – unthinkable for someone who was (quite literally) employed to record history being made.
But I digress. The interesting point about the demonstrations was not my predicament, but that they came about because disabled people were fed up with society mistreating them and failing to include them in decisions about themselves.
Baroness Campbell put it like this: “It (the social model) is basically saying that you are not the problem. My condition and my person is not the problem, it’s the fact that society is not accessible and is unequal in its treatment towards disabled people. We had a very strong mantra which was, ‘Nothing about us without us’”.
Substitute “those with dementia” for “disabled people” and you’d be guaranteed to hear the Noble Lady’s statement, soundbite and all, at any dementia event today. The difference is that she was talking about several decades ago. Viewing dementia as a disability is controversial; but it is always worth considering the lessons of history.
A year or so ago I heard a thought-provoking speech on how the 2006 United Nations Convention on the Rights of Persons with Disabilities might be used as a framework within which to treat dementia as a human rights issue. It was fitting that the speech was given in Scotland, one of the very few countries to have a Charter of Rights for people with dementia and their carers.
At the Alzheimer Europe conference in Glasgow, Grainne McGettrick suggested that a UN convention for people with dementia would not only allow us to rethink dementia as an issue of social justice, but to reconsider both how we talk about dementia and who does that talking.
Grainne, a former research and policy manager of the Alzheimer’s Society in Ireland, said that this “human rights based approach” would also act as a catalyst for change, with those with the condition acting as the agents of change.
“Finding a collective voice,” she said, “can be a powerful tool for change and no one can deny the authentic voice of the lived experience”.
This was, of course, what the disability campaigners had discovered back in the 1980s as they rose up as one, blocking my way to work. Today, those with dementia are coming together and speaking out. It is my good luck to know some of them and my job as a writer to tell the rest of the world about their lives, the things that help them and shape their world, the obstacles that hinder and frustrate them.
Listeners to the radio discussion could also hear a low, regular background noise. It was Baroness Campbell’s ventilator, which makes her voice sound (to use her words) like that of an astronaut.
As we couldn’t see the Baroness’s wheelchair, her voice provided an aural reminder of her disability, in much the same way as the odd stumble here and there reminds audiences listening to people with dementia that they have to paddle that much harder beneath the water in order to keep going. Those with dementia, like those with disabilities, face constant, often invisible challenges that others, more fortunate than them, don’t – which means their words, when they come, pack a powerful punch that is hard to ignore.