Vic Finkelstein's Story: "Revolution"

One person who made a major impression in my life was my friend Stuart, who I met at university in 1984.
Stuart was a committed socialist, so I spent lots of time with him organising the University Labour Club and the Miners' Support Group (Usually instead of studying).
Stuart had muscular dystrophy, used a wheelchair and drove his antiquated mini like a scalextric racing car, scaring the bejasus out of me.
It was Stuart who first introduced me to disability politics, by telling me Vic Finkelstein's story 'Revolution', which you can read in full here.
It's a remarkable story, in that it describes how well-meaning action can lead to exclusion and segregation, how in a society run by people with a particular impairment, it would be the people who did not share this impairment who would become 'disabled' by society itself: For example, in a society where everyone uses wheelchairs, why would they waste building materials on rooms with high ceilings? Then when someone comes along who belongs to the 2% that doesn't use a chair to get around, they find themselves having to stoop constantly, and wear a leather helmet to protect them from banging their head, they'd find it impossible to get work as workplaces would not be designed for their 'special needs', so would be forced into claiming benefits and seeking charity, even the clothes they bought in shops wouldn't fit properly, the ramifications are endless.
It's one of those stories that goes to the heart of issues of power and discrimination in society, when the environment and culture is structured in a way that ignores one section of society altogether.
Finkelstein's tale ends on a hopeful note, pointing toward the possibility of a society where people's different needs are met so they can each contribute their different gifts and get on together just fine.
What made me think about this story? The news today that Angela Bachiller has just been elected city councillor for the Spanish city of Valladolid. (The link I've shared is in Spanish, the English press don't yet seem to have picked up this story).
Angela will bring her experience of exclusion and discrimination as somebody with Down Syndrome to the City Council. She's already pointed out that many people with intellectual disabilities never even get the chance to vote.
How great that Valladolid will benefit from Angela's energy and commitment! There are plenty of people in our own communities who'd love a chance to share their energy, experience and commitment too, in their own way, if we had the imagination and will to create the kind of community where this can happen.

Bits and Bobs

There's been a few interesting stories recently that you may well have missed. I'm going to highlight two or three of them here:

Firstly, my copy of 'Community Living' dropped through my letterbox today. It's packed full of useful information on current benefit changes, such as the Personal Independence Payment, as well as great information from Belinda Schwehr on the law around social care and disability.

HISTORY

One article from Community Living that I found really interesting was a review by David O'Driscoll of a website that English Heritage have set up covering Disability History 1050 - Present Day. The pages are brimming with intriguing information about the lives of disabled people in the past, such as the 'natural fools' in the Tudor court who were appreciated for their humour and honesty, and facts, such as the first wedding ever conducted in sign language was held in 1618. It also shows how people have resisted institutionalisation right since the earliest days, such as the Leper Colony in West Somerton that rose in revolt in 1292.

Parallels to the present day include the unforeseen consequences of radical changes to the provision of health and social care that happened because of Henry VIII's dissolution of the monasteries. Many of the religious institutions that had been mainstays of the lives of sick and disabled people were destroyed leaving people forced to beg in the streets. The state's eventual reaction to this was to establish new hospitals and institutions, though many disabled people lived long and productive lives in the community. The site touches on the debate about separation or inclusion that continues today (and is a key theme of this blog).

The Union of the Physically Impaired Against Segregation was an early disability rights group.
© Disability Archive UK, Centre for Disability Studies, Leeds University

PHOTOGRAPHY

If you're lucky enough to be in Edinburgh at the moment there's a really interesting looking exhibition of the work of photographer Graham Miller called 6 percent Downs Syndrome.

The exhibition focusses on the experiences of people with Downs Syndrome and their families, and includes recorded testimony as well as photographs. It gets its' title from the fact that of all the pregnancies where Downs Syndrome is determined before birth, 92% are terminated, and only 6% are delivered.

LONELINESS

This blog has covered the issues of loneliness and isolation, and seeks ways that our communities can help people overcome this. Vanessa Barford's article on how society creates loneliness is worth a read.

HEALTHCARE

More and more medical professionals are reaching the conclusion that much of the treatment and care currently provided in hospital could be provided in people's own homes or in local clinics. People like Dr Michael Dixon think that 50% of what's currently done in hospitals could be done in the community, with better outcomes. I'd suggest that for this to happen successfully, we'll need to develop person centred attitudes and skills among medical staff, and also find ways to make local communities more connected and confident to become welcoming and supportive places for all the people whose conditions are being treated there. We'll need to think carefully about how to deliver this, so that things like 'virtual wards' in the community don't trap and isolate people in their own homes.

SELF-ADVOCACY

The death of Mabel Cooper was a sad loss to the self advocacy movement. Tom Shakespeare marked her passing with an obituary in 'Our Statures Touch The Skies", While Dorothy Atkinson wrote an obituary for her in the Guardian. You can hear her voice on this video from the Forgotten Citizens Conference. You can also hear more about her on BBC Radio 4's 'Last Words' programme, which should be available up to the end of April.

 

Holocaust Memorial Day: Aktion T4

Today is holocaust memorial day.

On this day we remember the victims of the terrible Nazi holocaust.

So many millions died as dark ideas about race and genetics were taken to their logical conclusion.

It's amazing how few people know that the holocaust began with the slaughter of disabled people and residents of institutions and asylums.

They also assume that the people who carried out the 'euthanasia' (as it was called) were soldiers or SS, but in fact they were nurses and care workers from the institutions that had been charged with caring for these people.

That means people like me carried out these killings.

An ideology of  eugenics prevailed. This meant that people really believed that death was a 'kindness', preferable to the lives that disabled people led.

Eugenics was a set of ideas held not just in Germany, but in every country. These ideas, while officially discredited, lurk dangerously in many of the assumptions that society makes about disabled people even today.

 

Here's a short film made by disabled people that shows what happened in the 'Aktion T4' programme.

 

This hard-hitting play by Nabil Shaban was banned by youtube, but is still available on Vimeo: http://vimeo.com/12792261

 

 

Don't be a victim. Don't be a perpetrator. Above all, don't be a bystander.

Disability in Prehistory

In recent years archeologists have been unearthing remains that demonstrate that at least in certain prehistoric communities it was routine to care for severely disabled people. (Dettwyler 1991)(Tilley and Oxenham 2011).

Our picture of Neolithic peoples as 'savages' needs to change

 

Kristina Chew has summarised some of the fossil finds in this article:5 Prehistoric People 

45,000 years ago, a Neanderthal, Shanidar 1, lived to the age of 50 in what is now modern-day Iraq though one of his arms had been amputated, one of his eyes lacked vision and he had sustained other injuries.

10,000 years ago, Romito 2 lived until he was a teenager; his skeleton shows that he had a form of severe dwarfism that meant his arms were very short. He was therefore unable to live by hunting and gathering among his people, who “would have had to accept” what he could not do.

7,500 years ago, Windover boy in Florida lived to the age of 15 though he was born with spina bifida, a severe congenital spinal malformation.

4,000 years ago, a young woman from a site on the Arabian peninsula lived to 18. She had a neuromuscular disease, possibly polio, with very thin arms and leg muscles that would have made walking and movement extremely difficult. Debra L. Martin, associate professor of biological anthropology at the University of Nevada, Las Vegas, says that she would have needed “round the clock care.”

Read more: http://www.care2.com/causes/ancient-bones-acts-of-kindness-eons-ago.html#ixzz2IQEnafqY

The latest find is of the 4000 year old remains from Man Bac in Vietman: http://www.statesman.com/news/news/prehistoric-bones-can-tell-stories-of-human-compas/nTgsh/
This boy had fused vertebrae, weak bones and would have been unable to walk or use his arms from adolescence. The evidence shows that he had Klippel Fell Syndrome, yet he lived for another 10 years.

Tilley says she knows of at least 30 skeletons “in which the disease or pathology was so severe, they must have had care in order to survive".

Today many assert that the fact that poor sick and disabled people receive welfare support is a sign of Western ‘progress’ and ‘enlightenment’ as a society, or even a luxury we can now afford thanks to economic development (for example Zhang & Song 2012), that the right to support with health may even be a ‘Western imperialist’ idea (Matheson D. 2009).

This fossil evidence of ancient welfare practices undermines such self-congratulatory assumptions.

We can assume that life was tough for these communities, they faced predation from wolves and tigers, some did not yet have agriculture, and lived by gathering and hunting, the idea of a 'state' had not yet been thought of, though neither did they have bankers and multinationals demanding that society's resources should be directed at them.

The resources they had were very precious to them, and they used them to make sure that every member of their community was supported to live as well as they could.
 

When politicians start to use rhetoric about 'scroungers', 'skivers' and 'burdens' (and politicians of all the main parties are guilty of this) they show in many ways that our society values humanity less than we once did. When we segregate people, when we create disempowering places like Winterbourne View, when we invalidate people's voices, treat them as 'other' and fail to listen to what they're saying with their eyes, bodies and behaviours as well as their words, we show that we're not listening, not valuing, not being human,  

It was the fact we valued all human beings that enabled our species to survive those tough prehistoric times and begin to build civilisation. But as I was asked on twitter recently: "Are we civilised now?"