The Blair’s Blood demonstration in London in December 1997 was small but had a massive impact – it changed UK politics on welfare reform for ten years, and taught the New Labour cohort of politicians and advisors that disabled people had political power. How did this happen, and could it be achieved again?

The Blair’s Blood demonstration almost did not happen. The main protest was to be held the following day in Trafalgar Square, being only about a kilometre or half a mile away from Downing Street but a hundred miles away in terms of media coverage. 

The protest was against the welfare reforms – cuts – being proposed by the New Labour government. The protest was organised by a disabled people’s non-violent street protests campaign group called DAN, the Direct Action Network.

Before the protest in Trafalgar Square there was some frustration amongst the DAN activists at the lack of media interest. About 20 disabled people decided to stage a further, unplanned protest the  day before at the security gates to Downing Street nearby. DAN members as a group were experienced in surprise protest tactics, and it wasn’t immediately obvious to the police officers at the scene that this small group going along the pavement of Whitehall would become a further protest.

At the time it was usual for the national print and television media to keep a presence of photographers and camera crews at Downing Street. This group would supply pictures of various ministers, including the Prime Minister Tony Blair, arriving and leaving the main offices of the government.

Reports indicate that four of the 20 DAN protesters were wheelchair users. In a highly effective and visually compelling manner, some of the wheelchair users threw themselves to the ground up against the security gates and smeared themselves and the floor around them in bright red paint. The slogan was Blair’s Blood, and it caused a wildfire of TV and newspaper coverage with the bright colour pictures resembling a crime scene. There was some internet coverage, but in 1997 the internet was not yet the main media channel for news.

Alan Holdsworth recalls: “I think it was we called a snap action called a day before as you say about 20 turned up. We had the red paint in charity collecting tins saying, Tony Makes us Beg! It was Kevin’s first action as a Danner traveling all the way from Liverpool. We met at Westminster Abbey went to Downing Street, got out of our chairs and threw the red paint out of our cans. I remember how cold it was and was really worried about Kevin in his tee shirt. Nigel had a seizure but the cops just thought he was playing around. Still no arrests and I remember thinking if we don’t get into jail soon we’ll freeze to death. I started crawling towards the police wiping the red paint closer and closer to them that did it and soon we were in the nice warm police station off Trafalgar Square. It made the front page of the New York Times.”

This wildfire of press coverage mattered in two very significant ways. 

Firstly, up to this protest the New Labour core group of politicians and their advisers had prided themselves in their control of news stories. 

This was the age of the new skills of spinning the news and of instant rebuttal, where the journalists at the time were finding it very hard to challenge and question the power of the New Labour message. It was a tremendous shock to the egos of the New Labour media handlers that a small group of unknown disabled people could so massively defeat them. The New Labour era of believing in their own media superpowers, enjoyed before and after the landslide general election result six months earlier, had suddenly ended. 

Secondly, the Blair’s Blood demonstration brought home to New Labour politicians that so-called traditional Labour voters, the core group, could not be taken for granted when making political decisions. 

The fashion at the time was for something called triangulation, where politicians took the traditional left and right wing responses and then created a third response, midway but forward, which would defeat all challengers. An early classic example of triangulation was the slogan used by Tony Blair in the early 1990s in opposition as Shadow Home Secretary: tough on crime, tough on the causes of crime. The Blair’s Blood demonstration was a stark message to New Labour that the core group could not be taken for granted. 

The sharp lesson was that the welfare benefits of disabled people could not be easily cut by adding a bit of media spin and changing the headline from cuts to reforms.

This article was amended on 30 October 2016 to clarify the date of the Trafalgar Square protest, and to add the quote from Alan Houldsworth.

—

This is from the BBC at the time:

Protesters throw ‘Blair’s blood’

Disabled protesters have thrown red paint over Downing Street’s gates during a protest against the Government’s welfare reforms.

The group chanted slogans against the Prime Minister, Tony Blair, outside his official residence, Number 10 Downing Street.

The paint was thrown at the gate blocking public access to the street from Whitehall.

“Blair’s Blood” was daubed on the pavement nearby.

Four protesters got out of their wheelchairs to smear the red paint on the road.

Kevin Donnellon, 35, … said the Government’s intention to reform the benefits system would lead him to lose his invalidity benefit and mobility allowance.

“These benefits are worth around £150 a week to me and my whole lifestyle is based around getting this money.

“I live on my own and I also have to pay for home help care so that will be under threat now.

“I feel that the Government are picking on us as soft targets, but we are going to show them that we are not soft targets.”

He said: “I will not be able to run my car without my benefit and allowance money.

Another of the protesters handcuffed himself to the gates across Downing Street as more police officers began to arrive on the scene.

The protesters chanted “Tony, Tony, shame on you” as they made their way from Westminster Abbey to Downing Street.

Police arrived at the protest, which was organised by the Disabled People’s Direct Action Network.

Around 20 people attended the protest.

—
Published: Tuesday, December 23, 1997 at 08:16 GMT

Link: http://news.bbc.co.uk/2/hi/uk_news/41746.stm

Currently, it is claimed, there is not much support being found amongst Britain people to defend the idea of human rights. Various reasons are suggested, along with some hoped-for improvements.

Neil Crowther has usefully covered the current position in this debate here – https://makingrightsmakesense.wordpress.com/2016/10/19/reflections-on-who-are-we-hate-hostility-and-human-rights-in-a-post-brexit-world-by-martha-spurrier/

I want to argue here that we need to do something more than is often currently being suggested, and to start this we need to have a deeper analysis of the problems we face when we are trying to defend human rights.

To do this, lets go back to 1983. The British government at the time was deeply unpopular and was heading towards losing the next election. Unemployment was over three million people and inflation was rising. The government was following an economic policy called monetarism, spending less on manufacturing and favouring financial markets instead. Then, starting by accident rather than design, the Falklands / Malvinas “war” happened and the government’s popularity soared, staying in power for a further 14 years.

And what was the lesson learnt? That people’s lives may be deep in the shit, but as long as they have an ‘other’ to hate then all can be managed and contained. The phrase bread and circuses used to be popular, taken from Roman times on how to manage a population. It was perhaps too benign a translation, it was really bread and executions.

Now, to stay fresh the ‘other’ has to change from time to time. Argentinians had their uses, but we’ve also seen anger at prisoners, hated for having satellite colour TV and prawn salad sandwiches served in their rooms on sliver trays with a coleslaw garnish. Almost. So you get the drift how post-truth journalism works. Today it is the turn of people whose faith is Islam – Muslims. And so, we learn this week from the Independent Press Standards Organisation, it is permissible to attack a fellow journalist for wearing a headscarf.

And what is it that stops us giving the hated ‘other’ the kicking they deserve – human rights. It tries to stop someone being sent abroad to be tortured. To stop someone being locked up without a fair trial. To stop the abuse of the ‘other’, even though the angry crowd is watching and waiting, wanting to enjoy the schadenfreude of seeing the ‘other’ in pain.

Because when people are angry, as in the 1930s Great Depression, it suits power to channel that anger against the ‘other’. Which is why the Universal Declaration of Human Rights at the United Nations, as well as the European convention and court all rose in the 1940s after the Holocaust.

And the ethics of human rights goes back much further, such as the Abrahamic tradition of: love your neighbour as yourself; and hate the sin, love the sinner. Today it would be: tackle the ball not the player. And our appeal to human rights is to respect the referee, to play a clean game. So, the answer to anger at the ‘other’ is to explain the anger as well as defending the ‘other’ against the hatred aimed at them.

Defence alone just feeds the anger by giving it a bigger target.

So, I’d suggest that we need to call for human rights for everyone, for every ‘other’ everywhere, including places such as North Korea. This is not frivolous – we have seen how disabled children are incarcerated and abused in many countries. No country has perfect authorities, so we all need the power to limit authority in order to protect ourselves from abuse. Human rights give us that power. The call for freedom around the world in the last century was for people to rise up and shake off their chains. Well, in terms of human rights, the world’s disabled people are still in chains.

Firstly, we must set a standard. If rights are universal then we need to show that everywhere counts, and by implication we show that “British human rights” is a nonsense, like British oxygen or British clouds. We need to say that the idea of the United Nations Universal Declaration of Human Rights is still worth fighting for.

Secondly, we must set a challenge. Would you deny to people in the UK the same rights which we would want to see in all other countries? To do this we have to remind people that Britain is not exceptional. We must continue to tell the stories of abuses in the UK, not least to counter the superior view that other countries need human rights laws, but we don’t because we are somehow better. From Hillsborough to historic child abuse, there are many stories where the establishment has closed ranks to protect its own. It is the elite that benefits when ordinary people lose their human rights.

Thirdly, we must explain the wider anger. Your longer wait to see an NHS doctor is because of cuts, not migrants. Migrants pay more taxes than non-migrants. Your elderly parent’s loss of social care is the same. Your inability to afford a decent holiday for your family is because wages have fallen since 2008 everywhere, not just where migrants live. Your child being in a school class of 35 is because of cuts, not migrants.

Your life is worse now because of inequality – cuts in pay and services if you are poor and tax scams and growing profits if you are rich.

You are right to be angry. But human rights are not the problem.

We already have the reality of a “two speed Europe” with the existence of sub-groups such as the Eurozone for currency and Schengen for travel, plus the European Customs Union which also includes non-EU countries such as Turkey except for agriculture exports.

So we can imagine consolidating this idea with a core group of around 20 or so EU countries called “EU Plus” and the other 10 or so called “EU Minus“. The Plus group are all those who sign up for everything on offer; the Minus group are the sceptics like Denmark or the fractured like Belgium.

Membership would be mobile, like football leagues. For example, Belgium would probably now go down into the Minus group because of Walloon’s fallout. Minus countries can apply for Plus membership based on their track record of good behaviour.

So, would UK Brexit criteria “fit” with the Minus group?

Well, maybe. Consider also if regions (eg Scotland, Northern Ireland) could apply directly for “Minus” membership even if the member state (eg UK) is not a member, provided the member state was in the Customs Union.

This would mean that single market rules would apply regionally, including free movement of people, but not in England and Wales. There could well be no internal hard borders because of the customs union. Residency rights would need to be regional rather than national, administered by local authorities as they do with the electoral roll. It also separates residency rights from nationality. The increasing millions of people with multiple nationalities also makes it less important than residency rights as time goes by.

London might want to become a region too, and it certainly has the population size to qualify. The UK Home Office would probably have a fit of the heebie jeebies, but it would do them good to lighten up a bit. We could also imagine other regions wanting to opt into the EU via the Minus group route, for example the South West of England for rural benefits. Gibraltar too.

As we have seen recently, the EU already struggles to get unanimous decisions from 28 different member states. So perhaps the future is to make two speeds official policy, and allow it down to the regional level.

For different reasons, the countries most against this arrangement would probably be France and Spain, each fearing a loss of central government control over their discontented regions such as Brittany and Catalonia. Until recently the UK would have been in this group too, but Brexit means the UK’s influence here is gone.

So, Brexit could well mean regional rights are back on the EU agenda.

A disabled people’s rights campaigner, in the 1980s the first disabled person in Greater Manchester to use direct payments to employ personal assistants.

June Geraldine Maelzer was born on 29 June 1942 in Delhi, India, where her father was working as an engineer. June was born with paralysis on her right side. Despite the doctor’s prognosis that she was “a cabbage” and not to bother taking her home, her parents Aileen and Basil refused to treat her differently from any other child. When she was four the family returned to London, where she attended a day school for disabled children.

She learned to stick up for herself playing with other neighbourhood children, but her life changed dramatically when, at 11, her father died and her mother had to go to work. June was sent to a boarding school for “delicate children”, a tough experience during which she quickly learned to assert herself. Later, she attended Thomas Delarue school in Tonbridge, Kent, run by the (then) Spastics Society, and Oakwood Further Education Centre, in Essex.

She applied to many universities to study psychology, but was rejected as being a “fire risk” because she used a wheelchair. Eventually, in 1969 and aged 27 years, the University of Manchester accepted her as an undergraduate and, despite the assumption that she would live in an institution, June found a flat and arranged au pair help. Her flat was filled with friends, and she reportedly partied avidly.

After gaining her degree she applied, unsuccessfully, for more than 200 jobs; she wanted to do social work but, at that time in the early 1970s, social workers found it hard to conceive of a potential client becoming a colleague. Nevertheless, June gained valuable experience in the early 1970s working voluntarily in a day centre for drug users, running a Hell’s Angels club and a hostel for homeless boys.

When she became pregnant June Maelzer said later she faced the toughest challenges of her life. She was implacably opposed to doctors who suggested a termination and who insisted she was selfish and irresponsible to have a baby. She was delighted when her son, Frank, was safely delivered in 1976 and determined to make their lives as ordinary as possible.

After a routine post-natal check-up June discovered that a case conference of various professionals had been convened without her knowledge and a decision taken that, whilst in the first instance she would be allowed to keep her baby, “social services would be on the sidelines waiting to take the baby into care”. She found her parenting constantly undermined. 

When her son began walking at the early age of 10 months, he was scrutinised for bumps and bruises by health professionals. At a clinic, when she said he mainly ate fruit and vegetables, she was told that if he did not begin to eat meat he would be taken into care. When he gained weight normally, the gaze of professionals turned to assumptions of “maternal deprivation” because June couldn’t cuddle him without physical assistance. She felt she was expected to fail. 

In the late 1970s and still living in Manchester, she struggled for cash and faced a traumatic time until she eventually found an au pair agency prepared to support her; and later Community Service Volunteers began to send volunteers into the home. 

After many years of enforced dependence on volunteers for personal assistance, in the early 1980s she became involved in a group of disabled people who shared her experiences of inadequate service provision. 

In late 1981 June attended a meeting to discuss housing provision in Greater Manchester for disabled people held at the office of North British Housing Association on Quay Street in Manchester. The chair was Peter Norman of Irwell Valley Housing Association. June was representing the Manchester committee of that year’s International Year of Disabled People. Records indicate there had been previous meetings of this group. 

June remained a member of this group for some years. The group organised a Conference on Housing and Care Support held on 30 September 1982 at Greater Manchester County Hall near Picadilly Gardens, and produced a video titled, Independent Living – the alternatives to segregated residential institutions for physically disabled people. The group became known as the Greater Manchester Housing and Disability Group.

A friend suggested that she initiate her own support group, and the idea of a personal trust was born. Manchester City Council reportedly funded the project, though records show that Irwell Valley Housing Association were also closely involved as a conduit for funds to June because then the funds could not be paid direct to individuals. Further reports indicate that unallocated funds to support families were available within the southern team area of Manchester Social Services in 1983, and this may have been when June’s first involvement with direct payments began, albeit via a housing association. The housing and disability group was a forum for policy rather than casework, but June used her contact there with Peter Norman to set up a scheme for herself. It is fair to say that June was not shy in holding back from asking when she needed something doing by a friend or colleague.

These arrangements, probably starting in 1983, enabled June to hire and fire her own staff, train them herself and pay them the same rate for the job as on social services payscales. The first such arrangement in the country was probably a scheme starting in 1982 involving Liz Briggs at Project 81, and June’s scheme was the first of its kind in Greater Manchester. It was a bit unorthodox but it worked, and she was in regular contact with other disabled people across the country, a pioneering group of disabled peole all beginning to set up their own direct payments schemes.

June and her family lived in Broadfield Road, Moss Side in Manchester. Irwell Valley Housing Association managed her financial allocation and payroll, and also provided accommodation for her personal assistants in a shared house nearby. She did all her own interviewing, selection, rota organising, training, holidays etc. It was a big job. There would be four PAs on her team, each doing 24-hour shifts. 

The ideas incorporated in this type of scheme later developed into UK law, becoming the 1996 Community Care (Direct Payments) Act, under which a person entitled to social services support is eligible for direct payments to organise their own care.

In early 1985 a few pilot examples of ‘official’ direct payments were started. Minutes of the Greater Manchester Housing and Disability Group meeting on 21 January 1985 indicate that two schemes involving direct funding were in place by then nearby, one for Carl Ford in Stoke-on-Trent (Stafford Council) and one for June in Manchester.

June was a member of many campaigning groups in Greater Manchester and the surrounding county, being active in: 

• Greater Manchester Housing and Disability Group,
• Greater Manchester ADAPT group on disabled people’s access to public transport, 
• Greater Manchester Highways and Disability Group, 
• Manchester Disability Forum’s Access Group, and when created
• Greater Manchester Coalition of Disabled People.

In the Annual Report of the Manchester Disability Forum in 1983-84, June is convening the Access Group and reporting back on its campaigns. This report includes mention of her interview on Granada TV’s This Is Your Right programme with Lord Winstanley. She also reported on the Lord Mayor of Manchester opening a photographic exhibition on access at the Town Hall by “ascending the Town Hall steps in a new chair lift”.

There followed years of paid employment, as a regular visiting lecturer in the Department of Psychology and Speech Pathology at Manchester Metropolitan University, and in research, consultancy and training in the field of disability and equal opportunities. 

June knew that not everything was plain sailing politically in her work. Often she would be a strong advocate for the normalisation model of disabled people in her training, which was politically at odds with other people who advocated the social model. The social model is structural, where it is society that disables people with impairments, so requiring self-organisation and social change. However, on rights and choices for disabled people to live independently June was a pioneer.

She worked for Manchester City Council as a disability training officer from around 1985 to around 1990, as part of a group of equal opportunities training officers based within the personnel department at Crown Square (a concrete block now demolished and rebuit as Spinningfields). Crown Square was also the home of the head office of the council’s education department. One day, after she’d been in the job for two years, she was in the lift when a very senior official said, “I keep seeing you in the lift. Why do you keep coming to this building?” In reply June growled, “I work here.” 

She also took her work colleagues for lunch sometimes at Granada Studios canteen nearby, where she seemed to have free access to the place. 

Nor had she lost her partying spirit, and many times she and her friends would burn the candle at both ends. John Evans recalls a conference of the DDMC (Disabled Drivers Motor Club) around 1986 when she and him “blew the audience apart” when they spoke out about disabled people’s rights and independent living. It seemed to them that the audience was not that receptive about rights but more interested about the accessibility of vehicles and driving. June with John and their PAs and friends, including Martin Field, were supremely unbothered and happily partied throughout the night and into the early hours of the morning! 

There is also a story of June on holiday, staying in an accessible villa in southern Spain near Malaga run by Pat Sierra and her husband, when June managed to miss her flight home. Probably another time, but also on holiday in Spain, she shared a villa with Ken and Maggie Davis, highly respected pioneers in independent living.

June co-authored an academic book, Researching Disability Issues (1998), and became something of a personality in Manchester – easily recognisable crossing the city in her distinctive coloured taxi, one of the few forms of wheelchair-accessible vehicles at the time and indicative of her ingenuity in getting things done her way.

June carried out extensive research on the experiences of other disabled parents and felt passionately about the entitlements of parents with HIV and Aids-related illnesses. She was seen as having a sensitive and insightful advocate for people with learning difficulties. In 1995, Manchester Metropolitan University awarded her an honorary MSc in recognition of her commitment to improving the rights and lives of disabled people.

She continued as a daring participant in direct action, often challenging the police to arrest her. In Manchester around the year 2000, she joined other disabled activists in a three-day occupation of a housing office organised by DAN, the disabled people’s Direct Action Network. 

June often experienced huge inconvenience and at times serious personal discomfort and indignity because her work was based in buildings with no accessible toilets, or with broken lifts, or rooms where the doors or desks didn’t allow space for a wheelchair to pass through. Once, finding herself assigned yet again to travel in the guards’ van on a train journey, she was caught up in an altercation about where she could smoke. “Don’t you think you’re sick enough already?” asked the guard.

Later in her career, she worked as an alternative health therapist and decided to move her business to Cornwall. Shortly afterwards, with her living arrangements still uncertain, she was diagnosed with cancer and the battle to live – and now to die – independently continued from her hospital bed. Once again she was determined, and somehow managed, to get herself home. 

She died on 5 January 2004 aged 61 years in Hayle, Cornwall.

June’s family and friends felt she never saw a satisfactory outcome to her campaign for recognition of disabled people’s basic human rights. At her funeral many of her disabled friends were left stranded on the cemetery path.

                                                        ——

This short biography has been compiled from two obituaries in The Guardian and The Independent, plus some additional research and recollections. Further details and any corrections are welcomed.

Some years ago there was a strong debate around whether the social model of disability was flawed because it saw all discrimination as created by society and, it was claimed, had no answer for disabled people who had personal experience of chronic pain and fatigue. There is a link to the initial discussion below. 

What is it that society must do, it was asked, to remove the barrier of chronic pain and fatigue and thereby enable such disabled people’s full participation in society? Society could do nothing here to help, was the suggested answer.

In that debate, part of the alternative answer was that the social model is just that, a model, it is not the reality itself. As Vic Finkelstein said many years ago, a model of a house will vary depending on the context, such as being in Africa or the Arctic, but they are still both models of a house.

Similarly model airplanes are useful in explaining how a very heavy aircraft can rise up off the ground into the air, but the models are not the planes themselves, just a way to learn about flying and to understand the concept better.

Which is true, if a bit neutral. However, on reflection, I want to suggest here that the social model does have something more positive to say on chronic pain and fatigue.

This reflection is prompted by reading a book written by an American doctor who has become very knowledgable on pain and fatigue. In his book, The Polio Paradox, Dr Richard Bruno has summarised the lessons he has learnt from spending his time working, with a team, with around four thousand disabled people. People who have come to him with increasing pain and fatigue, many at the end of their tether, especially when they have been ill advised for years by other doctors, physiotherapists and the like.

The book is around 300 pages so this article will have to be just a summary without many of the useful details he adds to explain his key points. 

The first interesting point, which you don’t realise until you are near the end of the book, is that his lessons apply to people with many different impairments and underlying conditions. His starting point is PPS – post polio syndrome, which he calls post polio sequelae – and how people who regained a significant amount of mobility in the weeks and months following their acute infection now find, many years on, a level of chronic pain and fatigue that they were never prepared for and can find no answers for. But he shows the underlying links from polio to mechanisms present in people with ME (myalgic encephalomyelitis), CFS (chronic fatigue syndrome), cerebral palsy, spina bifida, and a number of other causes of impairment.

He also comments strongly on the levels of under-diagnosis of pain and fatigue by doctors, and on the uselessness and harm typically done by prescribing painkillers and anti-depressants. 

For those interested in the biology he explains how enteroviruses are now better understood for their selective destruction of key receptors on motor neurons in the spinal cord but also travelling up into the brain stem. For many people the moment of the acute infection, often in their childhood, felt no worse than a heavy cold if it was remembered at all. It certainly seemed not serious enough to call a doctor. But the damage was done.

The scale of destruction at the time of the acute infection can remain hidden until later years, when basically the remaining small number of unaffected neurons, for years over-worked and uncomplaining, eventually become totally knackered and give up the ghost. Not quite how he explains it, of course, but you get the drift. Different conditions have different pathways, but the end result is mostly the same.

This point is important because so many people with chronic pain and fatigue have been dismissed and ignored for years. They have been told by many medics it was in their mind, and have been attacked by a hostile press with insults such as yuppie flu.

But more than the underlying biology, he has much to say on how society has responded, and mostly how it has not responded, starting with twenty million polio survivors around the world who have been left to fend for themselves.

Again, a long and rich story is told very briefly here. The core message from the book is as follows:

• Stop doing everything you can. Everything. Which is hard.
• Use absolutely every assistive device you can, and all the time.
• Understand how you have internalised repressive messages: lazy bones, no pain no gain, use it or lose it.
• Understand the social messages that reinforce this repression: hard working families, shirkers.
• Look for all the personal assistance you need at work, at home, for leisure and for a social life.
• Understand how fickle public sympathy is, often based on fear and pity, such as the March of Dimes polio fundraising in the USA where public support collapsed in the 1950s as soon as a polio vaccine meant parents feared less for their children’s health.
• Understand that the classic rehabilitation exercises that you have trusted to help you may actually make your condition worse.
• Understand that your cold intolerance is not about being soft or selfish. Avoid draughts and cold surfaces. Only swim in water that is over 30C.

Now imagine what a society would look like that removed such barriers and triggers associated with chronic pain and fatigue. A society where the proper support and structures are in place to address the issues of chronic pain and fatigue as far as we know is possible.

This society would include new arrangements to meet the needs of people with chronic pain and fatigue, for example, 

• personal assistance based on people’s needs and not on rationing, 
• a widespread provision, use and acceptance of assistive technologies, 
• a culture where over-achieving isn’t demanded and where people’s best efforts are not belittled,
• a health care service that understands the many and complex causes of chronic pain and fatigue and understands how to best respond to people’s needs, 
• workplaces that similarly best respond to people’s needs such as restful breaks and workload sharing, and 
• an understanding that the need for body warmth is essential and not a luxury.

However, when the UK’s Local Government Association estimates that there is a £2.6 billion shortfall in social care funding this year, and that more cuts are coming, we can safely say that the social model has something useful and radical to say for people with chronic pain and fatigue.

Finally, it is important to remember that the social model is not a cure that makes everything different go away. People will still have their impairments and conditions, some stable, some progressive. The social model challanges us to constantly check, what is the very best we can all do as a society so that everyone with an impairment is included. 

Link to the debate:

http://disability-studies.leeds.ac.uk/files/library/Crow-exploring-the-divide-ch4.pdf 

The world’s debt is now over $100 trillion, twice the global GDP. That is $100,000,000 million. Inequality within countries and between countries continues to rise. The medicine from the IMF, World Bank and European Central Bank of austerity, cuts, and privatisation has made things worse, not better.

Meanwhile every major power – USA, China, Russia, EU – has an extractive elite group which continues to rake in the money, even as local wages drop, unemployment rises and their economies stagnate.

I want to float the idea here that globalisation is a problem, not new in itself, but because it is only half-finished. We have had the liberalisation of financial markets, where funds flow in absolutely massive amounts every second from one computerised stock exchange to another. But this is tax free, making markets more powerful than governments.

There has been the proposal for a Tobin Tax, a small percentage of tax to be taken from every international flow of funds. For whatever reason this hasn’t taken hold, and vested interest by the extractive elites seems as likely a reason as any.

As an alternative, lets look at the USA. Their tax authorities have a useful tool already in use. If a US citizen anywhere in the world receives money, then the US government can tax it. There are various rules, but the principle is important because it relates to jurisdiction.

So, let us imagine that we apply this to international companies as well as individuals, and that the UK adopted a similar rule. And France. And Germany. We can imagine the chaos. So international companies play the system and cut a sweetheart deal with the most desperate or obliging country within their operations.

Now let us think about modifying this policy. You must pay tax to country A unless you can show you have paid the same amount or more tax to country B.

It is the “or more” that is important here, because it stops a tax race to the bottom.

Would it be a race to the top instead? What is to stop any government setting a tax rate of 100 percent and trying to scoop the whole bowl – well, international companies would close down their operations in that territory.

So, imagine the EU governments agreeing a tax treaty on these lines, which would make a massive difference because they together are economically large enough in the world – they have market power.

In the film, The Day After Tomorrow, there is a scene in New York Central Library where the school pupils and others need to light a fire and keep warm until help arrives. They are uneasy about burning books until one of them finds shelves and shelves of books on tax law.

Maybe these tax books might also save the world, yes economically, but still with a massive human cost as we continue to get it wrong.

The UK vote in 2016 to leave the EU was an intellectual failure, and now the intellectual class risks paying a high price. Universities in particular will lose many overseas students, and not just from the EU. Businesses will lose international employees similarly. Xenophobia and racism are encouraged by some powerful politicians and hate crimes are rising.

We need to understand the intellectual failures behind these changes if we are going to start to remedy the situation.

To start with, we have to go back a little. Eleven years before the Brexit vote the French people had voted similarly, but in classic terms the outcome was fudged.

In May 2005 there was a referendum in France on a proposed single text which would become the new constitution for the EU. The Parisian elite and the main parties were all for it. It had been drafted by a former president, Valéry Giscard d’Estaing. However the French people disobeyed their betters and voted No.

Of course, France did not leave the EU. Instead the idea of a constitution was quietly dropped and the powers-that-be pretended it had never happened.

In his analysis of this 2005 revolt, published a year before the Brexit vote, Sudhir Hazareesingh (an Oxford professor) sets out the main currents of discontent that washed across the land: xenophobia and racism concerning enlargement of the EU, hostility from the regions set against the capital elite, and a backlash against multiculturalism with it being seen as an attack on French identity.

Consider the following, exactly as it was published over a year ago:

“Indeed, what was most striking about the victorious ‘No’ vote was its effective aggregation of negatives. Upon the classic eurosceptic fear of loss of sovereignty was grafted a toxic combination of populisms: a xenophobic rejection of European enlargement, a progressive anxiety about the dilution of French social rights (represented by the figure of the ‘Polish plumber’) and a neo-Poujadist rejection of Paris-elites by grass-roots campaigners. As Jean Monnet’s star began to wane, the unlikely hero of the moment was Étienne Chouard, an economics and management schoolteacher who mounted a widely consulted campaign against the European constitution on his website. Libération hailed him as the ‘internet champion’ of the opposition campaign, and Le Monde devoted an article to the ‘Don Quixote of the “No” vote’. It was a measure of the impotence of the Parisian intellocracy (but also, conversely, of the growing power of the new horizontal age of internet communication) that the European project, the brainchild of Jean Monnet and one of the most distinguished creations of Gallic thought, was thus effectively pushed to one side by a blogger from Marseille.” (How the French Think, Sudhir Hazareesingh, 2015)

You rather wish someone had bought a copy and left it open on page 247 on the Prime Minister’s desk. Oh, what might have been…

But in truth by the time he could have read this book it was already too late. Promises had been made and changing course would have destroyed the Conservative party. Nor would it have helped the Labour party, which then still believed that ‘Europe’ would destroy the irreconcilable Conservatives either way, bringing Labour back into power using the buggins turn method of UK democracy. The intellectual strategy, in effect, was to sit, watch, and wait.

The Scottish National Party annihilation of the Labour vote in 2015 was more than a straw in the wind. Like a taser, that result sent an electric shock through the Labour party, collapsing it to the ground. And every time Labour MPs gathered in the House of Commons, the sight of so many SNP members sitting where Labour people used to be sat sent shudders anew. The strategy (if that) of watching and waiting was now replaced by one of twitching and fearing.

At a deeper level, the Labour party also became irreconcilable. ‘Europe’ was part of that mix, but much smaller than for the Conservatives. For Labour, the divide was over the EU’s legal privileges given to market forces and a fear this private sector bias will damage health, railways, postal deliveries and other public services, as well as holding back state help to firms in steel, coal and other stressed industries. New Labour grandees were worried about losing their reputation for being pro-business. Old Labour grandees similarly worried about losing their internationalist credentials if they criticised the EU.

But the main fault line was that many Labour leaders had lost their followers. The change in membership rules had created the largest party in western Europe, a new membership that was increasingly at odds with the old leadership. A leadership which had to fall back on the argument that half a million people were wrong, because the wider electorate would never support their policies. This was becoming mathematically a less sustainable argument as new members continued to join.

An this is where the intellectual failure bites. When Michael Gove now famously declared that “the British people have had enough of experts” it had the perhaps unintended effect of letting experts feel that at least they had done their bit. They had tried, they told themselves, but it was just unfortunate that they had been shot down.

But what had the experts, the intellectuals, actually said? The blunt truth is that most of the expert statements were from economists making predictions about the economic impact of a No vote, which was incorrectly but very effectively typecast as Project Fear. Which, incidentally, was forensically analysed in The European newspaper which tracked the UK tabloid front pages in the run-up to the referendum for relentless scare stories about immigration, entitled The Real Project Fear.

So we had expert economists, who to be fair did willingly enter the fray even though they left battered. But where were the rest of the experts, the intellectuals? There were a few round robin letters printed in the broadsheet newspapers, from university vice chancellors and the like, but nothing that frankly might really set the debate alight.

A lot of energy is now being given to speculating about the Brexit negotiations with the EU27. Perhaps we should save our breath. Basically, by March 2017 the UK will write a letter saying it is leaving, and by March 2019 it will be gone. There is a view held by some British people that there will be much to negotiate. However it is clear already that the EU27 think otherwise. UK politicians know that they are on the back foot, despite publicly denying it, so they resort to threats about EU nationals in the UK not keeping their right to remain. The Spanish government has already responded this week with claims for funding from the UK for the health care costs of hundreds of thousands of British pensioners currently living in Spain. Pensioners, by the way, who are ‘ex-pats’ and definitely not immigrants. Both the Daily Mail and the Express have print editions in Spain. Their contortions will be one of the few pleasures to be had from Brexit.

So intellectuals should enter the battle at last, bluntly, but not be drawn into the negotiations speculation sideshow.

The task instead is to start again with the case for internationalism, for peace, for solidarity, for equity between countries, between regions and between communities. This will mean a hard look at what is currently on offer: at globalisation, at the extractions done by financial markets including London, at the European Central Bank’s fights with eurozone countries, and at the priviledged position given within the EU to market forces. And it means doing this rebuilding and reforming of our shared institutions with people in other countries, not to them.

Finally, take heart. Remember the cotton workers in Lancashire who boycotted the pro-slavery southern US states even though it cost them and their families dearly – for justice and for international solidarity. Remember president Lincoln’s deep gratitude to them. Remember change can be argued for and won. And we have a good start at 48%.

This article first appeared in a newsletter of the Derbyshire Coalition of Disabled People. Maggie Hines later became known as Maggie Davis. It was found again in 2016 in files at the Greater Manchester Coalition of Disabled People.

If you are severely physically impaired and need the help of another human being to survive, you have all the potential for incarceration in institutional care. We live in a society which is built on the assumption that the family is the right and proper source of help. Institutions operate as a social defence mechanism to protect this general assumption. Inevitably in a society which provides minimal family support services, the stress on families operating as sole carers leads inexorably to breakdown and the incarceration of the person who is physically impaired.

It may seem strange to commence an article about housing for physically impaired people with a statement about care. But the fact is that the more severe the impairment, the greater the likelihood of dependence on other people and the less likely that housing per se will satisfy the conditions for social integration. Housing, however well designed, however well equipped with gadgetry will never meet the needs of dependent physically impaired people. Housing and help are inextricably linked and must be consistently perceived in this way if physically impaired people are ever to achieve a secure base for full participation in our society.

In my case, following the accident which led to my own physical impairment, the question of family breakdown under the stress of caring for my needs did not actually arise. One parent was dead and the other too frail to cope with my needs. Then, as now, there were no adequate domiciliary support services. Apart from the community nurse, help provided by the Local Authority was purely discretionary, since my accident was before the 1970 Chronically Sick and Disabled Persons Act. Indeed, before my accident I was working as a nurse and never challenged this situation. I assumed, like most do, that our social welfare provision was sufficiently all embracing and that if people did end up in institutions by virtue of their age, mental or physical condition, then surely this was the right and proper place for them. The only time I ever encountered the suggestion that the way we did things was not the perfect model was while nursing in the Lebanon, where dependent family members were contained within the extended family rather than in more formal social solutions. By and large my attitudes were those of the average professional in health and social welfare; those physically impaired people I encountered were seen as cases or patients based on the medical model and not as people who just happened to have a condition.

My awakening began in a very real sense when I found myself on the other side of the fence. I found myself on the receiving end of the very same attitudes and perceptions I had been carrying around with me. I can’t say I liked it very much. However, having survived the acute stage of my paralysis in hospital, further rude awakenings were in store. There were no houses for people like me, no flexible system of domiciliary supports comprehensive enough for anyone as physically impaired as me. Since my family could not cope and indeed, my wish was not to go back to parental care, I was swept neatly into the nearest institution. It was there that I really began to wake up to the oppressive social relations existing in society and it’s impaired members. I hadn’t realised that in a split second I could be switched from being an able-bodied first class citizen to a disabled second class citizen with all the implications that carries with it.

Institutions were places people like me died in. The longer I lived there the more I realised I was one of society’s social outcasts thrown onto the ultimate human scrap heap. I resented the devaluing and dehumanising regime. It was impossible for me to accept this form of accommodation and care as being an acceptable substitute for housing and help in the community. Society had incarcerated me because they thought and still do – that institutions were the right places for people like me. For me the natural place was out there in society playing an active part, as I had always done, in the community. We are social beings, it is offensive and wrong to remove us from society and treat us as sub-humans. It was like being sentenced to life imprisonment without trial, and in this case, life means precisely what it says for most people, with no chance for parole or remission for good behaviour.

The way back was long and tedious. I had begun to see along with many other physically impaired people, that we needed to come together, get organised and develop unity of purpose. When Paul Hunt publicly suggested that we should come together in this way it was a lifeline to me. The Union of the Physically Impaired Against Segregation was formed and, as it developed, many things about my situation came clear to me. I could see that I and my fellow inmates were victims of other peoples’ prescribed solutions to our problem. What was needed was that physically impaired people should define their own problems and their solutions out of their own direct experience of disability. We needed to get back into society with real control over our lives. Of course we need help, but I could see that existing service providers (among whose number I had so recently been) must become a resource to be drawn on by those in need of help. This would mean a radical change: the professionals’ prescription of stock solutions to our need of help had to be replaced. But the idea of our service providers actually lending themselves as a resource under the direction of their so called patients or clients is still a long way off.

The solution to my immediate housing / help needs had to be struggled for in advanced of these required changes. When I met my husband-to-be we set about devising our own alternative to institutions and the principles on which it ought to be founded. That we were able to achieve what we wanted says a lot for the individuals with whom we worked along the way. Our answer was a small development of housing units, some of which were designed with the architect to meet the specific needs of their potential tenants identified in advance. Other units were to be let to non-disabled tenants who were willing to supplement the help available from local domiciliary services in meeting our need for support. This quasi-collective solution [was] against the institutional reality forced on us by other people.

The Grove Road Scheme in Sutton-in-Ashfield has subsequently offered a pointer to other people seeking an alternative to institutions. The approach is simple enough: it rests on the premise that physically impaired people should be fully participating citizens integral with their local community. It shows that there is nothing particularly special required except a willingness on the part of the service providers to work with us in designing and developing ‘independent living’ arrangements. It suggests first, that the basic design of a house should be evolved out of the dialogue between architect and disabled person. Second, that aids to independent living should be provided with the housing to reduce artificial dependency on human resources. Thirdly, that a system of help is required that ‘spreads the load’ so that no one source bears the sole burden of care.

Statutory sources of domiciliary help can have a valuable underpinning and stabilising effect providing that they are responsive to the requirements of the disabled person concerned. But it is essential that support systems are socialised further than this, drawing on the resources available out of normal neighbourhood relations. This has the effect of removing from the family the burden of being the sole carer and increases the general level of awareness of the community about the needs of the disabled person and the needs of the carer. in this respect, the ideas of DCDP [Derbyshire Coalition of Disabled People] are very important. Practical progress is already being made towards a county-wide Care Attendants’ Register – at the time of writing a pilot project at Clay Cross is in the final stages of planning. How far Social Services see this Register as a part of a spectrum of domiciliary help rather than a convenient method of shedding, as opposed to sharing, the load, remains to be seen. But there is no doubt integrated independent living is [on] the way and will provide a real choice for the first time for even the most severely physically impaired person. It’s the start of a process which will spell goodbye to the segregated residential institutions as we have known them as they are thrown into the garbage can of history.

M. H.

******************************

First written in November 2016 

On references

Please note, this is a blog posting so there are not extensive academic references to support each point or assertion made in the discussion.

Introduction

History is more than a list of dates with the names of kings and queens. We know that social histories are important. We understand now that knowing a shared history is part of what defines the identity of any community. Yet for disabled people’s organisations (DPOs) across England at least, the collection, preservation and transmission of social histories has been neglected and under-resourced.

This article suggests and discusses some of the reasons for this neglect, and describes some of the main actions needed to start to make improvements happen.

The format of this article is in five sections:

1. cultures,
2. strategies,
3. policies,
4. practicalities, and
5. access.

Some readers might wish to concentrate on just a few of these areas rather than taking in all of the discussions.

Much of what is written here is based on three sets of personal experiences. Firstly, there are here reflections and lessons from the experience of trying to improve the records of the Greater Manchester Coalition of Disabled People (GMCDP) in 2016 with professional assistance from the staff at Archives+ within the Central Library of Manchester City Council in the UK. At the time of writing this improvement is still a work in progress, in transit from being a store room to being 165 catalogued boxes of mostly documents, and then to be taken into a fully functioning and secure archive.

The second set of experiences are around working with friends and family members of disabled activists who have died. It is public knowledge that one of these campaigners was Kevin Hyett, and privately some other families and friends are also being assisted. It will be for those families to decide if any, and how much, of the personal collections of deceased campaigners are to be shared, and with what safeguards or conditions on their use.

Finally, the third set of experiences come from my research for an MPhil in acknowledging the histories of some DPOs through their old photographs, which was done part-time from 2004 to 2012 and later published for free online.

Section 1: Cultures

There is extensive research on the lack of acknowledgement within mainstream cultural channels (museums, libraries, archives, public broadcasting) of so-called minority histories, although there are also great examples of good practice. The critical research in this area is often based on emancipatory principles, including feminist analyses and voices with the direct experience of oppression.

The classic example is how women, more so than men, are the custodians of the family album of photographs. Young children are sat on the knee, the album in hand, with the stories told as the pages are turned. An oral tradition of family knowledge transmitted, enduring within the family but fragile beyond it.

Similarly oppressed communities would weave a shared narrative, such as are told in church, temple and mosque sermons, in huddles in the corners of cafes and pubs, and at the back of the room at large weddings. However, for disabled people to opportunities to gather together and share stories and histories are fewer.

And as well as mainstream cultural knowledge being filtered, it is also becoming more of a commodity. The days of the university library open to all visitors are gone, the library is now part of “the offer” made to paying student customers, as well as being a source of income for academic publishers who take knowledge – publicly produced, and freely written and reviewed – behind an internet paywall. Making data private, sometimes including donated archival documents, creates a licence to the new “owners” of the data to exploit the intellectual property rights (IPR) opportunities – and yes, some universities do use exactly these types of phrases.

Section 2: Strategies

A typical conversation in the office of a DPO might go as follows:

“This filing cabinet, it is getting too full now.”
“Yes?”
“We don’t need most of the files any more. Where shall I put them?”
“Oh right, put them over there, that corner. Anywhere you can. That is our archive.”

At the risk of being too blunt, calling a pile “an archive” doesn’t make it happen. The start of change is to name things for what they are. So, it is really a store room, a cupboard, a cabinet, a pile. And it is a precious collection beyond words but it is not an archive. Not yet.

There is something about managing an archive that causes many organisations to run into difficulties, and DPOs are no exception here. Some of the reasons are probably based in a fear of getting it wrong. Increasingly these days the sheer pressure of direct funding cuts and other reducing resources (such as fewer local libraries and librarians) plus the added pressures on disabled people losing social care, benefits and scarce employment; all these pressures mean that managing an archive cannot be the highest priority for a DPO.

But I would argue it should be a high priority, if only for one reason – that learning from the past will make today’s campaigns at least twice as effective. How did DPOs fight the cuts in the 1980s? How did DPOs campaign so that Parliament eventually passed a law on civil rights in 1995 after years of refusing to do so? How did DPOs get access to driving adapted cars in the 1940s? How did DPOs first campaign for national insurance? Precious lessons.

And yes, today we have Facebook and Twitter. Which, by the way, are a problem for future archivists, but more of that later. But do we really believe that campaigning only started when the Like and Retweet buttons were invented – of course not.

Section 3: Policies

So an archive has valuable lessons and advantages for today’s campaigns, and there are three key policy documents that govern the construction of an archive: the collections policy, the donor agreement, and the user licence.

The collections policy is a set of written guidelines on what the archive will and will not hold. No archive should be used to collect just anything interesting at random, because it makes a nonsense of the archive. Every archive has a purpose, for example to hold records of disabled people’s campaigns and organisations in Greater Manchester, or Birmingham, or elsewhere. Nor will an archive hold every possible piece of paper: for example few archives will keep financial records such as invoices and purchase orders, as they usually have minimal historical value, in contrast to membership records or copies of newsletters which have strong historical interest

As an example, organisations are usually legally required to keep records for seven years, after which they can be destroyed. This rule applies to UK ordinary tax records. At another level, a commercial organisation had a policy of keeping their personnel records until the individuals 80th birthday. But if the seven year rule is the usual one, then a collections policy might include the practice that the archive team will receive all the files no longer required by the organisation, usually once a year, and will decide which are worthwhile for addition (acquisition) into the archive and which are not of merit and are to be destroyed. Staff travel expenses sheets have no particular merit, but the Annual Report will be significant.

The donor agreement is a signed record of any donation of materials and is key to showing the correct provenance or previous ownership/s of an item, as well as setting out who an item belongs to now and whether there are to be any restrictions on its future use. Some archives will always require a full donation, while some others allow for long-term loans (“deposits”) of items as well

Care needs to be taken on the terms and conditions which will apply to the users of the archive. One example is the Creative Commons set of standard licences. One of these licences allows users to make copies of any item provided these copies are not for sale and that the original source is acknowledged. A downside of a Creative Commons licence is that it is deliberately inclusive which can lead to materials being appropriated by organisations and causes which might have little or no connection to the DPO and its aims. The writer of this article found that some of his photographs of disabled people demonstrating for access to buses, which are held in an archive as well as being online, were later used by a disability organisation in a national newspaper to wrongly imply that the organisation had been connected with the radical demonstrations being shown.

Section 4: Practicalities

Doctors are taught, first do no harm. People sorting out archives should follow the same principle. Avoid the temptation to make everything look neat and tidy. An example would be opening every file and taking out any photographs, putting them in a separate box. It seems very organised, but the archive has lost valuable information. Few organisations write all the relevant details on the back of each photographic print, and very often the only way to make sense of a picture is from the other documents it is stored with that provide a probable context.

Nor is it necessary to put everything in date order, or theme order, or whatever. The key point here is to make an item findable. The finding tool will be the catalogue, and a computer search of a catalogue is the most powerful tool an archive can have. So a user will type in a search for “independent living” and “benefit cuts” and the catalogue will as a minimum say “box 23, file 4, item 17”. Depending how much work has been done with the archive, the finding tool might also say “and here is a pdf copy of that item”.

Keeping the original order of items is also important for future research. For example, we can imagine that in ten years time a researcher will go through archive box 23 item by item and spot a pattern that no-one had seen before, such as half of the disabled people in a campaigning group were also members of the same sports club. Maybe it had been remarked on at the time but never formalised because no-one had thought it to be noteworthy. More often, a future researcher will note the gaps in the records, such as where are young people, or where are Black people in all of this?

A key point from the above discussion is that the overall quality of the entries that make up the catalogue, the finding tool, is a major factor in how useful an archive is. As an extreme example, go back to our stacked piles of files and boxes on the floor in a storage room. A researcher arrives and asks the staff, “Do you have records of cuts campaigns in the 1970s?” to which someone says, “Oh yes, have a look in here” and opens the door.

The catalogue entry needs to be as detailed as possible, and dates are especially helpful. Sometimes an exact date is known, for example the date the copy of a letter. Sometimes it is more vague, such as a newsletter which says “Summer 1987” or “March / April 1992”. Sometimes the best you can do with an undated document is mark it in pencil as “c.1972” ( c. or circa is Latin and means around ) based on reading it and knowing some of the context. It is very helpful to include any vague date material within the title of an item, as well as in the box or field for a date. “n.d.” means no date is known.

In an era of the internet, electronic records and paperless offices, it is perhaps humbling to recognise the physical endurance of paper. There are books which are hundreds of years old, scrolls found in caves which are thousands of years old, and papyrus records from early Egyptian society. Yet we have documents written as recently as in the 1990s that are already becoming lost for ever, stored on floppy disks which have decayed beyond use and printed on now-faded thermal paper.

The UK National Archives and similar bodies in other countries have recognised this development in part, and have captured in time a wide range of websites for future reference. But the world of Facebook and Twitter risks becoming “the next thermal paper,” where the social histories of campaigns become lost in the moment. It will be interesting to see how archivists respond to this new need for online record keeping.

A range of tasks for volunteers and staff

The basics, or Level 1 tasks

Protect the materials from sudden loss, such as damage from water leaks, insects, fire and smoke damage, or theft. Remove the hazard, or move the materials away from the hazard to a better location.

If the material is in open piles, store the materials in metal filing cabinets, metal cupboards, or on open shelving in boxes, in the same order as found in the piles. Keep them in a locked room.

Try not to be overwhelmed by the scale of the tasks. People will have tried before to bring some order to the collection, and there may be packing lists or indexes of files which you can usefully work from. Throw away nothing and re-order nothing at this stage. Every list will have clues and pointers to the contents, including valuable contextual information about when the items were created, where they came from, and who might know some more about them.

Level 2 tasks

Make a list of the materials. This can start as high level, such as “a box of newsletters from 1994” and this basic list can grow in time to become a more detailed list of each item. It is helpful later on if the list is made using a spreadsheet program.

Store the materials in the same order you found them, and avoid the temptation to re-arrange them into date order, or any other type of imposed order.

Remove any PVC (polyvinyl chloride) plastics, such as document sleeves or wallets, from the collection. Replace them if necessary with clear polyester or polypropylene sleeves and wallets. Staples and pins should be removed from older papers, and only brass paperclips should be used to avoid staining the papers. Storage boxes should be acid-free and archival quality. Boxes are the recommended way of preventing damage to papers from sunlight, smoke, and over-handling.

Take photographs or photocopies of any items which appear to be deteriorating, such as documents on thermal paper where the print is already fading away. Print these copies on ordinary acid-free paper and store alongside the fading original.

Level 3 tasks

Look for a good quality permanent home for the collection of items. Ideally such a home will be a staffed archive which follows the national standards set out by The National Archives. A good archive room will have no strong sunlight, no water pipes, metal furniture, an even 15C to 17C temperature, steady medium humidity (50% – 60%), plenty of space to avoid dangerous stacking, with good air circulation, and strictly controlled access.

Some items such as photographic prints may require a much lower temperature to keep them chemically stable, and some items (including some very old types of film negatives) may require freezing, for example to stop infested insect eggs from hatching in paper.

If you need to mark the materials in any way, for example to add a date, then write using a very soft pencil, such as a 6B pencil available from art shops. Use clean hands, and wear thin cotton gloves if the materials are very old or rare.

If you need to make digital copies of items such as documents and photographs, try to use a camera rather than a scanner with a paper feed mechanism, unless the documents are recent and robust. There is a risk that a feed mechanism will tear and damage any fragile items.

Backups of the digital copies must be kept safely offline, away from internet hackers, viruses, etc. All digital items need to be transferred to a new medium every ten years, otherwise the recording medium (for example, CDs, hard disks) will deteriorate and lose the digital files.

All these tasks help in the preservation of materials within the archive. The final stage is known as conservation, which moves on from passive measures to active measures which aim to prolong the life of items. Conservation is the professional repair and treatment of items which will deteriorate unless a remedy is applied.

Section 5: Access

In the archive profession, much of the discussion under the title of access tends to be about opening hours and arrangements to make sure that visitors do not damage or steal the materials they are handling. In this article, access means the wider political issues of disabled people’s access to knowledge in their required formats.

We have seen how paper is one of the most resilient carriers of storing information. However, many people are print-disabled, including disabled people with visual impairments, with dyslexia, and with learning difficulties.

It is now technically possible to make a lot of archive materials more widely accessible using scanners and computers. The basic stages are:

– scan the document and create a digital format, usually PDF,
– process the PDF with OCR (optical character recognition) software to convert the shapes into digital words and add the digital words back into the PDF, and
– use screen readers to speak the words on the screen for print-disabled users.

This process enhances the archive, making its contents more accessible now than when the documents were first created. It is also a universal method, so it does not require access to any other software, such as now-defunct desktop publishing programs or old word processors. Everything is taken from the shapes on the paper, and OCR software these days is capable of handling headlines, multiple columns, page headings and numbers, and tinted paper backgrounds, but not cartoons and images.

Probably the largest organisation creating accessible archives using OCR software is the Internet Archive, (www.archive.org) a nonprofit organisation based in San Francisco, California, with millions of older books already converted and made available to US citizens within the laws of US copyright. Their process is known as DAISY – the Digital Accessible Information System format

The archives of DPOs in the UK, as well as libraries and archives generally, could usefully follow the initiative of Internet Archive.

Discussion

To follow one day, the idea is of a network of disability and DPOs archives and collections in the UK, including maybe Belfast, Birmingham, Cardiff, Derbyshire, Edinburgh, Hampshire, Leeds, Liverpool, London, Manchester, and all online as far as possible.

Credits

Every project is a team effort and this is no exception. Many people, maybe fifty or more, have contributed in some way to the work in progress that is the GMCDP archiving project, and many names will be found in the catalogue. If we just consider those people who have attended archive project meetings, written reports, or had some direct involvement in donating materials, then credit must include the following:

Colin Barnes, Huda Bashara, Caron Blake, Angharad Beckett, Jane Campbell, David Govier, Lorraine Gradwell, Maggie Griffiths, Brian Hilton, Brian Kokoruwe, Natalie Markham, Linda Marsh, Martin Pagel, Anne Plumb, Alan Roulstone, Audrey Stanton, Dorothy Whitaker, Joe Whittaker.

We must also acknowledge here those disabled campaigners within GMCDP who, now deceased, have left a range of rare and unique items in their personal and work-generated collections for others to learn from:

Cathy Avison, Alison Blake, Kevin Hyett, Ken Lumb, Angela Madeley, Ian Stanton, Neville Strowger.

If there are others missing here, I’d welcome a correction and apologise in advance.

—-

Appendix – Creating a GMCDP Archive

[Extracts from GMCDP Briefing Notes, June 2016]

Background

GMCDP has wanted an archive for at least 14 years, and since 2002 an archive has been one of the five top priorities for the Executive Council. A detailed timeline is available from the office.

In 2005 GMCDP stored around 40 boxes at the Greater Manchester County Records Office (GMCRO). In 2014 Archives+ opened to visitors, now a combination of Manchester Libraries, GMCRO, the North West Film Archive, the Ahmed Iqbal Ullah Race Relations Trust Archive and others. Those 40 boxes from GMCDP are currently stored in Archives+.

When GMCDP moved to smaller offices in 2013 a large number of old files were placed in a storage room. This storage room also includes a number of boxes with historic items donated by disabled individuals and by disabled people’s organisations across Britain.

Three main concerns have been raised by GMCDP members about the possible running of an archive:

1. For how long would items be safely stored, such as for 100 years or more?
2. Who would own the items, and must GMCDP give the items away for ever?
3. How can we be sure that the items will not be misused, for example by big charities not controlled by disabled people?

It now appears that a satisfactory solution to all these concerns might be possible.

Recent developments

A GMCDP volunteer has been sorting through and organising these boxes in the storage room, starting to catalogue their contents and adding to the previous work done by other members. This storage covers around 70 boxes and over 20 drawers of files.

GMCDP staff have been in contact with staff at Archives+ which is based at the Central Library in St Peter’s Square, run by Manchester City Council. A good relationship has been establised.

GMCDP staff have worked on disabled people’s campaigning histories with researchers at the Manchester Metropolitan University and with Archives+. Disabled young people have been supported to produce The Accessibles publication and exhibition on the recent history of campaigning for a fully accessible city.

Early discussions with Archives+ staff indicate that:

1. While there are no absolute guarantees, Archives+ are fully geared up to hold items indefinitely, including many items for over 100 years.
2. Items are only loaned, or lodged, with Archives+ and not donated so they can be taken back at any time in the future.
3. Archives+ are keen to work in partnership with GMCDP and are open to talking further about an Advisory Group or similar arrangement where disabled people meet with their staff regularly to discuss the best use of the items in the archive.

Next stages

GMCDP Officers and staff will meet staff at Archives+ to develop a more detailed partnership way forward that is acceptable to both organisations

If these discussions are successful GMCDP Executive Council will consider lodging the remainder of its historic storage boxes with Archives+.
….

Archive Catalogue

Every archive needs a catalogue if it is to be used to its full potential, otherwise the search for relevant items is often a matter of browsing through boxes. A catalogue also allows the archive to be searched remotely before a visit is arranged.

The building blocks to make an accurate catalogue of the GMCDP Archive are now in place. This currently incomplete catalogue is spread across four connected lists –

(1) this is of around 5,400 items thought to be in the boxes held at the Manchester Central Library in Archives+, each item’s details being a line in a spreadsheet.

(2) this is an estimated further 2,000 items thought to be in the boxes held at the Manchester Central Library in Archives+, each item’s details being a line handwritten on 82 sheets of A4 paper. GMCDP currently does not have the administrative resources to type these entries into a spreadsheet.

(3) this is a high-level list of around 70 boxes of various materials held in storage by GMCDP [in storage] …. This list is not fully itemised, and currently summarises only the general themes of the contents in each box.

(4) this is a high-level list of around 25 drawers of archived materials held in storage by GMCDP [in storage] …. This list is not fully itemised, and currently summarises the general themes of the contents in each drawer. When some or all of these contents are later transferred to archive boxes, the number of boxes might be different to the number of drawers.
….

Technical Notes

The use of a spreadsheet for an archive catalogue is a preferred method by Archives+ staff because the list can be automatically added to their searchable database. The minimum information usually needed for an archive catalogue is known to archive staff as the “Dublin Core”.