The year 2016 has been one of political turmoil. The lurches in the polls, from Brexit in the UK to the USA presidential election, are said to indicate a huge backlash of public anger.

The reasons given for this backlash vary across political positions. The right-wing claim it is against metropolitan liberal elites, be they in Washington or London. The centre-left claim (which I agree with) the backlash is fuelled by racism and xenophobia, and sexism in the USA. Both sides, to some extent, blame globalisation, trade, and neoliberalism – especially for a loss of manufacturing jobs which have been moved overseas to China and India.

False promises have been made to the communities worst affected by these changes: especially to the Rust Belt in America and the Northern Heartlands of England – promises of more local jobs and lower unemployment by allowing less trade and fewer migrants. Take back control. Make America great again.

The danger now is that, when these promises fail to deliver, just how much deeper and darker will be the next backlash? As we head into an economic repeat of the 1930s depression, the political lessons are surely plain to see.

And it soon will get worse because of the increased automation of jobs which is only a few years away. From automatic self-driving lorries to online algorithms to electronic control systems, there will be less work in future for drivers, receptionists, call centre staff, caretakers, cleaners, and many other people doing routine jobs.

What can we do to stop this descent into despair and right-wing extremism?

Well, one trite answer to date has been to blame the people with few or no skills and tell them it is their fault and that they need to learn new skills for all the high tech vacancies in the economy. A moment of reflection here should be enough to realise that, firstly not everyone will acquire high skills, and secondly that many of these vacancies are not a sign of an expanding labour market.

Every board of directors wants to hire a computer project team to produce a magic online algorithm which reduces staffing and doubles the company share price, so they advertise in hope. But in the same way that haulage companies have signs for driving jobs permanently painted on the back of their lorries, that doesn’t mean that an additional job exists. Usually it is a sign of a company wanting to displace the current driver with someone willing to work for less.

Another trite answer is to say – don’t worry, the free market will always sort out economic problems. It is simple supply and demand.

Call it creative destruction if you like. The argument is, yes, unskilled and semi-skilled jobs are currently in a long-term decline, but hey, does this decline have to be a problem? In England the first census showed that a massive proportion of the population were agricultural labourers. Every one of the 16 further censuses – spanning 170 years – has shown a continuous decline in agricultural employment. Manufacturing, transport, and clerical office jobs took up the slack. See, we are told, you can always trust the market to adjust and provide.

But now these newer sectors are declining in employment too. Until recently, the public sector picked up some of the slack, before austerity pushed public sector employment down as well.

And this employment decline is concentrated in disadvantaged areas – mining communities, steel towns, textile valleys, seaside resorts. The Rust Belt and the Northern Heartlands, typically.

The solutions here will vary from community to community, and from time to time.

But I want to suggest that a prime candidate for resolving the pressures on unskilled and semi-skilled work is the idea of a universal basic income. People criticised the tax credits regime of the 2000s as being a subsidy to employers to pay low wages. Maybe. But if it wasn’t tapered or means tested, and becomes universal, then it becomes a subsidy for local employment regardless of the skills level.

In the 1980s in the UK many a middle class creative industry was born using the Enterprise Allowance wage subsidy as the midwife. Why not now give the working class the same opportunity?

No-one would seriously argue that Manchester Night Shelter in the late 1970s was anything but a doss house. It was almost derelict, having previously been a run-down Victorian school building. The large rooms on each floor stank of urine, with sodden bare boards, wet stone stairs, and beds and mattresses thrown everywhere. The staff did what was possible but the conditions were awful. There had been a room set aside for homeless women, but even in these desperate circumstances this room was a horrendous place, so the night shelter became for homeless men only. Many were heavy drinkers, and being destitute this meant a drink called Jake, a mixture of surgical spirit and water. The building closed during the day, whatever the weather, to allow the minimal of cleaning possible.

I was one of a group of student volunteers who went in on an evening rota, mostly to talk and make sandwiches which we sold at cost price, about 2p a round. We bought the supplies from the cheapest shop and mashed margarine and fish paste together in large tubs to spread over loaves of basic sliced bread. I was also involved in a local campaign to have the night shelter closed and replaced with better alternative housing. A few others of the staff and committee members were also members of this campaign. Looking back, I can see that some of my colleagues – both in the volunteering group and in the campaigning group – couldn’t understand or perhaps trust my position of being active in both. But to me it was clear. The volunteering was for surviving today, and the campaigning was for a better tomorrow.

Manchester Night Shelter was a charity and a limited company. After a year or so volunteering I was elected onto the management committee. Nearly all its income came from the Department of Health and Social Security, the DHSS. There was a small grant from Manchester City Council, but the council at the time was in no hurry to either improve the provision for homeless people in their area, nor to close the place down for public safety and health reasons. Homeless people didn’t matter, and any doss house was a good enough alternative to street sleeping, in their view. There had been a new law recently, the Homeless Persons Act 1977, but councils were only obliged to provide for homeless families with children, not for homeless couples and not for single homeless people. Hence the campaign.

The night shelter staff took careful details of each occupant when they first arrived, and would make sure the person visited the DHSS office nearby the next day to start getting what little benefits they could. This gave the person a small weekly payment and the night shelter a minimal rent. The low rental payments and the small council grant were not enough to cover costs, and fundraising from charity appeals and trusts was a perpetual task just to pay the bills.

So, now being on the management committee we had a discussion on income, and we were told that the local DHSS office had rule whereby they would only pay a limited amount to the night shelter for each person because the provision was so awful. Which left us in a bind, because we could not afford to improve the conditions until the income grew.

At this point I went to a shop in the city centre called Her Majesty’s Stationery Office, HMSO, where they sold all the government publications including copies of each law. The DHSS was administering payments called Supplementary Benefit, which was paid to people as a safety net when they were not eligible for more generous benefits. The rules for Supplementary Benefit were set out in detail in Statutory Instruments, a type of law which can be used to add the fine detail to an Act of Parliament. I bought a copy of the relevant Statutory Instrument and took it home to study.

As suspected, nowhere in the law did it give the power to a local DHSS office to impose a lower rent ceiling for overnight accommodation because of poor conditions. The assumption was that it was the job of the local council to close down anywhere that had unacceptable housing standards.

So I drafted a letter to the local DHSS office saying just this, including an exact extract from the relevant pages of the legal powers. I added that our staff had been making this point in various ways to them for some time now so we expected back payments as well. I just managed to type all this on one side of paper, which I felt was important as I saw it as a campaigning leaflet as much as a letter, and I co-signed it with the General Manager who was the head of the paid staff.

The key point here was that I sent copies of the letter with covering letters to the local MP, to the Minister in charge of the DHSS, to the council, and to some national bodies. This was campaigning politics as I knew it would be the national copies that would matter.

Within just a couple of days the local DHSS invited the staff members in for a meeting, at which they conceded every point and more than doubled the rent being paid as well as paying the substantial arrears. After the meeting, a DHSS official said to a staff member that no-one wanted to handle the local meeting because there was such fierce interest from the very top of the department. Even the regional officials would not get involved to defend the local office. Our staff were careful to keep a good working relationship with the local officials, sympathising with them for feeling abandoned by their hierarchy.

We were clear what to do with the boost in income, and it wasn’t about putting the night shelter on a permanent footing. We could now pay the monthly salaries without staff fearing bankruptcy, we installed a proper fire alarm system and renewed the old electrics, we put down hygienic washable floor coverings, made the toilets decent, we installed washing and drying machines for the men to use, and we improved a health care room used by visiting nurses. It was a massive boost and a turning point for the organisation, which went on to wind down and close the doss house and replace it with a tailored range of decent hostels and supported flats for single homeless people.

Why tell this story now, 35 years later?

Just after we achieved this victory I was in the general office doing some paperwork when a radical member of staff came up and said to me in an aggrieved tone, ‘the staff did most of the work for this, you know‘. My reply was that, ‘I don’t want any medals‘, to which nothing more was said.

Why now, is, we need case studies of successful campaigns which are not loaded with ego.

The main lessons for me from this case study are:

1. Research and investigate the issue in as much detail as you possibly can. Go back to the original documents, the basic law, the facts of the case. Put the graft in.

2. Use letters like campaign leaflets, short but with the details where necessary, written to engage the onlooker as well as the recipient.

3. Be generous in victory, it is always a team effort, a collective result.

From today’s election results we can imagine that America has given up trying, because the vote will be seen that way.

Given up on being a multi-cultural country founded by immigrants.
Given up on trade.
Given up on equality for women.
Given up on the environment.
Given up on shared defence.
Given up a world role.

A result for vocal angry white men.

Does this matter, globally? Maybe not. There has been long-standing political animosity in much of America against the United Nations. And for their part, much of the rest of the world wasn’t too pleased with cultural imperialism.

So we can imagine certain political discussions in Russia, China, India, Africa, Latin America, and the Arab Gulf States – all saying basically, “so be it”. If the USA is leaving the world stage, fine. Those political discussions in Europe will be more finely balanced, with the various right wing parties hoping that America has found a magic door to new wealth and opportunity.

The best role now for centre-left parties in Europe is to show America how to accept and live well with its loss of world influence while maintaining (or rebuilding) a tolerant and open society, as much of Europe did in the twentieth century after ‘their’ empires collapsed.

Of course, there will be a few big problems with America’s new direction. The nuclear capability of a rogue state is always a concern. The influence of the dollar in trade needs to be addressed. Probably, as with North Korea, the world policy towards the USA will become one of containment. And maybe some foreign exchange trips for the left-wing citizens to keep their hopes up.

As Barack Obama said after the vote, the sun will still rise.

Yes, and there is a saying in Africa – that the sun shines the same everywhere, no matter how small the village.

The problem:

Many children, especially living in towns and cities, never see a dark starry sky.

The solution:

When a cloud-free night is approaching, TV weather reports will give out locations where a starry sky can be safely viewed by accompanied children, accessible by public transport. Ages will probably be around 8 to 12 year olds.

The method:

1. Preparatory meetings are held between media, academic, transport, and public safety organisations: probably one grouping per county apart from media.

2. Suitable “dark sky” locations away from urban light pollution and accessible by public transport are identified. Suggestions: Shaw & Crompton; Town Green.

3. Plans are established, including transport timetables, station staffing, police and first aid cover, astronomy volunteers, near-to-station supervised viewing areas.

4. BBC and ITV regional weather forecasters decide a night-time is 24 to 48 hours away which has a high probability of no cloud cover. This is broadcast, along with a project web link.

5. Events take place, possibly different dates for different counties depending on the local cloud cover forecasts.

The air

In late October 2016 the Earth passed through a belt of meteor debris. Some of these small rocks hit the Earth’s upper atmosphere at speed and burn up, creating shooting stars. The event lasted a few hours in the early hours around 4am GMT, centred in the sky around the three bright stars of Orion’s Belt. Only seen at night, this placed Europe and Africa in the best position to view the event.

The air quality around the Canary Islands is particularly clear, having only the Atlantic Ocean for miles around, and with minimal light pollution it is no accident that the Spanish government built a major astronomical telescope on the mountainside in Tenerife.

So, at 4am I am standing at a window looking up to a pitch black sky with thousands of stars, Orion’s Belt well above the horizon, watching the flashes as a few shooting stars burn up each minute, mostly quickly. And then one, slower and redder than the rest, crosses the sky as if to deliberately close the show.

Sometimes your stars do line up.

And later you reflect, wondering how many children have yet to see a pitch black sky dotted with thousands of stars.

The water

A walk along the harbour quayside is a pleasure, both in Los Cristianos and in San Sebastian. These are working harbours with large ferries, fishing boats, and pleasure craft. Earlier this year a small group of cross-Atlantic athletes rowing boats were tied up, resupplying. And the water quality, even in a working harbour, is crystal clear. Shoals of fish can be seen, their darker shapes against the brighter rocks on the sea bed. The occasional eel mingling in. A few pieces of bread strategically thrown can create a great show of frenzied eating, drawing in passing pedestrians to watch and search their bags for something to add themselves.

The land

A while back on the regional TV news after the weather forecast, the presenters like to sit on the sofa and exchange a few closing pleasantries, usually football. One time a news presenter commented that he’d had complaints from the Blackpool authorities that the weather forecast was frequently too gloomy, that their weather had a better microclimate but people were being put off from visiting. I remember how the meteorologist’s smile dropped and she answered him swiftly, everywhere has a microclimate. He hastily changed the subject.

Tenerife is an island of very varying climates, from the temperate north to the arid south, with extensive farming. To the south the irrigation systems feed large enclosures of banana trees, often screened to better retain moisture. To the north, rain watered fields are common. Insects abound, as do migrating birds.

La Gomera includes a natural ancient rain forest, now protected as a national park, rising to a high altitude. When you drive to Leeds on the motorway a sign near Saddleworth tells you this is the highest motorway section in England. On Gomera the only roads are up and down the peak, there is no other way to drive around the island, and their road rises over three times as high as Saddleworth. The bus trip across the small island is four hours, then back again.

I guess it is the usual thing to finish a postcard wistfully, something like, it is a different world here. As I think about it, it isn’t really. It is the same world. But we mess with it differently.

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