Coronavirus Covid-19, disabled people, and PAs

The data showing the spread of covid-19 is changing day by day. The current advice centres on people going into self-isolation as a precaution and as a method of containment. The reason is that covid-19 is at its most dangerous in a hospital or a health centre. Current knowledge (caution: this is not a medical website) is that the virus has a mild impact on most people, but for some babies and some adults it can be fatal.

These so-called vulnerable groups, according to current reports, include newborn babies and adults with compromised health. This list of compromised health includes people with:
– cancer,
– serious pre-existing conditions,
– COPD, and
– breathing difficulties.

This list naturally includes many disabled people. It also naturally includes many hospital patients and many health centre visitors, as well as being a high and sometimes fatal risk to health care workers. Hence the focus on self-isolation and telephone consultations with health care services.

However, for disabled people, self-isolation might become the best precaution – to protect themselves from the general population rather than to protect the general population from them.

But what then about PAs? How as a disabled person can you self-isolate if you need PAs to visit you daily? And will PAs become the most vulnerable to infection, similarly to hospital-based health care workers, because of the nature of their work?

Given the intimate and sustained nature of many PA tasks, the idea of gloves and masks seems inadequate to me as a barrier to cross- infection, but are we prepared logistically and culturally for PAs to visit disabled people, and other people with compromised health conditions, in full haz-mat suits – it might feel too extreme for home-based care, but it might save lives.

Alternatively, it might be the PA rota that has to be abandoned. The PA and the disabled person may have to self-isolate together, but this assumes a lot about the PAs own life circumstances as well as about the availability of PAs for 1-to-1 support rather than a rota of visits.

Perhaps as a start, for self-isolating disabled people, the maximum amount of assistive equipment (self-operated hoists, etc) should be deployed out of official storage and into homes as a matter of urgency.

Research Bulletin, February 2020


At the risk of being a bit presumptive, I thought it might be best if I started writing a general message periodically on current research projects, rather than sending out lots of separate emails. Feedback welcomed.

So, here goes…

1. 1960s. For the 50th anniversary events about Alf Morris’ Chronically Sick and Disabled Persons Act 1970 I have been researching the campaigns by disabled people in the 1960s which informed these new legal rights. A 12-page draft research paper was currently being circulated to interested individuals, and this is the February *draft*:

2020-02-12 Alf Morris MP and National Campaign for the Young Chronic Sick (v Feb Final)

2. 1980s. Following an interesting conversation with Dorothy Whitaker last year about the Metrolink access campaign in the 1980s and a key lobby meeting in November 1984, A 14-page draft research paper is being circulated to interested individuals who were mostly there at the time, ditto as above. I’m thinking next about the Disability Design Reference Group run by Breakthrough UK for Transport for Greater Manchester, set up in 2008 in part to engage better and earlier with disabled people’s transport concerns, and whether this new research needs to dovetail with any DDRG agenda. Drawing in part on papers in the Kevin Hyett Collection. Feedback welcomed, as ever.

3. 1990s. I’ve been working on a timeline for DAN events and people, DAN being the disabled people’s Direct Action Network. Many thanks to Gill Crawshaw, Leeds, for her loan of her extensive collection of DAN papers and photos, a full copy of which is now in the GMCDP Archive. Similarly thanks to John Smith, Notts. Alan Holdsworth is in the UK soon so a weekend catch-up is planned with a former DAN member hosting (invitation only) to add to the DAN Collection.

4. 1970s. Maggie Davis’ book called “To and From Grove Road” is now launched with details of her and Ken’s campaign for and achievement of independent living before direct payments. Her Collection of papers is now in the GMCDP Archive. Free pdf online.

5. 1970s. Working with Judy Hunt on maybe publishing some further writings by Paul Hunt, plus looking at republishing Stigma, a book by 12 disabled people which he edited in 1966. Some details still confidential.

6. 1970s. With Maggie Davis directing, looking to publish a book of Ken Davis’ poetry. A draft version was made for their family for Christmas.

7. 1980s. The Philip Mason Collection within the GMCDP Archive will be added to soon with a new file of 93 letters by Philip about Independent Living, and especially around the campaigns for the Independent Living Fund, established in 1988. (Sadly, now abolished.) This is a closed file because some aspects are personal, genuine research by disabled people would be allowed with ethical restrictions. Thanks to John Evans for facilitating.

8. 1960s-to date. With some good friends we have been preparing a timeline of radical mental health organisations in and around Manchester from the 1960s, including cataloguing some existing archives and hopefully building some new ones. Working group meets monthly, by invitation.

9. Plus some confidential ‘irons in the fire’ which will be reported by myself or various DPOs if and when appropriate, including some possible TV and film items.

Flying in the face of reason

We know we have a climate emergency. We know we need to move from plans to action today. But some actions will be difficult to implement, and perhaps the hardest, in the world of work, will be on reducing Corporate Air Travel – CAT.

CAT is currently the life blood of some organisations and sectors. But it is poisoned blood for the planet. The micro is in conflict with the macro.

Some changes are easy if there is an alternative choice. Electric instead of diesel. Public transport (where it exists) instead of private. More insulation instead of more heating. CAT has some alternatives, such as telephone and video calls, and surface travel options such as rail and shipping.

One of the characteristics we value at work is when people show their calm resilience when dealing with ambiguity and uncertainty. For some businesses CAT will be the hardest test of this resilience. Because there isn’t a simple plan B, even though keeping to plan A is fatal.

Perhaps the most honest approach for any business is to say something like – We will reduce our CAT by x% every year starting today, even though none of us yet know precisely how this will change our business, and of course we will continue to look for sustainable growth opportunities through these uncertain changes.”

This is a time when inspiring leaders are needed.

HS2 and binary politics … could we do it better?

At the current estimated cost of £100billion, we could pave the way from London to Manchester with £10 notes end to end, and each £10 note would have another 3,999 underneath every top one. (335km and 132mm for those that like the maths).

£40,000 in piles of £10 pound notes end to end for over 200 miles. The Great Train Robbery wasn’t just in the 1960s.

And that is before we examine in any detail the environmental impact, expecially on biodiversity (our wildlife).

But HS2 has become a binary issue – people must be either wholly in favour or wholly against.

The HS2 design is already an old technology, using a continuous solid concrete ‘floor’ underneath the track. Making concrete is awful for CO2 emissions. But yes we do need additional rail capacity in and around the north of England, north-south and east-west.

Is there a more nuanced view possible on HS2 – with smarter, modern engineering which isn’t all about bulldozers and concrete – and looking at rail solutions as coming from networks rather than single lines?

But I fear at the moment politically, that anyone who tries for a non-binary position will be eaten alive as a traitor by both sides.

Reducing carbon, block by block

Buildings use a high percentage of global energy, especially in developed countries. Every unit of energy that can be saved can be one less unit of energy from fossil fuels.

So how can developed countries make their buildings more energy efficient?

One way is the road of international agreements which are then implemented through national regulations. But we know this road is closed at the moment.

Another way is bottom up, block by block, neighbourhood by neighbourhood, community by community.

Imagine if every building for visitors had its energy rating on the door. Just like we do with fridges and vacuum cleaners, from A+ down to G. A sheet of paper in the window is something everyone can do.

The group of buildings for visitors should include blocks of apartments for rent as well as shops, schools, colleges, places of worship, community centres, and official buildings.

The social pressures across villages, towns, cities and countries to increase the energy efficiency of our buildings would be catalysed, making the world a better place because it could reduce global carbon emissions starting from now.

It might even help unblock the road to international agreements on climate breakdown.

Every street can help the world.

Social Care 2025

It seems likely that social care in Britain will drift from crisis to crisis for the next five years. What might be done to improve this?

British politics is still trying to recalibrate after the December election results. The Labour party is occupied with choosing a new leader, and in that process, choosing some new strategies and policies. The Conservative party are in government and have expelled many former centrist members from parliament. The snake oil of Brexit has been buried for the moment, but it will resurface around July when reality kicks in again.

So, possibly the biggest policy challenge for the government aside from Brexit is social care, and unlike Brexit it cannot be avoided as the pressures within the NHS continue to tear health and social care apart. The policy position of the government on social care is that it wants a cross-party policy consensus, but where the different parties have widely different positions. In short, the conservatives want a market solution while labour wants a public service. So a consensus isn’t possible on the structure, even before we consider how to pay for the structure.

Currently the toxic element is how to fund social care. Public sector spending by councils and in community care has fallen by an estimated 21% in the last ten years. Theresa May tried to suggest a means-tested approach during the 2017 election campaign and it blew up in her hands. The normally supportive right-wing press jumped on the “death tax” slogan because owner-occupiers would have to pay off their social care debt from their estate after they had died, usually by selling the former home.

So, barring a big change in policy by one of the main parties, social care policy looks likely to languish until 2025 or longer. What can we do about that?

Looking at some of the early pioneers in the 1960s, 70s and 80s in England, some disabled people did manage to create their own social care solution and leave hospital wards and charity homes to live in the community in flats and houses. Examples include Pamela La Fane, Ken Davis and Maggie Hines (Davis), John Evans, Margaret Wymer, June Maeltzer, and no doubt others.

Each solution was person-centred and often a creative mix of funding and mutualism. Housing association funding was sometimes stretched to its limits, as were local authority support and resources. More than once the lawyers had to be called in to confirm a solution was lawful.

Many in the Labour party are calling for more local activism as a strategy to rebuilding support. The usually examples of local activism tend to include things like running a food bank, an advice centre, organising litter picking days, writing leaflets and newsletters and very-local social media groups, meals and bingo sessions for pensioners.

A question for the moment is how might such local activism support new social care solutions? And not just more bingo.

Is “work pays” still a useful policy, or are we now needing a Universal Income?


The “work pays” policy was a cornerstone of social policy and practice for much of the 20th century. However, the decline in the quality of much work in the 21st century, matched with new limits and cuts in benefits, now means that the former certainty of this policy is now undermined. A Universal Income is a suggested new tool in fighting poverty and disadvantage, but it currently has some flaws.


In the 1980s and 1990s the strong belief in community regeneration was in a policy known as “work pays.” For anyone who was unemployed, the belief was that helping someone get a job was the single best thing that you could do as a practitioner. It improved people’s mental health, their physical health, their range of contacts and support, the life chances, and these benefits extended to the immediate family – children would do better at school, for example.

Some of these claims were articles of faith rather than being based on documented research, but the feeling was it so obvious as not worthy of a long study.

And mostly this belief was well-founded. Though I do recall at some meetings in Manchester in the voluntary sector in the 1980s having to remind people that it had its limits. Some of my reminders were:
– There are some people we can get along with at work but we would never invite home.
– There are some supervisors who are basically not very nice at work, and the temptation to storm out of work with a “you can stuff your job” over the shoulder is sometimes hard to resist.
– And, it is hard if you are the first person in your household to have a job, because you have to go to sleep earlier than everyone else, and everyone assumes you have more money to share, even in your first week or month when you are spending on buses etc and waiting to be paid.

Those caveats aside, broadly the “work pays” policy was a strong cornerstone of social policy, certainly up to 2000.

But, slowly a drift in the economy started to undermine this policy. The push for a “flexible labour market” led to a freelance culture being spread from middle-class professionals to working class communities, the most obvious aspects being zero-hours contracts and self-employment as a means of avoiding employment law duties.

Sensing that the world of work was becoming less rewarding, the policy consensus by the national political parties at the time was to “align” welfare benefits with the labour market. At it’s best, this could mean that the transition from unemployment to work was smoother. But more often at it’s worst, this meant that benefits were driven downwards to match the falling standards in the world of work.

Trade unions also had increasing legal restrictions placed on their operations. In a climate of declining membership and de-industrialisation, trade unions were at risk of becoming craft associations again. This trend, if followed for some years, could protect the higher career grades at the expense of labourers etc, just as the craft guilds had been up to the 1870s when the unionisation of dock workers started the era of mass working class membership.

Perhaps the lowest point, so far at least, of these trends in ratcheting down employment rights, welfare benefits rights, and trade union protection rights, was in the creation of Universal Credit.

The proponents of Universal Credit tried to pretend that “work pays” was still effective, conveniently ignoring more recent evidence of its failings as outlined above, and in its later stages being cut back even further by Chancellors of the Exchequer in the name of Austerity. Limiting the number of children that can be supported by a family while being unemployed is probably the most egregious of these cuts.

Few serious social policy advisors would now argue the advantages of Universal Credit; but there is a lot of interest in its possible replacement by a Universal Income.

In short, a universal income would be payable to every adult, working or not. For me, it should be paid weekly because the idea of poor people budgeting monthly is a vindictive fiction – every poor person has times with no money, but a few days to ‘pay day’ is easier to live with than trying to go for weeks with nothing.

But a universal income must also have additional costs top-ups. The additional costs that disabled people have to meet are probably the largest here. Child benefit, at a rate where children are genuinely taken out of poverty, is another.

Finally, any such changes will involve winners and losers. This is a fair point, but let’s be honest about the score so far, that already some people have been on a winning streak through incredible tax cuts and loopholes. Maybe “work pays” as a policy is over, but we are still a fair way from “living pays”.