On a new hub for disabled people’s organisations in Greater Manchester

I believe that many disabled people’s organisations (DPOs) in Greater Manchester would benefit from coming together by having a hub again for offices and meetings. The previous hub was closed seven years ago by austerity cuts.

Eight months ago I wrote about the need and benefits of a new hub – the link is below.

So it might seem odd during the covid-19 pandemic to be thinking now about being close together again. DPOs are campaigning hard on the appalling number of deaths in care homes, and on the lack of emergency support for disabled people who are shielding or isolating during the lockdown.

But I think we also need to put a marker down, to demand a say on the social designs of the future that are being started now, the “new normal”.

After the previous hub was closed in the years of austerity, many DPOs have been using offices which are much smaller than before, cramped, and dispersed, and often less accessible.

What if the “new normal” says that people who are younger and non-disabled can happily move about, socialise, go out to events, but the “vulnerable” will have to stay indoors and keep using zoom. And DPOs as responsible employers will be rightly worried about the thought of staff teams being asked to return to their small offices.

So some new thinking is required.

Firstly, a covid-19 vaccine is not certain, and if possible it will take many months to develop, and no-one can say yet how long it would stay effective for. There are other coronaviruses in nature where no vaccine for humans has ever been made despite many years of effort. And secondly, many people now agree that we need to redesign our new social arrangements to make us more pandemic-resilient against any future plagues that will come our way. There is good scientific research on the increasing interactions between humans and wildlife which is accelerating the movement of viruses between species.

So what might a pandemic-resilient new hub for DPOs look like?

My early guess is that it will be flexible, but not open plan. Given the circulation space needed for disabled people who are wheelchair users, this means larger offices which are not over-occupied by people or furniture. The previous hub had some of this, partly by accident because it was a retrofit of an institution which typically has larger rooms.

The new hub will also need to have a range of good transport connections, so probably near but not in the middle of a city or town, with significant parking for disabled drivers, with good public transport links (trams, buses, trains), easily walkable and with safe cycling routes. These are all general desirable features, so it means looking for a hub design or location that might also attractive to other organisations with more clout – and not accepting the cast-off options.

In design terms, the hardest element of a new hub would be the meeting spaces within it. A core feature of the previous hub, as well as the synergies of many DPOs sharing the same place and all the conversations and joint working that resulted, was it’s ability to hold large meetings of disabled people without rubbish access. The parking was sufficient, the circulation space was (mostly) flexible, the necessary tech was built in, and the toilets were many and dispersed. Perhaps most importantly, the hub tenants were very skilled and knew how to run an accessible large meeting.

No-one yet has a blueprint for all of these requirements, but I feel the debate needs to start before DPOs are given “the answer” without even getting a chance to ask the question, what do we need now?

My previous blog post on a new hub

https://tonybaldwinson.com/2019/09/26/the-need-for-a-hub-in-manchester-for-disabled-peoples-organisations/

Keep well everyone.

Research Bulletin, May 2020

Hello and welcome to this monthly summary of research.

1. Independent Living and Covid-19

With deaths from the covid-19 pandemic raging through care homes in the UK currently, the focus of this bulletin is on research and history building on Independent Living (IL) and on radical Centres for Independent Living (CILs).

I believe the inevitable public inquiry will starkly show that many disabled people living independently in the community survived while their disabled comrades in care homes died.

Many people have emphasised how disabled people are being ‘othered’ in media and government messages once more as vulnerable people. But the lethal contrast between living independently and being an inmate in a care home shows how that deadly vulnerability comes from society, not from the person.

2. 1970 – Alf Morris anniversary

The current plans for celebrating the 50th anniversary of the Chronically Sick and Disabled Persons Act 1970 are some online events in September. Campaigns by disabled people in the 1960s have been outlined in recent bulletins.

A contemporary Labour Party MP of Alf Morris was David Owen. They both went to the House of Lords after being MPs. A recent email from Lord Owen has added the following context to the campaigns by disabled people at the time:

“… commenting on your paper and the National Campaign for the Young Chronic Sick. I knew its chairman, Marsh Dixon, because if my memory serves me right we were both members of the Chelsea Labour Party when I lived on a houseboat off Cheyne Walk from 1960-64. He was the power behind the Campaign. I think it was a few years later that Alf took up the cause. Also Jack Ashley.

I was due to present a Private Members’ Bill to the House of Commons when I was appointed Minister for the Navy in July 1968 and I passed the Bill on to Jack Ashley to present in the Commons and it was his first speech after having [become profoundly] deaf due to a viral infection. I was there to listen to him and Alf almost lay on the bench in front of Jack putting his index finger and thumb up in the air moving apart to indicate to Jack whether to be louder or quieter. It was quite a performance from both of them.” Lord David Owen, email, 27 April 2020.

3. GMCDP Archive

Last month I started a list of the collections in the GMCDP Archive, and the list below starts to add some dates for what’s within these collections:

COLLECTIONS
Colin Barnes 1980-2018
Philip Mason 1980-2018
Manchester Disabled Athletes 1969-2012
Ian Stanton 1984-1998
Manchester Mind 1970-1990
UPIAS (Union of the Physically Impaired Against Segregation) 1972-1990 Kevin Hyett 1970s-2004
John Evans 1981-2020
Jane Campbell 1980s-2019
Maggie Davis 1966-2019
Ken Lumb 1968-2008
GMCDP Archive Project Group 2003-2020

In April the Lorraine Gradwell collection started to be formally assembled and so far it consists of around 400 items in 14 storage boxes from being a teenager in 1971 onwards, and catalogued. There is more to be done yet, but the progress is encouraging.

In 1993 GMCDP produced a booklet on the NHS and Community Care Act 1990, calling for better implementation of community care and independent living, and providing advice on how to challenge poor practice by official bodies. I scanned a copy of this booklet and circulated it in social media, especially because of its relevance now with the so-called easements of the Care Act. Link here:

https://tonybaldwinson.files.wordpress.com/2020/05/1993-gmcdp-guide-to-the-nhs-and-community-care-act-online-friendly-22-pages.pdf (online friendly)

https://tonybaldwinson.files.wordpress.com/2020/05/1993-gmcdp-guide-to-the-nhs-and-community-care-act-print-24-pages-a5.pdf (print friendly)

4. Another Book

One disabled person reading the April Bulletin got in touch to recommend a book they had read in their youth. ‘The Empty Hours’ radicalised their politics, they said, especially on avoiding going into an institution with every resistance they could muster.

The Empty Hours: the weekend life of handicapped children in institutions by Maureen Oswin (1971, Pelican books)

Keep well everyone

Research Bulletin, April 2020

Hello,

Well, one month on from the previous Bulletin and the world has changed completely. But at the end of it, we will still need radical research to guide better policy and practice.

I suppose the first point to make is that research itself (at least that based at universities) is suddenly in a place of massive uncertainty. The commercialised business model of higher education in the UK, underpinned by fees from overseas students, has collapsed, and even if there is a bail-out financially I don’t think anyone yet knows what the sustainable future of research within higher education will look like. Only today (10 April) the Universities UK umbrella body was asking the government for a two-billion pounds bailout.

Now, on to the usual practicalities.

1. 1960s. The 50th anniversary events by Manchester Histories of Alf Morris (MP and then Lord) and his landmark Act of Parliament, the Chronically Sick and Disabled Persons Act 1970, have been put back from June, pencilled in currently for September. As part of this theme, my research into the campaigns by disabled people and allies in the 1960s moved on a step in March when I visited the British Library in London and found a copy of the letter in the New Statesman political journal in 1966 by Marsh Dickson which got Pamela La Fane first involved in the National Campaign for the Young Chronic Sick, which fed into Alf Morris’ law.

2. 1920s. The 100th anniversary of the National League of the Blind (“and Disabled” was added later) of their march to London for employments rights was on Sunday 5 April. A replica banner has been made (credit: Jenny Gradwell) and the plan was to congregate in Stevenson Square in Manchester and then in Leeds. Of course, that plan was abandoned, and social media posts were used to celebrate the anniversary instead.

3. 1980s onwards. Some elements of this are still confidential, but the GMCDP Archive work is moving forward slowly despite the current crisis. A recent independent professional assessment of its contents noted that, if all the boxes of papers and such were put on one shelf it would have to be 130 metres long. That’s longer than a double tram. I think this alone gives a sense of its significance and potential for learning by activists and by policy makers and influencers.

For me a key recommendation in the assessment report is that this archive is actually an important series of collections. I’ve started an (incomplete) list of these collections here. Please note that some are still works in progress.

. British Council of Organisations of Disabled People BCODP . Disabled People’s Direct Action Network DAN
. Disabled Women in London
. Greater London Action on Disability GLAD
. Greater Manchester Coalition of Disabled People GMCDP
. Manchester Disabled Athletes Collection Muscle Power
. National Centre for Independent Living NCIL
. National Organisation of Disabled Lesbians and Gay Men
. Research Publications Section
. Union of the Physically Impaired Against Segregation UPIAS

. Colin Barnes
. Dorothy Mallon
. Ian Stanton
. Jane Campbell
. John Evans
. Ken Lumb
. Kevin Hyett
. Lorraine Gradwell
. Lucy Wilkinson
. Maggie Davis and Ken Davis
. Paul Darke
. Philip Mason

4. 1990s. In late February I joined an informal lunch-meeting in London with some DAN alumni and a TV production company which is looking to make a docu-drama programme on DAN in the early 1990s and the campaign for civil rights. Of course, since then the production is on hold for the moment along with many other non-essential tasks in a time of covid.

5. 1970s onwards. One of the poignant effects of lockdown is that I plan to spend more time at home cataloguing the Lorraine Gradwell Collection, which is currently eight boxes and likely to grow. I’m hoping the catalogue (spreadsheet) will conform with the national standards, and will be checking out drafts with colleagues.

Finally, the other items from the February and March Bulletins are ticking over in the background.

Thank you all, and keep well and safe.

Tony

Previous Bulletins:
February 2020 –
https://tonybaldwinson.com/2020/02/06/research-bulletin-february-2020/ March 2020 –
https://tonybaldwinson.com/2020/03/03/research-bulletin-march-2020/

What might be next for jobs?

The UN has estimated that 195 million jobs will be lost by the covid pandemic. A recent survey by the UK’s Creative Industries Federation (interest declared) has shown that 42% of creative businesses have already lost 100% of their income.

In thinking about what next, there are the immediate responses by various governments to protect incomes, housing and food. Often flawed and with big gaps, but also temporary. What might come afterwards? To use the phrase, what will be the new-normal?

Some suggestions

1. Re-booting

All the talk of business scale-up and growth will now feel very dated. I think we’ll be dusting down our start-up resources, not least because even when the same people in the same company try to continue with the same work with the same clients … the reality will be that it will be start-up tools and methods that will be needed, but maybe called re-booting to acknowledge the natural human desire for continuity.

2. Cooperation

It tells you just how much of a crisis the world is facing when a UK Conservative government gives press conferences with phrases such as “working with our friends in the trade unions”. Of course they are right to do so, but just check how far we have already changed. The common cause and grassroots volunteering will not just fade away, and I guess I want to believe that at least some of this new co-operation will endure. Consider, for example, a so-called blockbuster movie. Traditionally the investors would work with producers for a return on investment (profit, or sometimes loss) and the staff would be hired and fired as needed. In the make-up department they are called ‘dailies’. But imagine everyone works with co-op contracts, a living wage at the time plus a % of future income. And investors get a fair return, not super-profits. Of course, many creative projects do struggle to get funding as a rule, and to cover costs, but that doesn’t mean that a fairer, cooperative model isn’t possible.

3. Innovation

I worry that the public sector – the world of local authorities, LEPs, DCMS, etc etc – and its orbiting moons such as BFI, Arts Council, National Lottery – will find it hardest to adapt to the new world we find ourselves in.

The public sector staff culture might be something like saying, “well, we’ve done a lot of working from home, and put some new apps on our phones, but now it is back to the office, the 7.27 train, and making more spreadsheets on the server for clients to fill in”.

Whereas creatives in the private and independent sectors will probably be saying, basically, “You know what, that office was mostly a waste of money anyway, let’s spend the rent instead on a summer camp and bring the kids and elders along” or whatever.

In short, I think there is a risk that the next innovations will act as a cultural wedge where the public sector risks being stuck in the past. But possibly some public sector leaders will start to look beyond the old model of command and control, centralisation, outsourcing essential services, and unsustainable pay differentials.

And if innovation means we’ll never have to hear again about KPI seminars, well friends, wouldn’t that be something!

Immunity and stress

A reminder to everyone that protecting our immune systems is essential.

So, a quick recap:

– eat well, inc vitamins and fibre
– sleep well
– exercise but not frantically
– reduce stress.

Reducing stress is maybe hardest at the moment, and we all have a responsibility for others as well as ourselves.

– limit how much news you read and watch
– take responsibility for not stressing others
– show acts of kindness and generosity
– accept that things are changing now
– find moments of serenity despite the new.

Sign here: …………………………………..

Failures to meet the challenge

In this time of unprecedented pressure with the pandemic of the covid-19 illness devastating the world, it’s worth taking stock on the challenges so far in the voluntary and community sector, and frankly speaking, who are failing to meet them. This is important, I suggest, because after these awful times have passed we will long remember who performed well and who fell short.

Commissioners

Let’s start with the commissioners. No names, but we see commissioners issue deadlines for applications and having many NGOs staff putting in extra hours at this time – the most difficult of times possible – only to be told with just hours before the deadline, sorry but we’ve cancelled the call and sorry for any inconvenience caused. “Inconvenience,” FFS?! Either cancel it in good time or let the process run to completion and at least get some money out to NGOs at the time when many are struggling to make the next payroll. But getting NGOs to do almost all the bidding work at a time of maximum stress for absolutely zero benefit anywhere – shows remarkably both a callous cruelty and a low level of institutional intelligence.

When this is all over, it will be useful to discuss the questions around the new commissioning culture and competence.

Remote working, multiple channels and micro-management

Speaking today to staff in NGOs in Bristol and Manchester, there seems to be a new theme in WFH (working for home) and potential communications and work overload. With the legitimate concern about some staff feeling isolated and alone, we might have forgotten that over-communication is also possible and dangerous too. Colleagues have described how they are receiving messages down multiple channels – here are eight common ones: emails, phone calls, WhatsApp messages, Zoom conferences, texts, Facebook feeds, Slack channels, Twitter storms and the like.

NGO managers have a key role here, not least to remember that every two-minute email by them may make two-hours of work for the person at the other end. Working in the same office, the manager might see the expressions and even sense some push-back by their staff: remotely they just keep pumping it out. These is CCTV film from the NASA control room during the Apollo 13 “we have a problem Houston” crisis where the mission controller just says to everyone there, “can we have less chatter in the room please?” Indeed.

Some good funders

And in other news, word has reached me of a funder who has said they might consider approaches outside the usual cycle of applications for worthwhile projects struggling to meet deadlines with all the chaos and stresses at the moment. I suggest they will be remembered with a high regard when some of the other players have lost whatever good name they once had.

(end)

Coronavirus Covid-19, disabled people, and home nursing

The UK government is now being criticised by some respected public health experts for a lack of transparency and urgency, especially around home nursing.

One such critic is Professor John Ashton from the north west of England, who my late wife Lorraine Gradwell knew and respected from her time working at Health Manchester 2000.

In short, the criticism is of a lack of transparency about the NHS and it limitations to cope with an epidemic. Because of austerity there have been massive cuts in the number of hospital wards and beds, and this includes intensive care units, ICUs. Hospital beds and ICUs are already at full capacity because of so-called winter pressures. We knew that staff shortages were already an issue from the debates in the General Election last year. The controversies about the alleged 40 new hospitals and 50,000 new nurses, or not.

We now know that between 70% and 90% of people will get a covid-19 infection. After this, there is so-called herd immunity. There will be no vaccine ready during this period.

For most people, their infection will be mild. Some younger, healthy people may not even know they have had the infection and have been contagious.

But for elderly people and for many chronically sick and disabled people with compromised health the infection will be severe and many will die. Somewhere between 1% and 3.4% of the population will die as a result.

Even at the lower end of the estimate, there are nowhere near enough ICU beds in hospitals. And brutally speaking, the chances are that hospital ICU beds will be reserved for “special cases” such as younger people only, and even then might be stretched to the limit.

So, if the UK government was being transparent, they would say now that for the vast bulk of people who will be severely infected, it will be what is called “home nursing”.

In the absence of proper, transparent advice, we have to try and plan for what that might mean for disabled people who already use personal assistants (PAs) for what some health professionals might consider as a form of basic nursing.

So let us make a guess: home nursing in the community will, like the hospitals, being very over-streched. So if they find someone with PA support they will expect PAs (along with any family members living in the same home) to provide the bulk of nursing.

Frankly, I think and fear that this will be mostly oxygen (tanks delivered to the house, by the bed with a nose cannula) and pain relief. Experienced nurses will probably be given authority to prescribe and carry morphine, at least for a year.

I wish I could be more optimistic here, but in the absence of transparency I don’t see what more can be done by the NHS.

When you go around a museum and see the field hospitals used in World Wars One and Two, with volunteer nurses, army orderlies (who could change dressings), and stretchers laid out in lines – I suspect we will be working at that level again, but hidden away in hundreds of thousands of homes rather than in tents in the park.

And the advice will move on – call 111 when someone has died.

But for now, no transparency.