On the Disability Rights Movement: how to paint the picture that needs to be painted?

Many, many posts over the last 5 years have highlighted the considerable debates going on regarding disability issues (welfare, employment, media portrayal etc.), as well as the place of disability itself within wider agendas (poverty, rights, legislation etc.)

And many various posts in the last few months have discussed both fundamental debates about the underpinnings of disability (‘sickness’ and ‘disability’, questions around the social model, the unity or separateness of different impairment groups etc.) and the current state of the Disability Rights Movement itself[1].

Pulling all of this together, we can see the Disability Rights Movement to have lost direction, become narrow and not at all cohesive compared to where it has previously been.

I’ve been thinking a lot about this and what can be done about it. With so many fundamental questions, my feeling is it’s difficult to draw any kind of overall picture that might have an element of cohesion or consensus behind it. Without such cohesion or consensus, any attempts at future improvement are much less likely to be successful. Trying to draw such a picture is, I think, what the calls[2] for a Disability Rights Taskforce have been driving at: the establishment of a process that can explore a wide range of questions that are of different orders.

A Disability Rights Taskforce would therefore be how we can paint the picture that needs to be painted. To this end, we might think of the job of any Disability Rights Taskforce to be as follows:

Disability Rights Taskforce

By having such a process and being explicit about the different levels of issues to consider, I think we can give ourselves the best opportunity to create a cohesive Disability Rights Movement for the 21st century. If we move too quickly to the questions of strategy or tactics without considering the principles these need to be based on, we would run the risk of not creating a 21st century Disability Rights Movement that can build on and learn from the successes of the 20th century Disability Rights Movement.

Two questions flow from this:

  1. What do you think?
  2. Who do we need to persuade to make this happen?

Notes:

[1] – There have been many posts on these topics. The ones that have informed my own thoughts and feelings are this are Lorraine’s, Jenny’s, Neil’s, Rob’s, and Mark’s.

[2] – Neil first mentioned a Disability Rights Taskforce, building on a previous idea about a commission on the future of disability rights in Britain.

#SCIEroundtable on community-led social care

Image by Nigel Wedge on Flickr
Image by Nigel Wedge on Flickr

The Social Care Institute for Excellence (SCIE) yesterday hosted an event on community-led social care. It’s the first in a series of events they will be hosting over the coming months, and if this one is anything to go by the rest will be well worth attending.

It’s not unusual to have speakers at events make you stop and think. It is unusual, though, for every speaker and all subsequent contributors to share views that are of a consistently high quality, offer fresh insights, don’t fall back on lazy or repeated wisdom, and all of whom stick to time. Somehow, though, that’s what was managed yesterday!

It wouldn’t do justice to the richness of the discussion for me to attempt to summarise what was talked about. Further details will, I think, be shared; but here are 3 things I particularly enjoyed in yesterday’s discussion.

  1. We must spend more time and effort thinking about “scaling across” instead of scaling up. Another way of thinking about this is about spread rather than size per se. This reflection came from people recognising that approaches which are working may work precisely because their characteristics work at a certain scale. By changing the scale you then affect the characteristics. Rather, then, than fundamentally changing the size (through scaling up) the smarter thing to do is think how to replicate (scale across, or spread).
  2. The ingredients of what makes stuff work are, by now, relatively familiar (though by no means regularly recognised or understood). These include trust, good relationships, good leadership at all levels, a shared vision etc. But more than this, the way in which these ingredients are brought together – the recipe – matters just as much. What’s more, the recipe may change from area to area, and whilst the ingredients are necessary, they aren’t sufficient. This leads to the idea (and switching metaphors) of creating an eco-system in health and social care (say), rather than just a system. This gives a better view of the range, diversity and strength of connections needed between all parts of the system, as well as thinking about what those connections are between.
  3. Paul Streets from Lloyds Bank Foundation shared what they call the “3 tyrannies” of commissioning: specifications, standards and scale. I shall be liberally repeating this!

For what it’s worth, my own reflection was on this idea of the “deficit of candour” in public services. Whilst there aren’t honest conversations about what public services can and can’t achieve in terms of people’s expectations and what they’re willing to pay for them, it becomes harder to create the conditions in which an eco-system could flourish. For me, one way of bridging this is by highlighting what rights people have: if people are equipped with this knowledge, not only will it help to rebalance the existing distribution of power between people and professionals, but also help people to think how they themselves can use their identity and capabilities to contribute themselves to the eco-system.

Thanks to everyone involved in yesterday’s stimulating debate, and thanks for SCIE for organising such a great session. The hashtag for the roundtable is #SCIEroundtable.

The disability rights agenda: too narrow, possibly lost, or both?

I fear we’re in danger of the disability rights agenda being too narrow, possibly lost, or even both.

I say this because of the following 8 impressions, which are by no means comprehensive:

  1. The emerging Green Paper from the Department of Health seems to be focused primarily on people with learning disabilities or autism [1]
  2. A related blogpost (which happens to be from my employer) calls for a progressive learning disability agenda across the sector and society that values “rights, independence, choice and inclusion for ALL people with learning disabilities” [my emphasis]
  3. Preserving the Independent Living Fund is presumed to be the same as preserving independent living, when I suspect in practice campaigning attempts will (if successful) preserve funding levels around individuals specifically related to care and support
  4. Welfare reforms and resulting campaigns have focused on specific issues like the Work Capability Assessment and who provides the assessment service, or the Bedroom Tax – both largely from a deficit-based, medical model perspective). There has been comparatively little focus on employment support for disabled people or what housing options are available
  5. There has been very little broad campaigning action beyond those interested in higher education on the proposed changes to the Disabled Students’ Allowance
  6. Lobbying and campaigning regarding the Children & Families Act has been largely confined to children’s charities and SEN-related organisations, and doesn’t seem to have reached the broader disabled people’s movement
  7. Disability hate crime appears to have dropped off the agenda
  8. Anything relating to “people with mental health problems” largely remains a separate consideration to issues regarding “disabled people”.

There are some brighter spots, of course: the Care Act (albeit “only” in the sphere of social care) and positive attempts to mobilise the “disability vote” are two.

But, whilst there are arguments which could be made for each of the things listed above being separately needed, to my mind there is no overarching framework within which all of them hang together. There is no agenda around which all people with a commitment to disability rights and equality for all disabled people can coalesce.

In this context, the apparent disappearance of the Office for Disability Issues, the most recent, relatively lacklustre attempt at any sort of disability policy agenda (Fulfilling Potential), and the loss of whatever momentum there was from the Paralympic Games, are all major causes for concern. Irrespective of how effective they were, they represented the last political, policy and institutional bases of the disability rights agenda.

What to do? Clearly, we need to wrestle back a disability rights agenda into the political sphere. There are at least two active suggestions as to how this can be done:

  1. Establish a Disability Rights Taskforce after the next general election
  2. We should consider disbanding the Department for Work & Pensions and shift to an approach that works on a themed basis that more specifically has responsibility for a wide-ranging disability rights agenda, e.g. a Department for Inclusion.

Notes:

[1] – I haven’t included any reference to the LB Bill because I believe its intention is for it to apply to all disabled people, not just to people with learning disabilities.

Why we need a new Disability Rights Taskforce

Neil has called for a new Disability Rights Taskforce after the next general election[1].

He is right to do so.

Neil’s and many other people’s reflections on the narrowness[2] of Labour’s thinking when it comes to “policy proposals” affecting disabled people’s lives shows a clear need for such a Taskforce in purely political terms.

But I think there are at least two other bases on which the need for a new Disability Rights Taskforce rest: from the point of view of policy and legislation, and from the perspective of institutions.

Policy and legislation

The last fundamental, overarching and meaningful piece of disability policy is made up of the Life Chances of Disabled People report, published in 2005, and from which there is a direct line to the Independent Living Strategy[3] in 2008.

Other elements of disability policy have of course been published since then – most notably Fulfilling Potential (a discussion paper was published in 2012, “next steps” in 2012 and “the discussions so far” in 2014), the Disability and Employment Strategy at the end of 2013, and the Special Education Needs and Disability parts of the Children & Families Act. There has also been broader policy that has disproportionately affected disabled people, namely welfare reform and reforms to the health and social care system. We have also seen the UK adopt (with some opt-outs) the UN Convention on the Rights of Persons with Disabilities (UNCRPD) [sic] in 2009.

But none of these have really and meaningfully either looked across all aspects of disabled people’s lives (with the exception of UNCRPD) or led to co-ordinated and concerted effort (at least, in a positive direction).

And, thanks to Jenny Morris, we have a good, independent picture[4]  of what progress has actually been made towards the vision set out in Life Chances and the Independent Living Strategy. You probably don’t need me to tell you how it’s gone, though “pretty crap” would cover it nicely.

Institutions

It’s more than “just” policy and legislation that’s the problem here, though: there are institutional factors that are having a significant impact on the drive to equal life chances for disabled people.

If it’s possible, let’s put to one side the financial crash of 2008 and the austerity that’s been justified because of it. Even without the money situation, there has been a significant shift in what people expect from public services and how those public services are delivered. The post-war settlement is very unsettled, and what this means for disabled people is as valid a question as it is for other groups.

And specific institutions that supported the disability equality agenda have disappeared or effectively become defunct: the Disability Rights Commission closed in 2007 and is one constituent part of the struggling Equality & Human Rights Commission. The Office for Disability Issues appears to exist only in name at the moment, and the role of Minister for Disabled People continues to be a junior ministerial role with other responsibilities (including child maintenance or health and safety) that is often a stepping stone to other things[5]. If any current institutions “own” the disability equality agenda, it’s two we probably wouldn’t want anywhere near it: the Department for Work and Pensions and the Department of Health!

What next?

If the political, policy and legislative, and institutional bases of the disability equality agenda are all effectively missing, what do we do? To my mind, the suggestion of a new Disability Rights Taskforce in 2015 is a way to answer this question in the broadest possible sense.

Notes:

[1] – If you haven’t already it is well worth reading the final report of the 1999 Disability Rights Taskforce (pdf)

[2] – Call me old-fashioned, but the 12 pillars of Independent Living covered what disabled people want pretty well, didn’t it? For a more modern take, Neil Crowther’s “Refreshing the Disability Rights Agenda: a future imagined” is tremendous

[3] – It’s telling, to me at least, that it isn’t easily possible to find a copy of the Independent Living Strategy anywhere online

[4] – It’s also telling, to me at least, that this sort of progress review had to be done independently rather than, say, by government. There used to be an Independent Living Scrutiny Group, but that was, of course, disbanded in 2013

[5] – Since 2005 I reckon there have been 7 Ministers for Disabled People, including 4 since 2010.

Enfranchise disabled people

I know what you’re against, but what are you for?

I don’t know who to attribute this statement to, but whoever said it was right, and captures my personal frustration with most campaigning.

For example, the current welfare reforms are clearly terrible. But, even if campaigns against the reforms were successful (and I generally hope they are) and left us where we were before the 2010 General Election, we’d still have a welfare system that I haven’t heard one sensible commentator suggest was working well.

So as well as being against something (for example, welfare reforms) it’s also our responsibility to be for an alternative.

The latter is often missing, to the point that when you see it, it strikes you with some force. And, goodness me, Neil Crowther’s Refreshing the disability agenda – a future imagined is brilliantly striking and tremendously forceful. It’s exactly the kind of disability rights agenda I’d sign up to, and I urge you to read it.

Clinging on to Neil’s coattails, I’d like to suggest one further addition to his excellent headings: that disabled people are enfranchised.

How many disabled people vote? It’s a question I’ve always wanted to know the answer to, but have never found.

We know that disabled people often find voting booths inaccessible, so that campaigns to increase physical and other types of access (for example, for people with learning disabilities) exist. But this is process stuff. I’m after understanding the proper place – and so power – of disabled people as a voting bloc within the electorate.

Equivalent precedents exist: in the same way we talk about the “Pink Pound” we now (occasionally) talk about “the disabled pound”. In voting, we have the Suffragettes and Operation Black Vote that have aimed to secure the political representation and enfranchisement of women and people from BME backgrounds.

A positive part of the future disability rights agenda, therefore, must be one which seeks to understand, further and secure the place of disabled people as an equal part of the electorate, and with it our equal role within democracy.

Mental health and the social model (plus a bit of nonsense from the Guardian’s sub-editors) (updated)

For the past 10 years or so, my work has been in the area of disability rights, especially from a user perspective.

One of the great privileges of that work is observing the reactions of people – disabled and non-disabled people alike – when they are introduced to the Social Model of Disability, and how it affects their attitudes and everyday life in the subsequent weeks, months and years.

To recap: there are various models of disability. The two most common are the “medical” model and the “social” model.

The medical model focuses on the medical condition of a person – their impairment; their condition; their disease. And it looks for ways for these to be diagnosed, categorised and ultimately cured. What flows from the medical model of disability is typically a focus on someone’s physical or mental condition rather than the person themselves.

The social model of disability puts the person at the centre. It says that a person is disabled by society around them – not just physical barriers such as steps or revolving doors, but also by attitudes towards disabled people (such as pity, charity or fear). Though a disabled person still has an impairment (i.e. in the broadest sense their condition), what makes them disabled is not their condition, it’s society.

Many important things flow from this shift in thinking, and it’s how people approach this shift in thinking that’s such a great privilege to observe.

(For anyone who is interested in more about different models of disability and their implications this guide is an excellent introduction, and I’ve written at further length about this here.)

Why am I blogging on this now? It’s because there’s a fascinating debate at the moment about how the social model of disability (or other models) apply, or not, or some version of it, specifically to the area of mental health.

The latest manifestation of this debate is prompted by the division of clinical psychology (DCP), part of the British Psychological Society, who will be publishing a statement that calls for a “paradigm shift” in how mental health is understood.

(Update: here’s the statement (pdf)).

It’s great that this professional body is engaging in the debate in this way. It draws on a significant literature that mental health users/survivors and others have been writing for a considerable time – see, for example, this paper from the Joseph Rowntree Foundation from 2010 or pretty much anything on the social model from the Centre for Disability Studies at Leeds. This is also a significant theme that runs through the literature on recovery and mental health (such as these papers from the Implementing Recovery through Organisational Change project).

It will be interesting to see how the debate progresses, and good on DCP for going with it.

In their usual subtle contribution to the issue at hand, the Guardian’s sub-editors have called this a “battle” between the British Psychological Society and the Royal College of Psychiatrists. To ensure maximum helpfulness, the Guardian also poses the question “Do we need to change the way we are thinking about mental illness?” and asks people from both “sides” to argue either “yes” (clinical psychologist) or “no” (clinical psychiatrist).

In understanding this to be a debate that perhaps can’t be characterised in such black and white terms, below are 3 principles I modestly suggest it will be useful to keep in mind:

  1. It’s not an either/or between a social and medical way of thinking about mental health – these things are complicated, endlessly fascinating and subject to however people choose to perceive them from whatever their perspective might happen to be at any particular time
  2. Let’s ensure that all people have a chance to contribute to and define this debate: it’s particularly important – paramount, actually – that people with mental health conditions themselves are central to the debate, with professionals, family, carers and others all contributing
  3. We mustn’t forget that these debates – genuinely fascinating and important as they are – don’t always have an immediate impact on the lives of people with mental health conditions and their day-to-day experiences of public services. Alongside the theoretical debates, there is a lot we can all practically do to improve people’s experience of mental health services and their lives as part of their local communities.

The Tories, Chris Grayling and gay people

Despite making a huge gaffe when it came to gay rights recently (as covered here), David Cameron has claimed his party now has a good record on gay rights.

Well.

Step forward Chris Grayling:

The Tories were embroiled in a furious row over lesbian and gay rightson Saturday after the shadow home secretary, Chris Grayling, was secretly taped suggesting that people who ran bed and breakfasts in their homes should “have the right” to turn away homosexual couples.

In a recording of the meeting of the Centre for Policy Studies, obtained by the Observer, Grayling makes clear he has always believed that those who run B&Bs should be free to turn away guests.

“I think we need to allow people to have their own consciences,” he said. “I personally always took the view that, if you look at the case of should a Christian hotel owner have the right to exclude a gay couple from a hotel, I took the view that if it’s a question of somebody who’s doing a B&B in their own home, that individual should have the right to decide who does and who doesn’t come into their own home.

He draws a distinction, however, with hotels, which he says should admit gay couples. “If they are running a hotel on the high street, I really don’t think that it is right in this day and age that a gay couple should walk into a hotel and be turned away because they are a gay couple, and I think that is where the dividing line comes.”

Now, if you think Grayling’s distinction is a reasonable one then, bearing in mind he is in line to be the next Home Secretary, you’re welcome to him. But the discriminatory position, let alone the intellectually and morally inconsistent one, he holds should be more than a major worry to every fair-minded citizen of this country.