Saturday, 5 April 2014

So What's Wrong With Disability Confident?

Disability Confident is a DWP initiative, running from July 2013 to July 2015, which is intended to persuade employers to take on more disabled people as employees. So how come disabled people are campaigning against it? And why did Disabled People Against the Cuts invade their latest event?

Inspiration Porn

I shouldn't have to explain why Inspiration Porn is a bad thing, but apparently I do, and not just to the man in the street who doesn't have a background in disability politics, but to supposedly prominent disabled people who are interfacing with government in our name and should know this stuff inside out. Just today I had a disability consultant tell me that by raising issues around Disability Confident and Inspiration Porn I was 'do(ing) more damage than good' (which instantly made me sit down to write this blog).

Er, Inspiration Porn, what is it? If you really don't know, or if you're a disability consultant and only think you know, then read this: We're Not Here For Your Inspiration (by Stella Young), or this: Explaining Inspiration Porn to Non-Disabled People (by Cara Liebowitz) or this Disabled People Are Not Your Inspiration (by s.e.smith). Actually all three are excellent articles written by disabled people who know exactly what they are talking about, so read them anyway.

The specific problem with Disability Confident and Inspiration Porn is that it institutionalises the idea that disabled people must somehow be 'inspiring' to be considered a success, or even just adequate. This manifests in two different, and opposite, forms. In the first form, we're objectified as inspiring just for getting out of the house or other normal activities; this reduces us to Tiny-Tim like symbolism, with actual achievement discounted. In the opposite form, every disabled person is expected to have the same abilities as a Paralympian, and judged a failure if they don't achieve equal prominence, this isn't simply a theoretical threat, there really are people out there saying 'if Paralympians can do that, then clearly no disabled person can claim to be unable to work", or in a common variant 'Well, if Stephen Hawking can work...'. This whole area of disablism is closely related to the Tory narrative around disability, which says that a disabled person only has worth if they are holding down a job, and classifies us as scroungers, frauds and skivers if we cannot, which perhaps explains why Disability Confident is so closely bound to Inspiration Porn. The overall effect is to denormalise disability; we are either successes just for breathing, or failures for not achieving multiple Paralympic golds alongside a career that's headed for the business stratosphere; and all of this simply pushes true, Social Model, equality for disabled people, where disability is just another aspect of 'normal', further and further away.

Inspiration Porn problems with Disability Confident have existed since its launch in June 2013; if you look at the contemporaneous 'Fulfilling Potential - Making it Happen' brochure which outlines the government's entire disability policy, Esther 'they get better' McVey, then Minister for Disabled People, managed to use the i-word ('inspiring', and variations, including 'incredible and inspiring') four times in her two page introduction. Arguably this is a continuation of their previous campaign 'Role Models', which oddly enough focused on disabled people DWP believed to be 'inspiring role' models (yes, I complained about that too). The actual Disability Confident launch event only confirmed what we had feared, with Esther McVey announcing, when challenged on enforcing disability enforcement law “I am not somebody who would want to tell somebody what they have to do. We have to work with business.” While Disability News Service reported Government’s softly-softly jobs conference sparks anger with quotes from a range of disabled people, some in the hall, some commenting over social media (including me), Mik Scarlet, who had received an invitation to the launch, reported on the first-hand experience at Huffington Post, calling it The End of Solidarity? and reporting major problems with not just "the ridiculous over use of the word "inspiring" every time a disabled person either spoke or was mentioned," but that "the stage was filled with five disabled people who in turn told the audience the "inspiring story of their disability" then "passed a negative judgement on any disabled person who was not in work". Add to that repeated instances of disabled people, many of them supposed disability access consultants who should know better, advocating a Hierarchy of Disability and Mik tells us he "escaped the conference early and drowned my sorrows over a coffee"

Nor was this some opening-day miscommunication. Despite protests from disabled people, every Disability Confident event has seen similar issues, with messages all through the day about how inspiring it all is and with CEOs of major employers coming away tweeting about how 'inspiring' we all are, including the keynote speaker at the latest event (and he was still doing it a week later); messages which were also repeated by many people who should know better. Indeed some of the companies and minor charities DWP has chosen to work with in Disability Confident actually have inspiration porn built into their very names, such as recruiters 'The Clear Company' who tweet under the account name 'InspireToHire'.

Disability Confident's own guide for businesses actually talks about the need to address unhelpful attitudes towards disability in the workplace, but the entire initiative then proceeds to positively enshrine inspiration-porn as the core of a strategy for supposedly improving attitudes towards disability. If you build your structure of improvement on a false premise, that inspiration porn is good for disabled people, then the whole enterprise is doomed to fail, or worse, further entrench disablist attitudes - in this case that any disabled person who isn't 'inspiring' has somehow failed, and disabled people have been trying to get that message across for almost a year now.

It's about ability, not disability (sic)

Nor is pure Inspiration Porn the only issue, a message that keeps being recycled at every Disability Confident event is that 'It's about ability, not disability', this is the kind of half-cocked phrase that sounds like a good thing from the non-disability perspective, but promises to be a nightmare for actual disabled people. It is right to a very limited degree, you shouldn't be looking at my disability during recruitment, in fact you are legally obligated under the Equality Act 2010 not to consider my disability until after you offer me a job. But once we pass that stage it is very much about both my ability and my disability, because my disability brings obligations and entitlements. I, and every other disabled person, need to know that the particular needs we have around our disabilities, whether that be an individually fitted chair, the ability to take a break as needed, or whatever, will be addressed without negative consequences, and our rights to these  'reasonable adjustments' are enshrined in the Equality Act. Unless I know these needs are addressed, I can't have any confidence in you as an employer; and in any case making reasonable adjustments is good business sense, it allows your workforce to perform at their peak. But 'It's about ability, not disability', tells companies that if they focus on my disability, at any time, then they are doing it wrong. The difference is only a word, but  'It's about ability, and disability', together with a careful explanation of obligations under the law, would transform the message of Disability Confident into something far more useful.

How Do We Fix This? 

As I discussed in Disability Employment : Time to Confront the Bigotry? I think the entire approach of the DWP to Disability Employment is wrong, and very possibly deliberately wrong. DWP is not an organisation with a healthy view of disability, holding to a twisted version of the BioPsychoSocial Model of Disability which holds disabled people at fault for wilfully not recovering from their disabilities; meanwhile its current lords and masters, IDS and his coterie, are beholden to the Tory party dogma of meeting the demands of business first, last and always. The real problem disabled people face is active disability discrimination both in the recruitment market, and in the workplace, sometimes from colleagues at the same level, but frequently from management, and often not just first or second line managers, but very senior managers in companies which are household names. This entrenched disablism has survived 50 years of pre-Disability Discrimination Act employment quotas for 'Registered Disabled' people (a term many companies seem to believe still exists) and a generation of post-DDA discrimination law without shifting in its refusal to treat disabled people as equal. We won't fix this by telling disablist employers to be nice to us - the approach Disability Confident has adopted - it will take a concerted crack-down on employers and a few salutary convictions for breaches of the Equality Act to even start to have a true impact.

Disability Confident is right to point out the ability of disabled people to employers, but it needs to be a message that covers the full range of ability, so that disabled people aren't competing against a false expectation that demands we be better than our non-disabled colleagues. And the message needs to be taken to its logical conclusions, pointing out that equal employment would mean two million more disabled people having employment isn't much use when there are only 600,000 vacancies out there, but the logical conclusion from this, that anything up to 2 million disabled people have been denied work due to workplace disablism, that's a headline to grab attention and set people thinking.

Teaching employers to be confident enough around disabled people that we no longer run into exclamations like 'I never thought about a disabled person applying' (yes, someone really said that to me, at a company regarded as avant garde in employee relations) has a certain value, but only if it is followed through with all the supporting measures to help employers understand that disabled people exist within a legal framework that compels them to simultaneously recognise our disabilities, treat us as individuals (because recognising our individual disabilities and their reasonable adjustments is required in law), and treat us as equal to everyone else. If they won't agree to treat us within the law, then a) Disability Confident is wasted on them, and b) why aren't we prosecuting them already?

For me to be confident in an employer I need to know that they will understand the needs of my disability, and that they understand the legal rights to measures to ensure my equality that being disabled confers on me. If Disability Confident can't deliver that, and as it stands it can't, then it is worthless to me.

The DPAC Protests

I must admit I was initially annoyed at the DPAC protests at the last Disability Confident event, both in the hall and on Twitter; in all my opposition to Disability Confident I had tried to keep the focus exclusively on how to improve disability employment - trying to do the job that Disability Confident was failing at - and drawing a distinct line between that and my campaigning work on Welfare Reform, because I oppose the aim and methods of Welfare Reform, but only the methods of Disability Confident, not the (professed) aim. And I think that distinction got lost in the online 'twitterstorm', and in the points made by DPAC's speaker in the hall. Focusing the twitterstorm was always going to be difficult, so I'll give DPAC a partial bye on that (only a partial one though, the suggested tweets here drift all over the Welfare Reform map, often having little direct relevance to disability employment). I still think that the in-hall approach was wrong, attacking the employers simply for being bankers or 'having their snouts in the trough' was only going to make them close ranks and ignore what was said, and it wasn't challenging them on their records of disability employment, which was surely the reason for the protest in the first place. Challenging them on why they still haven't implemented the Disability Discrimination Act 1995 a full generation on, and why we needed Disability Confident at all, that was the way to both force them into thinking about the real problem of disability equality, and disability discrimination, and to opening a dialogue with them, and without that dialogue, we will not move forward.

But my annoyance faded considerably when I read the DPAC press release on the action, Disability Confident roadshow fails to address real barriers to employment for Deaf and disabled people which really is an excellent piece of work, one of the best I've seen in five years of campaigning. Amongst other things it made me realise for the first time that the statistic that disabled people remain in a job longer, often trotted out to emphasise how attractive we should be to employers, is really a symbol of our oppression, we stay longer because it is so much more difficult for us to move on, and that artificially stunts the careers of disabled people. There are similarly excellent points around Access to Work, segregated and inclusive employment, education - really, just read it.

And ultimately what distressed me most about the in-hall action wasn't disabled people standing up and trying to make our voices heard, but that it was other disabled people trying to shut those voices up. Did no one have the sense to say 'Okay, you're here now, and clearly not all disabled people agree with the approach we're taking, we'll give you 10 minutes to make your point and then we'll break for lunch and let everyone discuss it'. Are all the disability consultants, recruiters, and whatever really so thoroughly in DWP's pocket that all they can think about is shutting down dissent and trying to ensure everyone stays on message...

... like good little crips.


Disability Confident is broken, it won't fix the problem it was set up to address. DWP have no interest in fixing it, because it is broken in a way that serves Tory political interests. Disabled people, on the other hand, may be able to make Disability Confident work for us, and we do that by policing the #DisabilityConfident tweetstream. If an employer tweets about being inspired, tweet them a link to one of the Inspiration Porn articles above. If an employer tweets 'It's about ability, not disability', point out that ignoring your disability isn't a sign of their disability confidence, or that you need them to recognise both to be confident in them. And remember, to win we need these people to come over to our side of the argument, so keep it civil. If a disability consultant, or a recruiter, or a charity, or any of the other DWP hangers-on say something you wouldn't expect to hear from another disabled person, most especially if they try to shut down debate by telling you that you are damaging disability equality, as I had happen to me this afternoon, then challenge them on it.

Friday, 4 April 2014

Why Wanting a Better Care.Data is not Luddite

A piece at The Conversation makes the claim that opposing Care.Data and other elements of NHS digitisation is Luddite. Now seeing as many of the people raising issues with Care.Data are either computer types or research scientists this seems a particularly odd claim, but I thought it was worth replying to it with the reasons I choose to raise issues with Care.Data,which is a very different thing from opposing it outright. I initially put those reasons in the comments to the article, but they're worth repeating here in their own right.

Care.Data has the potential to be massively useful, I notice several research projects with immediate relevance to friends and acquaintances just in a quick skim through the Register of Approved Data Releases published on 3rd April, I support the principle aim of Care.Data of accessing mass data in order to improve clinical care through research, yet I continue to have significant problems with the proposed implementation, to the point that I advocate people opting out if those problems are not addressed. I phrase my opposition to the current state of Care.Data around four issues: one a principle of medical ethics, one a principle of good science, the third based on personal experience of issues around disability and the fourth a concern so widespread that candidates will be running on that platform at the next General Election.

1) Medical ethics: Informed Consent is the basis of all medical treatment, HSCIC has attempted to avoid patient consent at every stage of the Care.Data process. It was only the insistence of the Information Commissioner's Office that has seen HSCIC make any attempt at patient contact or provide an opt-out at all, and discussion of these, by only mentioning the advantages of Care.Data and not the risks, has been patently inadequate. The Health Select Committee made their opinion of HSCIC's performance so far abundantly clear. Yet even the 3rd April publication of the Register of Approved Data Releases, a month after the shortcomings of their approach were made clear to HSCIC, only discusses the positive aspects of data release with no discussion of the risk to patient confidentiality, making it clear that it is intentional, and continuing, HSCIC policy to actively avoid discussion of these risks, rather than simply incompetence.

2) Good science: Risk analysis is a principle of good science, good systems engineering and good management, HSCIC has fallen clearly short on all fronts. It is abundantly clear that HSCIC does not want to discuss the risk of re-identification, whether on an individual or mass basis, because that would take Amber, pseudonymized, data back under the remit of the Data Protection Act, compromising their entire business model. Good risk management does not sweep existential risks under the carpet, it puts them at the front of management discussions and develops a plan to address them. Unfortunately the ICO response here has also been somewhat lacking, although I suppose it is possible that they may be engaged in a particularly strict reading of the Data Protection Act that believes a threat to re-identify pseudonymous data is only their concern once it has actually happened.

3) Disability issues: The issue of stigma around disability and illness is partially addressed by Care.Data in the proposal to exclude HIV and STD status, however the stigma issues around disability are much wider (far wider than the non-disabled population is generally aware), particularly around mental health, yet when the issue was raised at the Health Select Committee hearing junior health minister Dr Dan Poulter dismissed it with the words 'That's just daft'. Just daft to him, perhaps, but many disabled people (myself included) have had careers destroyed by the stigma around disability, and have faced hostile reactions from casual acquaintances and even just those we pass in the street. Worries around the risks of re-identification are very real, for many disabled people having a career depends on concealing the existence of some or all of the facets of their disabilities, Care.Data potentially compromises on a mass basis our ability to choose whether or not to disclose disability.

Equally we know that the Department of Work and Pensions have already made at least one proposal to access confidential medical data (a request for access to the Hospital Episode Statistics database at the centre of the current furore was turned down), at least two more attempts are in front of the Work and Pensions Select Committee at the moment (delivered at arms length by a company created under a DWP pilot), both of which appear to advocate access to GP patient records, in one case with the apparent intent of enforcing treatment as a condition of benefit receipt, together with further proposals for data-sharing with DWP under the general government-wide big-data initiative. Disabled people already have a deeply distrustful relationship with DWP due to the Department openly following a model of disability that faults disabled people if they do not recover from their disability within a year and due to it's shoot first, ask questions later model of benefit fraud investigation. For many people with mental health issues further intrusion by DWP into the doctor-patient relationship would make it difficult if not impossible to continue to access that service. I have already seen a disabled person state that they have concealed medical information from their GP due to fears of Care.Data leading to it being revealed.

The potential compromise of the trust between GP and patient extends into other areas, I have seen a convincing argument that patients being able to view their medical records will compromise the ability of domestic violence victims to be open with their GP as their abuser will potentially be able to police what was discussed by forcing them to provide access to their records. Similar privacy and breakdown of trust issues have been raised around teen pregnancies. These are very real concerns, and simply are not being addressed under the current model of Care.Data.

4) NHS Privatisation: It is very clear that many of the companies shown to be in receipt of patient data in the Register of Approved Data Releases are principally interested in the privatisation potential. Support of the NHS as a public, free at the point of delivery medical system is a principle of British society, and a wide range of the population feel that it is under threat, with the NHA Party proposing to run candidates on a pro-NHS platform at the next election. Release of Care.Data in pursuit of improved clinical research is one thing, release of Care.Data to the sharks circling the NHS is, for many of us, something else entirely.

Luddism? I don't think so.