I Am a Crip, and I'm #DisabilityConfident of that

A disability consultant just put out the following two tweets under the #disabilityconfident hashtag

burdus access @BurdusAccess

Disabled people - lose the 'c' word ('crip')! It doesn't empower, it undermines & reinforces neg stereotype. #noCword #disabilityconfident

And

burdus access @BurdusAccess

'Crip' is as damaging to disability equality as the 'n' word is to racial equality. Language is the dress of thought! #disabilityconfident

I'm fully aware that 'Crip' is a controversial term for many disabled people, I fully accept people's right to feel uncomfortable with it, and its use, but when they start trying to tell us what we can and can't call ourselves, then I have a problem with them. I've self-identified as a Crip for the last decade, basically since my time on the BBC's Ouch bulletin board, which was the political awakening for many of today's online disability activists. By calling myself a Crip I put myself in the face of those who would denigrate us and tell them that they can hurl disability epithets all they like, because I'm proud to claim those terms for my own. Equally, calling myself a Crip is a form of group self-identity. It aligns me with every other disabled person who confronts those who would put us down, and turns the language of hate into the language of our resistance. So, yes, calling myself a Crip is part of who I am, part of my identity, and my identity is important to me, because denying our ability to self-identify is historically part of the infantilisation of disabled people that kept us as a 'pitied', 'childlike' minority for all but the last 50 years of our history.

So when someone in a self-appointed position tells me how I'm allowed to self-identify, I tend not to see that as remotely #DisabilityConfident (yes, it's one of those 'disability consultants'), and yes, I damn well have a problem with the arrogance of it.

It isn't even particularly well informed criticism, as we see with the statement 'is as damaging to disability equality as the 'n' word is to racial equality'. The reclamation of the N-word (I can't use it, I'm not entitled), is a huge part of the reclamation of Afro-American (in particular) identity from the forces of segregation and hate. The reclamation of the N-word, and the reclamation of language in general has been the subject of considerable academic research, which you can find in papers such as Linguistic Disarmament: A Philosophical Analysis Of Hate Speech And Reclamation Efforts, Not all are in favour by any means, but we are dealing with the assertion of rights by a victimised minority and we oppose or criticise that at our peril.

As 'Wobblin Wilma' notes in this Ouch thread there is an essay by Nancy Mair 'On Being a Cripple', which articulates a slightly different pro-Crip position and around which there has been considerable commentary, as here, but I actually prefer Wilma's own analysis which notes that the aggressively negative use of 'cripple' is a comparatively recent development that is ripe for reclamation. Or there's Chris Page in this thread saying '"Crip" is most used by confident Disabled people who refuse to be judged by outdated stereotypes of the benign, subservient disabled person.' which I absolutely agree with. But using the term doesn't imply we should use it to all and sundry, as is discussed in this thread. I'm in those threads as DavidG, but my position has moved on since the earlier posts and I've gone from being neutral around Crip to overwhelmingly positive about it - there are far too many people who oppose us and will hurl our disability in our faces as an epithet for us not to reclaim their language of hate. Having said that, sometimes I got it right: 'When someone else says 'Crip' they focus on our disabilities and what they imagine we can't do, when we say 'Crip' we parody their beliefs and emphasise our belief in our rights as an oppressed minority. By pre-empting their usage we remove the word's power over us. We turn insult into shared identity and experience.' And 'I'd say that, for those of us who choose to use it, it recognises our individual political identity. I loathe the term as a physical descriptor, but I love it as a political one. It says that I recognise the disablist society that discriminates against me and that I'm not going to take it.'

The offending tweets noted 'Language is the dress of thought!', which is absolutely true, language shapes the way we think, and that is what makes reclaiming language so important. Before the Civil Rights Movement, the N-word was hate speech, a term of utter disdain, reminding Afro-Americans that they might no longer be slaves, but that they were still regarded as barely second class citizens by the white power structures of the Southern States. But once the Civil Rights Movement took hold, once the language of hate was reclaimed, then the N-word became something different, it became an expression of identity, an expression of equality, and a statement that power was no longer something wielded against the Afro-American community, but something wielded by them.

If you try to stop me asserting my chosen identity as a disabled person, then all you're doing is declaring yourself as part of the problem, not part of the solution. That says it is time to take a look in the mirror and decide whether you stand with us, or against us.

So, yeah, I'm a Crip, deal with it.

Disability Confident and the Elephant in the Corner

Blogging against Disablism Day (#BADD2014) was back on the 1st, so I'm more than a little late, but I struggled to settle on a theme until interactions on the #DisabilityConfident twitter hashtag focussed me back on to disablism in employment. And by the way, do follow the #BADD2014 link for one of the most important collections of disability essays you'll read all year.

For more background on Disability Confident, see my earlier blog So What's Wrong With Disability Confident.

When we come to disability employment, it's clear that the main issue limiting disabled people achieving equality in the workforce is open disablism (ableism for those in the States). Either we can't get through the recruitment process because our applications get inexplicably filed in the wastebasket when we mention our disabilities, or we don't mention them and they get inexplicably filed in the wastebasket when we turn up for interview with crutches, a wheelchair, a white cane, whatever. On the off-chance we get through recruitment, which for many of us only happens because we didn't happen to be disabled at the time, we then have to navigate the process of explaining to management that we now need reasonable adjustments, which can far too often trigger a full blown crusade to force us out of the company, and god forbid your disability changes and you need to change your adjustments - 'Please sir, I want some more.' Even if you get the adjustments in place, you may find yourself facing jealousy from your peers - 'why should she get out of stacking shelves just because she has a wheelchair', or transferred into a post where the new manager takes against you - 'I believe anyone who becomes disabled should be medically retired' to quote one of my annual appraisals. And when it comes to taking on even a small company to enforce your rights, the company usually has better resources, go up against a multinational and you can find yourself facing hot and cold running lawyers, and even if you win may find yourself subject to a gagging clause which means you can't discuss the censored .

So when it comes to staging a major two year campaign to challenge the lack of equality for disabled people in the workplace, you would have thought that challenging open disablism would have been at the forefront of the campaign. Unfortunately Disability Confident is a Department of Work And Pensions campaign, and DWP thinks disability is our fault for not trying hard enough (sadly I'm not joking), and god forbid they might even dare to contemplate enforcing the Equality Act ("I am not somebody who would want to tell somebody what they have to do. We have to work with business.” Esther McVey, then Minister for(?!) Disabled People). Instead Disability Confident has focussed on the low hanging fruit of companies who are willing to have disabled employees, but aren't very good at it. Unfortunately Disability Confident isn't very good at it either. Scope have basically done a better job in the first week of their 'End the Awkward' campaign, which isn't even an employment focussed campaign, than Disability Confident has managed in a year. Almost half-way through Disability Confident's two year campaign and we're still seeing the same 'how inspiring' tweets from the people attending their events.

One thing that disturbs me deeply about Disability Confident is the number of disability consultants willing to get up on stage and say how wonderful it is. Forget the campaign's figurehead, Simon Weston, he's there because he's a mate of Mike Penning, the current Minister for Disabled People, and doubtless picked as someone well known for being disabled who company directors would probably quite like to have their picture taken with (and even better, he's not a political crip). Focus rather on the disability consultants, the people who deal with the issues of employment and disability on a day by day basis. If they are disability consultants, then pretty much by definition they need to know about things like inspiration-porn, and the real nature of the employment market for disabled people, they can't do their job if they don't. All the time they're singing the praises of Iain Duncan Smith for his crusade against the inherent idleness of those damned, faking crips, they have to know just how bad Disability Confident is, and that the elephant in the corner is sitting there, staring at them, and wondering when they are going to get around to dealing with the real issue - employer disablism. And what goes for the elephant in the corner also goes for us out here, the actual disabled people, the ones who want jobs, or who have jobs and need adjustments, or who had jobs and lost them for no reason other than our disability and the disablism of our employers. Like it or not, the disability consultants taking part in Disability Confident are representing us, and they're doing a piss-poor job of it.

DWP don't want to challenge disablism, the disability consultants don't want to challenge DWP (that would be biting the hand that pays their contracting fees), and our voice, the voice that says 'I want the same chance to work as anyone else', goes unheard. For disabled people, Disability Confident is worse than a failure, worse than nothing, it's the disability equivalent of Uncle Tom's Cabin, actively designed to make employers feel good about themselves and think they need do nothing more to make us equal than hold up a handful of inspiring (sic) examples.

I'm never going to be a saintly Uncle Tom, held up as an example of how a good little crip should behave, I'm cut far more from Uppity Crip cloth, and when I see an elephant in the corner, I'm going to shout it to the hilltops, and get Jumbo to trumpet it alongside me. Disability Confident is not just bad, it's dangerous, it's explicitly designed to reinforce the status quo, rather than persuade employers to live up to their legal obligations to treat disabled people as equal to any other worker. Employers have had 70 years to do that, since the Disabled Persons (Employment) Act 1944, if they haven't done it yet, they aren't going to do it without being forced, no matter what Esther McVey or Mike Penning might bleat. And if a programme is designed to reinforce a disablist reality, then that programme is by definition itself disablist.

Either we challenge disablism in employment, or we're on its side. Disability Confident has picked its side, it is there to reinforce the status quo of disablist employers having nothing to fear. The elephant in the corner is sitting there at every Disability Confident event, forced into the corner as the interests of disabled people always are, and waiting for one of the invited disability consultants to finally find the guts to look it in the eye and say: 'Oh, sod this, let's talk about the real problem.'

It's about ability, AND disability

A message that keeps being recycled at every Disability Confident event (See 'So What's Wrong with Disability Confident?' here) 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.

(This is broken out from my larger essay 'So What's Wrong with Disability Confident?' for ease in pointing it out to the people who come out of Disability Confident events twittering that 'It's about ability, not disability' that no matter how much DWP may be pushing that tag line, it actually isn't remotely helpful to disabled people. It isn't their fault they're being misled, but someone has to tell them, and seeing as 'Nothing for us, Without us' is anathema to the DWP we're forced to do it ourselves.)

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.

Conclusions

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.

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.

Margaret Thatcher Night: A Modest Proposal

Apparently the Piss on the Peasants wing of the Tory Party are still trying to get August Bank Holiday turned into 'Margaret Thatcher Day', with the Second Reading of the Margaret Thatcher Day Bill due in the Commons on Friday. When I heard about this I was obviously horrified that even the most outrageous Tory couldn't recognise how utterly divisive this would be; though of course division, protest and repression could be exactly what they had in mind. However on reflection I begin to wonder if a compromise solution is possible. And so, phrased as a speech to the House for the convenience of any Tory MP who may wish to take it forwards, a modest proposal:

Mr Speaker, Honourable Members, preserving the memory of the deeds of our noble former leader, She Who Must Be Obsequised, has been much on my mind and I believe I have discerned a compromise proposal that will surely draw the support of both sides of the House, and indeed of the electorate country wide. August Bank Holiday is something of a non-entity, with nothing going for it but occasionally good weather and traffic jams on the routes to the seaside. One of our favourite national holidays, on the other hand, takes place in the cold of winter, puts children at risk, and has a historical basis which is increasingly poorly understood, and unfortunately combined with a basis in clear religious discrimination. In fact all that and it doesn't even have a Bank Holiday to call its own.

I therefore propose that we move Bonfire Night from 5th November to contemporaneous with the August Bank Holiday and rename the combination of the two as Margaret Thatcher Night, replacing the increasingly obscure Guy Fawkes with our noble and far more contemporary Baroness Thatcher. This would have the following advantages:

Increased Historical Relevance: With the Glorious Leaderene only a year dead, her resonance to the youth of today will surely be much stronger.

Uniting the Regions: Celebrating the Divine Margaret with a fiery pyre to remind us of the radiance of her reign will surely unite both North and South.

A Contemporary Icon: Guy Fawkes has sadly had his day, with little understanding remaining of his role and purpose, the inspirational Margaret, however, is a figure of clear relevance to our austerity-bound society and the Guy may therefore be usefully replaced with a symbol of our modern age. No doubt the Hoi Polloi will insist on the lese majeste of christening her the Maggie, but we can expect no better.

Increased Child Safety: Dark November evenings obviously bring risks for grubby little urchins engaged in collecting for 'Penny for the Guy', moving this to the light Summer nights will clearly provide greater opportunity for monetisation of the divine effigy, a thought that should surely bring a tear to all our eyes. Unfortunately 'a pound to piss on the Maggie' is probably inevitable in the bleak wastelands of the North, but we can console ourselves that urchins of such a nature are unlikely to be of use to the party, nor its natural supporters, and the practise in begging should stand them in good stead for when dear Iain has completed Margaret's most closely held desire, the demolition of the Welfare State.

Bettering Our Faux Green Credentials: Moving Bonfire Night to the Summer should reduce the instances of smoke-induced smogs and fogs, not to mention unfortunate instances involving that jerrycan of petrol the Honourable Member for Horsham advised us all to keep in our garages, as dry wood will be both easier to light and burn more cleanly. Indeed for optimum efficiency the bonfire could be dual-roled as a barbecue.

Removal of Unfortunate Historical Religious Resonances: The new Catholic Cardinal is not as strongly bound to our campaign of welfare reform as we would reasonably expect of him - I mean dear Iain even professes to be Catholic, for God's Sake, what more can the man want? Historically Guy Fawkes Night has served as a reminder of the dangers these damned Catholics... has served to perpetuate unfortunate religious stereotyping, and therefore replacing that bloody Catholic with a unifying figure such as Margaret can only be for the good (The Honourable Member for Lewes may disagree, but he's a LibDem and sees conspiracy theories everywhere, so what does it matter if his constituency loses its one tourist attraction).

Improved traffic flow: with the Hoi Polloi likely to stay at home in order to participate in local celebrations of Margaret, this will leave the motorways uncongested and ease Members of both Houses in commuting between shooting parties at their tax-payer funded country estates and their tax-payer funded Central London townhouses.

I therefore commend this measure to the House.

And in order to retain the links to the traditions of Bonfire Night, we can all wear our stylised Guy Fawkes masks, in memory of V for Vendetta and the Bonfire Night to end all Bonfire Nights ;)

That doesn't seem unreasonable, does it?

Disability Employment – Time to Confront the Bigotry?

I started this as a reply to Jane Binnion’s interesting blog Beyond First Impressions - Disability and Employment but it decided it wanted to be a blog of its own.

Jane’s blog started from the difficulty in making a positive first impression with a potential employer when dyspraxia makes you visibly clumsy and expanded that to the question of whether to declare disability and then questions of disability employment in general.

Jane has a very good point with respect to dyspraxia, and dyspraxia actually makes a particularly good example of the issues around disability and employment as a whole. Dyspraxia is a 'Specific Learning Difficulty', in the same group of disabilities as the much better known dyslexia, but even dyslexia isn’t really understood in any depth by the public, who tend to focus on the reading issues without realising it has a much wider impact. Dyspraxia, by comparison, is even less well known, and the visible symptoms of poor physical coordination are perhaps even more readily disparaged, and less easily explained as a consequence of disability, given the generally negative views society holds towards ‘clumsiness’. The other issues around dyspraxia, those that make people with dyspraxia a part of the wider neuro-diverse community along with people with Autism Spectrum Disorders and a range of other issues which make us profoundly different to neuro-typicals in the way we think, are simply unknown to the general public, who certainly aren’t encouraged to any nuanced understanding of disability by programmes such as “The Undateables” and the like.

With both dyspraxia and hypermobility syndrome, my clumsiness can reach epic proportions, and that has always meant that I tended to be viewed as a bit of a clown in whichever department I was working. That might not have seemed a major issue at the time, but looking back, I wonder if it predisposed certain managers to developing the eventual open hostility to my disability that brought my career to an end. I'm not certain whether declaring dyspraxia would have helped, though it is an academic question as we didn't pin down the dyspraxia before things escalated. Even so, with declared disabilities (chronic pain syndrome and mobility issues) and supporting evidence from my consultant and his team, I actually had management, at a multinational company which likes to portray itself as 'an employer of choice' on equality matters, trying to deny that I was disabled, at the same time they were telling me (when witnesses weren't about) that 'your disability makes you a risk to my schedules' - consistency wasn't one of their strong points!

There is no single answer on declaring disability. I have to, I use crutches and need adapted seating, but the reaction I've had from employers, and the reactions I've heard from others would make me very cautious about doing so if I had a solely invisible disability. Even with the visible disability, do I declare everything? Do I mention I have enough issues around dealing with people I’ve had psychologists trying to decide if I have Asperger's Syndrome? Given what I know of attitudes, that is one issue I probably won’t mention until I absolutely have to. And until we can mention these things without it being a worry, we have a very real problem in the employment of disabled people. That problem is discrimination, pure and simple, though in the spirit of calling a spade a shovel, perhaps we should be even more bluntly spoken and call it what it is – bigotry.

The Department of Work and Pensions are currently running a campaign to encourage disability employment under the 'Disability Confident' label. The only thing it leaves me confident of is my contempt for DWP, as it appears to consist of 1) telling employers how 'inspiring' we are (ick!) and 2) studiously avoiding any mention of discrimination, even though that's the major problem the campaign has to overcome. I have been horrified by the number of charities, agencies, consultants and whatever they've managed to dig up with 'inspiring' in their name or their mission statement - do these people seriously have no clue whatsoever about 'inspiration porn', or how the disability community feels about it? How can I trust them to have any positive influence if they don't have the first clue about what disabled people feel - it seems to be a real reversion to 'does he take sugar?' attitudes. It’s difficult to express how much 'Disability Confident' infuriates me, I think it's a major step backwards, not forwards, and consciously intended to hide the real issue of rampant anti-disability bigotry within both management in general and human resources departments in particular

When I was ‘made redundant’ (my description of choice would hit the bigotry theme rather harder), the outsourcing consultant who had been brought in by my then employer, and who had many years of experience as a recruiter, took me aside at the first chance he got: ‘I need to make sure you understand something,’ he said, ‘that your disability means it will be almost impossible for you to find another job.’ He went on to explain ‘With your degree of disability, there is basically no possibility of you finding a job in the private sector, and almost no possibility of finding one in the public sector’. This was with 20-plus years at the cutting edge of aerospace R&D behind me, and in a company that was rated as quite literally world class at what we did (I had supplied some of the evidence that got us that rating). If that kind of experience is worth precisely zero when paired with disability, then what hope for the many very able disabled people who don’t have that experience or who have even more limiting disabilities?

I spoke to around half-a-dozen recruitment specialists over the next year (2008/9), each repeated the same message, that experience meant nothing, all employers would see was my disability, and that that would exclude me from their consideration, no matter what the Disability Discrimination Act (now Equality Act) said. An employer’s organisation released a survey at about that time saying what a triumph for equality it was that 27% of employers would actually consider employing a disabled person. No mention was made of the fact it was actually illegal to consider disability in the decision at all, so the other way of looking at that is 73% of employers would rather break the law than even think about employing a disabled person, and were happy admitting that!

Self-employment is often put forward as a solution to disability employment. I have a real problem with self-employment as any kind of generic solution, because I think it actually enshrines discrimination rather than challenging it. Yes, self-employment clearly is appropriate for some people who would choose to be self-employed whether disabled or not, but if disabled people are only pursuing self-employment because they are unable to convince employers to look at them, then that's just letting the real problem fester. Essentially there should only be two reasons for going self-employed: a) it is what you want, and has nothing to do with disability, or b) your disability is such that any other form of employment is just not feasible (for instance not being able to make any guarantees at all with respect to working hours, which can be the case with a range of pain or fatigue based disabilities). For everything else, we should be looking at the attitudes of employers, holding those attitudes up to wither in the light of public scorn, and doing everything else in our power to change them.

Another solution often put forward to disability employment is remote working/home working. However this is by no means a universal solution, even in the digital world. I was a software engineer, which might seem the ideal career for home working, but my speciality was aerospace work, and accessing the room-sized test rig I needed would be a bit of an issue (never mind the security aspects); similarly, there are a lot of other disabled professionals out there with jobs that simply aren’t amenable to home-working – doctors, civil engineers, research scientists and so on. The danger here is that a focus on home-working as a solution will both ghettoise disabled people and exclude us from a whole sphere of work. Worse, that sphere is one that is consistently conflated with leadership, or leadership potential, and we risk creating a demographic shift in which even if we make progress elsewhere in disability employment, it is only in the less influential roles, reinforcing the dangerously pernicious perception of disabled people as somehow not quite adult and in need of having what’s best for them decided by the great and the good (sic).

It’s been a generation since the Disability Discrimination Act 1995 mandated  businesses to make reasonable adjustments to their facilities for both their customers and their employees, yet we still see self-employment and home-working being touted as solutions all the way up to the level of the Minister for (hah!) Disabled People. Let’s be clear about this, the only reason self-employment and home-working are advocated as blanket solutions at ministerial level is recognition of the willful refusal of employers to either employ disabled people, or to make their workplaces accessible, and that advocacy represents a tacit nod and a wink from the highest levels of government to those who fund their party that they are quite happy for that situation to continue.

Disability employment is ultimately a tripartite problem, it needs disabled people who want to work, it needs employers who want to employ us, and it needs a government willing to support us, through both the recruitment process and through the long haul once we have a job. Sadly only one of three legs of the disability employment triad is there, disabled people want to work, disabled people have always wanted to work, disabled people are desperate to work, and it reflects the problems we face that all three Tory Ministers for (hah!) Disabled People under the current government have repeatedly implied that that is not the case – and we should be clear that that too is bigotry.

Turning now to the second leg, employers who are willing to employ us. We have had legal protection in employment for quite literally a generation, yet it is clear there remains a huge problem. My experience with the recruiters described above is a clear indication that the understanding that disablism is not acceptable simply has not penetrated into business and recruitment. There are undoubtedly business people who do understand this, but it often seems that they are few and far between, and even when we do get people saying that there should be greater employment of disabled people, more often than not it remains wrapped up in ideas of how ‘inspiring’ we are, reducing us to a modern version of the ‘white man’s burden’.

I am not so foolish as to believe that discrimination over race, religion, gender, or sexual orientation have disappeared, but the wider community does at least understand in general that these are not acceptable. But with disability we still regularly encounter managers who assume inability first and ask questions later, who say things like ‘I think any worker who becomes disabled should be medically retired’, and who appear to be completely unconscious that they are doing anything wrong. Equally any disabled worker who dares to raise these issues, or issues of accessibility, puts themselves and their career at very real risk of punitive action. It is by no means overkill that the Equality Act contains provisions to protect against workers being victimised for raising disability issues, because that remains a very real risk. Even if discrimination falls short of active harassment, those around us may still dismiss us as ‘bitter over our disability’ when we raise problems, a dismissal that not only denies our issues, but attacks us as inadequate. 

Perhaps we should ask ourselves what percentage of Managing Directors would be willing to sack an HR Director who deliberately excludes a disabled person when recruiting? I am sure most would regard that as overkill, if indeed they admitted they were doing anything wrong at all. Yet any HR manager who does that is undoubtedly engaged in gross misconduct by deliberately placing the company in violation of the law. And if the MD does nothing then he personally assumes the same liability. Perhaps we need a few salutary prosecutions by the Equality and Human Rights Commission, ‘pour encourager les autres’, because it seems that employers en masse remain unwilling to treat disabled people as equals, and to enforce that amongst their staff, unless actively forced to.

And now the final leg, support both in and out of work from government. DWP attitudes remain a horrendous problem here, a problem that stretches all the way from frontline Disability Employment Advisors to Iain Duncan Smith himself. The problem is institutional, not simply political, DWP adopting a version of the BioPsychoSocial Model of Disability under the previous Labour government, a version of the model developed by a US insurer notorious for its ‘disability denial mills’, which says that if disabled people do not recover from their disability within a year then it is because they are being deliberately obstructive, and it is clear that this is a view of disability which remains close to the DWP’s heart. IDS may not have introduced the BPS model, but he has leapt to embrace it. When he appears in the pages of the Hate Mail and the Vexpress on a weekly, at times near daily basis, telling the nation that he is on a mission from God to save disabled people from themselves, that we need to be subjected to a punitive system of enforcement otherwise we will simply allow ourselves to fester on benefits, then he is not just reciting the BPS mantra, not just indulging the bullying bigotry at the core of the Tory character, he is poisoning every person who hears him against us. When psychologists teach that this kind of repeated attack can generate ‘negative automatic thoughts’ even for us, then what must it do to those who are already predisposed to see us as inadequate scroungers? Is it any surprise then when we are abused in the street, or when DEAs turn around and tell us to look for minimum wage work, or, to quote a recent case, tell someone with learning difficulties that they are 'lazy' when they fail to meet impossible targets for job searches?

In such an environment it is perhaps no surprise that Access to Work, the government’s system of in-work support for disabled people, is fundamentally broken, as Kaliya Franklin reports finding in ATW: Denying Access to Work, an article written just this week. Access to Work is the kind of benefits programme even a Tory should love, with a documented 140% return on investment, but the first thing the Tories did on taking power was cut the things it would support, and even after that caused a disastrous fall in take-up they are still fiddling with the programme, trying to limit the support it gives to people reliant on support workers. Yet analysis before they took power made it clear that the problem with Access to Work was not that it gave too much support, but that it gave too little. What Access to Work needs to do in order to make a real difference is to allow disabled people to get packages of support organised before they even apply for jobs, so that they can arrive in an interview and tell the employer that their support package is not an issue because it is already arranged. But clearly that is too complex a concept for IDS to wrap his mind around. 

And sadly support for disabled people in work is in the process of worsening again. The Tories like to portray Disability Living Allowance as an out-of-work benefit, indeed Mike Penning, Minister for (hah!) Disabled People did it again just last week, because that makes it easier to justify the massive cuts it is undergoing as it transforms to Personal Independence Payments, but the truth is that DLA is available whether in-work or out-of-work, and for 600,000 disabled people, the PIP transition may see them lose the Motability support they currently rely on to allow them to access the community, and their jobs. To compound that, the implementation of PIP is turning into a fiasco far worse than even disability activists had predicted, with delays of 6, even 8 months (and no doubt soon 9 or 10 months) reported in processing applications, leaving new applicants without support when they need it most.

In the end, you have to ask, if IDS and everyone else in the country are so adamant that disabled people should work, then why the hell are they making it so difficult?