Thursday, 27 February 2014

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?

Saturday, 22 February 2014

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?

Thoughts on the Risks of #Care.Data

Care.Data is the government's plan to centralise patient records from English GP surgeries. This has some clear benefits, in providing a database that can be used for epidemiological research, recall of medical devices (c.f. the breast augmentation scandal), spotting side effects of medication and the like. Unfortunately the proposals for England have major issues with respect to privacy, as they will see the selling of incompletely anonymised data to industry, data which is then NOT subject to the Data Protection Act. Care.Data is currently on hold for six months over the privacy issues, with the Information Commissioner's Office stating that the NHS clearly failed to provide adequate information on the privacy risks in the mail shot it sent to every household in the country (but which most of the households in the country appear not to have received). And when I say it didn't provide adequate information on privacy, I mean that it failed to raise the issue at all, the closest it got was a small paragraph mentioning that it was possible to opt out, without providing any indication of how to do it.

Dr. Margaret McCartney has written a particularly good article for the BMJ, discussing the risks with the English system, noting why the proposals for Scotland and Wales are clearly better, and linking to many of the relevant facts. It's rather revealing that among the companies asking for access to Care.Data are a right-wing think-tank, and two private medical providers.

The people running Care.Data have said that they will address the privacy concerns, but to date their approach seems to be to deny that there are privacy concerns, which really doesn't address the issue of patients being able to give 'informed consent' (required by medical ethics) for this data-sharing. The absolute failure to address privacy issues in the Care.Data leaflet (assuming people received it at all) means only those of us who also have an interest in IT privacy issues and have followed the Care.Data issues are currently in a position to make a decision based on informed consent.

My primary concern with Care.Data is that it opens up individual patient records to a hugely increased number of NHS personnel, greatly increasing the risk of a massive leak of data, a risk illustrated by the Chelsea (Bradley) Manning and Edward Snowden leaks from US intelligence databases. The more personnel who have access, the greater to unity becomes the risk of a major leak.

While linking one medical record back to an individual represents an investment in effort unlikely to be worth the investment in time, the process of linking tens of thousands, hundreds of thousands or even millions of records to identities becomes an obvious case for automation, and the resulting database has clear potential for monetisation. The phone-hacking scandal has demonstrated just how widespread is the risk from people willing to go to any length to access personal data. (Update: And as of 24th February and the Telegraph revelations detailed below, we now know the insurance industry has done precisely this with the inpatient records of 47 million people).

Having already faced career-destroying employment discrimination over disability issues, and facing a clear dilemma over whether to declare to a prospective employer all of my disabilities or not, the idea that a black-hat hacker might be able to set up a service checking medical backgrounds of prospective employees (in much the way that the Consulting Association used to run a blacklist for engineering firms) is not one I can face with equanimity. I can see the clear potential of Care.Data to do good, but as it stands my concerns over security mean I am likely to opt out.

No sooner do I write about the potential risks of Care.Data then we find out the worst case may already have happened. A Telegraph article reveals that the complete set of NHS inpatient records for the 13 years from 1997 to 2010, covering 47 million people, has been sold to the insurance industry, who have then linked that information back to individual people via DoB and postcode (which is a seriously flawed methodology if true, it's entirely possible to get two people with the same DoB and Postcode, even name, DoB and Postcode will have duplicates), combined that with consumer credit information and used it to justify increasing the cost of health insurance for certain individuals. The Guardian is running an article quoting the Telegraph, but including a few additional details.

It's going to be particularly interesting to see how the legality of this is judged. As soon as 'Staple Inn Actuarial Society' created a database linked to individual people and their medical records, they exposed themselves to the most stringent provisions of the Data Protection Act. If they haven't registered this with the Information Commissioner there will be hell to pay, if they have, and the ICO has okayed it, then there will still be hell to pay, but not just for the insurers. If this had been done with CareData data packages, then it would be specifically illegal, whoever authorised the release of data may well have known that, and while they may not have broken the law because this wasn't CareData per se, they are likely to find themselves with some particularly awkward questions to answer.

It's going to be a particularly rough week for the CareData advocates, especially as the NHS is up in front of the Health Select Committee in the morning on precisely this issue - in fact the timing of the Telegraph story screams deliberately timed leak - and I'm willing to bet on it making an appearance at Prime Minister's Questions as well. Big business and the NHS in collusion over the selling off of the most personal aspects of people's medical data, in advance of that sale being made illegal, and that data then being used to justify increasing insurance costs (already an issue over the floods) is a perfect gift to Labour.

Depressingly, at exactly the same time the Independent has published an interview with the Information Commissioner in which he says the courts aren't treating data protection with nearly enough seriousness.