disability

Connecting and Disconnecting

sam — Sat, 17 Mar 2018 18:38:53 +0000

Connecting and Disconnecting

sam Sat, 17/03/2018 - 18:38

It's something you see a lot now: in the papers, on social media, comments, editorials, even reports from respected organisations. Our connected technology means that we're always wired up to communication, and we need to take the time to disconnect more.

The problem with this is that it makes too many assumptions about how we use our technology, the role it plays in our lives, and even how we live our lives in general.

Partly it's a generational thing, the technology you grew up with. Who could have imagined, 40 years ago, that today we would be able to walk around with a supercomputer in our pocket, wirelessly connected to the greatest distributed repository of information ever conceived? That we would be able to communicate, not just by voice, or even by video, but by rich real-time multimedia communication, with – potentially – anyone on the planet? To people growing up in much of the world today, it's the only thing they've ever known.

Now, there's ample studies been conducted showing the perils of “screen time” for the young. By and large, I would agree that it's good for people actually get face-to-face contact, socialisation, and physical play with their peers. For those with office jobs, there are obvious perils to being able to be contacted by your boss or colleagues 24/7, and there is a definite argument for keeping work email mostly at work. It has, however, developed in some cases into an outright demonisation of communication.

In itself, I see no problem with people being able to access their email, their texts, their groupware systems, any time they want. The perils mostly consist in being expected to do so, or in choosing to do so regardless of expectation and without sufficient regard to one's own well-being.

Now, children spending all of their time playing video games has been a concern since the ability to do so became widespread, and the ubiquity of smartphones vastly increases that ability. It has always been overblown, in my opinion, but not entirely misguided. Similarly, concerns about the vulnerability of children engaging in online interactions has a reasonable basis, and it is similarly exacerbated by ubiquitous connected devices.

As that concern for children enters the popular consciousness, it seems to me that it often translates into a concern for adults. Less for vulnerability, but more that something is being inherently lost through lack of interaction, as in non-social video games, or through interactions being online rather than in person. Online interactions are often considered inferior, or as though they barely count at all.

All in all, this leads to the idea of reducing our “screen time”, and emphasising the need to “disconnect”. But is this correct? Is it correct for some, but not others? Does it misunderstand the role of technology, or at least over-generalise from the experience of some people to the experience of all.

I know people who have taken conscious efforts to “disconnect” at times, only dealing with personal email on certain days of the week, say, or giving up social media for Lent. Refusing to use a smartphone not because of any difficulty they find in using these devices, but because they do not think they need an always-on, always-with-them connection to the internet. This has worked well for some people, and I wish them all joy of it and am glad they get benefit from doing so. However, there is a tendency to generalise from this to think that it will do good for everyone, and I cannot see how that can be so.

There are some people, through circumstance or inclination, find engaging online the easiest, the more rewarding fulfilling (at least net of difficulties), the most accessible means of maintaining that connection with individuals and the wider world. More practical and easier to keep their appointments and calendars “in the cloud”, rather than in a paper diary. Online references more helpful, or less of a burden, than a copious physical reference library. The ability to look up important information, be it personal or public, at any time, wherever they are, can be invaluable.

Some of us, by virtue of our impairments and of the society that disables us in consequence, are very limited in the amount we can do in person, out and about. The ability to be connected all the time at home is essential to our lives. When we are away from that connection, when we cannot know whether people have tried to contact us, when we can't let people know if we have a problem, it is a source of stress. Rather than the possibility of constantly being bombarded with communication, it is the stress of being unable to communicate, the stress of being disconnected that becomes a burden.

That is not to say it is the same as addiction. I do not doubt that there are cases of unhealthy obsessions with social media, say, or excessive, habit-forming engagement with video games. But just as it is not addiction to wish to keep taking a medication that allows you to function, it is not addiction to feel the need to have online communications when they are your principal method of interacting with the world.

The word “dependence” is a scary one, but it is easy to be too scared of it. Some disabled people are simply not capable of engaging with the world in the way others do, because those methods have been constructed over years by unimpaired people, for unimpaired people – or simply because their impairments mean that they can do very little physically active, or are tethered to their home by bulky, life-saving medical equipment, or plenty of reasons besides. Just as I am dependent on medication to be mostly awake when I am expected to be (or, really, awake more than asleep), some people are dependent on electronic communications to connect with the world. It is not shameful, it is not a flaw, it is not a failure (except perhaps a failure of society, but not even always that). It is simply the way things are for that person.

You might say “disconnect from the online world and connect with nature”, but nature is not the most accessible thing for some of us – or even if it is, the act of getting somewhere that allows us to “connect with nature” means that it is prohibitive to do so with any significant frequency. You might say “disconnect from the online world and connect with real people”, but the internet, our digital devices, are how we connect with real people.

Okay, you might say, but at least – if and when you do manage to get out into nature or socialise in person – turn your phone to silent, stop looking at your smartwatch, be present in that moment. It's a laudable idea, certainly, but it won't work for everyone. Having the reassurance of that connection is not a small thing to many people. Besides, we haven't even considered carers yet – many of whom are disabled themselves – who might be able to get away from their caring responsibilities only if they are able to come back quickly if something happens.

When you call for people to “disconnect”, to reduce their “screen time”, consider that the life and experience of others, the needs of others, may be different from your own. Don't assume that the negatives you associate with any phenomenon are universal. For some, disconnecting from digital communications is disconnecting from their whole life, and they don't deserve sympathy, scorn or judgement for that.

Before making that sort of call, or sharing your joy at the benefits you've gained from such an effort, think. Think the other people have different experience and different needs, and realise that some of them might hear you, might read your posts, might be affected by your pronouncements or policy recommendations. When you realise that, surely you will find it in yourself to factor that difference in to what you say.

Book: Social Policy First Hand

sam — Sat, 17 Feb 2018 23:37:35 +0000

Book: Social Policy First Hand

sam Sat, 17/02/2018 - 23:37

A couple of years ago, I was approached about the possibility of writing about the making of the “Spartacus Report”, Responsible Reform. This report took apart the coalition government's arguments for reform of DLA, the first step in their campaign to introduce PIP. It was also the start of a grass-roots policy analysis movement that went on to produce several well-researched, critical reports analysing government proposals – largely pointing out how they were completely misrepresenting some critical facts underpinning their arguments, or under- and over-estimating crucial outcomes.

I was involved towards the end of producing Responsible Reform, contributing a chapter and checking over those contributed by some other people. I was very much involved with some of the subsequent reports produced in the same spirit. The first report, and several later ones, made a tangible impact on several public and parliamentary debates, and even though we didn't have the effect we might have wished, we certainly had more impact than we thought we had any right to realistically hope.

Anyway, I agreed, and after a somewhat drawn out process – sometimes difficult for me, I can struggle with brevity – and I'm sure lots of efforts on the part of our editors, it's scheduled for release. Come the fourth of July, Social Policy First Hand will be available, direct from the publisher (Policy Press in the UK) or from other booksellers (I'm guessing mostly academic ones, but Amazon have it too).

Social policy isn't my area of academia, but my contributions is about the experience, about what we did. Other contributors include campaigning colleagues of mine, and other people who've been “on the ground”, about other experiences. Beyond that, there are also contributions from those with academic backgrounds in the area. I certainly look forward to reading everyone else's contributions when my copy arrives.

(And in case you think I'm just trying to maximise sales for my own good, I don't get any royalty on this; that's how it works when you contribute a chapter to an academic book, I've learned.)

The Glaring Flaw in the Equality Act

sam — Sat, 18 Nov 2017 14:37:12 +0000

The Glaring Flaw in the Equality Act

sam Sat, 18/11/2017 - 14:37

The Equality Act 2010 has some wonderful provisions related to disability – largely taken from the Disability Discrimination Act 1995 (DDA). Not perfect, but its provisions should have taken us a huge way towards broadening accessibility and removing structural inequality. But most disabled people can tell you that the Equality Act, like the DDA before it, has done no such thing. This is largely because of one glaring flaw in the structure of the act.

That problem is enforcement.

This is going to get a bit technical, and just to avoid confusion, I am not a lawyer and not in any way legally qualified. I read a lot, though, including about what people have had to do in order to try to enforce their rights, as well as actual references about related law. For the most part, the DDA and the Equality Act create new categories of civil claim – that is, reasons you can sue people. The disabled person who has been discriminated against, failed to have reasonable adjustments made to allow their access, or been harassed or victimised, is able to make an application to a court for damages. In the case of employment, that application is instead to a tribunal, for a finding of, for example, unfair dismissal, or workplace discrimination related claims. In both cases, it is incumbent on the disabled person to bring this claim, with associated costs; costs in the small claims track of the county court start at £25, but if you are claiming damages enough to actually make a business take note, it rapidly gets higher – with a claim of £3000 requiring an up-front fee of £105.

You might think that you just need to make a claim for nominal damages, to make the point so the business owner, university or whomever. I'm not a lawyer, so I don't know if that would have any impact on your chances of success, but I am a person with some experience of how organisations think, and I know people who've been through this particular mill, and given that often the result of a finding in your favour is only those damages, nominal damages do very little to influence the behaviour of an organisation.

Courts can also impose injunctions, ordering that the organisation cease their discriminatory behaviour, and in some cases they prefer this over damages. Indeed, this can be done without proving that anyone has suffered actual detriment, merely that they would do so if the discrimination continues. In a case where you have simply tried to access a shop and been unable to do so, this is not usual, in my experience (though I'd be happy to hear otherwise). A recent high-profile case, based on the Equality Act but not related to disability, concerned a buy-to-let landlord who instructed an agent not to let to “coloured people” because they left “curry smells” in properties. He was issued an injunction against having such policies. Should he be found to be violating this injunction later, he will be liable to criminal prosecution.

There is one organisation whose remit includes supporting or bringing cases related to discrimination, including disability discrimination. This is the Equality and Human Rights Commission (EHRC), who provide advice for the public and organisations in terms of rights and obligations under various laws, including the Equality Act. However, they do not have a sufficient mandate or, more critically, sufficient resources to act as a general enforcer of the Act. They take up cases of broad applicability, or where the situation is particularly critical and the person allegedly discriminated against doesn't have resources to pursue it, even with legal aid or a conditional fee arrangement (CFA), commonly referred to as “no win, no fee”. It may be cynical of me, but I also tend to think that a case being high-profile, as in the case of the landlord mentioned above, also tends to make it more likely that the EHRC will get involved.

But let's see you have the mental, emotional and financial resources to pursue a county court claim against the organisation that you feel has discriminated, in whatever way. You take them to the county court, the judge finds entirely in your favour, and awards damages; if they were particularly jerkish in their conduct of the case itself, you may even get awarded costs. A friend of mine has recently done just that, being awarded quite reasonable damages – seemingly an absolute success. However, the only thing that stops the owner from continuing to discriminate is the obvious risk of further such legal action. The decision doesn't create a binding precedent on any court, and decisions are not generally reported widely enough for it to even be any sort of persuasive element in future cases. They can be pointed out to other judges in arguments, and that other judge in another case may give them consideration – but of no substantial impact greater than the arguments given by the parties in the case, other than the respect they might give a fellow judge. Of course, I would not advise anyone faced with such legal action to ignore previous cases on the basis that the judge may make a different decision; judges are not known for being capricious.

Not only that, but simply winning in the county court doesn't force the offending party to actually pay you your damages (and costs if you manage to get them). No, you have to wait a while to give them a chance to pay voluntarily, and then go back to court to get the judgement enforced. Then the respondent has a bit of time to provide information to the court about their means, and you sometimes have to go to a bit of fuss to ensure that they have been informed of the need to provide this information. Only once you have ensured this and they haven't responded, or if they do actually respond, can the judge set out enforcement measures to force them to pay – often in instalments.

Then there are cases where organisations are “judgement proof”, referring to a situation where they have so arranged matters such that, even if they lose and are faced with damages, they can legally show themselves unable to pay. For example, if you are suing a limited company, they might have arranged their finances such that very little in the way of assets remain in the hands of the company; in the face of an adverse judgement, they can just have their company declared bankrupt, wind it up, and start up again with a “new” company. There are some handy features in the Equality Act, such as section 110, that allow for liability to be joint and several between a company and its employees, but you have to make sure you invoke these provisions, pay slightly more to make them a co-respondent in the case.

All this is window-dressing, though. We have a situation where the law of the land is such that it is unlawful to discriminate against certain classes of people, where there is a legal duty to make reasonable adjustments for disabled people – and to make them on an anticipatory basis. But the vast majority of the time, this law can only be enforced by the people being discriminated against. Legal aid is not generally available, and conditional fee arrangements are difficult in the small claims track of the county court, as the losing side doesn't generally have to pay the winner's costs – and if the solicitors think the respondent may be judgement-proof, they will not enter into such a no win, no fee arrangement, because it's perfectly plausible that the applicant will get no money at all. When you consider that the groups likely to be making such claims under the equality act, including disabled people, are statistically likely to be economically disadvantaged as well, this is a situation where enforcement ends up being rare. This probably contributes to the strange feeling of victimisation businesses tend to exhibit when a disabled person does have the temerity to actually try to enforce the law.

There is a solution, and we can see the kernel of it already in effect. The EHRC can get involved in cases, even cases without a defined victim of discrimination. They can get courts to impose injunctions to stop discrimination, which is harder for a normal claimant in county court unless there is a reason they will have an ongoing relationship with the respondent. They have skills, and they have resources.

However, as mentioned earlier, they are limited by both their resources and their mandate. They are not a general civil enforcement agency. If we had such an agency, however, they could take complaints from members of the public who have suffered discrimination, investigate, and potentially – with appropriate changes in the law to support them – impose fixed penalties that businesses could pay in preference to going to court, and ending up paying more; a system could be in place to increase these penalties for repeat offences, leading to possibly much stronger penalties in court for the unrepentant. This would enable far more cases of discrimination to be acted upon, making it more normal to suffer such attentions, and creating a stronger incentive to bring behaviour in line with the law.

Such an agency would require resources, but the civil penalties themselves could help fund them. Then disabled people could not be accused of extortion, as they would not benefit directly from enforcement action – though victim payments might be appropriate in some cases, they would be being determined or advised upon by a specialised agency. It wouldn't simply be disabled people versus business – and universities, and hospitals, and government agencies. It would be a specialised, well-resourced agency acting, based on complaints from disabled people, but not being instructed by them.

Surely, if our society, if the UK as a country, is serious about disability discrimination – or indeed any form of discrimination – it shouldn't be up to those who are already disadvantaged to enforce the laws that protect us.

The Grief of Disability

sam — Fri, 20 Oct 2017 10:41:57 +0000

The Grief of Disability

sam Fri, 20/10/2017 - 10:41

I was at a charity trustees meeting last night. The charity, Lancashire Central and North Area Quaker Meeting, operates over a chunk of north and central Lancashire, and we vary our meetings over the different sites, so a bunch of us were sharing a lift, and having nice and harmless conversation on the way down.

We talked about things done on holidays over the years, places people had been, and so on. Notes were compared on visits to Geneva, and I talked about how I went out of my way to look up the Villa Diodati, the site of the story-telling session between Mary and Percy Shelley, Lord Byron, and Byron's doctor, John Polidori. This led onto other reminiscences, including of a trip to Whitby with friends during a holiday to Yorkshire between A-Levels and university, where one literature student among us wanted to see the lighthouse that features in Dracula, about which their teacher had made much of phallic imagery. Given the size of the lighthouse, once we saw it, this was very amusing.

So far, so innocent (and juvenile, I suppose). I then remembered other things about that visit. How we parked on one side of the harbour, and walked through the town and up the stairs on the hill to the abbey. It's quite an experience – nothing Earth-shattering, but something I would recommend to anyone with the opportunity. It is a rather charming town, and the jewellery is worth writing home about, Whitby jet being a particular speciality.

But as I remember that trip, I was struck by the fact I couldn't do that today. Even were there a smooth path, not just steps, that climb and that distance would be beyond me. Even the walk through the town, from one side to the other, would be a significant challenge, leaving me unfit for much physical activity for a while afterwards. It's hard to express to someone who hasn't experienced it how much energy it takes to stay upright when your body doesn't do it automatically any more.

And so I stopped speaking, and cried quietly. I didn't want to explain to my fellow trustees why I was crying, so I endeavoured to have them not notice; the fact it was dark probably helped. So I sobbed silently, and let tears fall unremarked. I couldn't stop myself sniffling as tears ran through my tear ducts into my nasal cavity, but I sniff often enough that this wasn't remarkable. I cried for the things I would never do again, and for the things I never did and now never could do. I cried for the lost possibilities of my life, and for the fact I didn't appreciate these things as much then as I would now, if I could suddenly do them again.

Learning to live with a new impairment isn't simply a matter of learning and adapting. It's a process of bereavement, of grief. You have lost some capacity, you have lost possibilities for your future. Sometimes you will eventually find that some possibilities aren't as far out of reach as you first thought, and who knows what might happen in terms of new treatments or aids and appliances being developed, but that's not something you can afford to focus on at first. When I first developed narcolepsy, I spent a long time in the denial phase. Eventually I had effective treatment, and could do a lot of things against that I spent a couple of years unable to do, but because I didn't accept what I couldn't do in that time I wasted time, energy, and emotion on trying to push myself to do things I just couldn't do – like sit down and study a course book for more than 10 minutes, say. I berated myself, that if I just tried hard enough I should be able to do it. Eventually I accepted it, and even though it was temporary, I grieved.

Impairment is a loss, and like any loss we never truly get over it. Is there anyone who has lived long enough with a bereavement who doesn't know the sudden, sharp and surprising pain of being reminded of a loss. It may be years since you got over the initial rush of grief, and went back to living your life day to day without the sadness and loss bearing down on you. Suddenly, something sharply reminds you, often a particularly pleasant memory, and you feel that sharp loss all over again. It probably doesn't last long, and you can function, but for that space of time you remember all over again that grief and pain. So it is with long-term impairment, that you remember what you once could do, and can do no longer. Regret, loss, even self-criticism resurface. You get over it again, and you get on with life, but you will never be beyond experiencing it over again.

Attitude Matters More Than Words

sam — Wed, 05 Jul 2017 18:46:44 +0000

Attitude Matters More Than Words

sam Wed, 05/07/2017 - 18:46

But Words Affect Attitudes

There’s a big difference in disability discourse between the US and the UK. This is largely summed up in how the disability movement in each country prefers to refer to the people it is talking about: here in the UK, we say “disabled people”. In the US, they say “people with disabilities”. At the UN, they say “persons with disabilities”, but that’s for a whole other set of reasons.

It doesn’t sound like a big difference, but campaigners and theoreticians in both countries will vociferously defend their preferred language. To the Americans, it’s important that the language be “person first”, to make it harder to elide the personhood of such individuals. To the Brits, it’s reflective of the “social model of disability”, a theoretical construction by campaigners and academics that originates at least as far back as the 70s, when the Union of the Physically Impaired Against Segregation said “it is society which disables physically impaired people. Disability is something imposed on top of our impairments”. The social model thus differentiates between impairment and disability, where impairment is the difference in function, be it physical, emotional, sensory, cognitive… you get the idea; disability is the social disadvantage faced as a result of impairment.

Thus the Americans feel that British language is impersonal and makes it too easy to forget the “person” part, while Brits feel that American language is perpetuating attitudes to disability that ignore the responsibility of a just society to all its members. I dramatically oversimplify, of course – there’s more to the difference of language than that, and there are of course people on each side of the Atlantic who prefer the choices of those across the pond.

It seems to me self-evident that what matters most, in the approach to disability in society, is that we be just, not merely compassionate. That we recognise that the arrangement of society by largely unimpaired people fails to include impaired people, and thus discriminates against us. That is the essence of the social model, and the issue of language would seem to be secondary. It is also reflected in the UN Convention on the Rights of Persons with Disabilities (UNCRPD), and in the approach of most western disability campaigning, especially that led by disabled people. What matter, then, what language we use? Isn’t the social model language only truly meaningful when the audience understands the definition of “disability” in use, and the distinction lost on those who don’t already understand it?

I’m not sure. It should be no surprise at this point that I’m a proponent of the social model, though expressions of it have been known to have problems – tending to focus on gross physical disability in ways that are hard to apply to a lot of cases of chronic ill health. That can all be worked out with a bit of time and discussion. Yet I also know that most people that we, as disabled people, speak to about disability won’t know about it, and trying to educate them all probably isn’t the most efficient way to go about it. Yet still I struggle with “people with disabilities”. I can sympathise with the aim of “person first” language – I’ve seen enough people elide “disabled people” to “disableds”, sometimes innocently, and others as a reflection of the person’s attitude to us. I don’t know how much mileage there is in making people say the word “people” in order to make them think of us as people, but maybe there’s something there. Ultimately, I won’t argue with anyone about their choice of language in this area unless they want to have that conversation – and we’ll talk about it on an intellectual level, rather than berating.

No, my problem is with “with disabilities”. It’s not just that the language doesn’t fit the social model – I’m not just railing against it out of some sense of intellectual purism (though I’ll admit there’s a bit of that). There’s actually a deeper meaning to the “with disability” that I can’t shake, and that I’m not comfortable with. The idea that disability is attached to us, even part of us – that it is intrinsic (barring some sort of cure). To me, that seems to feed a complacency – that the blind will always be blind, and we do what we can but, at the end of the day, they’re blind. Yes, they are. Yes, barring cures, they will be – and most causes of blindness apart from cataracts seem to be progressive; treatment will maybe slow it, but not reverse it. Until we have bionic eyes, most people who are blind are stuck being blind.

The thing is, they aren’t stuck being excluded from society. What excludes them from society is the fact that our society is arranged, largely, on the assumption that people can see – much as it is on the assumption that people can walk, that they can work predictable hours, that they can get up in the morning and get to sleep at night, that they aren’t in constant pain. That can all be changed, and must be changed, before we can claim to live in a just society.

The separation of impairment and disability in social model discourse is not an intellectual game. It is what allows us to argue that disability is an axis of oppression, like race, gender, and sexuality. It is what allows us to argue not for special treatment so that we can join in, but for fair treatment so we aren’t excluded; even if the practical result of the two ways of expressing that goal would be the same, the sense of injustice to be corrected is very different.

disability

Connecting and Disconnecting

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Book: Social Policy First Hand

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The Glaring Flaw in the Equality Act

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The Grief of Disability

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Attitude Matters More Than Words

But Words Affect Attitudes

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