------------ ---------- Diary of a Goldfish: August 2009


Diary of a Goldfish

Thursday, August 27, 2009

This post is brought to you by the numbers 3 and 13

Like much of the blogosphere in August, things are a little quiet around here. My health has been up and down, and when I've not been ill, I've been using my energy to either work on the book or get out to enjoy the sunshine. I've got lots of things I want to blog about, but forgive me if that happens slowly. Thank you all for sticking around.

Yesterday was the thirteenth anniversary of my getting sick. I don't mind it too much, I certainly don't mind the anniversary. I just hope that, being a teenager, the Dreaded Lurgy doesn't now try to hook up with other chronic illnesses. I'd be very happy if it throws a tantrum and storms off, but this seems unlikely.

It was also the anniversary of going to see Star Wars: The Phantom Menace, my finally getting my essential GCSEs (nine years) and of my sister going into labour (three years). So Alexander is three today! I have made him a fire-fighter's uniform, as he is currently obsessed with putting out imaginary fires and rescuing people at the moment. I shall maybe add a picture to this post if someone takes one.

Have not deserted you. Will be back again soon.

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Sunday, August 09, 2009

Disability and modern-day Nazism?

Last night, disabled activist Liz Crow sat in her wheelchair on the Fourth Plinth in Trafalgar Square dressed as a Nazi as part of the One and Another art project. It was a shocking image. Kind of like when Samuel L. Jackson dressed up as a Nazi in The Spirit (a terrible film, memorable only for putting a black man in a Nazi uniform). And then this morning, Nick Dupree shows us Donald Duck as a Nazi! But of course Liz Crow had far more dignity than either.

Liz Crow's brave and startling protest was to commemorate the victims of Aktion T4 and to draw attention to the relevance of those events for disabled people today. She says in the press release available here;
Today, the development of pre-natal screening and a rush to legal rights for newly disabled people to assisted suicide, show that disabled people’s right to life still needs to be defended. With a rise in hate crime, disabled children still excluded from mainstream schools, and over 340,000 disabled people (more than the population of Cardiff) living in institutions, disabled people still experience those historical values as a daily threat.”
Clair Lewis put it even more strongly;
"The values that the Nazis used to justify murdering quarter of million disabled people are just as strong today."

Now Nazism is over-rated. Nazism itself has become synonymous with total uncomplicated evil, the worst thing ever. It was, at the very least, a rather complicated evil and hardly the worst thing ever - very many times more people suffered and died in the Atlantic slave trade, for example, because of similarly nationalist and racist ideas.

These days the concept of Nazism is a touchstone of hyperbole. My favourite Nazi-related portmanteaus are econazi and feminazi. Environmentalism and feminism having exactly what in common with the far-right? Telling people to change their behaviour, apparently. The first Nazis took away people's freedom of speech, freedom of movement, the right to a private life and in many cases, life itself. These days, exactly the same kinds of people are making us feel ashamed for using plastic bags. Vee have ways of making your recycle und respect vimen!

But calling someone a Nazi is a good way of shutting them up. It's an insult, it turns people off and it silences debate. Nobody is going to engage with you in you compare them to the forces of tyranny and genocide. And clearly that's often way people are after. If nobody you disagree with engages with you, you can pretend that nobody (who isn't an evil Nazi) has any other arguments. I don't believe that of Liz Crow, Clair Lewis and other disabled activists for whom I have the utmost respect, and so I want to challenge their assertion.

The idea that modern disablism and the disablism of the Nazis are connected is not without merit. Personally, I've never heard anyone suggest that disabled people should be killed off but I do occasionally hear or read someone state that disabled people are an economic and social burden to everyone else, and it is imperative for current society and future populations that we abort foetuses which are likely to result in a disabled baby (even if the vast majority of disabled people could not be "screened-out"). But this isn't many people, certainly not most.

I have met, hear or read very many more people who think that disabled people are an economic and social burden but that, out of compassion, we should be looked after. They see reasonable accommodation as an act of charity, state benefits as alms. This causes no end of problems for us and it does leave us in a vulnerable position should the former rhetoric grow stronger. But is this comparable to Nazism?

I have written two lengthy posts on euthanasia if anyone wants to read my ultimately ambivalent views here and here. I'm not making an argument for one side or another here, just asking questions about some questions about the comparison, focusing on the most controversial issues of euthanasia and abortion.


Are the abortion of disabled foetuses and calls for the decriminalisation of assisted suicide driven by the same motives as the Nazi Aktion T4 programme?

As far as abortion is concerned, I'm afraid there is an echo. The individual decisions of pregnant women are always individual, but broader social attitudes are clear. Parents of disabled children (and disabled parents or non-disabled children) report the judgment of others that having their child was somehow irresponsible. Sarah Palin's choice to continue with her pregnancy when her unborn child screened positive for Down Syndrome has been presented both as an act of saintliness and profound selfishness - it was neither. I've written a lot about prevention here and here, but yeah, it's the same old. Don't subject your child to this half-life, don't burden society with this half-person.

But does that mean we shouldn't screen for impairments and we shouldn't allow women to have abortions on those grounds, just because the rhetoric stinks? Does the only way to make disabled people equal involve restricting women's reproductive freedoms? Would it not be better to focus on the creation of a world in which having a disabled child was not seen as a disaster?

Assisted-suicide is quite a different matter. Calls for decriminalisation are driven by ideas around compassion, the relief from tremendous suffering or simply freedom - the freedom for people with severe impairments to make the same self-destructive choices that the rest of us can.

Whether these ideas are misguided is up for debate. Point is, the non-disabled people most vocal about assisted suicide do not so much as imply that this is about disabled people being a burden to others. Tragically, some of the disabled people talking about assisted suicide consider themselves a burden, but that's not really how this argument is popularly made.


Are there similarities between legal assisted suicide as it might exist in the UK, the abortion of disabled foetuses and what the Nazis did to disabled people?

No. There's a very important word here and that's consent.

This was the biggest reason that T4 was ultimately abandoned. The Nazis didn't act with the consent of disabled people's families, let alone the disabled people themselves. There is a tremendous moral difference between an abortion which a woman consents to and a forced sterilisation. There is a similarly enormous difference between assisted suicide and murder. And whilst alas, many Germans could turn a blind eye when the Jewish family down the street disappeared, when it was their child, their parent or their sibling, it could not be born.

Being murdered, or having your reproductive choices violently removed are perhaps the greatest imaginable crimes against your person. Not that everything that may be consented to is necessarily okay, but at least there's some room for debate when there is consent.

And I think it is possible to increase the degree to which a person can give their consent. The more information a person has, the less pressure they are under, the more freedom they really have. Whatever the choice they have to make.


Could assisted-suicide be the first step on a slippery slope towards the persecution and genocide of disabled people?

Slippery slope arguments can be made about any change and are therefore best avoided.

In any case, it is very unlikely. I have plenty to say about the disablism that exists in the world today - as do others - but I still reckon that we're winning the battle. In general, things are better for disabled people in the UK now than they were five years ago, and even better than they were ten years ago. There are increasing reports of disability hate crime in the UK, but that may be because we've only very recently started talking about hate crime towards disabled people. Like any kind of crime against an oppressed group of people, reporting patterns and offending patterns may not completely coincide.

What is a real danger is unintended consequences. In the same way that women report feeling under increased pressure to abort a disabled foetus, there will be some severely ill people who will feel under pressure to opt out – or, perhaps even worse, some people with physical impairments and depression may find that their irrational suicidal thoughts are given some legitimacy by the society in which they live. This is a long way from genocide, but it would still be very very bad news.

The one thing I do feel really strongly about in all this is that there is no moral difference between the suicide of any two people who are not actually dying. The life of a young man who wants to die because he has a spinal injury is no less valuable than that of a young man who wants to die because he failed his exams or broke up with a beloved girlfriend.

But there may be ways of decriminalising assisted-suicide to prevent unnecessary suffering in death and preventing tragedy. If perhaps we think and talk about it for long enough?

Whatever happens, disabled people who consider themselves equal to non-disabled people need to be talking about this stuff and applying a little imagination. These are grey areas of morality; people have abortions or end their lives because they regard their chosen course as the lesser of two evils. I believe that we can and must decide which shade of grey is preferable for everyone, but seeing the matter in black and white missing the point entirely.

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Wednesday, August 05, 2009

This is the Real World #2 Social Confidence

Last weekend, the Catholics Archbishop Vincent Nichols had a moan about social networking and how people were losing the skills to talk face to face. This reminded me that I had started writing about the benefits of on-line social interaction.

One of the great myths about using the Internet as a social tool is that too much time at a computer can make you more insular, turn you into the stereotype of the introverted geek with diminished social skills. As in the old joke about computer programmers;
How can you tell if a programmer is extroverted?
He's stares at your shoes when you're talking to him.
Some critics of social media are really very serious about this – the Archbish says that teenagers are killing themselves because of their transient on-line friendships (as opposed to fifteen years ago, when next to no-one had the Internet, and the UK suicide rate was markedly higher*). But they miss the absolutely essential point about on-line social interaction. This is part of the real world, not another world disconnected from this one. And I would argue that on-line social interaction can improve both our social confidence and our social skills.

Once again, chronic illness makes my experiences rather extreme, but not irrelevant.

If you spend a lot of time at home, your social muscle gets deconditioned. However much you might long for it, when you finally find yourself in the company of other people, especially new people, it can be extraordinarily hard work. The physical presence of new people can be over-stimulating. They look different, they smell different and you have a whole new repertoire of body-language, facial expression and tone of voice to get used to – and respond to appropriately. Other people take an enormous amount of energy before you even start trying to talk to them. Fortunately, they're mostly more than worth it.

The real problems arise when we pay attention to what we are doing. We're tired and we're slightly bamboozled. We're probably not smiling enough – or perhaps smiling too much and failing to drop our smile when we're being given sombre information (I'm afraid I do that a lot – if I'm still smiling after you've told me your cat has died, please give me an extra second to process the information before assuming I am glad). And we're almost certainly not saying the right thing. We're boring. We're tactless. We're standoffish or we're over-friendly. Frankly, we're such a complete and total idiot that we probably shouldn't be let out around other people at all!

My loss of confidence was probably the quickest and most crushing psychological effect of being ill. Other emotional consequences took a while to set in but I went from being genuinely out-going, stage-struck teenager to being uncomfortable around people other than my close family, within the space of about six weeks.

Now this wasn't just about isolation. In fairness, the cognitive effects of my illness were at their worst early on – I was a zombie, frankly. A zombie too nervous to get close enough to actually eat your brains. Disability can also have a profound effect on our self-image. We have to find brand new ways of realising that we are okay as people, that we have the same value we always did. We may have to adjust to a different kind of body. And we face particular challenges to our social confidence, like using a wheelchair or walking stick, which can be like wearing a flashing light or an invisibility cloak, depending on who's looking.

So there have been occasions when I'd said I was too ill to go out when actually, I was too scared. And that's a horrible situation. It was never that I didn't want to go - I would have been looking forward to it. But then it'd be time to get ready to go and I'd begin to get nervous, and eventually the nerves would rise to a panic. And for the strength of that panic, there might as well have been a pack of hungry velociraptors in the street outside. I was not going anywhere.

Of course this is deadly, because as with any phobia, avoidance only makes the next time even harder. At the point where you commit to go somewhere but chicken out at the last minute, that's a problem and only a few steps away from being an illness all of its own. Fortunately, such occasions were very rare for me, but some level of social anxiety is very common even for healthy people who leave the house more than once a fortnight. It is completely reasonable to want to come across as a decent kind of person. Even if you are happily non-conformist, you don't actually want to irritate or offend anyone, even the squares!

Anyway, these periods where my social confidence got so bad coincided were periods where either wasn't on-line, or not spending much time on-line. Spending time on my computer compensates a great deal for the isolation of illlness. It's no substitute, as I've said before. But it does seem to prevent my particular level of isolation from damaging my mental health. And if it can do that for me, I don't see why it can't benefit everyone who uses the Internet as a social tool.

Rather than turning us into loners, on-line contact is excellent practice for face-to-face. In particular, you lose the fear of strangers. I frequently “speak” to people I don't know very well, and I have learnt that I don't fluff up that badly. Occasionally, I am clumsy and wires get do get crossed –one would expect this to happen more often on-line than off – but it's almost always resolvable and if not, you learn it doesn't matter all that much. The world doesn't implode if one person thinks you're an idiot. At the same time, strangers are often extremely helpful, friendly and supportive. And some of them become your friends.

But even transient encounters are not unimportant. Comments like the Archbishop's about social networking undermining community life strike me as particularly ironic. Communities, unlike families and friends, are relatively large groups of people who don't know one another well but look out for one another despite the vagueness of their acquaintance. What undermines community life is the idea that you shouldn't trust or invest in people who you don't know intimately. This is why neighbours don't talk to one another – a reluctance to talk to strangers means that strangers is all they'll ever be.

You also get to learn and practice social skills in a safer environment on-line. It's safer because you can take your time to respond - even on IRC, you've got a chance to think twice before you speak. And perhaps best of all, on-line, it is possible to sit in a corner and listen without saying anything for periods of time without anyone fussing over you. Off-line, especially if you are a woman, you are expected to look cheerful and join in. And make the tea.

There are lots of forms of social isolation and alienation which can make people self-centred, not just not getting out much. But on-line, you can't just talk about yourself all the time, you are confronted by the complexities of other people's lives, reminded that your troubles are not extraordinary and your opinions not unique.

Of course, not on-line interaction is trouble-free. Social-networking and e-mail pose particular problems as tools for bullying and harassment. Not all interactive media is truly interactive, and there are places where people can express uncompromising opinions without paying any attention or respect to others and without getting any real feedback. Instinctively, I have my doubts about whether the BBC's Have Your Say pages or the newspapers who have a Comments thread under every story aren't in fact deeply unhealthy for their users. And fora where there is nothing but bickering and bullying are likely to be as damaging to one's social skills as a hostile work environment. But safe places do exist and they can be created.


* I'm not suggesting the Internet has brought down the suicide rate, just that there's no evidence that it's making things worse. I know what I'm about to say is a cheap shot but it's also a serious point (we are talking about the untimely deaths of young people, after all). They reckon about a third of teen suicides worldwide are related to sexuality - you know, perhaps some kid falls in love but some authority of other in their life, a church for example, says that love is an abomination. So if you were an Archbishop and you really did care about young people, as opposed to gaining publicity through your participation in a moral panic (one very popular with a news media which is struggling in the Internet age), then there might be more pressing matters to look at. Just saying.

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