extemporally

Scapegoat: Why We Are Failing Disabled People, by Katharine Quarmby.

Holy shit, this was such a hard book to read because it was, truly, one of the most upsetting things I'd ever read. I like to think of myself as having a relatively high threshold, I don't get triggered at all and I get upset by very little, but this was horrible. Basically the book focuses on disability hate crime. It starts off by considering the historical context (disability in Roman times, disability and medieval witchhunts, Victorian freakshows, and the rise and fall of institutionalisation) before focusing on the prevailing (legal) structures of the day as well as contemporary hate crimes. It was pretty grim stuff.

I didn't enjoy the history stuff so much but I think Quarmby did an admirable job of linking it to present-day circumstance:

As Alison Lapper says herself, many non-disabled people aren't interested in seeing the 'aesthetic beauty that may live in depiction of impaired forms. If we walk along the beach and find a stone with a hole in it, we don't look at it with revulsion simply because most other stones don't have holes in them. In fact, we may be entranced by the variety of shape that the stone with the hole has brought to our attention. However, we don't respond in that way to the human form when it varies too much from the accepted norm.

Our attitudes to imperfection and disability descend directly from the concept of the body beautiful of Greek and Roman culture. Those cultures, and the stereotypes and prejudices they developed towards disabled people, were and remain very powerful - from the disabled person carrying a stigma, being cursed by the gods because of an innate sin, to the singling-out of disabled people as scapegoats to be sacrificed for the common good, and the increasing exploitation of disabled people as monsters and curiosities, to be collected and exhibited as freak shows - and, of course, for some, being eradicated at birth as not worthy of life. All of these deep-seated cultural beliefs underpin disability hatred and help to explain a general discomfort with disability today.

The hard parts to read [trigger warning, again] were:

The banality and playfulness of the evil often perpetrated against disabled people is best exemplified in what Hugh Gregory Gallagher claims happened when the staff at Hadamer were assembled, in mid-summer 1941, to celebrate the 10,000th murder in the institution. The staff toasted the anniversary with beer and wine, in the same room where the people had been put to death. The body of the murdered man was adorned with flowers and laid on a gurney, decorated with small Nazi flags. The hospital bookkeeper, Mr Merkle, in the words of one witness, 'turned his collar about, put his coat on backward, and intoned a burlesque eulogy of the deceased insane person.

Because, you see, it's not just the Nazis, it was the British, too:

One such was documented in the Committee of Inquiry into Normansfield Hospital in November 1978, which found that the standard of nursing care there was extremely low and that difficult patients were routinely secluded. Faeces and urine were not attended to for days, and the inspector concluded that the hospital was 'generally speaking, filthy', the wards bare and reminiscient of workhouses. Patients had no personal possessions and no privacy.

The book is also upfront about the history of privilege even within disability activism:

However, many within the movement now agree that it excluded certain groups - those with learning difficulties and mental health problems in its early years, the very groups that were first targeted for attack in the community. Jane Campbell speaks for many when she describes the effort of will it took to overcome her own attitudes towards some groups: 'I was horrible to people with learning difficulties at my special school. We were taught to dislike people with learning difficulties because we were "better" than them. It was internalised oppression; I would cross the road rather than be seen with a learning disabled person - when I was a child, I wouldn't be seen with one of them, because I was ashamed. It was later, when I met other disabled people, that I was able to deconstruct my anger and feelings of not liking disabled people, even though I was one."

and also is quite balanced (I don't mean this in the sense of 'bullshit neutrality within an inherently biased paradigm') in discussing the weaknesses of the social model of disability and how that affected public policy towards disability AND the (often false, and non-nuanced) choice between welfare and autonomy:

There is also a very limited understanding of the Mental Capacity Act, behind which councils and police often prevaricate, saying they can't intervene if someone 'has capacity' (i.e. is considered able to think and act independently). But many disability campaigners, myself included, believe the whole concept of capacity needs looking at again. A disabled person may have 'capacity' to live alone and function, but that doesn't mean that they can do that if they are targeted by an unscrupulous person.

Fucking yes.

I was highly interested in the legal side of things (relating to disability hate crime), I wish I'd actually read this book when I was still studying criminal law, because, shit:

... disabled victims are not always seen as sympathetic, and their evidence is often not believed: 'The victimisation of disabled people is rightly classified by the criminal justice system as a hate crime as it shares several characteristics with other forms of hate crime. Its continuing marginalisation from mainstream hate debates may be down to the fact that those who suffer disablist harassment are not commonly seen as "ideal victims" deserving of sympathy and only when this is rectified will disablist hate crime occupy the central place within the hate debate it deserves.

Actually, there's this other part which discusses the fact that a lot of disability hate crime tends to get prosecuted (at least in the UK) as "assault against a vulnerable adult" - and how that's a step forward, yes, but also completely misses the point, in the sense that yes, disability renders a person more vulnerable (I'm speaking socially, not medically), but that doesn't fully answer the question of why that crime happens, and what makes it so heinous. Instead, disability hate crime should be labelled as such (as racial and religious and homophobic etc hate crimes are being so named), as an aggravated category, so that the paradigm shifts from "this disabled person was targeted, and s/he was vulnerable, and that's what makes it all the more heinous" to "this disabled person was targeted, and the fact of his/her disability and the attack is not mere coincidence, instead it is far more likely that they were targeted because of their disability". I'm not sure quite how accurate a summary of the point that is, but that's what I took from it? (Also, I drew this from having street harassment as a parallel - women who happen to be targeted because they were vulnerable versus women who were targeted because... they were women.)

Wait wait a related point (disability hate crime as 'domestic violence', not disability hate crime as 'attacks on the vulnerable', but it's very relevant) is made more clearly here:

[Professor Barbara Perry:] '... Like violence against women, I think that much of the violence against people with disabilities tends to be interpreted as "domestic" to the extent that it is perpetrated by "care-givers". Thus, it is considered of a different order, not encompassed by legal or intuitive understanding of what constitutes hate crime. There is also the broader problem of the justice system's inability to effectively serve the needs of people with disabilities generally.'

And:

We cannot really tackle violence against women and children if we do not challenge the use of the term 'unreliable witness' to refer to someone with a learning difficulty who is being routinely sexually assaulted.

Also:

Mike Smith, now a lead commissioner at the Equality and Human Rights Commission but then working in the financial sector, agrees but takes the critique wider still: 'I think there was a collective self-denial, because I think that many disabled people struggle to understand that disability hate crime actually occurs, just like the wider population does. The population at large can conceive how you can hate a gay person or a black person but the majority of people can't get their head around some people hating us, partly because of the charity model, which says that we should be pitied.'

And can I just say, I love love love (some of) the people in this book, the people who saw what was going on and stepped in to make things better, especially Sir Ken Macdonald, the ex-head of the CPS:

We already know, for instance, that leadership from Sir Ken Macdonald (as well as pressure from disabled people) has had a real and measurable effect on Crown prosecutors and the CPS as a whole. When Sir Ken declared that disability hate crime was a 'scar on the conscience of the criminal justice system', prosecutors listened, policy changed, training improved. This must be at least one of the reasons why prosecutions and convictions are going up.

(The other reason, if you were interested, Quarmby argues is that society for hundreds of years had been adjusted to the institutionalisation of disabled people and did not see them integrated into everyday life - and when that ended, insufficient provisions were made to adapt abled and disabled people into community living. Which I think is an intriguing point, because it points to the insufficiency of structural change (which is not to say that Quarmby thinks we've gone "too far" or "too fast", in fact she argues that the legal and social care systems should do more to work together in safeguarding the interests of disabled people) when unaccompanied by personal change - and it is a fair point, I think I (and many activists) tend to get hung up on pushing for political change because it's often the easiest and quickest way to benefit a lot of marginalised people, but quite often personal attitudes need to reinforce that too.)

Also - this is related - in many (I want to say all, but I think that's not quite true) of the fifty disability hate crimes mentioned here, the victim was friends with the perpetrators, and this explains why:

Coruscating loneliness exposes too many people to risk. As the Dutch theologian Hans Reinders points out, many people with learning difficulties only come into contact with paid workers. 'Many people with intellectual disabilities are, for most of their lives, surrounded by people or professional caregivers and support workers. This means that relationships in their lives are either a matter of natural necessity or - as in the case of professionals - of contractual obligation... both of these kinds of relationship are very important for the disabled person, but neither can establish the crucial good that disabled people long for: being chosen as a friend... Friendship is special because it is freely chosen. Our friends want us as their friend for our own sake. No other relationship, either professional or kinship, can give what friendship gives.'

Because yes. Did you know that in several of the cases mentioned, help wasn't sought because intimidated as the disabled people were, they thought of their attackers as friends? It makes me want to punch things.

I'd say the only bad thing about this book was that it wasn't... written very well at some places - extraneous "It's not" at the end of a paragraph talking about misconceptions, failed parallelism in a passage listing examples ("In the [insert name] case... In the [insert name] case..." then she goes on for about seven cases) - that was more irritating than effective. It also made me feel like the book was written quite superficially in parts, although I don't know how much more depth she could have gone into given that I really don't know a lot about disability rights, and probably has more to do with the way she writes and the fact that I'm basically used to wading through seriously dense stuff for my degree? And not to say - that it wasn't written well, I mean, the use of some words, "prevaricate" and "coruscating", argh. But stirring political invective it was not.

And that's just being nitpicky, because I honestly believe this is (as Tom Shakespeare says at the front of the book) the most important book you could be reading this year - it wasn't all hopeless, there's an entire chapter about the ways to go forward, and there was this passage in it, towards the end of the book:

The time to change, everyone agrees, is now. And change will have to happen everywhere - in schools, hospitals, workplaces, on the streets, in people's minds. Disabled people are human beings like any others, not a race set apart. What I have taken from my conversations with so many of those bereaved by this crime is simply that those who were targeted, and died, are missed as friends and relatives. Angela Shotton misses Christine Lakinski, who came to see her nearly every day, and has 'nobody to knock about with now' at the bingo. Christmas isn't the same without her. Ann Jones has lost the friend, Fiona Pilkington, who lived opposite, who took in parcels for her, drove her to the doctor and was there for her when her son died abroad. In a world where so many turn aside from disabled people, some decent, ordinary people didn't. But that simple act is harder than you think. Go to a pub with disabled friends or travel on the Tube with a visibly impaired friend and you watch the world watching you, avidly at times, sucking in the spectacle and then turning away. The ordinary, decent people who befriended Fiona Pilkington and Christine Lakinski simply gave the gift of friendship, and it was reciprocated, as friendship is. Everyone gained, and we could all learn a lot from them. Befriending projects, such as the one run by Disability Action Waltham Forest, where disabled and non-disabled people socialise together and support each other, are crucial in this. The Outsiders Club, which offers dating opportunities, friendship and peer support to disabled people, is also a wonderful resource. We need more initiatives like this.

Because - yeah. I've had a couple of discussions with people over the past few weeks and I've been going back and forth about whether the personal and political are to be treated as existing in different conversations entirely (in the sense that love does not vitiate social injustice) OR whether "the personal is political" - because they seem apparently contradictory, but are also interlinked, in my head, in a way that I haven't found the words to articulate quite yet. But the point is, I like this passage - because yes, that is it, we need love and friendship. Yesterday I was in a discussion where someone said, "Two men and a child and a dog - it's not imitating the straights, it can be interpreted as a highly radical act" and that made me think of some quote which popped up on Tumblr once, that in a culture where girl-on-girl is fairly normalised a female frienship is the most radical up-you to the patriarchy there is, sometimes, and it's not just (insomuch as it's ever "just") about being nice to each other. If the personal is political, then this is political, and it's no demeaning label to call friendship a political act. It's... radical. ♥

Tipping The Velvet, by Sarah Waters | Never Let Me Go, by Kazuo Ishiguro | The Lantern Bearers, by Rosemary Sutcliff | The Silver Branch, by Rosemary Sutcliff | The Eagle of the Ninth, by Rosemary Sutcliff | The Short Stories of F. Scott Fitzgerald, edited by Matthew J. Bruccoli | Brick Lane, by Monica Ali | The Savage Detectives, by Robert Bolano | Homage to Catalonia, by George Orwell | Cat On A Hot-Tin Roof, by Tennessee Williams | Flapper: A Madcap Story of Sex, Style, Celebrity, and the Women Who Made America Modern, by Joshua Zeitz | Oranges Are Not The Only Fruit, by Jeanette Winterson | The Moon By Night, by Madeleine L'Engle | To Live, by Yu Hua | Into The Wild, by Jon Krakauer | The Next Competitor, by K.P. Kincaid | Raffles Place Ragtime, by Phillip Jeyaretnam | Bella Tuscany: The Sweet Life in Italy, by Frances Mayes | Mao's Last Dancer, by Li Cunxin | Marie, Dancing, by Carolyn Meyer | Man Walks Into A Room, by Nicole Krauss | How To Be Good, by Nick Hornby