The conference format involved presentations from speakers (some followed by question-and-answer sessions), alternating with splitting into small groups (arranged around numbered tables), each with a "facilitator", to discuss different aspects of the key issues and then choose one person to feed back to the whole conference. It was interesting to observe the similarities and differences to (supposedly) non-hierarchical activist gatherings such as the Camp for Climate action gathering i went to last week, and some of the terms and concepts which seem to have been co-opted by government from new social movements (creating a kind of pseudo-non-hierarchical conference style?)...
One of the 4 "Hot Topics" of the conference was the government's (supposed) aim to set up "User Led Organisations", modelled on the existing Centres for Independent Living, in every area of Britain, and using money from a Department of Health "development fund". Of course, from a cynic's point of view, this is questionable considering that existing CILs are being closed down, struggling to survive funding cuts, or being seriously compromised (arguably even corrupted) by conditional funding from "charitable" sources... A word mentioned several times, but not really clarified, was "businesslike" - seemingly implying that one intent was that the new ULOs should in some way act more like corporations.
The lack of consensus about what the phrase "Independent Living" really means (both in the eyes of the government and in reality), and about what a "User Led Organisation" should look like, was also discussed - some activists challenging even the use of the word "user", and some criticising the implicit medical-model thinking of the funding coming from the DoH. The urban/rural divide also came up, with an interesting (but possibly difficult to implement) idea of a "mobile CIL" that could visit isolated disabled people in rural areas.
Second was the United Nations Convention on Disability Rights. Interestingly, the description of rights given by the presenters in describing the UN Convention was a fundamentally moral conception of rights - i.e., rights as "things" which exist independently of laws and governments (or which "every human has and which cannot be taken away", as one speaker put it), but which can be either upheld or not upheld by laws - a liberal conception which, IMO, somewhat fails to recognise the reality of the lives of people living in the many, many situations (such as disability institutions) where they don't "have" human rights in any meaningful way, regardless of whether they morally or theoretically have those rights. Possibly this is the philosophical question of the difference between an "is" and an "ought"?
The UNCDR is very clearly rooted in the social model of disability - containing such rights as inclusive education, family life, the right to choose where to live, to participate on an equal level in public and political organisations, and to have organisation of disabled people. As such it stands in clear contrast to the DDA 1995 and the current Single Equality Bill, which are both essentially based around a medical model definition of "disability". The UK has signed but not ratified the UNCDR - despite the fact that countries such as Cuba, Jamaica and India have ratified the convention...
The remaining "Hot Topics" were young disabled people's transition to adulthood and disability-related hate crime. Annoyingly, each table was only given the opportunity to discuss one of those issues (ours was given hate crime), and then the tables' responses were read out in indiscriminate order, mixing up the responses to both topics. The person chosen to feed back from our table was a non-disabled spokesperson for Scope and RNIB (note that these charities are now trying to portray themselves as campaigning for equality, while still being controlled by non-disabled people and practicing segregation) - my points about institutional disablism being a root of anti-disabled hate crime, and things being done to disabled people (such as locking them up and denying them rights as basic as the right to choose what to eat, when to go to bed or when to go to the toilet, cutting out their organs without their consent, or killing them) which would be universally considered hate crimes if they were done to any other minority group, being considered to be acts of "care" and done in our best interests because of the deeply fucked up medical model images of disabled people (as "burdens", as "helpless", as objects of pity, etc) that are so prevalent in media and culture, completely failed to be fed back...
The statistics quoted on hate crime (which were shocking enough - for example, that 1/3 of people with learning impairments experience harassment every week, and that 47% of physically impaired people had either been physically abused or seen fellow disabled people get physically abused) were also ones which came from charities (Mencap and Scope, in the above examples), rather than from organisations of disabled people...
Some good points were, however, allowed to filter through to the conference, including the way that the mental health system pathologises "service users" for reporting hate crime, the fact that some disabled people may perpetrate hate crime against others (often due to "divide and rule" hierarchies of impairment), and the prevalence of perceptions of disabled people as either "socially deviant" or "vulnerable and childlike" - although some truly idiotic ideas were also not only expressed, but seemingly approved of by large numbers of delegates - such as "punishing" perpetrators of hate crimes against disabled people by forcing them to "work with" disabled people... Yeah, and punish rapists by employing them as rape crisis counsellors while you're at it (that was sarcasm, for anyone who isn't good with that)...
Similarly, some good points were allowed to come through about young disabled people and their rights to full citizenship, such as the taboo subject of relationships and the assumption of asexuality, the need for young disabled people to meet older disabled role models, and that non-disabled parents of young disabled people are often potential opposers of their children's rights, and thus it is crucial that they be educated to be allies, arguably from as early as antenatal classes if a diagnosis of impairment exists at that stage (something obviously very strongly felt in the shadow of the Katie Thorpe case).
However, if my experience was in any way typical, the more radical ideas raised in the small groups (i.e., the ones which directly threatened the government's spin of itself as safeguarding and upholding disability rights) were all probably discreetly not given a platform. The notes made by the "official" notetakers at each table were collected, supposedly to be used in consultation, but the cynic in me finds that extremely doubtful...
It was however heartening that there was a general recognition (at least among those present who i had the opportunity to hear the views of) that "Equality 2025" is a bad joke - the DDA was supposed to give disabled people equal rights in 1995, 12 years later in 2007 it clearly hasn't, and now we are being promised "Equality 2025" - a wait of another 18 years!? (Apart from the fact that "Equality 2025" sounds like some strange socialist space opera - a Cold War Russian equivalent to Star Trek, perhaps?) We need equality now.
(Hmmm... possible disability movement counter-ODI logo/slogan - the Equality 2025 logo, with the pink and blue changed to red and black, and "2025" changed to "NOW"... anyone got photoshop skillz? Not quite sure what "Working with government for disability equality" should be changed to tho...)
(edit: i can't find the Equality 2025 logo online, although you can see a hand-drawn version of it in one of the pics below... will scan it if i get a chance...)
Non-content-related stuff: the free food was pretty good (one decent veggie option, although there was nothing vegan... tho what the so-called "potatoes" actually were, i don't know... but very, very nice coffee cake), and we (the Birmingham Coalition of Disabled People/Housing4All posse) stocked up very well on discarded notepads and pencils afterwards... there was some positive networking for Housing4All as well, despite us running out of leaflets :)
Accessibility wise things were as good as could be reasonably expected, with sign language interpreters (and a spoken English interpreter for the speaker who was a BSL user), palantype, an audio loop and good physical access, although there was one amusing moment when the palantypist mis-typed "neurodiverse" as "neuroadverse people"... ;)
There was also a rather amazing woman (not really sure if her role was part of the accessibility, or just to provide something visual) whose job was apparently to create a cartoon representation of all the discussions on huge pieces of paper pinned to the wall, in a brilliant Tony Hart stylee using huge paint pens:
There were points at which i found myself experiencing a strange cognitive dissonance, thinking "what am i, as a notorious anarchist who thinks government is the problem, doing here at a government consultation event?". I think this is one of those examples of intersectionalities of movements creating strange bedfellows - one particularly strange position i found myself in was that of demanding stronger anti-discrimination legislation, including criminal punishments for businesses such as losing their licences for breaking equal access laws - when normally i would be totally against the whole concepts of a criminal law system and of licensing... this is definitely a whole area which i need to explore more ideologically and try to put together a more "joined-up" perspective on...
One thing that kind of pissed me off (although i don't know what people with learning disabilities which affect verbal comprehension would think of it) was the IMO quite patronising tone of the "easy-to-understand" documents in the free pack accompanying the presentations. Much worse than patronising tone (which is, of course, subjective), however, is the blatant distortion of the first sentence of the document accompanying "Hot Topic presentation 1 - Independent Living and User-led Organisations" - "The government has a big plan for disabled people's lives to be equal to other people's lives" - referring to the Improving Life Chances of Disabled People" document - basically portraying the government as the author of the disability rights movement, instead of the primary institution that we have had to fight against to achieve rights, and which still ensures through all kinds of institutional disablism (in housing provision, in the benefits system, in employment legislation, in the "justice" system, in NHS hospitals, in segregated education, in its failure to ratify the UN Convention, etc, etc) that disabled people's lives are not "equal to other people's lives"...
Despite the obvious bullshit government spin and unlikeliness of anything coming out of this (except further flashy-but-meaningless "consultations"), this still felt to me like a positive event - although it might be that, because of my desperate desire to be involved in anything at all disability-related, i have somewhat lower standards for a government convention on disability than i do for, say, one on climate change - networking was good, there were plenty of radical people scattered among the delegates (and even the speakers/Equality 2025 committee members), and i got the same buzz i always get just from seeing and being around a large group of disabled people in one place at the same time (the variety of represented impairments was, IMO, to be commended, although there was probably an (extremely common) under-representation of people with learning disabilities, and the self-fulfilling perception of disability organisations as only for, or dominated by, wheelchair users to the exclusion of other impairment groups was at least mentioned).
It is still an absolute necessity for the disabled people's movement to fight for disability rights now, and not fall for government promises to sort it out over the next X number of years, however...
You can write to Equality 2025 c/o The Secretariat, 6th Floor, The Adelphi, 1-11 John Adam Street, London WC2N 6HT, or telephone them on 0845 460 2025 (UK)...
2 comments:
Excellent post!
Many thanks for taking the time to write it!
Yes, whatever happened to the 'Rights NOW!' movement? Because we need them back again...
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