Dear Colin
I have been offered travelling expenses, why haven't you?
Also the programme for this conference talks about Social Care, Education
and Criminal Justice. What does that say? What about employment, what about
the accessible environment?
There is no mention of any speakers who hold (or as far as I can tell, have
held) any elected positions on national pan-disability bodies.
As Chair of GLAD I have submitted my tuppence worth on our behalf.
GLAD is, as far as I know, the oldest disabled people's pan-disability
organisation open to all in the country.
Yours
Adrian
P.S. I suggest that as you are the one who proposed this, you just turn up
and we can embarass them into doing a collection. I will also need a
research, communication and access assistance PA to help me on the day. You
have performed this role for me in the past (e.g. previously in Manchester).
Would you be so kind as to do so on this occasion?
Dear all
As Chair of GLAD I have been authorised to issue this supportive message on
behalf of GLAD. This is repeated in the body text of this email for anybody
who might have difficulty opening attachments. No final statement of needs
can be endorsed by us unless there is no "editing out" of essential
neurodiverse (and autistic) unmet needs such as a reform of the Human
Resources system, disability definition reform and the ICE (Individually
Controlled Environment) alternative to open plan mania, including cellular
offices for those who need them, and separate compartments on trains, is
endorsed. Likewise full inclusion of those who may not sign up, 100% to CEHR
and New Labour credo on equality and diversity. This requirement to signing
up to their entire equality and diversity credo for CEHR and ODI posts,
smacks of the last throes of the pagan Roman Empire (circa 303 AD) in which
those who professed Christianity could not progress beyond the rank of a
local town supervisor of the imperial brothels if they spoke their beliefs
openly(see especially the Life of Saint Hesychios (previously demoted to
just such a post and then martyred on direct orders of the Roman Emperor for
refusing to recant (through drowning with millstones around his neck) on
March 2, 303 AD). Constantine the Great (see statue outside York Minster)
was crowned in York 3 years later).
Yours
Adrian Whyatt, Chair, Greater London Action on Disability (GLAD)
GREATER LONDON ACTION ON DISABILITY
5, Park House, 13 Girdlers Road, Brook Green, nr Kensington Olympia,
West Kensington, Hammersmith, London W14 0PS. Tel: 020-7-603-9710. Email: *
[log in to unmask] <mailto:[log in to unmask]>*.
Working on behalf of disabled Londoners since 1952
*Minimum set of main demands of neurodiverse and autistic people *
1. Definition of disabled people
GLAD follows primarily the *difference based social model of disability.
Thus we define ourselves as disabled people because *we are *"disabled by
society because of our biological differences (apart from those solely
related to age, gender, race and ethnic origin), including both talents and
areas of naturally superior functioning which society refuses to recognise
and discriminates against us for (differabilities or alternabilities) and
impairments." *
This is to try to eliminate material and spiritual poverty and push society
towards a focus on talents – what people can do and what they are good at,
and not just a negative focus purely on impairments, which has tended to be
confused with complete inability.
Other models of disability are tested against this and are accepted only to
the extent that they are compatible with it. This includes the Medical,
Charity, Administrative and various Religious and other models of
disability.
We very much recognise the diversity of disabled people and thus condemn the
Commission on Equality and Human Rights (CEHR), and the Office for
Disability Issues and other Government and official bodies recent insistence
that everyone who wants to work for them, directly or indirectly, publicly
signs up to their entire credo (or belief system) even if it contradicts
their fundamental and freely and peacefully expressed religious or other
beliefs. This includes people for whom this "obsession" forms part of their
belief system, and of their
"diagnosis", and thus of their difference, such as someone with asperger's
especially. It is thus disablist, hypocritical and wrong.
2. Definition of neurodiverse people
It should be noted that neurodiversity is at least 25 times as common as
autism (at 25+% of the population) and so it is high time to stop trying to
see it as an extension of autism (which remains mired in the can't
talk/interact/Rainman/screaming uncontrollable children in the public
imagination).
We tend to favour the use of "alterna-", where possible, rather than the
purely negative "dys-". And also the dropping of names that generally
glorify "worthy" dwems (dead white European males), but don't really
describe what things are really like and tend to end up confusing people.
This allows peoples superiorities as well as deficits to be considered ( e.g.
the superior honesty, in general, of alternasocics (people who interact in
an alternative way) who have been given the label "Asperger's Syndrome"
There are quite a number of definitions of neurodiverse people. And this is
still a matter of legitimate debate, with many people having different
definitions. We favour quite a broad definition, as Wikipedia certainly has
also done, as we want to ensure that people's needs and aspirations are met
rather than that someone manages to invent a new label for someone else. So,
we propose that neurodiverse people are seen as disabled people whose
processing differences, especially neurological processing differences make
them disabled people as defined in 1. We feel, however, that it is unhelpful
to all concerned to include people with low functioning autism (Kanner's
Syndrome) or global learning difficulties (aka differences)(low-functioning
in every respect(whether developmental or acquired or degenerative), except
where there are "islets of ability" (or talents), or areas of markedly
increased . We thus reject the concept of an ever-broadening "autistic" or
"neurodiverse" "spectrum". We embrace instead the concept of a "neurodiverse
continuum", which however, excludes those people with low-functioning autism
and other conditions who do not meet our definition of neurodiversity.
Neurodiverse people tend to have the same access needs and similar support
needs. Developmentally neurodiverse people, however, tend to be far more
creative than other neurodiverse people, though there are very rare
exceptions where adult stroke and other brain injury survivors have acquired
a new ability ( e.g. three recorded cases of stroke survivors acquiring a
new ability to write poetry). People with some degenerative conditions, such
as "Alzheimer's" can go through a creative "teenage" phase, but then pass
out the other end as the condition progresses.
In practice, it is helpful to divide neurodiversity into four broad groups,
though it should be noted that categories (1) and (2) do tend to overlap and
the "environmental insult" in early childhood may well result in someone who
:
(1) Developmental
This includes those with labels such as (developmental) dyspraxia,
(developmental) dyslexia, attention deficit (hyperactivity) disorder
(ad(h)d), tourette's syndrome, asperger's syndrome, etc. If this is
triggered by some sort of injury or other "environmental insult" then it
must be at such an early age that the person can not remember having been
any different. This group can rarely get compensation, and has generally
never been "habilitated", let alone "rehabilitated".
(2) Acquired
This includes traumatic or acquired brain injury survivors whether directly
through a head injury or through a stroke, or other means (such as a tumour
or in reaction to an injection). It should be noted that, if this happens
early enough in life, this may well be form all or part of the
"environmental insults".
(3) Degenerative
These are degenerative neurological conditions, during which someone at
least goes through a phase of neurodiversity. Such as Multiple Sclerosis,
Parkinson's and even Alzheimer's. With some conditions, however, they may or
will degenerate beyond the point where they can be considered to be
neurodiverse.
(4) Combined or mixed
Can be things like cerebral palsy, where there is a trauma around the time
of birth. Also, if the brain injury was the trigger, or if a developmentally
neurodiverse person has a brain injury later in life (in which case the
developmental neurodiversity can be described as pre-morbid).
(5) Autism
We are confining this to low-functioning autism (returning it to the 1960s
definitions of it), as the "broadening out" of the autistic spectrum may
have been good business for some people, but has led to confusion. The
support needs of a low-functioning non-verbal autistic person are
self-evidently highly different from those of a person with alternasocia
(aka Asperger's Syndrome).
However, in terms of needs, autistic people lead the way. They tend to have
the highest levels of sensory overload, etc. Therefore it is vitally
important to make the environment accessible to even the lowest-functioning
autistic person. By doing so you will help to make it accessible to all
neurodiverse people. A number have their own particular needs, such as being
Makaton users.
3. We intend to concentrate on unmet needs that are not fully appreciated.
Most people realise that spell checkers, etc., are needed. But, few realise
how much things like organisational software, and personal assistance, can
benefit many if not most neurodiverse people.
Apart from the problem that most people who are developmentally neurodiverse
do not realise that they are developmentally neurodiverse, let alone have
access to even proper diagnostic services, including systematic confidential
population screening, which we would recommend, and tend to be mislabelled
with everything from depression to schizophrenia, the most important
unappreciated needs tend to be:
3.1. Access to non-open plan environments. This situation is getting worse
and worse with the open plan and standardisation manias. What is needed,
instead, is a flexible environment, an Individually Controlled Environment
(ICE), in which, like in a "good old fashioned office" (apart from
wheelchair access and hearing loops, etc), everyone is able to control their
own individual temperature, light, textures, colour scheme, air flow, sound
environment, and smell environment, and to be able to screen off their own
area (or open it up if need be). This is eminently achievable using existing
technologies (including, in extreme cases, creating rooms within a room).
The same thing applies to modes of transport and housing and can lead to the
retention, with slight modifications, of some old train carriages so that
people can sit in their own quiet compartment (with CCTV backup), and
converting some of the existing "Quiet carriages" into "silent carriages".
The highest standards on noise insulation in Europe are currently to be
found in Austria.
3.2. Access to gluten-free and milk-free products (both medicines and
foods).
4. Other groups who can benefit
A study done by the Greater London Authority (GLA) in conjunction with the
Trade Union Disability Alliance (TUDA) and others, and published in 2006, it
was found that one of the greatest unmet needs across all types of disabled
people, was for quiet housing and workspaces.
Religious groups and various people who share their dietary preferences also
benefit, especially those with fasting requirements (Hindus, Jews, Jains and
through to some Christians (most especially Orthodox Christians (above all
True Orthodox Christians) or the need for constant peaceful and (very
largely) silent undistracted prayer (such as (especially True) Orthodox
Christians (who call this "hesychia" and who have sometimes had to fight
Western crusaders and others for this right).
5. Finance – saving by not locking up
A hugely disproportionate proportion of people in jail are neurodiverse,
especially developmentally neurodiverse, normally undiagnosed. Also, a lot
get wrongly branded as liars because of their memory and sequencing
problems, differences in tone and intonation and often physical differences
in terms of being able to keep eye contact, other aspects of body language
(both productive and receptive, proprioception, etc).
Instead their creative potential needs to be realised and their interests
channelled, whether it is in strategic thinking, fantastic knowledge of
railways and/or buses, great art, or whatever. Such as an interest in dates
and True Orthodox Christianity and history and thus correctly predicting
that Al-Qaeda would attempt to attack in and around the Feasts of John the
Baptist (Beheading (9/11(New Style (NS)(American) (11/9 (Global
Standard)/29/8 (Old Style (OS), Nativity (7/7(NS), 24/6 (OS), and, of
course, the latest plot (in Docklands, was uncovered and thwarted (are they
finally beginning to listen? on the Feast of the Beheading of John the
Baptist).
6. Rejecting the one size fits all universal mediocrity model of standard
Human Resources.
This means following Aileen Quinton's Revealing Excellence model of ability,
which is fully supportive of alternability, and which seeks to stop people
from doing what they're useless at and to redesign the entire structure of
the workplace around what people are good at.
There is, thanks in part to new EU directives which call for broader
interpretation of the laws on disability in employment, now some helpful
case law (the Southampton College Employment Appeals Tribunal (EAT) case
(2005) (see TUC disability employment guide (available free from them) which
establishes that, in restructuring situations, employers have to consider
creating new jobs designed around disabled employees needs.
A key task now is to extend this from restructuring to all situations.
On 23/03/07, Colin REvell <[log in to unmask]> wrote:
>
>
> Just been onto DRC's website to see, in the 'events' section to see if
> this
> Autism/NeuroDiversity Conference has been advertised, no mention of it all
> all.... see link:-
> http://www.drc-gb.org/newsroom/events.aspx
>
> No mention of Conference on NAS and DANDA websites too.
>
> No wonder there is only 40 people attending this event. Very poor!!! There
> are places for 140 people I am duly informed.
>
> I have also been duly informed that Autistic/ND 'service-users' will not
> be
> paid any accommdation, travel expenses, PA/Support worker expenses to
> attend
> this Conference. What does that say and how it that going to be recived
> within the Autistic/ND community by those who would like to atetnd this
> conference from poor lower socio-economic disadvantaged backgrounds?
>
> I thought the Government stated vrey cler directions that all
> 'service-users' (Disabled ciziten stakeholders) should bee fully payed
> consultancy fees and full out of pocket accommodation and travelling
> expenses to attend these sort of events. Also many disabled people need to
> have funding for the PA's/Support Workers to attend 'with-them' too.
>
> Why are the DRC going against the Government s recommendations, especially
> for 'expert patients' ect... ?
>
> Can someone one let myself and othesr know on this, especially any
> representatives from within the DRC?
>
> It's Friday now and no-one has contacted me, or my independent advocate to
> inform me if I have a place at this event. How poor is that too?
>
> My advoacte has rang them on numerous occassions now and has had no
> responses at all and it 12:35 pm now on Friday.
>
> Are others being informed and updated of the have got a place at this
> conference, or is it just me and my advocate experiencing these problems?
>
>
> Yours
>
> Colin Revell
>
> _________________________________________________________________
> Txt a lot? Get Messenger FREE on your mobile.
> https://livemessenger.mobile.uk.msn.com/
>
>
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