hello again Simon
I can now relate to where you are coming from! It was really worrying that
we were not understanding each other correctly through this
discussion/debate because I am very aware how committed you are to
supporting "disabled people"
Anyway your last e-mail as enabled me to build a pitcher of our different
visions around this discussion such debate. So here goes, hope I don't put
my foot in it! As that is the last thing I'm wanting to do.
My view
Our buildings are old in the UK and were not designed for disabled people
therefore we have to get the architecture of this country in line with
access for disabled people.
Our laws are also not designed for disabled people before we need
politicians to make changes that provide us the same access to life that
other members of society have.
So perhaps too our language wasn't designed for "disabled people" too this
could explain for the never ending debate around the world on what is
appropriate terminology for disabled people.
The image I'm getting from Larry, is sort of 2 fold!
Larry appears to me to be questioning that maybe present day use of language
isn't easily flexible for describing disability in any shape or form.
Therefore Larry is using his vigil thinking pattern (which is different to
other people) to stretch the use of language to see whether there's a better
way of voicing disability.
That doesn't mean that others are necessary going to understand all want
this difference. But Larry sees a difficulty with communication that he is
trying to find a solution to.
Second part is that, Larry like myself and many others have a neurological
medical condition that consultants have used various names for. These names
don't necessarily match the medical difference Larry may have therefore he
with others are trying to create a heading/label that is more in tune with
his difference.
On that side I can understand and agree with to a degree!
I'm thinking very differently in that I'm not looking for appropriate
terminology for the future I'm looking for appropriate terminology to fit in
with trying to get recognition and appropriate adaptations for people with
hidden impairments to be able to have equal opportunities to participate in
life.
With reference to diagnosis and the social model. If someone has a very
severe physical impairments but hasn't actually seen a doctor to have a
diagnosis! Does that mean they are not disabled within social model?
Many people have hidden impairments and are unaware of this difficulty this
might seem hard to believe however its true. They can find themselves
living in very unpleasant environment that people with physical impairments
would not accept in this present day life.
Mainstream schooling is here for all including disabled people. Providing
your medical condition is known as a wheelchair user this is instantly
recognised.
However children who have AD/HD, AS, dyslexia and other neurological
differences often can't get diagnosis there are very few facilities to
obtain this in the UK in comparison to numbers who have this and the USA.
So therefore a child is not disabled because there hasn't been a opportunity
to see medical consultant to gain diagnosis. Because teachers, social
workers and many other professionals are already biased thinking children
are lazy and naughty! Children with neurological differences are being
wrongly labelled as "naughty lazy children"!
So these children are expelled from school with no rights to mainstream
schooling that disabled people have.
Much recognition and support is needed.
The local supermarket by law has to be wheelchair accessible in UK, weather
or not there are any wheelchair users in the locality this is still a must.
The local super market doesn't have to be dyslexic friendly unless a
customer actually requests this! Because of how dyslexic people have been
treated it isn't easy to demand these rights. Second the very nature of
disability may prevent many dyslexic people from establishing recognition
for this difficulty within obtaining supermarket friendly for dyslexia. Ie
if legal proceedings were started a supermarket could say that they never
received this request if you are unable to read and write then it maybe more
difficult to provide appropriate proof that you have informed local
supermarket.
So from my understanding of the disability discrimination at is its one law
for some and another law for others. I have personally experienced some
difficulties here myself with the disability rights commission.
Therefore I've set-up the "hi2u for people with hidden impairments" web site
to create a opportunity to voice the difficulties and needs people with
hidden impairments have. To try and create better awareness perhaps
hopefully finding ways of getting society to make appropriate changes that
are needed.
I used the term "hidden impairment" because I think that will fit in with
present day framework of the "social model of disability. I also think that
it will help bring those disabled members of the community together with the
known disabled members of our community to understand each other and work
together for goals that are in common.
I personally think Larry's ideas are very valuable ideas but perhaps its not
the ideal time to convince others Larry is probably 20 years ahead of many
of us and that makes it difficult for us to identify with Larry's imaging.
So maybe we are all right with our own images within this debate.
I'm really struggling with trying to voice what's in my head, I apologise if
I've made mistakes
I will end I said I use to have a mum readily contact me for advice and
emotional support. She has 2 boys on with AD/HD and another with CP both
boys receive DLA. She would readily explain that looking after her son with
CP was hard work but there was time for rest in between! However the child
with AD/HD was non stop requiring attention and help virtually 24 hours a
day. This mum had no doubts what some ever that looking after the child
with AD/HD was much harder work overall.
Oh dear, I nearly forgot you Simon I'm seen you as someone who has provided
enormous amounts of effort and work to create recognition for disabled
people to participate within society and it looks like that work could be
swept under the carpet. Quite rightly you wish to ensure that doesn't
happen!
I guess my ultimate goal is to bring people with hidden impairments together
within the disability movements and culture with the view of supporting each
other to gain full access for all members of society to feel that they are
valuable contributing members of society.
Just something to think about!
Well I shore hope I haven't put my foot in it and this has made some
contribution!
Andy Hayes
village idiot (I sometimes think!)
newly rebuilt UK web site;
www.hi2u.org
Hi2u for people with hidden impairments.
Also known as invisible disabilities.
Hi2u now is Browsealoud enabled. This facility will help people with
reading difficulties use the hi2u web site.
----- Original Message -----
From: "Simon Stevens" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, January 22, 2003 12:18 PM
Subject: Re: Something Positive?
Dear Andy,
Thank you for your email. As you can see, my language skills are not
always that good myself. Oh Dear... This debate is very misunderstood
but you kinda put your finger on it.
You and your son want to be a part of the disabled movement and
contribute your experiences to the bigger picture. We all have hidden
impairments and we all need greater awareness. I now have reflex
problems with means I can not eat late with affects my social life.
There is a humanity with your approach but I do not get with this
neurodiversity movement. They seem to wish to scrap the disabled
movement and the general understanding of disability and our own
experiences and reinvent disabIlity without including many disabled
people.
Anyone that knows me should know I am commited to helping all disabled
people maximize their life experiences and worked damn hard. The sad
part is organisations such as Scope have abused my commitment which has
made be weary about helping others without payment and looking after
number one.
We need to share experiences not try to reinvent the meal.
I personally with you and Chris all the best.
Many thanks
Simon
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Managing Director, Enable Enterprises
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-----Original Message-----
From: The Disability-Research Discussion List
[mailto:[log in to unmask]] On Behalf Of big-hi2u
Sent: 22 January 2003 11:52
To: [log in to unmask]
Subject: Re: Something Positive?
hello Simon
first I must point out that I have "very severe dyslexia" I use voice
recognition software along with text to speech however I'm unable to
notice
many mistakes where the wrong word has been recognised my the software.
It
takes anonymous amounts of time to compose work like replies to articles
on
this forum. Therefore I'm unable to express all the views I have
regarding
this discussion/debate.
Simon, I believe both myself and my son (Chris) met you that an "East
Midlands partnership conference" in fact I seem to remember being with
you
on a breakaway group within a workshop. This was probably about for
years
ago my son was probably 10 years old then. I didn't express my
difficulties
around dyslexia within that workshop and I'm afraid to say when I was
last
to report our group's findings to the whole workshop. I was too
embarrassed
to tell our breakaway group that I couldn't read or write in fear of
appearing stupid. So I made some other excuse. We seem to get on very
well
together within that group and I was fully accepted as a "disabled
person"
because of being a wheelchair user. However my difficulties as some
with
dyslexia has caused me many times more difficulty than my needs as a
wheelchair user.
My son Chris is diagnosed with AD/HD and AS, both of us have used our
skills
to help support other people within the disability community. Chris has
done many cartoon drawings for "disability now" to gain recognition for
various difficulties. He also very cleverly at the age of 10 did a
drawing
of the East Midlands partnership conference, turning the characters into
sheep with the heading "sheep have rights too". In fact the vice chair
for
scope saw these sketches and ask Chris to produce a coloured pitcher for
scope officers in London. Chris's worked months on this drawing and
presented to the chair at scope's AGM that we both attended in London
about
5 years ago. During the conference and the AGM Chris with great fear
put
his hand up to speak. Everyone speaking was on camera and huge monitor
not
just the giant one behind people on stage but also monitors and each
side of
the conference area. At 10 years old Chris expressed his difficulties
within attending school and how society was causing him so many
difficulties. He also expressed how he felt he could use skills he had
to
support many difficulties that was debated through this conference.
After
this he got the loudest applause and every speaker after this from
delegates
and many speakers on stage referred to issues Chris had raised.
Chris has been unable to fit in with normal schooling or should I say
normal
schooling has been unable to accommodate Chris. Chris has put his heart
into the disability community and in return many are not taking or
understanding the difficulties that Chris has with his AD/HD and AS.
I noticed you have a large infantry on your site about work you have
achieved for "disabled people".
I too if I had time (which would be much easier if I could read and
write)
provide a large infantry of Organisations I've worked on and
organisations I
founded to support the disability community.
The point I'm trying to raise is that there are many different types of
impairments and only the ones with any individual impairment will
understand
the fall implications that within that impairment. As disabled people
we
have different impairments we also have different skills with should
support
each other with those skills we have.
And Chris should get the support he needs for his impairment even though
its
not visible to many. He has certainly given his support to the
disability
community.
Debates like this should not be seen as negative!!!
It simply shows that maybe disability activist have been working so hard
to
campaign for their needs and show their skills! That we have forgotten
that
we are "human" with feelings and academic or not we can all experience
pain!
Maybe this debate has highlighted our feelings and reminded us about our
pains that we experience trying to be a member of society.
Andy
newly rebuilt UK web site;
www.hi2u.org
Hi2u for people with hidden impairments.
Also known as invisible disabilities.
Hi2u now is Browsealoud enabled. This facility will help people with
reading difficulties use the hi2u web site.
----- Original Message -----
From: "Simon Stevens" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, January 22, 2003 10:30 AM
Subject: Re: Something Positive?
> Is this being positive stuff a polite why is trying to ignore the real
> issues and further oppressing those impairment groups who are further
> discriminated by this whole mockery of impairment?
>
> How can I continue to be positive in a world which deny me every right
> going? Where the police ignore abuse? Where disabled people have no
way
> of improving the situation! Now we must be all obey of wimps of hidden
> impairment who seem annoyed that are not recognized as oppressed.
Well,
> I am afraid I can not accept the oppressive experience is absolute and
> it is relevant and therefore there is an hiachertia of disability
where
> frankly, those at the top with minor impairment have no interest to
help
> those at the bottom with severe impairment.
>
> Also, I did not pick up on Larry's insult on my mother. Social skills
or
> not, this is deeply offensive and I suggest he considers his position
in
> disability if he has to insult family members to win his battles.
>
> I think at last, this list is waking up from many years of boredom!
>
> Many Thanks, Simon
>
> --
>
> Simon Stevens
> Managing Director, Enable Enterprises
> [log in to unmask]
>
> ________________End of message______________________
>
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