|
hello Colin
Before I reply I should also mention how frustrating it is not to be able to
click the reply button and said e-mail directly to disability discussion
group! Really confusing perhaps this could be rectified some when.
First I'm not trying in any shape all form to be negative in any way towards
you all Larry although I accept I see some things in a different dimension.
Generally I do feel discrimination by some people with physical impairments
towards my hidden difficulties like "dyslexia" and I also feel
discrimination from some people with hidden difficulties towards my
"physical impairments". This makes voicing some issues very difficult.
I am very frustrated with many established organisations run by people who I
feel have "King of the Castle syndrome" I know you know many of these people
too. I have this vision that there are lots of groups trying to cut grass
ready for a "football match" only they won't be ready on time! Because they
are all using a pair of scissors to cut the grass with! They won't work
together and pool resources perhaps too purchase a lawn mower because they
will then have to decide who drives the lawn mower or who is going to be
King of the Castle. I don't think I need to explain any more about the
vision. There are so many groups all in the power struggle to ensure there
group is number one and I personally think this is preventing young people
(children) getting appropriate recognition and support for their schooling
needs that may be different to others. Much of what you described earlier
shouldn't have been difficulties in the same proportion if society had
appropriate flexibility and support through your life. Hope I'm making
sense.
I don't personally see any difficulty with "NeuroDiversity" To make
reference towards a section of the community. However I'm not convinced
that this name will necessarily be accepted throughout society for people
that it may be representing. And this is what I find very difficult to
explain. I worry about establishing recognition from all members of society
and personally think that something like "hidden impairments" would fit in
with present day framework. However I'm not hooked on that and I don't
necessarily see that as the ideal for the future. In time to come I may
well drop hidden impairments from the main of the hi2u web site. I am
certainly not an advocate for name AD/HD (attention deficit hyperactivity
disorder) its almost like the name is underlining that children diagnosed
with this are "naughty children" rather than having a medical difference.
Neither do I like the idea of a medical condition being main after the first
scientist who discovered the condition. If a condition is going to be named
after a person why not the first person who was diagnosed with this. But
that's the medical profession like others!
However if you want to get people with AD/HD together to discuss this
difficulty you probably have to publicise that you are needing to get in
touch with those who have AD/HD. I also believe while labels exist its
important to ensure that name has a positive image even if its not the ideal
name. I think its much easier to tell people I have dyslexia rather than
telling people I can't read or write.
In many cases children are not getting there needs recognised at school
because AD/HD and dyslexia issues are not taken on board seriously enough.
While a school can easily recognise a wheelchair user needs certain
adaptations and support to participate on equal terms. Children with AD/HD
and dyslexia are expelled from school for being naughty however you know and
I know that isn't the case! Because of their medical difference they are
unable to fit in with the framework and procedures that a school have.
There is a difference! Therefore I think its important that we have a name
for our medical condition and its properly recognised. AD/HD is a real
medical condition it may not have the appropriate label and maybe that needs
changing. However in the meantime I have AD/HD and I'm proud of having that
difference although I accept I would prefer a different name for this label.
AD/HD dyslexia and many other neurological differences are hidden and
therefore not getting appropriate recognition and support needed by society
to create equal opportunities for all. Moving forward is going to be very
complex not only trying to get appropriate recognition throughout society!
But finding ways of working together to establish this recognition. Our
very nature of the different neurological conditions can cause difficulties
working together it is so easy to see something within our own viewing angle
it often lacking skills to accept other peoples views.
I know Colin that we would have different views on many issues however if we
got together determined to find common ground I'm sure we would achieve
this! However when you multiplied that among all the different views within
the world of people with neurological differences the task well become very
much more difficult. And this is the point I'm trying to make their are
lots of groups already out there battling 2 be King of the Castle! Many
with first hand experience! I believe "working together" is going to be the
biggest hurdle!
With reference to conference "AD/HD lilac" this was certainly placed on this
discussion group and the dyslexia discussion group along with many forums
and message boards throughout the UK. Larry had visited the hi2u web site
and made a nice comment about the hi2u site on the dyspraxia group forum if
I remember correctly. I did write a lengthy e-mail to Larry I can only
assume this can't have reached him! There some messages circulating on the
dyslexia discussion group. I didn't have your e-mail address than so wasn't
able to contact you directly. Unfortunately about 4 weeks before the event
Lincoln University cancelled with some excuse about major maintenance work
that would put delegates at risk! Another story I won't go into now! the
web site for this conference is at www.adhd-lilac.co.uk it is still up and
running but hasn't been updated. There was an open invitation for anyone to
put ideas forward for a workshop or too participate with this one of
conference!
Anyway to add insult to injury after university cancelled a national charity
offered to facilitate this conference on our behalf! Yet the main concept
was too be independent and not owned by any one charity although there
support would have been appreciated.
Well I must go apologise if I've made mistakes using voice recognition
software sometimes I can't get words I want and have to re-word the whole
sentence often not with the meaning I'm trying to voice!
If either you or Larry wish to provide details about group meetings more
than happy to place on hi2u web site.
Oh Yes, "nearly forgot" your reference to drugs is your opinion that you
are entitled to but not to force on others. Both myself and my son use
Ritalin medication I wish it was available when I was a child. Ritalin
provides the with better support both for my AD/HD and Muscular Dystrophy
than any other medication I have ever used. While there is some side
effects nowhere near as bad as drugs I've been given for pain I get with
Muscular Dystrophy.
I think your voicing here is very prejudiced and wrong. I do not believe
Ritalin is a perfect solution and I'm sure there are many it won't work for
however it provides myself with much support and that's from first hand
experience.
So as one issue we disagree on however I'm sure we could find some format of
debating this issue without preventing "Woking together" on other issues we
don't disagree on.
Andy
www.hi2u.org
hi2u 4 people with hidden impairments
----- Original Message -----
From: "ColRevs" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, January 19, 2003 4:19 PM
Subject: Re: An open-debate on NeuroDiversity ! No Labels,
Andy
Thanks for your e-mail. I will only briefly pick up on a couple of points
you raise, until I collect my thoughts and reflect on your e-mail further...
Here I go with my brief points... You state...
"Surely we should get together first before deciding what the name should be
used to identify ourselves by. And this should not be chosen by a hand full
of people who got together"....my reply, but Andy... This is what a group
of psychiatrists did when they came up with the DSM for a psychiatric
condition called AD(H)D, without no-medical proof that this was caused by an
impairment to the brain and had an organic basis.
AD(H)D label in children and adults has been justified to abuse many
individuals with psychiatric drugs(Ritalin and others) and the
multi-national drug companies are taken advantage of this and making massive
profits. There are many side-effects to these drugs in which neurodiverse
individuals experience daily and they have no justification to use these
drugs. To me this is abuse.
I'm not taken away your or your sons experience of having an impairment, in
which causes you pain and suffering and I myself have experienced living
with concentration and attention difficulties and also been labelled AD(H)D,
Dyspraxia and AS and other SpLd's. My impairment are real and like you and
your soon WE have all experienced discrimination and abuse.
'"You also stated that Larry and I had not been in touch about running
workshops"... Andy, my rely.... I was not aware that you where doing
workshops and Larry and I where not invited by yourself.
Andy you stated... "This discussion worries me for many reasons and worries
me even more to try and add my voice without being miss understood"... my
reply... Andy, I can empathise with you on this and I also share your fears
and concerns and this causes me great anxiety in a world where people have
no-time to listen and respect others views, in which may not be the dominant
ideologies and discourse, but all individuals should be given this 'equality
of opportunity' to express their opinions freely without fear of reprisal
and threats, if individuals have differing views and personal experiences.
I'm a big-believer in 'lifestories' as a process of enabling people to feel
empowered and listened-too.
Regards
Colin Revell
----- Original Message -----
From: "big-hi2u" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, January 19, 2003 3:10 PM
Subject: Re: An open-debate on NeuroDiversity ! No Labels,
hello all
This discussion worries me for many reasons and worries me even more to try
and add my voice without being miss understood. Resulting causing damaged
between people who need to work together in order to create equal
opportunities for all members of society to be a "full participating member
of society".
Well I mustn't feel intimidated so I cannot express my views. So I'll have
a go.
First I will express my interest.
I have very severe dyslexia (diagnosed), AD/HD (diagnosed) AS (undiagnosed)
and CMT type of Muscular Dystrophy (diagnosed). I also have a son with
AD/HD (diagnosed) and AS (diagnosed). So I believe I'm well qualified to
express my views.
Is my dyslexia an impairment? Well my CMT is and I'm a wheelchair user my
hands are badly affected that courses many independent living difficulties.
My dyslexia is very severe unable to write a shopping list without voice
recognition software or help from someone else.
Under the social model of disability we look at discrimination we receive
because of our medical condition. I receive many times more discrimination
for my "dyslexia" than I do for my physical impairment.
The local supermarket is well designed for my wheelchair needs however quite
the opposite for my dyslexic needs. So I believe that dyslexia is a true
disability when its as severe as mine.
In that my physical impairment helps me with my dyslexia! When I need
petrol for my car I panic not because of the difficulties filling my car up
with petrol either by myself or getting help but just the sheer worry that I
wouldn't be able to read the instructions. As I'm a wheelchair user I ask
someone to ask the filling station to provide me with help.
Larry is very right in voicing that these medical differences are very
genuine and very real and can cause huge difficulties participating within
society on equal terms.
I personally don't think it would be appropriate to use the "NeuroDiversity"
as the heading for people needing support who have these differences at this
time. That isn't because I don't believe this is an appropriate name its
because I don't believe it will give clear recognition by other members of
society to make appropriate adaptations to provide equity for us in need of
recognition and changes.
When choosing a name or heading its not only got to be suitable for those
its representing but it also needs in a language which is can be easily
identified by the whole of society.
That is why I use the term "hidden impairments" so that it can fit easily
within the "social model of disability" and can be identified by society to
make appropriate changes to ensure equality.
However maybe tomorrow the name I have been using will be redundant and its
not write for myself or anyone else to dictate what name our differences
should be. Surely we should get together first before deciding what the
name should be used to identify ourselves by. And this should not be chosen
by a hand full of people who got together. It should find opportunities to
ensure all members of society who have neurological differences. This is
why I tried very hard to organise the "AD/HD lilac" conference to get people
together to debate through workshops that what can be published and used
from a one of event. I didn't receive any e-mail or other correspondents
from either Larry or Colin with reference to attending or running a workshop
at this event which I personally felt very sad about.
Sometimes the voicing around autistic organisations and dyslexia
organisations within debates within this forum one thing has been missing.
The AD/HD groups! The country is full of AD/HD groups hundreds I think!
Yes they are nearly all set up by "parents" with reference to needs of their
children. Yet many if not the majority of these parents probably have
undiagnosed AD/HD them selves. This is very much shown within the "King of
the Castle syndrome" that displays among many of these groups. They would
like to be the number one group and there is so much competitiveness and
fighting between groups that this prevents energy problem co-ordinated to
establish universal voicing for services required.
I wonder what the AD/HD groups would make off "NeuroDiversity" would they
take this on board? Yet they have probably got first hand experience of
this difference. Personally I think the difficulties is that the very
nature of many of these neurological differences is we tend to want things
our own way and this means that we end up with "King of Castle syndrome"
rather than establishing voicing that is representing all.
Much of Colin mentioned I could identify with and have recognised from many
others who have expressed their difficulties to myself. I can also identify
with very many issues Larry has voiced and often think my brain is very
similar to Larry's.
However I think conditions like dyslexia are "hidden" because of its
negative label from the past. And I think we need to establish a better
recognition for dyslexia as a positive image. At school one can be bullied
badly if you can't read and write in that the teasing can become so painful
that people with dyslexia soon learn many ways of hiding there condition. I
have done this to. It is so difficult when you meet people and you have to
inform them that you can't read or write. I think the "NeuroDiversity" may
also be continuing to hide the real difficulties.
Well I'm sorry my brain is completely gone now need to collect my thoughts
together. So I will try and continue this again some when else but Finnish
I saying.
I'm dyslexic and this causes me much discrimination and pain from society.
However I'm proud of my skills that I do have and feel that I have much to
contribute to society. I don't hide the fact that I'm a wheelchair user
however I don't wish to hide this. When I hide the fact that I'm dyslexic I
feel bad about this because at the end of the day I feel proud of my
dyslexia because of the achievements it has given me.
I built the "hi2u 4 people with hidden impairments" web site to try and
provide a tool that can voice difficulties along with providing information
that may support people with hidden impairments find ways of moving forward.
I am not designing a site to dictate the future I'm just trying to
contribute my skills to society and have made it very clear at I would
welcome articles or views from other members of society my only request on
this is that its family friendly and would not cause any danger to kids
visiting.
And I keep asking myself am I also trying to be "King of the Castle" too!
In fact I'm so worried about how can I identify the difference between
making a genuine contribution to society or is this trying to be "King of
the Castle" that I nearly gave up completely with the hi2u site last year.
Yet I believe this is the most popular site in its category outside the USA.
When I first started this started this site I called it "Andy's space for
madness" and just did this for a joke? Then I got so much e-mail I realised
that I wasn't the only "mad one out there"! It started to reshaped into an
award winning contribution to society.
After saying all this I am not trying to suggest that "NeuroDiversity" is a
heading not to be used far from I wish the group or groups, (not sure if
Larry and Colin are working together or separately) every success all
voicing is needed. At the same time I'm unconvinced as to weather I wish to
see " NeuroDiversity" as a national or international heading for my
differences at this particular time! Maybe been time to come I will think
differently.
Andy
www.hi2u.org
hi2u 4 people with hidden impairments
----- Original Message -----
From: "Simon Stevens" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, January 19, 2003 12:48 PM
Subject: Re: An open-debate on NeuroDiversity ! No Labels,
Dear all,
I have attempted to understand with neurodiversity with little success.
It sounds like a self-defined impairment which people who want their
social problems to be excused and medicalised to reduce their
responsility.
I have cerebral palsy and is as real as a glass of wing, and no matter
of socialist imagination will stop of fact I have an real impacted. I
accept many new impairments are just made up so non-disabled people make
an mockery of disability and impairment. I am happy and proud of my
labels!
I wish people would stop pretending to have impairments that doesn't
exist since I feel it is making a mockery of disabled people. Has the
social model been scraps in preference to an stronger medical model?
I personally not letting my life be put on the life because other people
want to take the pissed and demand cures for make believe.
Many Thanks, Simon
--
Simon Stevens
Managing Director, Enable Enterprises
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-----Original Message-----
From: The Disability-Research Discussion List
[mailto:[log in to unmask]] On Behalf Of Mariab
Sent: 19 January 2003 12:35
To: [log in to unmask]
Subject: Re: An open-debate on NeuroDiversity ! No Labels,
Hi Charmine;
There is a group of people (some on this list who advocate this idea) a
great paper by Shelley Tremain, makes that point as well. In practical
terms however, within the constraints of the society that we live in I
don't see how this would work. I sure wish it did.
Maria
----- Original Message -----
From: "Charmaine Driver" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, January 18, 2003 1:15 AM
Subject: Re: An open-debate on NeuroDiversity !
> Hi Colin et al
>
> I am most interested to read you views and perspectives on the
challenges
> and difficulties faced by neurodiverse people within many areas of
society.
>
> I have been thinking for a while now that all disability categories -
be
> they the historical ones or the more recently voiced labels such as
> neurodiverse (or for that matter neuro-typical) are in and of
themselves
> disabling. I am interested to know what you think of the idea of
getting
rid
> of any language or label that refers to some sort of category of
disability.
> Instead I feel there is at least some value in replacing these sort of
> 'disability-specific labels' with language that refers to peoples'
> functioning and strengths and ways to maximise people's choice,
presence
at
> places they want to be, access to places and activities and services
they
> see as useful, participation in programs, work, lifestyle and life in
ways
> that seem good to them, and opportunities to achieve as well as they
can.
>
> This might seem simplistic but my work and experiences seem to be
leading
me
> to a position away from 'disability' and 'labels' and towards a
position
of
> inclusion and welcoming all people within society so that everyone can
> really enjoy quality of life - whatever that is for each one as an
> individual. I realise that in some parts of the world this would
constitute
> a huge social change agenda.
>
> All of that said, I also think that in the school room and workplace,
as
> well as society in general, there is a huge need for strategies and
> opportunities for teachers, community members and bureaucrats who make
and
> steer policy, to improve their understanding of the way that various
people
> see the world, process experience and react / act in various
situations.
> Inclusion is great ... but I am not at all convinced that inclusion
can be
> achieved through a one-size-fits-all methodology - for schools,
workplaces
> or society. For everyone to really belong, I think that different ones
might
> well need different opportunities, experiences and perhaps a range of
mentor
> s and coaches such as many people use already.
>
> I am really keen to hear what people think about these ideas ...
especially
> as they might be constructed within re-conceptualisation of education
> systems to achieve inclusive frameworks and maximised educational and
life
> outcomes for school students.
>
> Charmaine Driver.
>
>
> ----- Original Message -----
> From: "ColRevs" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Saturday, January 18, 2003 5:07 AM
> Subject: An open-debate on NeuroDiversity !
>
>
> > Hi, My name is Colin Revell, Hull, England.
> >
> > I'm the founder of Hull and East Yorkshire NeuroDiversity Action an
> educational socio-political, socio-psycho/medical 'users' human and
civil
> rights group.
> >
> > The group is about challenging Social Exclusion through a process of
> re-learning and re-education. It's around challenging dominant
ideologies
> and discourses and out-dated views, prejudices and stereotypes within
the
> media and society.
> >
> > This group is new and also the understanding of NeuroDiversity is a
term
> that is not well recognised and accepted within society. There are
> psycho-socio-political reasons for this and also the imbalance of
power
> within society with dominant discourses and ideologies, especially in
the
> medical model and psychiatry and psychology.
> >
> > I need to open up the debate on a working definition of what
> neuro-diversity means to others ? Who do we define as neuro-diverse?
> >
> > I'm aware at present that individuals with Autistic Spectrum
> Disorders(Aspergers Syndrome), Dyspraxia(Developmental Co-ordination
> Disorder), Attention Deficit (Hyperactivity) Disorder(AD(H)D,
Attention
> Deficit Disorder(ADD) ( not everyone with concentration and attention
> problems have 'Hyperactivity', especially as this wax and wanes at the
> beginning of Adolescence, and for some individuals in adulthood it
> disappears altogether, but not for all adults), Dyslexia, Irlen
Syndrome,
> Central Auditory Processing Disorder, Semantic Pragmatic Disorder and
other
> Specific Learning Difficulties(SpLd's), Chronic Fatigue Syndrome(M.E),
> People who hear voices, Bi-polar(Manic) Depression.
> >
> > As you can see all these are medical terms, except People who hear
voices.
> >
> > I'm in the opinion that individuals have the right to
self-determined
> labels, which challenges the dominant discourses and ideologies, in
which
> creates negative stereotypes and stigma. These medical labels have a
> detrimental effect on an individuals self-esteem and their needs to be
a
> challenge within NeuroDiversityAction, in deconstruction of these
negative
> labels into individual positive identities.
> >
> > As I said I want to open-up the debate around NeuroDiversity and
would
> welcome your views, ideas and opinion around how I and others can take
> NeuroDiversity forward within the 21st Century, in the globalised
world,
at
> Local, National and International levels.
> >
> > I would welcome your thoughts on whom should be included and defined
as
> NeuroDiverse ?
> >
> > Who do we include as NeuroDiverse and then who do we exclude ?
> >
> > As many of you may beware that within NeuroDiversity cultures their
is a
> term called NeuroTypicals( this is the term used by NeuroDiverse
individuals
> for individuals whom are not-NeuroDiverse). There are many disabled
people
> who are NeuroTypical, so these individuals can't be included.
> >
> > Many NeuroDiverse individuals are excluded within society and have
> difficulties with personal and sexual relationships. They also have
the
need
> to discuss sexuality issues. but have no-one to turn to, due to their
> isolation and the statutory health and social services not meeting
their
> needs.
> >
> > What do others know about a U.K charity called SPOD ?
> >
> > This organisation campaigns for a better understanding of the
sexuality
> and sexual needs of disabled people.
> >
> > I had a conversation early last year with someone from SPOD and I
was
> informed that many of their queries are from men who are neuro-diverse
with
> Aspergers Syndrome. Their queries are mostly around the use
prostitutes
and
> escorts.
> >
> > This person and I discussed the need for sexual surrogates, in which
is
> happening some disabled people in London and other areas of the U.K.
The
use
> of sexual surrogates are commonly used across many parts of Europe by
the
> health and social services and sex is accepted as a basic human need
for
> disabled people.
> >
> > What are people's views on sexual surrogates for NeuroDiverse
individuals
> ?
> >
> > Is NeuroDiversity an impairment? Do you believe that NeuroDiverse
> individuals should be categorised as a disabled person ?
> >
> > How does NeuroDiversity fit-in with the social model of disability ?
> >
> > So, this is why I need your support an open-debate ?
> >
> > NeuroDiverse individuals have the same basic human needs as all
human
> beings, but as I said they are excluded, why ?
> >
> > What are the environmental barriers and threats to NeuroDiverse
> individuals. Chemical and food/drink allergies and Intolerances ?
> NeuroDiversity individuals are more at threat by environmental toxins,
due
> to their genetic-sensitivities.
> >
> > This is a basic human rights issue due to the damaging effects of
these
> toxins of neurodiverse individuals physical body and mind, in which
impacts
> on their mental health.
> >
> > NeuroDiverse individuals may have great difficulties metabolising
these
> toxins from their bodies and this impacts on their minds.
> >
> > They need access to detox and should have the right to be prescribed
> alternative medicines, drugs, treatments and therapies. It had been
well
> researched that neurodiverse individuals have adverse side-effects to
many
> prescribed drugs, especially psychiatric drugs, in some cases have
been
> fatalistic.
> >
> > What are the learning, structural, social, cultural, attitudinal
barriers
> ?
> >
> > How can NeuroDiverse individuals be more socially,cultural and
> economically included ?
> >
> > Are NeuroDiverse individuals the genetic underclass of the 21st
Century
?
> >
> > What are people's fears around genetic engineering and cloning ?
Does
this
> mean that NeuroDiversity will be eradicated from the genepool and
society
in
> the future ?
> >
> > Any more questions would be welcome in this open-debate!
> >
> > Larry Arnold, If you can express your personal experience and views
this
> would be welcomed.
> >
> > Larry or any other person with a interest in this subject can you
please
> send a copy of this e-mails to other relevant forums on the internet
who
you
> believe should be included in this debate.
> >
> > People can also e-mail me privately and confidential with their
> constructive views, idea's and opinions. I will not accept any
abusive
> e-mails, so don't waste your time if you are not prepared to give
> constructive criticism. My e-mail address is:-
[log in to unmask]
> >
> > If any neuro-diverse individuals want to join NeuroDivergent Action
then
> the is a yahoo support group/forum at:-
> > [log in to unmask] . This is a support
group/forum
only
> for neurodiverse individuals and you need to go through the moderators
to
> join.
> >
> > I hope to hear from you all and your interesting constructive views.
> >
> > Regards
> >
> > Colin Revell
> >
> >
> >
> >
> > ________________End of message______________________
> >
> > Archives and tools for the Disability-Research Discussion List
> > are now located at:
> >
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> >
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>
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