I don't quite understand the phrase 'Nothing about us without us'. I agree
that it is critical to involve people in research who can offer an 'inside'
perspective but thinking it through methodologically, the phrase does not
make sense in a wider context.
If it is used simply to discredit all research that is not involving people
with autism then I would have to disagree. Think about it: if it were a
stringent methodological demand to ALWAYS involve people who have an inside
perspective and epistemologically privilege their perspective over all
others then what would historians do? They write about people who happen to
be have past away... So their work is always methodologically wanting?
To formulate involvement of people with autism as a NECESSARY criterion for
valid research needs methodological justification. To insist upon it as a
DESIRABLE component of good research is quite something else (and something
that I wholeheartedly support).
Axel
On 24/6/08 11:22, "Bryant, Helen" <[log in to unmask]> wrote:
> Maybe you should write one yourself, then? I'm sure you're sick of people just
> thinking "Rain Man" or piano-playing/artistic/mathematical - pick your
> "savant" - geniuses (genii?!) when anyone ever says "autism". The only way to
> change things is to do something. Not everyone is as articulate as you are,
> so they may not think to do it, or even be able.
>
>
>
> You write compellingly, and I'm sure it'd be of interest to a much wider
> community than just us disabled types or "experts".
>
>
>
> I agree with you about "nothing about us without us", and I had the same
> thought about people representing people with my own disability, who don't
> have as much knowledge as someone who actually has the condition. Parents do
> know a lot, and they experience a lot because of their child, but they can
> never know what it's like to be me, hour by hour.
>
>
>
> Helen
>
>
>
> -----Original Message-----
>
> From: Larry Arnold [mailto:[log in to unmask]]
>
> Sent: 23 June 2008 20:25
>
> To: [log in to unmask]
>
> Subject: Re: new book - Representing Autism
>
>
>
>
>
> Don't make excuses you are all as bad as each other, you can justify it how
> you will, but if it were
>
> the other way around you might be agreeing with me. Your ideology and
> disability rights agenda only
>
> seems to go so far. Have you forgotten all about nothing about us without us,
> well it seems you
>
> have, and I am there to remind you.
>
>
>
> For the most part it seems just like it was with physical impairment in the
> past, the parents get to
>
> do all the talking as if that experience is the same, well it is not. That is
> second hand
>
> legitimacy.
>
>
>
> It is like getting up on a platform to speak, and saying I am speaking today,
> because I want to talk
>
> about wheelchair users who can't climb onto this platform, that is what it is.
>
>
>
> You are justifying yourselves out of survival necessity but you are trampling
> on us when you do it,
>
> you are perpetuating mythologies and half truths all the time, you are
> outsiders, lady bountifuls if
>
> you want me to put it that way with a charity mentality more than a rights
> mentality.
>
>
>
> You think you have progressed beyond all that with your high flown discourse
> and thery?
>
>
>
> Well I am telling you that you have not and you need to listen, because you
> are part of the
>
> machinery, who hold onto your priveleged access to the things that are denied
> us, all the more so
>
> because people become accustomed to hearing your supposedly superior, more
> literary, more learned
>
> voices.
>
>
>
> And to anser Mark Priestleys point, I am not being reductio ad absurdist about
> this, I am saying
>
> that at this point in time there is not a sufficient literature out there for
> outsiders to be
>
> "allowed" to comment and write on it, when the genre has matured somewhat, yes
> then you can come in
>
> as a bunch of Tom Shakespeare's with a bit of knock about critique, now is not
> the time however.
>
>
>
> It is again one thing to write about representation, and quite another to be
> the subject of that
>
> representation and the disbeneficiary of it. If you can put this into a
> historical context you will
>
> see what you are all doing.
>
>
>
> Yes I feel strongly about this but let's get one thing clear, I don't have any
> personal animosities
>
> or hates, I am not going to burn anyones books or shun them, I just want you
> all to realise what
>
> this means.
>
>
>
> Larry
>
>
>
>> -----Original Message-----
>
>> From: The Disability-Research Discussion List
>
>> [mailto:[log in to unmask]] On Behalf Of Irene Rose
>
>> Sent: 23 June 2008 16:17
>
>> To: [log in to unmask]
>
>> Subject: Re: new book - Representing Autism
>
>>
>
>> Hello Larry and all,
>
>> I have ordered this book today and would like to say that
>
>> knowing the author's work and the perspective from which he
>
>> writes, I expect that this book aims, like many other texts
>
>> authored by humantities academics not to speak for others but
>
>> to open up access for inclusion to enable to us to listen and
>
>> hear other's voices and persepectives.
>
>> I am an non autistic academic who writes on autistic
>
>> autobiography not to speak for others but to draw attention
>
>> to the fact that others are speaking and that we need to pay
>
>> attention to that. I also write to understand what may
>
>> prevent some people being heard and how we can work to
>
>> mitigate that within academia.
>
>> At the end of the day if humanitites academics want to
>
>> discuss disability and disabiling discourses and
>
>> representations in our classes and invite participation from
>
>> advocate groups and diabled people - we have to write books on it.
>
>> It's how we tackle the system from the inside. It is our form
>
>> of resistance :) Best wishes, Irene.
>
>>
>
>>
>
>
>
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