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Axel asked "their work is always methodologically wanting?" Lets put it in this way, from a critical perspective research, any type, is not objective. The claim of objectivity is even questioned in the 'exact sciences'. Any research will highlight some things and discard and even hide some other things (social phenomena). In that perspective, "nothing about us w/out us" is a claim for voice, and agency, not objectivity. Best, Andy ----- Original Message ----- From: "axel kaehne" <[log in to unmask]> To: <[log in to unmask]> Sent: Tuesday, June 24, 2008 11:35 AM Subject: Re: new book - Representing Autism 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. > >> > >> > > > > ________________End of message________________ > > > > This Disability-Research Discussion list is managed by the Centre for > Disability Studies at the University of Leeds > (www.leeds.ac.uk/disability-studies). > > Enquiries about list administration should be sent to > [log in to unmask] > > > > Archives and tools are located at: > > www.jiscmail.ac.uk/lists/disability-research.html > > You can VIEW, POST, JOIN and LEAVE the list by logging in to this web > page. > > > > The information in this e-mail is confidential to the intended recipient > to > whom it has been addressed > > and may be covered by legal professional privilege and protected by law. > > Reading Borough Council does not accept responsibility for any > unauthorised > amendment made to the contents > > of this e-mail following its dispatch. > > > > Reading Borough Council has scanned for viruses. 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