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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Thursday, September 20, 2007

 

Do Disability Organizations Presume Competence?

I have quoted Kathy Snow from Disability is Natural before and value her point of view. I highly recommend that everyone read her recent paper Do Disability Organizations Presume Competence?

The answer is no. Not autism ones, especially. When acceptance is entwined with ideas of recovery, when autism organizations want to recover, prevent, cure and praise autistic children only for typical responses, it is neither acceptance nor a presumption of competence.

"The service system (early intervention, special education, adult services, vocational-rehabilitation, therapies and interventions, etc.) seems to be built on the presumption that people with disabilities are incompetent," she says. "The result? Two unequal class of people ("providers" and "consumers")....the newsletters of organizations often tell the tale. A headline screams, 'Join the End the Waiting List campaign.' Advocates are exhorted to attend the rally...yes we need to effect systems change. But is ensuring government assistance our highest hope for people with disabilities? Doesn't this reflect an underlying PRESUMPTION OF INCOMPETENCE?

Wouldn't greater outcomes be generated if an organization rallied its troops (and its board members)to spend their time and energy helping individuals with disabilities find real work for real pay?"

8 Comments:

Blogger Another Autism Mom said...

Estee, I'm not sure if I understood the point of your post, but I think that both types of advocacy are necessary, since autism is a spectrum, and some families will need help and assistance to care for an individual 24/7 who will never achieve independence, while others will be fighting for inclusion in college and in the workplace.

The fact that autism is so diverse on its presentation, and that there are autistics of all age groups, makes it a little harder for all of us to be on the same page and advocating for similar issues at all times. I'd rather see the autism organizations co-exist peacefully, each one doing the best on its own niche, than bashing and invalidating the work of one another.

6:18 PM  
Blogger Autism Reality NB said...

Heaven forbid that parents should seek recovery for their children. Many parents, including the good folks with the Ontario Autism Coalition, are doing just that.

It is unfortunate that you, because of your own personal beliefs and circumstances, feel the need to create such gross and inaccurate caricatures of the beliefs and values of other parents.

5:08 AM  
Blogger Estee Klar-Wolfond said...

Another Autism Mom said "The fact that autism is so diverse on its presentation, and that there are autistics of all age groups, makes it a little harder for all of us to be on the same page and advocating for similar issues at all times. I'd rather see the autism organizations co-exist peacefully, each one doing the best on its own niche, than bashing and invalidating the work of one another."

We had our TAAProject board meeting last night and most of our board members (we are shuffling right now board roles) are autistic. We were talking about what a gift, actually, the diversity is within the autism community -- that we have a range of individuals and we can learn and understand more about autism because of everyone's unique characteristics, abilities, as well as challenges.

The idea of recovery is rather philosophical, perhaps, and maybe a bit difficult for people to understand. Teaching/helping autisitc individuals to be the best they can be AS AUTISTIC INDIVIDUALS, is not recovery. Recovery of a person's disability (as opposed to an illness like cancer), suggests that a person is not valued as an autistic person -- a person who has their own potential. I don't think anyone would argue that we all want to have our children valued by society. And that value need not be associated with "becoming normal."

Autism Reality (Harold) -- There are numerous references here and elsewhere that suggest this is not my "opinion" nor "circumstance" (which you cannot comment on the latter since you do not know me or Adam, personally). Our board consists of autistic members, many of who really struggled in their lives as autistic people -- mostly because they were forced to be something they could never be and weren't appreciated as autistic people. They are struggling for acceptance as they are and a greater understanding of autism. Our 560 members are also working towards the same goal. Parents want to see more options in support services and educational opportunities. Every autistic person is unique, and we really do need options which reflect that. No one is taking away a family's need for support.

Ideally, we exist peacefully -- with respect and dignity always in mind. Please refer to the Down Syndrome Society of Canada and its Executive Director, Krista Flint, for an example of excellent advocacy work that does not offend the very community she seeks to support.

Teaching and helping need to be married with the community we are seeking to "help." We still have lots of work to do in this regard, if we are to be a truly equal and inclusive society. No one is suggesting that there is not a variance of needs out there. Perhaps it is in the delivery of those needs, how we think about people, which reflects then how we treat them and which will determine their future opportunities as autistic people.

7:36 AM  
Blogger farmwifetwo said...

And there's a reason I advoid "groups". I guess that means I need to be CURED??? Autism reality NB - Since I have been told by my son's dev ped that I probably have mild aspergers. Like that shocks me - NOT!!!! But it does explain the engineering degree, that Math is simple, and the OCD. Married, 2 kids, decent standard of living, over-educated... what's wrong with me???

I am pro-education. Pro-learning and learning to live independantly - independantly can be with or without outside support. I just watched my ASD (NVLD) son do AMAZING at the dentist today. Why should he be cured?? What is normal?? My little one talks more and more daily. The eldest I expect will be independant, the little one... we'll see. If not he'll go on the waitlists at 18 for a group home or other suggestions for him to live independantly.

So no, people don't need to be cured. They need to be educated and accepted and parents need to cease to be embarassed by their children. Why is there 3 therapies, Miller, RDI and Lovaas all started at the same time?? Yet Lovaas is the one of choice. IMO simple, parents are embarassed and to quote Miller "if it looks like a duck and quacks like a duck, it must be a duck" but that doesn't mean that the person is "cured" or "educated".

Keep going Estee... maybe one day people will no longer fear what they don't understand and try to change it. Instead reach out and educate and take pride in other people's accomplishments.

S.

9:54 AM  
Blogger Autism Reality NB said...

farmwifetwo I am happy that you have mild aspergers. Congratulations on your derees and your great math skills.

You have nothing in common with people with Autism Disorder living in institutional care, some of whom have almost no communication skills.

You have nothing in common with my son who his DIAGNOSED with Autism Disorder and is ASSESSED as profoundly developmentally delayed. Whey do you insist on comparing yourself to my son and others like him?

So YES some people should be cured of their autism disorder not there not their belief that they might have mild Aspergers.

1:17 PM  
Blogger Estee Klar-Wolfond said...

Everyone is so angry here, you can tell by the speed of typing for the spelling errors.

I don't think people need to be pointed fingers at. People with Aspergers are entitled to the same understanding and supports as autistic people. Autistic people can be more intelligent than Asperger's people. Asperger's people may be more verbose, but an autistic person may have more to say. One person's "profound" is another person's joy and gift maybe even "ease." At the end of the day, everyone has their own experiences and lens. However, there is no compromise for acceptance of all autistic persons, their value, and the advantages we garner from those who can share their experiences. This is the awesome gift we have with the "spectrum" of autism.

Again, it comes down to choice. One person may not cope as well as the next, or one person's lens may be different, because we all have different upbringings and circumstances -- yes, that may play a part.

We all have to acknowledge that there are different needs out there and WE MUST HAVE CHOICE. We must have educational choice, not just have kids segregated into ABA programs if it does not suit their learning needs. People know our personal experiencs with ABA, and yes, I absolutely do not agree with the method that this was advoated for at the devaluing of autistic people.

There is a piece of the picture that gets missed when we engage like this. It is not helping. Not every autistic person MAY benefit from an ABA program (there is no concrete proof of this as the reason for an autistic child's progress other than the autistic child can learn as an autistic person) and some autistic people are more profoundly effected by their disability and need additional supports. We are also really missing the mark in Canada by not discussing autism across the lifespan, and autistic seniors for that matter.

What we need is to accept autism, not fight it in this manner. What's worth fighting for is for our children to be accepted as autistic people and their right to be included in society -- the are entitled to a quality of life as they are. We fight for this because we still value all autistic people and want them to achieve their fullest potential that is unique to them. This is not a cure, or a recovery. It is a compromise. It is society doing its part to understand and be sensitive, our part as parents to accept and nurture our children's learning style, and a quest to teach our children what they need to learn within that paradigm.

3:11 PM  
Anonymous farmwifetwo said...

Autism in NB.

The little one's dx reads "Severe non-verbal PDD". And it still applies.

But I and his teachers are ignoring the label and teaching the child with slow, but steady success.

One day he may be in a group home... so what?? As long as he's happy, cared for and takes some pleasure out of life... then so be it.

S.

10:35 AM  
Anonymous The Hawkeye Ranch Center for Autism said...

After reading this blog, I have a simple question. How does a non-profit for adults with autism get the word out that there are very few transitional services for adults, without the overtone of disability? As an organization we believe in the ABILITY of "disability"

We are currently building a center that can cover many of the bases when it comes to adult autism care, from 24/7 site care to life-skills instruction. The idea of choice is important to our center, so that an individual with autism can choose the services needed. This is an important step towards lessening those long wait lists.

The general population does not know about the service needs of adults with autism- the focus of most large autism non-profits is on children and research.

The general public needs to know about adult issues as well. We want to get the word out without the stigma. Because we are starting from ground zero in terms of public awareness, we are in a unique position to do it right.

I pose to this blog, what is the right way?

11:05 PM  

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