Who should lead the autism rights movement?

8 Oct

An article up on the Washington Times Communities poses the question: Who should lead the autism rights movement? The article cites an amazing discussion that has been going on at The Thinking Person’s Guide to Autism.

If you ask me, “who should lead the autism rights movement?” the answer is simple. No one. Emphasis on one. As in no one person can or should. We are talking about too diverse a group of people for any one person to lead.

Frankly, I think a leader/follower idea isn’t right anyway. Part of this is my own personal bias. I am always suspicious of people who want to lead. Especially people who are absolutely sure of their positions and never waiver from them. That’s just a recipe for disaster. I shy away from people who don’t understand that just because someone doesn’t want to lead, that doesn’t mean that he/she wants to follow. I run from people who are too enamored with leadership and power.

One comment out of the TPGTA series that has resonated with a number of people came from one of Zoe’s posts: “It goes like this: ‘Some parents just want disabled children to speak and disabled adults to shut up.'”

It pretty well sums up much of the divide, and much of the question of “who should lead”. Autism is a spectrum. There is are divisions between adults and parents, and the degree of challenge the autistic faces. Not all “high functioning” autistics are self-advocates. Not all “low functioning” autistics are not self advocates. (and, yes, I hate those “functioning” terms). We need people to advocate for the rights of all on the spectrum. We need advocates who have experiences relevant to the various parts of the spectrum.

That means we need people, plural, call them leaders if you will, who will represent the self-advocates. We need people who will represent those who, for whatever reason, can’t or don’t self-advocate. Most of all, we need these people to work together. To not only be the allies of autistics, but allies of each other.

There are many things that parents like myself–parents of young children with great challenges–should realize. This, of course, in my own humble opinion. I’ll list only a few.

It is in our children’s own best interest to be allies with self advocates. They not only can teach us things, but the fact is our kids are the minority. Seriously. First, there is a big population of unidentified adults out there. Kids are the minority, even amongst autistics. Even if you have problems accepting that, the “classic” autistic kid is the minority even amongst the autistic children of today. For example, most parents report their autistic kids are getting letter grades. Only 2.4% were reported by parents as “can’t speak”.

A common theme I read is from parents writing, “self-advocates are not as disabled as my kid. They can’t relate.” I really dislike the “more disabled than” idea, but accepting that–we parents aren’t as disabled as our kids either. Self advocates can have an understanding of our kids just as we can. Self advocates may have different priorities than our kids. And that’s where being allies comes into play. We support their priorities, they support those of our kids.

Whatever your goal for your kid, improvement, cure, recovery, education…whatever it is, isn’t “becoming capable of self-advocacy” a laudable goal for any kid, disabled or not?

Being an autistic self-advocate (or an autistic non-self-advocate) doesn’t make someone right, nice, friendly, or likeable. Just like being a parent doesn’t make one right, nice, friendly or likeable. No one is saying you have to accept whatever a self-advocate has to say, just like self-advocates don’t have to accept what parents have to say.

The thing about writing a piece like this is that it is sure to annoy someone. Many someones. As Ari Ne’eman wrote in his piece for TTPGTA: “As far as I’m concerned, if we’re uncomfortable, we’re making progress and we shouldn’t stop.”

Back to the idea of leadership. With the passing of Steve Jobs this week, I’ve heard his address to Stanford Graduates a number of times on the radio. One paragraph keeps standing out in my mind:

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

He didn’t say, “find someone to follow” or “be a leader and find some people to follow you”. He said, “Don’t be trapped by dogma — which is living with the results of other people’s thinking.”

We don’t need a leader. We need leaders. Thousands of them. That’s why it’s a “movement” not a political party.

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13 Responses to “Who should lead the autism rights movement?”

  1. Jackie October 8, 2011 at 07:16 #

    What irritates me is similar to the statement from Zoe’s post, about parents ignoring adults with a form of Autism. I have Hyperacusis, when children cry or scream it triggers my anxiety & fight or flight response. Everytime I read a parent commenting people should understand when their child with Autism meltdowns. I tell them I have Asperger’s Syndrome and Hyperacusis. That almost no one understands when I say sounds cause me pain.I tell them they have every right to advocate for their child, but if things continue the way they’ve been going, once their child becomes an adult, nobody will care that they have Autism. They will have to pretend it doesn’t affect them unless it’s obvious. That parents will say if you can’t handle crying children, you should stay at home. Restaurants will have staff telling you patronizingly that you’re in a family restaurant, when you ask to sit away from children, even if you do inform them of your condition. If parents want to see the world is a safe place for their chikd with Autism, they need to become involved with providing advocacy for adults with Autism. I’m sure it might be easier for parents to not upset themselves with the reality that once their child becomes an adult, they will not be accepted. Yet that is the future their children will face if things don’t change.

  2. stanley seigler October 8, 2011 at 12:05 #

    [LBRB say] I am always suspicious of people who want to lead. Especially people who are absolutely sure of their positions and never waiver from them. That’s just a recipe for disaster…Some parents just want disabled children to speak and disabled adults to shut up.

    COMMENT
    true believers…especially in science…are never to be trusted…and i want my 46 year old daughter…spoiled only child…to speak.

    stanley seigler

  3. farmwifetwo October 8, 2011 at 14:05 #

    I too am always suspicious of people that claim to know more than I. That claim to understand what I am going through, what my child is going through. I have little use for those that stand there and tell me I don’t care about them, that I want them to shut up.

    We should all advocate for what we need.

    But there was also another comment in one of those posts “I have the right to be disabled”. I don’t respect that. Yes, you are disabled but you don’t have the right to be catered to. It is up to you to build the life you want and if necessary with the help of others. You have the right to respect, to opportunity, to care… but to simply be disabled and demand other’s cater to you… and this was in a rant about how dare her parents have tried to help her… That I don’t respect at all and IMO that is the attitude of many self advocates. I’m owed, I’m owed, I’m owed…. the current mantra of the Western society. Well… you aren’t, you aren’t, you aren’t… Neither are my autistic children. They aren’t catered to nor will they be.

  4. Liz Ditz October 8, 2011 at 18:33 #

    Disclosure: co-founder and co-editor of The Thinking Person’s Guide to Autism (TPGA)

    I have a running list, not only of the 10 blog posts at TPGA, but the 34 (to date) responses and reflections at other blogs:

    http://lizditz.typepad.com/i_speak_of_dreams/2011/09/difficult-but-essential-conversations-week-one-roundup.html.

    We had an editorial meeting yesterday, in part debriefing from the dialogues. In addition to the public responses, there were tens of emails to one or the other of the editorial team.

    The many issues brought up during the dialogues will take a long time to process.

  5. Julian Frost October 9, 2011 at 15:11 #

    “I have the right to be disabled”. I don’t respect that. Yes, you are disabled but you don’t have the right to be catered to.

    If by “catered to”, you mean we have the right to demand that society make changes that benefit us, then YES WE DO. We have a right to demand that society acknowledge and accommodate us, just as blind people, paraplegics and quadriplegics have that right. We also, despite what you think, have the right to refuse treatments that would turn us non-autistic. If I was turned non-autistic, I wouldn’t be me any more.

  6. daedalus2u October 9, 2011 at 21:05 #

    An example I bring up for discussion purposes only is that of Deaf Culture.

    If you learn signing as your first language, you are fluent in it as only a native signer can be. People who learn signing as a second language can never be as fluent, as articulate, understand as easily and be as easy to understand as someone who is a native signer.

    When deaf parents have a hearing child, to have that child learn signing as a first language is to have that child be a part of Deaf Culture. To have the child learn spoken language as a first language is to have the child not be a part of Deaf Culture.

    Being a native signer and being a part of Deaf Culture is not a disability. Being hearing and being a part of hearing culture is not a disability. Being a native signer and trying to be a part of hearing culture is a disability. Being a non-signer and trying to be a part of Deaf Culture is a disability.

    At one time, Native American children were taken from their homes and taught English as their first language, to save them the disability of not having English as their first language. This also had the effect of destroying the Native American cultures.

    What is a disability is a matter of perspective. I think that trying to minimize the adverse effects of non-conformity to what is considered “normal” would be a good heuristic to follow.

  7. Stephanie October 10, 2011 at 07:58 #

    Sullivan,

    A journalist, and the media in general, has a reason for wanting a leader. They want someone to go to for a good quote, who can tell their readers “this” is what it’s all about.

    A movement as diverse as the autism movement is going to have many leaders, much like similar movements have had before. In the United States we hold Martin Luther King Jr. up as the leader of the Civil Rights movement, but that’s misleading. He was one leader. He was a successful leader. But there were many other leaders and many other agendas–and there still are.

    So, yeah, you’re right. There’s not going to be one leader; and there shouldn’t be. But there does need to be leaders who can express to the general population what “this” is all about. And it won’t ever be just one thing, but having people to lead is a cultural necessity for the movement to make progress in the mainstream. Some of those leaders will choose to lead, and their followers will choose to follow them. And, yes, those leaders will have their own personal agendas for wanting to lead, which may or may not be sinister.

    Other leaders will lead, naturally, and those who follow them will not follow to follow, but because their insight and their expressions are invaluable.

    All our voices matter, but some voices will try to rise above others and other voices will do so naturally. Whoever those voices are to be, all our voices will become stronger the more common ground we are able to find.

  8. EL October 13, 2011 at 04:23 #

    Enjoyed reading this post – thank you

  9. Nathan Young November 3, 2011 at 08:39 #

    I have autism and am part of the Regional Center where I live. The reason I say Autistic Self-Advocacy Network (ASAN) does not represent my views and those who do not choose to associate is because of their approaches. It’s not because everything they stand for is wrong it’s because they alienate really good ideas with very bad approaches. Using abortion politics to make demands toward tax-payers for services estranges the needs of real people and estranging compassion as pity in protests signs is just wrong. Caring people are called Nazi’s, their intents manipulated as if they meant harm and I just cannot ethically not speak against the propaganda because I think it’s wrong to warp others intention and everyone should be treated fairly.

    ASAN needs to invent into the intentions of others so much to continue it’s PR game and it got them a nomination by a political party and this is not the first time an elected figure has done so. I am so tired of being expected to dumb myself down and go along for the ride as they manipulate what others say and to me it is a moderate amount of time farfetched as if I shouldn’t be expected to think as an independent self-advocate otherwise less I am and others detractors. Everyone deserves respect and when disagreements happen I believe there should be a diverse conversation going on and not just a group who has used abortion politics to force their views representing the self-advocacy community. People in the middle who actually listen to both sides are not often in the media nor are they allowed to speak through the self-advocacy network known as ASAN because the views are dictated and it’s not a true self-advocacy network in the diverse sense.

    Neurodiversity simply denotes a diversity exists. As a concept it does not dictate how each individual of a diversity shall think, believe and choose.

    Sincerely,

    Nathan Young
    Humboldt County, CA
    707-215-9657

  10. Kozmo May 1, 2012 at 02:46 #

    Just figured out at 51 years of age that the majorty of my problems stem from high-fuctioning Autisim & Complex PTSD so I would like to work with either the Autiisitics Rights or Psychiartic Survivors Movements.

  11. Julian Frost May 1, 2012 at 16:38 #

    Kozmo, try to contact the Autistic Self-Advocacy Network (ASAN). They’ll help.

  12. Jerry Louie Martinez October 14, 2012 at 04:53 #

    http://www.youtube.com/watch?v=7XRpSE94bSU Me I want to be a Spokesperson for people with Autism be there Ghandi Martin Luther King Harvey Milk & Charles Xavier from the X men

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