Advocates and allies

I had originally planned for this post to be an in-depth look at what it means for a non-autistic person to be an advocate or ally for autistic people.  There has been a lot written on the subject over the past couple of months and I was going to use this as a way to sort it all out in my mind.  Luckily (especially for you, since this post is now much shorter), a recent discussion on this blog helped me understand it all in a nutshell.

In a comment to a recent post, CS had the following to say about the vaccine-autism debate:

The vaccine argument is causing a lot of harm I believe because it is taking our limited time we have in the news and monopolizing it with trivalities (sp?) that aren’t important for inclusion, education, opportunity, independence and safety which is what most autistic people struggle with their entire lives.

This came toward the end of a long comment discussion concerning Kristina Chew‘s appearances on Newsweek.com and NBC’s The Today Show last week in which she was asked, as the mother of an autistic son, her opinions about vaccines.  (The media interest was due to the recent release of Autism’s False Prophets.)

In my original concept for this post I had considered using Kristina as an example of a good ally for autistic people, using Phil Schwartz’s list of what makes a good ally as a starting point.  CS disagrees with me, and believes that she is “not being a good ally when she does these things.”  He also uses Phil’s essay as the basis of his opinion.

Read the whole comment discussion for the whole picture, but the gist of CS’s complaint was that Kristina was being self-serving, and not being a good ally for autistics, because she engaged in – and reported on – the interest in the vaccine/autism question instead of reporting on the lack of interest that the mainstream media has for hearing from autistic people about what is important to them.

Here is an excerpt of my response to CS from that comment discussion:

The vaccine argument is causing a lot of harm, but not because those who don’t believe in a link are engaged in the argument. It causes harm because it exists. Those who try to squash the belief in a link between vaccines and autism may not be engaged in the type of activities that directly benefit autistics, but if no one puts down the belief in a link by the general – scientifically illiterate – public then many of those direct actions will likely come to naught.

The non-autistic people, especially parents, who believe in the link are not likely to listen to scientists, non-believing celebrities, or autistics when it comes to arguments against a link. Those with the most chance to sway their opinion are the parents – the non-autistic parents – of autistic children and adults.

What do you think?

And if you are autistic, who among the non-autistic do you see as true advocates, as good allies?  Are there any?  Despite what Phil tries to get across in his essay, is it even possible for a non-autistic to be an “autism advocate” or a good ally?

Update:  As a reference, here are some of the things that have influenced me over the past couple of months.  In some cases it is the post itself, in some cases it is the discussion in the comments:

I’m sure there are more, but these are the ones that stand out in my mind.

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3 thoughts on “Advocates and allies

  1. …What do you think? …

    I think that first and foremost, I am a parent. As such, my primary responsibility and duty is to my children. I will expend as much energy as I can to maximize the chance that they have a good life.

    Inasmuch as I fully appreciate that I will not be with my kids forever, and also realizing that one of my primary wishes for them is to them to be able to live as free from interferences from others as possible, I will also speak in favor of things that I perceive will make their way easier. These include acceptance, non-discrimination in job opportunities, education of potential employers regarding positive aspects of hiring disabled workers, support for alternative residential living arrangements, etc.

    I do believe that autistics speak best for autistics, and I hope that I can assist my son in becoming a good advocate for himself.

    Joe

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  2. I think a lot of it has to do with balance. The pseudoscience and quackery mushrooming in the autism community is one concern, but not the only concern. And it is not the root cause: underneath it ticks the mainspring of the “conventional wisdom” that autism is necessarily a devastating tragedy. Getting the truth out that it needn’t be so, is at least as important as the whack-a-mole response to the quacks and the pseudoscientists that many of us find ourselves spending so much time engaged in.
    Demanding high standards of scientific integrity and ethics in public policymaking about autism is another concern. Demanding access to communication and basic human rights, yet another.
    Winning hearts and minds to all of these concerns, and growing the ranks of those willing to stand with us, yet another.
    There’s plenty to do.
    Balancing among the many things to do, is what I think is needed.

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  3. if she dodged the question, it seems it would have been more fuel for the ‘pharma schill’ fire? by answering the question she may have swayed the parents on the shelf to listen to her. She posts an awful lot about inclusion and autistic rights. I say that saying she is not an ally is taking things too far. I mean, honestly, saying she is not an ally, and analyzing her mostly positive activism based on wording, seems to me counterproductive. She talks an awful lot about inclusion, about autistic rights. I think someone could say she has room for improvement, if they feel that way, but saying she is not an ally I think goes to far, but then, I am simply a parent of a nonverbal autistic child as well.

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