Parents and Self-Advocates: Be All(ies) That You Can Be

When folks I like and whose brains I respect go after each other online, it's like coming home to find my favorite roommate smacking around the person I'm dating. So you can imagine how dismayed I was to to see Ari Ne'eman and Robert Rummel-Hudson at public loggerheads. Especially Robert and Ari. Why?

Two weeks ago, I was at the BlogHer conference in San Diego, speaking on a special needs miniconference panel alongside Robert. His talk was clear-eyed and inspiring -- he pushed everyone in the room to acknowledge that disability rights are civil rights:
I believe the fight for disability rights, particularly in the hearts and souls of our typical fellow citizens, will constitute the next great civil rights movement in this country. And I believe that, with all my heart.
While I was ruminating on Robert's call to action, neurodiversity journalist and author Steve Silberman called to let me know that Ari Ne'eman's keynote speech at Syracuse University's Neurodiversity Symposium (an event about which I'd been whining, since I wanted to go but couldn't be in California and New York at the same time) was truly wonderful, needed to be shared more widely, and did I want a copy of his audio*? Oh yes, I did.

Ari's talk is indeed a must-listen; he spoke eloquently and forcefully about the neurodiversity/autistic self-advocacy movement, stating that:
"...it's essential that we recognize that neurodiversity is an outgrowth of disability rights, and that disability rights is an outgrowth of the civil rights movement."
To be clear: Ari and Robert, on the same day, were both publicly championing disability rights as civil rights, were spreading the word that the "concerns" of the disability community are actually human rights, were demanding not just the attention but the respect of every last person who could hear and spread their messages.

These are men who are primed to be allies. These are men who need to talk to each other.

Because, honestly, there are enough jerks outside our community, holding their paintball guns of self-righteousness aloft, shaking them and yelling at us to shut up about disability rights, getting pissed off when we shame them for verbally disrespecting us or our children, complaining about "all the money" neurodiverse and disabled kids and adults suck from the system. Turning those people around, that should be our battle.

And yes, there are people from our community who should be fighting alongside us, who should be cheering Robert and Ari along, who really, really are not. And while that is a shame and I have no problem calling out people like Jenny McCarthy whose specific actions derail our efforts, my hope is that through firm, vocal, and positive role modeling, such people may come to see the error of their mindsets and stand alongside us.

But then there are -- again -- people like Robert and Ari who are already on parallel paths, with the same or similar goals. Oftentimes what separates them is not ill will or disrespect, it's lack of each other's contexts. As I said at the BlogHer miniconference about my perspective as a parent:
Most of us have not done this before; as parents, most of us came from outside the special needs community. We have to learn everything from scratch. And after eight years of blogging about Leo and his autism, I came to realize I have learned so much from all of you, from Leo, from the professionals, from the adults who have autism -- and I so wish I had known everything I know now at the time Leo was first diagnosed. How amazing would it have been to transplant my current brain into my body in 2003?
We need to recognize the difference between genuine ignorance versus willful ignorance -- you can usually do something about the former, with enough patience and perseverance. When I started out writing about my Leo and his autism in 2003, I had very little context about people with autism; I was genuinely ignorant. I wasn't evil or malicious; I was underinformed -- I just hadn't had any exposure to Autistic self-advocates.

Thankfully the self-advocates I correspond with most frequently -- including Carol and Corina and Lindsey and Rachel and Landon and Val -- are mostly patient with me when I stumble in writing about or otherwise characterizing autism and disability issues. They usually treat me the same way I try to treat my kids -- they take a positive approach, and tell me what they want to see, or ask me if my omissions of perspective or content were intentional -- rather than lambasting me for what I may not yet know or have considered. And they mostly listen to my perspectives and advice, too. (As much as anyone does -- I am tangent-prone.)

I'm not saying everyone in our community has to agree all the time; that would be dull. But I am asking us to treat potential allies with respect, and have some patience with each other -- because we need each other if we're going to catapult Ari's and Robert's civil rights agendas into the mainstream where they belong. As Robert said at BlogHer:
"... for that to happen, all of our little communities of need will have to become a unified group. We must embrace the idea that the rising tide really can lift all our boats. More to the point, the retreating tide can and very probably will leave us all stranded in the mud."


*Excerpts from Ari's keynote will be posted on the Thinking Person's Guide to Autism tomorrow; you can view the webcast at neurodiversitysymposium.wordpress.com/210-2/. Thanks again to Mr. Silberman for his exuberant generosity.


  1. Carrie10:52 AM

    I just wanted to tell you that I've been reading your blog for many, many years. I found it after you called me out for a very ignorant remark on my blog about some book about an autistic child. I can't remember the name of the book, but I do know I totally deserved to be called out.

    I am a parent of two NT kids and would never have learned anything about autism beyond the stereotypes if it wasn't for your comment. I want to thank you for that. Since I don't actually have to deal with autism in my daily life I am still not an expert or anything, but I am so glad I have been following you all these years and am more understanding when I do encounter special needs children in my real life.

  2. Thanks for this & all you're doing. Our son,7, is on the "high func" end of the spectrum, still being "figured out" Is he "Just" Pervasive/Persistent Behavioral Development, or is he Aspergers? That sort of thing.

    Um, sorry - tangential are me.

    Enjoyed this post, what I wonder though, is what exactly were these two going at it about? Or does it matter? Just wondering now.


    Love yer site.


  3. If Ari & Robert (or any self-advocate, which is an irritating term but that's for MY blog, and parent-of-disabled-kid) are going to be allies...


    Parents need to acknowledge that the disability movement isn't about them, but their children. And that by virtue of lived experience, we know what we need more than our parents do.

    /broken record.

  4. Anonymous1:15 PM

    Comments on the post have been closed for obvious reasons, but this started on a post by Zoe at <a href="http://illusionofcompetence.blogspot.com/2011/08/r-word-and-perspective-taking-whose.html>Illusion of Competence</a>. I understand Ari is more high-profile but Zoe is the one who had to deal with parents coming on her blog and telling her that she's "lucky" she can write a blog unlike other people who "can't self-advocate;" Ari was just one of the people defending her.

    And however you feel about the issue of disabled voice/identity, I think condemning any disagreement just for being a disagreement, without even discussing what the disagreement was about, is kind of silly. Some disagreements are worth having.

  5. Amanda I think what Shannon is condemning is people starting from a negative assumption, and the details of someone else's disagreement are not the point here.

    Thank you for this post Shannon, you know I agree that adults on the spectrum and parents of children on the spectrum, and children themselves...all need to work together towards common good; healthcare/health insurance reform, job assistance, assisted living, in home support services, proper educational supports...

    At some point every adult with autism was a child who had parents, who may or may not have done as much as they could have to support their kids, and all of those children with autism will turn into adults, and hopefully those parents want to learn from those who have gone before them.

  6. Thanks for this fantastic post . . . For letting me know about Ari's talk, for summarizing yours and Rob's so well, and for helping us move towards all(iances) we all need. There is nothing more important.

  7. Anonymous3:19 PM

    "Don't start from a negative assumption" is a good point, but if you're going to use real people as an example of what not to do, I think it's reasonable to choose people who actually did that. If the specifics of the disagreement are not the point, then the people who had the disagreement shouldn't be mentioned either.

  8. Hi Shannon,

    This particular internet blow-up did start with a post that I made about a post that Robert Rummel-Hudson made, and I've been really sad about how big and angry the dispute got. I think a lot of the people who were involved wish that it had gone better.

    I agree that parent advocates and self-advocates have some common political interests, but I don't think that's a reason for self-advocates to refrain from ever criticizing anything that parents do. I think that simply instructing both parties to play nice with each other overlooks an imbalance in privilege and power between the two groups.

    As a disabled person, I see parent voices predominating in conversations about disability. Parents are sought out to comment in newspaper articles and celebrated as disability experts, whereas self-advocate voices are largely ignored. So yes, we do have a lot in common -- but when we disagree, this culture will always side with the parents, and I find that really frustrating.

    I’d like to find a way that parents and self-advocates could work to be respectful allies while still keeping this power imbalance in mind.

  9. Zoe! My favorite facebook poke-r?

    I think it's imperative that self-advocates and parents try to develop the trust that will make us comfortable criticizing each other -- thoughtfully, and with best efforts to consider that we're often coming from different contexts and might not have complete information about each other (so I appreciate the link to your post, though I was taking a more macro view). Having everyone play nice was never my goal, as that rarely accomplishes anything. Getting everyone talking through difficult topics? That is remarkable, hard, and can yield amazing results.

    When there is a power imbalance, those in a position of privilege -- whether they've asked for it or not -- have to decide what they're going to do with that privilege. I say we choose to listen, and take action as this dialogue directs.

  10. Good point Amanda...

  11. Sorry, frantic frantic day. My thanks to everyone who is participating in this thread -- with compliments or criticisms.

  12. Thanks so much for your response, Shannon. I'll definitely try to keep this experience in mind and see if I can't find a way for future disagreements to go more smoothly.

  13. Great post, Shannon! I really hate hearing about disagreements among us. Yes, we're not going to agree on every issue. Yes, we going to have different agendas we want to push. But the simple truth is that if we want the NTs to listen to us with respect we have to listen to each other with respect. We don't have to agree, but we have to be respectful of each others thoughts and beliefs. If we can't manage that, then how on earth can we expect outsiders to listen and respect what we have to say?

  14. The people in question are having a pretty public disagreement that is documented, so that makes it worthwhile to use an example. Shannon makes an excellent point that should not--cannot--be lost, and that is, with so much ground for agreement, why focus on the edges of disagreement?

    Good post, Shannon.

  15. Anonymous7:21 PM

    We focus on the "edges of disagreement" because one group wants to turn issues of central importance into peripheral issues and dominate a space that isn't theirs, thus hurting people with disabilities.


  16. Agree with Ari Ne'eman, who tweeted "I believe PFLAG represents an important model of parent allies respecting self-advocate leadership."

    PFLAG mission statement: http://community.pflag.org/page.aspx?pid=237

  17. Michael Polidori10:18 AM

    Helping kids who are disabled is a fine choice. Denying vaccines cause neurological disability is foolish and adds to the number of kids injured by avoiding proper research.

    The FDA and CDC admit autism is rising at epidemic rates. Genes CANNOT cause epidemics, but increasing environmental triggers can. Vax cause brain damage, shots have tripled over 22 years. Merck's MMR package insert has 5 pages of adverse events, warnings etc. Merck claims it's not proved or disproved MMR is the cause, but admits MMR is associated with encephalitis, seizures, arthritis, diabetes and much more.

    In 2008 Dr Bernadine Healy stated in a CBS news interview "Vaccines may cause autism" and "It's inexcusable the proper research has not been done". Dr Healy, Dr Wakefield and his 12 co-authors called for clinical research to investigate their 1998 paper and still do. Jenny McCarthy calls forresearch and "greening vaccines"

    I don't agree with everything Jenny says. I agree with EVERYTHING Drs Healy and Wakefield state. Both honorable people, accomplished physicians, prolific peer reviewed publishers. Both seek to help and protect kids by stopping the damage we cause

    Here is evidence autism is triggered by sensitivity to toxins NOT genes
    April-2011 PMID 21522181 "despite the strong influence of genetic factors, association studies have yet to identify... major effect genes"
    July-2011 PMID 21727249 "Susceptibility to ASD has MODERATE genetic heritability and a SUBSTANTIAL... environmental component"

    Since 1988 we have been making more vax antigens and drugs in gene altered bacteria. The "purified" product is ALWAYS contaminated with toxins and cell debris. Since 1988 we have tripled the number of shots kids get. Since 1988 vax profits and autism have risen. Since 1988 vax makers can't be sued for the damge they cause

    To increase profits drug companies add preservatives and adjuvants. These for-profit-toxins come with side effects, adding to what infants and kids with immature immune systems must deal with. The denial of the connection increases the numbers of kids and families thrown into the hellish world of regressive autism with no help, compensation or insurance.


  18. Michael Polidori10:24 AM

    continuation of comment by Michael Polidori...

    Merck executives and scientists make 13 vaccines and many drugs. In 1996 Vioxx was killing people in clinical trials. Merck's people hid the info and threatened doctors and researchers like Topol and Nissen who warned us. They lied to the FDA for approval and journals, including the New England Journal of Medicine, to publish fraudulent support of their killer drug. When FDA Associate director of Drug Safety, David Graham, warned his superiors of his plan to publish a study about Vioxx deaths he was advised not to and ended up seeking whistleblower protection from the very agency charged with protecting us from bad drugs.

    Merck paid Elsevier to publish a fake journal. They advertised Vioxx while publishing "studies" in the fake journal supporting it. This was one of 22 Elsevier was working on for over 30 drug companies. 9 were published, 13 were in the works, a secret until...

    ...Vioxx litigation subpoenas in Australia revealed this SEVERE breach of ethics in 2007. Elsevier publicly apologized. They stopped work on the 22 journals and promised to never do it again... the promise of a PROVED and knowing deceiver

    Merck killed 45-60,000 Americans and injured up to 120,000 more with Vioxx (according to The Lancet) and payments so far have amounted to over $4 billion. Merck denies wrongdoing. Everyone at Merck who was knowingly involved should be charged with murder.

    these same executives and scientists at Merck make about 13 pediatric vaxs. They put profits ahead of the lives of customers, they killed parents with Vioxx for money, they will kill and injure kids too

    Your denial that vax injure kids when Mercks admits they do helps vax makers profit while more kids are injured. Causing more kids to be disabled has to stop. Making safer vaccines has to start.

    My conflicts? I have a relative with regressive autism, a friend's daughter with Asperger's (which is not autism), a friend who has suffered a stroke from Vioxx

  19. Mr Polidori,

    It is misleading to conflate prescription medications like Vioxx with vaccines, even though they're produced by the same companies.

    Conveniently, the NY Times published the article "Vaccine Cleared Again as Autism Culprit" just today, regarding the report of a new panel of scientists assembled by the Institute of Medicine. Over 1,000 peer-reviewed articles contributed to their findings. It's a must-read. An excerpt.

    "Many children injured by vaccination have an immune or metabolic problem that is simply made apparent by vaccines. “In some metabolically vulnerable children, receiving vaccines may be the largely nonspecific ‘last straw’ that leads these children to reveal their underlying” problems, the report stated."

    "For instance, recent studies have found that many of the children who suffered seizures and lifelong problems after receiving the whole-cell pertussis vaccine, which is no longer used but once routinely caused fevers in children, actually had Dravet syndrome, a severe form of epilepsy. The flood of lawsuits over the effects of the whole-cell pertussis vaccine was the reason Congress created the national vaccine injury compensation program in the first place, and children who suffered seizures after getting this vaccine have been among the most well-compensated."

    "In retrospect, the whole-cell pertussis vaccine may have played little role in the underlying illness in many of these children other than to serve as its first trigger."

  20. Link to the article: http://www.nytimes.com/2011/08/26/health/26vaccine.html?_r=2&smid=tw-nytimeshealth&seid=auto


Respectful disagreement encouraged.