Michael Moore, Grandma & Me · 2005-08-01 20:02

Last September, I learned about Michael Moore’s new project, Sicko, focusing on the healthcare industry, insurance companies, HMOs, the FDA, and drug companies. I wrote to him then, welcoming him to visit my new website:

I have just learned about your new project, Sicko, and your plans to address issues related to mental health care provision. Autistic people are often misunderstood to be mentally ill when they in fact are differently brained (a wonderful phrase coined by Jane Meyerding in an autobiographical essay, Thoughts on Finding Myself Differently Brained). They are often ill-served by the mental health care system, and many end up doing time in psychiatric institutions. Autism is frequently demonized in the media and inaccurately characterized as a mental illness or “epidemic” when in fact it is an enduring and valuable though often challenging aspect of the human condition. Stereotypes of instability and incapacity that undermine the dignity of autistic citizens are all too easy to come by. With the thought that you may encounter a few autistic citizens on your new filmmaking venture, I welcome you to visit http://www.neurodiversity.com, where you will find links to many writings by autistic citizens (including some that discuss the experience of institutionalization), as well as to other materials on autism, some offering evidence of such stereotypes, and others providing a needed alternative to them.

I didn’t hear back from him, but wasn’t surprised; in the past few years, he has become a famous man, and is incredibly busy, making films, writing books, blogging, and otherwise functioning as a provocative public figure.

Frances Doyen Deibert Petersen EberlyMichael Moore and I have what you might call a distant relationship—my grandmother appeared in Roger & Me. If you’ve seen the movie, you’ll remember her as the elderly lady at the Scrabble convention in Flint who complained that her seven-letter word, “partier” (as in, one who parties), was disallowed because it didn’t appear in the official Scrabble dictionary.

Grandma died on Tax Day 2000 in St. Johns, Michigan, the town where she lived much of her life. During calling hours at the funeral home, a stranger arrived and introduced himself to my mother. He was a national Scrabble champion, come to pay his respects. He had enjoyed many good games with Grandma; she played to win and wasn’t intimidated by his reputation. He told us that the next edition of the Scrabble dictionary would contain the word “partier” because of Grandma and Roger & Me.

Michael MooreAfter Grandma’s funeral, I wrote to Michael to tell him the story. I was thrilled to receive a reply. He shared his memories of her—how she immediately understood what he was doing with his film, how she shared his concern for the survival of Flint, what a good sport she was, and how she made him and his crew laugh so hard during the shoot that they had to stop filming until everyone recovered.

In early June, after I’d written my letter to David Kirby, I thought of Michael Moore and Sicko again. I forwarded him a copy of that letter, saying:

The letter outlines many of my concerns about the potential impact on autistic citizens of the ongoing campaign by a subset of parents of autistic children, aimed at convincing the world that all instances of autism are a consequence of thimerosal poisoning. They may be correct in their conclusions that their own children have suffered neurological damage as a consequence of a vaccine reaction, but they step way over the line when they start to make inaccurate and demeaning assumptions and generalizations about my family members. The majority of parents of children with autistic spectrum diagnoses have no reason to suspect that their children are “toxic.” Not all parents appreciate the assertions of strangers that those who are not convinced that autism=poisoning, and those who do not pursue biomedical “interventions” for our children on the autistic spectrum, are somehow “in denial,” negligent, suckers for a Big Pharma line. Furthermore, although there is no question about the need to develop safer vaccines, one should also consider the implications of disseminating the inaccurate and demeaning idea that all autistic citizens are “contaminated” and in need of purification.

I didn’t receive a response to this letter, either; again, he is a busy man.

I’ve just given it another shot. Here’s the letter that I sent to him this afternoon.

From: Kathleen Seidel
To: mike@michaelmoore.com
Sent: Monday, August 01, 2005 4:08 PM
Subject: Autistic Citizens Are Not All “Poisoned”!

Dear Michael,

I’m writing to make another attempt to talk with you about autism, and hope that this time, three will be the charm. I have written you two previous emails, one sent last September, the other about seven weeks ago.

I am the mother of two teenagers, one with an autistic spectrum diagnosis, and understand that you’ve been approached by a number of parents involved in a campaign to convince the public that autism is a consequence of thimerosal poisoning. Considering the focus of your current filmmaking project, I would expect that their claims might attract your interest. I am therefore writing in order to make sure that you are aware that the perspective of the anti-thimerosal crusaders is not the only parental perspective on the subject of autism. I, for one, strongly disagree with the conclusion that many involved in this campaign have reached about the cause of autism and that they are aggressively broadcasting to the world as if it were “The Awful Truth.” There has been a veritable flood of media coverage these days by journalists who uncritically accept parents’ assertions that government agencies, doctors and pharmaceutical companies are to blame for the fact that one or more of their children turned out to be autistic.

If you consider the cause of the anti-thimerosal crusaders, I urge you to also consider three basic principles:

§   Parents respond in many different ways to a family member’s disability, to chronic health problems, to stress, and to the unfolding of their autistic children’s development.

§   People who are themselves disabled often have a very different perspective on their own disability than parents of children with the same disability.

§   The maxim “Nothing about us without us” is no less applicable to autism advocacy than it is to advocacy for the needs of people with any other disability.

If you consider the cause of the anti-thimerosal crusaders, I hope that you will also consider the perspective of parents like me, who do not attribute to contamination their autistic family member’s atypical development and cognitive characteristics. There are many more of us than one might think if one’s exposure to the subject is limited to information provided by the “mercury moms and dads.” Upon receiving a diagnosis in the family, many of us look in the mirror, and up and down the family tree, eventually recognizing what numerous scientific studies and literature reviews have documented: that autistic traits run in families, and that autistic traits have persisted throughout human history. Indeed, autism is not a “thing”; rather, “autistic” is a kind of people. Although undoubtedly some people have suffered from vaccine reactions (and this includes both autistic and neurologically typical children and adults), there is little evidence to support the simplistic and potentially stigma-perpetuating assertion that all people on the autistic spectrum are autistic because they have been poisoned.

I also hope that you will seek out and consider the opinions of autistic adults about the autism=poisoning crusade. (Try Autism Diva for one ASD adult’s well-informed and witty take on the subject.) In order to bolster their claims that there is an “autism epidemic”—that is, a catastrophic rise in numbers of autistic people, rather than a rise in the numbers of diagnoses—anti-thimerosal crusaders insist upon the non-existence of any significant number of adults whose developmental trajectory followed the pattern now defined as autism. In fact, due to increased public awareness, many adults have come to recognize their own autistic characteristics. This discovery process has led to greater self-understanding for many individuals who have faced extraordinary and often bewildering difficulties in their lives, as well as for those with whom they are in relationship. This trend cannot be adequately tracked via mental health statistics, since adults are under no obligation to submit to professional scrutiny unless they see some benefit in doing so. Obtaining a diagnosis may actually be detrimental for those who anticipate harassment or discrimination should they be ignorantly identified as someone with a “psychiatric problem.” For many, self-recognition is enough. The current increase in diagnosis is largely attributable to the identification of children who used to slip under the radar—those who, in the past, struggled along as best they could, eventually making a way in the world, albeit against significant odds. To deny the existence of adults in this category of humanity is myopic and inhumane. The only reason for doing so is to exclude autistic adults from meaningful participation in public discourse about autism, to allow a small faction of parents to monopolize that discourse by neutralizing dissenting opinions, and to bolster those parents’ product liability claims.

When my grandmother, Frances (Petersen) Eberly, died five years ago, one of the things my relatives and I reminisced about was her participation in Roger & Me. It seemed ironic that she had appeared in a film made by someone who eventually emerged as such a visible liberal rabble-rouser, since Grandma was a lifelong, active member of the Republican Party who liked to brag about the time she kissed Donald Rumsfeld at a political gathering when he was Secretary of Defense under fellow Michigander President Gerald R. Ford. We laughed and wondered, “do you think she ever noticed what an outspoken liberal Michael Moore turned out to be?” Now, I often think about the irony of my own current situation. Never in my life would this lifelong liberal ever have imagined that I might look askance at the claims of citizens who accuse government agencies and pharmaceutical companies of wrongdoing. In so many instances, it is entirely reasonable to be suspicious of both! But in the case of thimerosal and autism, the situation is not at all black-and-white, and justice does not necessarily reside in the underdog corner. I would not be so concerned if parents would stick to proving that their own children have been harmed by vaccines; unfortunately, vaccine reactions happen. A reaction might very well affect immune or gastrointestinal function and cause a lot of stress to an autistic child, resulting in more behavioral, cognitive and sensory problems than if he or she were healthy. However, I cannot abide the inaccurate generalizations that many anti-thimerosal crusaders make about all autistic people, and hope that you will think twice rather than accept such generalizations without question.

I dispute the anti-thimerosal crusaders’ “Awful Truth,” and I’m a mom, too. I welcome you to visit my new blog, where you’ll find a growing collection of essays, many of them discussing the controversy over thimerosal. I’d love an opportunity to communicate with you at greater length about this.

In the meantime, may you live long and prosper!

Sincerely,

Kathleen Seidel
neurodiversity.com | honoring the variety of human wiring
http://www.neurodiversity.com

Comments


  1. In addition to Kathleen’s points Mr Moore (should you pay a visit and find this post) I’d like to add that Kathleen is far from alone as a parent who doesn’t follow the autism/mercury hypothesis. A lot of us are growing very concerned about the growing politicisation of autism.

    I’d also like you to know that as a UK citizien, its worth remembering that autism is a worldwide phenomenom and that studies conducted on autism in the US don’t necessarily reflect autism in that international context. — Kev    2005-08-01 21:56    #

  2. Thanks, Kathleen, another excellent letter, and I really hope Mr. Moore reads it and also visits your blog and neurodiversity.com. Mr. Moore, you can get a real education about autism by reading the pages and links provided by Kathleen, our good friend and advocate for the autistic community. — Clay    2005-08-02 00:56    #