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PLAGUE? [part one]
6 Oct 2003 Collège des Médecins
Sir/Madam: Enclosed find three documents that constitute my complaint against Dr Victor Goldbloom. He is a retired member of the college, but in this context is clearly identified as "M.D.". He is further recognized in the "retrospective" notes for his position at the Regional Health Board, and as a pediatrician. In his welcoming remarks on the website for the conference "Autisme 2003", Dr Goldbloom describes autism, and therefore the existence of autistic people, as a plague. I should point out that this site is translated and the wording is consistent between English and French. Being described as a plague by an eminent doctor can only harm autistic people, who are citizens, who are taxpayers, who contribute greatly to society in spite of facing intolerance and ostracism. We are not a plague. We are people who have a culture: a large published literature, art, music, architecture, design, technology, science, and engineering. Published, peer-reviewed science is available showing that our abilities in many areas exceed those of non-autistics. The world cannot do without autistic genetics, or autistic behaviours. Further, there is no worrying increase in autism: this is not justified by epidemiology. The number of diagnosed cases is increasing, but there is only faint evidence that any of this increase is due to an increase in autism, rather than to increased awareness and greatly broadened (and often misapplied) diagnostic criteria. Finally, there is nothing enigmatic about autism. The real mystery is why we are not seen as human beings with rights. The mystery is why we are seen as a plague, and described that way by an eminent physician. Dr Goldbloom's welcoming statement is in the context of two other statements, one from the health minister, and one from Carmen Lahaie, President of Montreal's autism society (ATEDM). Dr Goldbloom's message gives credibility and force to Ms Lahaie's statement that autism is a plague that must be prevented and cured once and for all; and her further statement that autistic people are incapable of speaking for or defending ourselves and must at all times be spoken about, and spoken for, and represented by people who are not autistic. These are false and prejudicial statements, and Dr Goldbloom by his presence gives these statements his apparent approbation. I can say from experience that many autistics, myself included, have suffered greatly from being vilified, sensationalized, and denigrated. Dr Goldbloom, by calling autism and therefore the existence of people like me a plague, has deliberately used his standing as a doctor to shame, humiliate, and worsen the situation of an identifiable group of people. I just want to add that like most autistics, I am used to being insulted, but I draw the line at "plague". That is a damaging, dangerous word. That is my complaint. Thank you for your time. Sincerely, Michelle Dawson
[part two]
8 Oct 2003 Madam: The Collège des médecins du Québec acknowledges receipt of your letter concerning Dr Victor Goldbloom. Upon reviewing Dr Goldbloom's welcoming remarks for the conference "Autisme 2003", it seems that the French term "fléau" is what causes the problem. When evaluating a statement, it seems fair to put things into perspective. As you point out, the number of diagnosed cases is increasing and to underline the importance of a phenomenon cannot be interpreted as an intention of disparagement of the individual. Underlining that autism should be a health concern does not carry the pejorative meaning that you seem to have given the word "fléau". The Collège des médecins wishes to inform you that there will be no investigation into this matter. Yours truly, Marguerite Dupré,
MD, FRCP(c), CSPQ [part three]
29 Oct 2003 Review
Committee re: Dr Victor C
Goldbloom (47-044) To the members of the review committee: This is my appeal of the decision made by Dr Marguerite Dupré, Syndic adjointe, not to investigate the above complaint. This complaint, while simple, is serious. In her decision, Dr Dupré finds my concerns about Dr Goldbloom's conduct frivolous, and ignores the context and the consequences of his actions. Dr Dupré instructs me to put Dr Goldbloom's statement into perspective, and states her own belief that there is an important phenomenon going on in autism, that is, with autistic people. Her position is that it is not just appropriate, but possibly a good thing, to describe this phenomenon as a plague. Dr Dupré believes also that it is not just appropriate, but possibly a good thing, to underline that autism should be--according to her--a health concern by calling autism, and therefore the existence of autistic people, a plague. While the word "plague" is clearly pejorative, dangerous, and destructive when applied to other identifiable groups of people, Dr Dupré has here decided that autistics are not disparaged by being described as a plague, and nor is the word plague pejorative when it is applied to autistic people. Enclosed find documents in support of my arguments. I tried to find the most concise and representative documents possible. I will refer to them as necessary. I did not expect to have to argue this case, but here, in addition to what I originally submitted, are my arguments: 1. Dr Goldbloom's remark is made in a context, which I outlined in my complaint. I'm enclosing the relevant material in English this time, so I can quote directly. Dr Goldbloom writes: "This worrying rise in the number of children affected by this disorder compels us to ask questions on the causes of this plague and warrants a mobilization to solve the enigma of autism." His is the first of three welcoming messages. In the third message, Carmen Lahaie writes: "It is time to try to understand and then act to cure and prevent this plague once and for all." Also, she writes, "People with PDD will never be able to speak up for themselves, so they wait and suffer. We, parents and professionals, have to do it for them." 2. The further context is the conference itself, which largely promotes what is called the DAN protocol. DAN stands for Defeat Autism Now. Dr Goldbloom is making welcoming statements, along with Ms Lahaie, on both days of the conference. No autistic people are invited to speak at this autism conference, and the schedule is addressed strictly to "Parents and Professionals". In both "Autisme 2003", the conference, and "Autisme 2003", the website, the voices of autistic people who may not see themselves as a plague are not only absent, the existence of such voices is denied. 3. Dr Goldbloom's message lends credibility to Ms Lahaie's: one can hardly object to Ms Lahaie calling autistics a plague when the Collège decides that it is appropriate or even helpful for Dr Goldbloom to do so. Ms Lahaie then has the freedom to go a step farther and propose the eradication of this now officially-established plague. 4. Relevant dictionary definitions of the noun "plague" consistently divide into two entries. One: an epidemic disease that causes high mortality; and two: any widespread affliction, calamity or evil. The only diminished or mild use of the noun "plague" is a flippant one, as in, "uninvited guests are a plague". Dr Goldbloom was clearly not being flippant. 5. The connotations of plague are worse than its definitions. Plagues and plague-carriers are equated with death and destruction. Plagues are public emergencies in which all measures must be taken to eradicate the plague for the well-being of society. 6. We have learned from history what happens to human beings who are called a plague. A notorious German propagandist published a book in 1939 called "The Jewish World Plague". Once a group of people, and their inherent characteristics, are determined to be a plague, we know that appalling abuses ensue. Societies have always allowed great lattitude in their treatment, or mistreatment, of those considered to be or to carry a plague. 7. When recently the Egyptian State Press reported on a church leader's vow to launch a global campaign to root out the "plague" of homosexuality, the protests followed automatically. Earlier this year, a George W. Bush appointee was forced to resign largely due to calling AIDS "the gay plague". The danger of designating an identifiable group of people as even possible causes and carriers of a plague was seriously addressed and action was taken. 8. I've enclosed two short articles by Jim Sinclair, the co-founder and Co-ordinator for Autism Network International. He explains that autistic people don't have autism. We are autistic. When Dr Goldbloom and Ms Lahaie talk about autism, they are talking about people, about us. If, as they both write, autism is a plague, then autistic people are a plague. 9. I've also enclosed a short letter by an autistic woman, Grace Hewson, to The Observer. This view of what autistics "suffer" from is near-universal among autistic people, and would find support also among parents and professionals. 10. I've enclosed a letter by Billie Hoch, whose son is autistic, printed in the most recent issue of the MAAP newsletter. Ms Hoch connects the denigration of autistics with the abuse and the killing of autistics. The two deaths she describes are well-documented; the death-by-exorcism (arranged to end the boy's "suffering") made several Canadian newspapers. The second case of the 15-year old killed in restraints is unusual only in that it was widely reported in the US; most such deaths never come to light. Such deaths have happened in Canada, in Québec. 11. The welcoming messages from the Autisme 2003 conference prove, however, that this attempt to change autism from a mental illness or disability to a physical affliction has not improved the discourse, or the situation, for autistics. Ms Hoch's list of pejoratives includes "epidemic" but she appears to live in a jurisdiction where autistics have not yet become a plague. 12. The idea of "epidemic", or Dr Goldbloom's "worrying rise", or Ms Lahaie's "dramatic increase" is not borne out by the available science. I've enclosed peer-reviewed study abstracts and some popular accounts to put the epidemic in "perspective", as Dr Dupré would say. In my complaint, I allowed the possibility of faint evidence for a small increase in the number of actual cases. I did this because epidemiology cannot totally rule out such a slight increase (or a slight decrease, for that matter). I believe that a fair study of the science will show that Dr Dupré's "phenomenon" is artefactual, cultural, and sensationalist, and has nothing to do with science, medicine, or the ethical practice of medicine. While as Dr Fombonne puts it, the false epidemic has gotten autism a lot of attention, and researchers like himself a lot of grants, he has not had to experience what it is to be an epidemic at first hand. 13. Mr Fitzpatrick's commentary about competing vaccine theories has developed a new twist, with the Safe Minds group, which promotes mercury in vaccines as causing autism, now proposing a re-analysis of recent data to prove that autism rates are plummeting. In countries where mercury was removed from pediatric vaccines many years ago, Safe Minds must prove a sharp decline in autism in order to maintain the validity of mercury-based theories and lawsuits. The MMR-causes-autism faction must maintain the epidemic for their own legal needs. As Mr Fitzpatrick points out, "desperate" parents are easy targets for unethical opportunists. One way to ensure a supply of "desperate" parents is to designate their autistic children a plague. 14. The enclosed article from La Presse describes some of the societal fall-out of declaring an autism epidemic. In the UK, cases of measles and attendant complications are on the rise. In Quebec, the public must now pay to establish whether children are still being vaccinated. The gratuitous declaration of an autism plague by Dr Goldbloom, a physician of impeccable reputation, in the context of what is described as a major autism conference, is clearly irresponsible and unethical. 15. I'm not sure to what extent I have to prove that being called a plague is bad for autistic people. There is academic expertise in the area of how disabled people whose lives are devalued are disproportionately abused and killed by our caregivers. Autistics are disproportionately abused and killed compared to other disabled people. The abuse includes inappropriate and excessive use of medication, particularily of anti-psychotics (now even in young children), as well as incarceration, assault, the use of aversives and restraints, death in restraints, dangerous experimental "treatments", and filicide. 16. Dr Goldbloom is not uniquely responsible to those autistics supposedly "cured" by DAN or other scientifically-suspect protocols. In declaring autism a plague, and condoning this view of autism, he impinges harshly on the lives and rights of all autistics who cannot be or do not wish to be "cured", and on those many of us who exist in society and cannot pass as non-autistic. 17. Dr Goldbloom's reputation gives his words and his actions great weight and importance. When he says autism, meaning the existence of autistics, is a plague, many will believe him and act accordingly. When Dr Goldbloom is seen as condoning statements in which the declared plague is said to require eradication, once and for all, many will follow his example and act accordingly. I know from experience the consequences of Dr Goldbloom's actions and words. I've had to argue in legal proceedings that autistics are not useless and worthless, and that we are human beings with rights. I've learned that a few words from an authority can render useless any legal victory or decision, and negate the basic rights all non-autistics take for granted. Dr Goldbloom's great reputation carries great responsibility. 18. Dr Dupré ignored the parts of my complaint in which I outline some of the strengths and accomplishments of autistics. I point out that there is real science in this area, and that society could not survive in the absence of both autistic genetics and behaviours (without which, as Dr Temple Grandin has said, people would still be standing around in caves chatting). Autistics contribute tremendously to society not in spite of being autistic, but because we are, and we contribute in spite of being plagued--by ignorance, intolerance, discrimination, and ostracism. 19. Finally, I'm enclosing a short comment made by Dr Laurent Mottron about my work. This comment is part of a long open letter to a federal cabinet minister, now also posted on the internet, which collected more than 90 international endorsements within a week. Dr Mottron's comment is important in that it shows that change is both necessary and possible. 20. My own wish is that this complaint will be accorded the seriousness it requires, and that the review committee, and the Collège, will not promote and perpetuate Dr Goldbloom's damaging and dangerous view of autism and autistic people. I believe the Collège, and the review committee, must consider the consequences of officially deciding that autism, and the existence of autistic people, is a plague and should be so designated. I'm asking the review committee and the Collège to carefully look at all the issues involved, and to consider the impact of their own power on the rudimentary rights and dignity of all autistic persons. Thank you. Sincerely, Michelle
Dawson [part four]
DECISION OF THE REVIEW COMMITTEE SESSION OF January 16, 2004 File: Michelle Dawson - Dr Victor C. Goldbloom (47-044) ped. The review committee has reviewed the evidence compiled by the Office of the Syndic pertaining to Doctor Victor C. Goldbloom. The review committee has decided that there is no cause to lodge a complaint with the committee on discipline. Sincerely, Guy Brisson, PhD
(Public representative) [notes, sources,
references] [part one]
For Dr Philippe Couillard, Minister of Health and Social Services I am researching and writing about autism, ethics, research, and the law. I wish accurately to represent your, your ministry's, and your government's position. I also am a diagnosed autistic.[part three] General note: the list below refers only to what was submitted with the complaint. Submissions were as minimal and as varied (reviews, editorials, studies, etc) as possible. 1. note: enclosed were all the pages, in English, available on the Autisme 2003 website, URL as above. 8. sources: the articles by Jim Sinclair are "Don't Mourn For Us" (1993) at http://web.syr.edu/%7Ejisincla/dontmourn.htm , and "Why I dislike 'person first' language" (1999) at http://web.syr.edu/%7Ejisincla/person_first.htm . 9. source: Grace Hewson's May 20, 2001 letter is at http://observer.guardian.co.uk/letters/story/0,6903,493505,00.html ; this is the entire text: "People with autistic spectrum disorders are not victims of autism, (News, last week), they are victims of society. They do not suffer from their developmental differences, they suffer from prejudice, ignorance, lack of understanding, exploitation, verbal abuse - all this and more from that sector of society which considers itself socially able.” 10. source: Billie Hoch's letter appeared in the Volume III, 2003, issue of the MAAP newsletter. After describing the two deaths, Ms Hoch states, "These types of things will continue to happen so long as words such as 'disordered, devastating, epidemic, and tragic’ are used in conjunction with autism.” Later in the letter, she makes suggestions, including: "Using time, talent, and financial resources to lobby the NIH to declassify autism as mental health, and reclassify it as a neurobiological condition is another step.” 12. references:
13. source: for Safe Mind's position, "Expanded reporting" in Vaccine Weekly (2003) Oct 29, p 13. Autism; Autism rates drop in Denmark after removal of thimerosal from vaccines. For Mr Fitzpatrick's views, reference:
19. source: for
Dr Mottron's comment, click here
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