Tuesday, January 02, 2007

How human rights disappear

Last November, New Scientist published a short article called Ear implant success sparks culture war. This is from the opening paragraph:

A spate of new studies has shown that profoundly deaf babies who receive cochlear implants in their first year of life develop language and speech skills remarkably close to those of hearing children. Many of the children even learn to sing passably well and function almost flawlessly in the hearing world.

This is regardless that, as the New Scientist points out eventually,

Even the most technically advanced implant provides the brain with only an extremely coarse approximation of the signal provided by a healthy ear.

These findings are important, because surgical implantation in the second or third years of life, as was more usually done, has not been so successful:

Until recently there was no good evidence that implants routinely improved children's chances of developing normal speech and language, raising fears that those fitted with implants would be stuck in a no-man's land - part of neither the hearing world nor the deaf one.

Earlier this year, through a landmark legal decision, sign language became a de facto official language in Canada. But in the New Scientist article, "normal" language is defined as excluding sign language, which is like excluding any other language (e.g., French, Cree) from being "normal" language. The article goes on to say:

That concern may be put to rest by the new studies. In one, presented last week at the Bionic Ear Institute in Melbourne, Australia, a team led by Richard Dowell at the University of Melbourne showed that 11 profoundly deaf children who received cochlear implants before the age of 1 had entirely normal language development at least up to age 4 to 5. Language skills were assessed using a battery of tests, including routine tests of comprehension and expression and observing at what age they started different types of babbling and using key words.

Their language development was also superior to a further 36 children who had been implanted at age 1 or 2, suggesting that the earlier the implant is fitted the better. "The kids still don't have normal hearing, but they have normal language. They can have a conversation, make a joke, lie, tease - all those normal things that 4 or 5-year-olds do," says team member Shani Dettman.


Again, "normal" language is defined as excluding sign language. Then there is the implication that native signing deaf children can't have conversations, make jokes, etc. Only children who have "normal" language (meaning, not sign language) can do these things. The New Scientist goes on to quote a researcher, Ann Geers, who was involved in another study reporting the effectiveness of very early implantation:

Geers agrees deaf culture may be under threat, but says "there is no hostility here. People are doing this so that deaf people can live in the hearing world, marry who they like, and work where they like, and so that hearing parents can have their children as part of their culture. But it must seem like genocide to the deaf."

Now deaf people who remain deaf are not only considered to lack "normal" language, their basic human rights have vanished. They can no longer marry who they like or work where they like. That is, they lack some of the very basic human rights that benefit and protect non-deaf people and which non-deaf people can take for granted. "Hostility" is beside the point.

Setting aside arguments about culture, this is a demonstration of how human rights disappear. A group of people has their essential human differences pathologized. Their basic human qualities are then denied--because their differences have become unacceptable. A treatment is then promoted that promises to eradicate their pathology and make them normal, or at least make them appear to be as normal as possible. When a human difference is classified as a pathology and then declared treatable, those having this difference--in this case, deaf people--no longer have rights as themselves.

This is how the human rights of homosexuals would have disappeared if Ivar Lovaas' NIH-funded Feminine Boy Project had not been challenged as to its ethics--versus its effectiveness--by behaviour analysts and others (some information about the UCLA FBP is here and here).

According to Canada's autism advocates, criticizing ABA programs is reprehensible. But if no one had criticized the apparently "effective" FBP, the world would look very different right now. As I've written elsewhere, we would not have recently had a political debate resulting in the acceptance of same-sex marriage in Canada. We would instead have desperate parents using the Canadian Charter of Rights and Freedoms--our highest law--to demand that governments fund "medically necessary" Lovaas homosexuality treatment. We would have all our national political parties, including our federal government, supporting "homosexuality advocates" in their demands for a "National Homosexuality Strategy" with an emphasis on surveillance, early diagnosis and treatment of this treatable--provided treatment starts early enough, and is sufficiently intensive--pathology.

(You can find an excellent discussion about cochlear implants and the rights of deaf people in this Canadian Medical Association Journal article.)

31 comments:

Bonnie Ventura said...

Cochlear implants sometimes don't work at all. My husband is deaf in one ear, and he had unsuccessful implant surgery several times. The surgeon finally gave up trying because there was too much scar tissue.

Parents should not be misled into believing that the surgery is always easy and effective, and they certainly shouldn't be told that deafness will make their child unable to marry who they like or work where they like.

Ms. Clark said...

I don't understand, the discussion of putting implants into a baby's head is always framed as "there's no downside"... even if the kid would get really good hearing out if (seems like they don't) how many baby's might die from the surgery? 1 in 1,000? Less? Would it be worth the risk?

I know couples where one is hearing and one is deaf and uses sign language... the spouse signs, too. No big deal, doesn't seem to be a big deal anyway.

Ms. Clark said...

"even if the kid would get really good hearing out if"

I meant, "even if the kid would get really good hearing out of it..."

Michelle Dawson said...

A 2004 New Scientist article called "Falling on Deaf Ears" (it doesn't seem to be available online right now) reports that about 65,000 people around the world have received cochlear implants. From the article:

"Worldwide there have been 91 known cases of meningitis in people with implants, including 17 deaths."

Anonymous said...

The article in question makes incorrect statements generalizations. This is NOT the first time it has been shown that cochlear implants work in children. Had the author Ms. Novak, bothered to research a bit, even looking at the articles cited by the authors of the study, she would have found hundreds that show how successful they have been.

As a parent who has witnessed first-hand the miracle of cochlear implants, I am sorry that there is so much misinformation out there in the world. My child was 4 when he got his first implant (he got one in his other ear too a few years later.) He hears down to a whisper, goes to a regular school, and hears so well he does not need to read lips. And his speech sounds even better than even some hearing kids his age. I am only sorry that this sort of misinformation like you are propogating caused my and my spouse to wait to get an implant for our child. Although he is caught up to hearing peers in speech and language now, he would have caught up sooner. Thank goodness we didn't wait another year or two or it may have been too late. Thank goodness he won't ask me some day why I turned my back on something so wonderful. It is misinformation like that propogated by the posts here that harms.

It IS a big deal when you can't communicate with 99% of those living in your country, in your neighborhood, even in your extended family! Deafness is a big deal that cuts one off from the world! Having served as interpreter for my child before he could speak for himself, I could see how isolating it was, even for a toddler, and how much more so it would become.

Surgery was scary for me as a parent but was easy for my child. He felt completely back to normal within 24 hours. His surgeries were both on Fridays and by the following Mondays he was back at school.

You do no service with your scare tactics. Cochlear implants are nothing short of miraculous. Some fifty thousand children worldwide are able to enjoy life thanks to this technology, and love and choose their hearing over silence every day! Given the choice, they want to hear all waking hours. (There are over 100,000 CI users worldwide, about half of whom are children.)

By NOT chosing an implant, one closes doors. Waiting until the child is old enough to decide is not letting them choose. You make the choice for them by waiting: if you wait too long, the results will be minimal. By choosing an implant for a child early in life, many more doors stay open and far more communication, employment and friendship opportunities are available. How can you deny a person -- not just any person but your own child -- choice in who to communicate with and how?

Michelle Dawson said...

Hi anonymous,

There are also peer-reviewed papers which show the difficulties experienced by children with cochlear implants versus native signing children (e.g., those who are raised by deaf parents).

I don't see that providing facts as well as the views of deaf people, including those who have been implanted (see the CMAJ article), is "scare tactics". I don't see the views of deaf people (including those who have been implanted) as non-valid or worthless.

If you were born female at the time I was, doors were automatically closed. Women were not allowed to do many kinds of work at the time I was born. Women were not allowed to sign for loans, to run in marathons, etc. And if women who found a place in the workplace or academe got pregnant, they were fired. The possibilities for all women were extremely limited. Women who lived independently were considered to be freakish anomalies.

It was so much better to be male, at the time when I was born. Fortunately, this has changed. But it would not have changed if we had continued to think that being male was just naturally superior to being female, and that females had fewer opportunities (those closed doors) because we were female, rather than because we lived in a society that devalued females and considered our lives less valid than male lives and inferior.

Our society has frequently deemed certain kinds (races, genders, orientations, abilities) of people as sick and/or inferior, and deemed the lives of these kinds of people to be less valid and to have less worth because of their differences, and of course deemed these defective, inferior people to not merit the rights and standards which protect and benefit everyone else.

The parents who had their young children treated with an early ABA/IBI at UCLA in order to prevent any form of non-heterosexual development had the same kinds of rationales as the ones you list.

They "knew" that their children would be doomed--doomed to isolation, gross dysfunction, and self-mutilation. These prejudicial views were also stated by the FBP researchers. As I posted, fortunately, these prejudicial views were opposed.

You claim that deaf people, because they are deaf, have limited lives that are less valid and have less worth than the lives of non-deaf people. You claim that only cochlear implanted children can communicate and be successful and have choices. This is what I was writing about.

Anonymous said...

I do not claim signing deaf people's lives are less valid, less happy, or that they are less well-educated, etc. etc. etc. I am positive my son would have been happy as well as successful without an implant. But there is little question signing deaf people have less independence. Communication with most of society, if you can't hear or speak, is hampered significantly. Deaf people who rely on sign need interpreters, can't use a regular phone, and are far more dependent on others for assistance than those who hear well and speak clearly. I have several adult friends, both prelingually deaf and late-deafened who use regular cell phones even, thanks to cochlear implants. These friends are happy, have lots of friends, and have great careers. They are fully independent.

Of course I have seen articles that show limited benefit from cochlear implants, but when were those written? Just as you say the opportunities for women have changed over the years, so has the situation for a child born deaf today. The cochlear implants of today have great sound quality, and it has also become clear that the younger a child receives one (or two), the better the results. (That was the point of the article mentioned in the original post.) A tremendous amount of progress has been made in the 20 years since cochlear implants became available. It's simply not valid to compare results on a seven-year-old child getting an implant in the late 1980s vs an infant getting an implant of today. Just because something may not have been such a good idea 2 decades ago doesn't mean the same is true today.

How are negative, fearful (and misinformed) statements about implants scare tactics? Saying "Your child will not like the implant. He will stop using it. Don't do it, it is cultural genocide." Those are scare tactics. Here is one from the other side, then. Had I not chosen an implant, having my child come to me as a young adult and say, "There was a technology available when I was little that could have let me hear and learn to speak well. Why didn't you at least try it?" that would be even more heartbreaking, because by the time he was a young adult it would be too late to get much benefit from an implant if he never heard.

You may be interested in viewing "Sound and Fury: Six Years Later" This tells the story of a signing deaf family who was anti-implant but came around to accepting implants for their children (and themselves.) I think those like you, who are so vehemently opposed to cochlear implants, are becoming a smaller and smaller minority.

And comparing deafness to homosexuality makes little sense to me. This is not about social acceptance. Deafness is the lack of one of the most important senses, and not being able to hear or speak limits communication with a large fraction of the world. For the most part, humans use sound to communicate, to tell stories as well as to warn of dangers. Giving someone the gift of hearing -- which they can do with whatever they like -- is choice that yields more choices, not fewer.

Michelle Dawson said...

Hi Anonymous,

I would call saying that if a person is deaf, they cannot joke, have a conversation, marry who they like, work where they like, have real language, etc., "scare tactics".

Otherwise, I don't see the "scare tactics" in my post. It was one of the researchers who used the word "genocide".

You've affirmed again what I posted, by describing our society as one that does not include deaf people--not unless they get cochlear implants.

Also, you again judge the lives of deaf people as being impoverished. Autistic people are very familiar with this kind of assumption.

Re the further assumption about who is independent of what, see Ballastexistenz re the staggering costs of the chair and dark impaired here. This includes a link which might shed light on your assumptions about basic human senses.

Autism fundamentally involves measurably atypical perception, in both auditory and visual modalities, a neurological configuration which autistics are constantly told is wrong, impoverished, inferior, and a huge drain on society.

Homosexuals were assumed to be missing a fundamental human trait--heterosexuality. And their lives were therefore assumed to be deviant, isolated, dysfuntional, miserable, impoverished, and wrong. Again, it was fortunate that these prejudicial views were opposed.

Similarly, women and the lives of women were considered to be inferior and impoverished, and women were considered to be totally dependent on men. In Canada, women were not even considered to be persons until the 1920s. Because I'm female, I was banned until 1980 from doing the job I later did for 15 years.

I'm always amazed when it's assumed that only one configuration of human being is the good one, and that societies should be built for only this one correct, ideal configuration--whether this ideal is expressed in terms of race, orientation, gender, or ability.

I hope we've gotten over considering that the ideal is to be straight, white, and male. But there is still, as Catherine Frazee has pointed out, this colossal failure of imagination when it comes to the lives of disabled people. This is what you've shown again, Anonymous. You are saying, who on earth would want to be like them when they could be like me? Autistics hear this a lot too.

Lucas McCarty said...

And will Anonymous be gracing us with a name? Anonymous has our names. 'Mutual reciprocity' is a term I've been thinking about a lot lately and it means I keep seeing it everywhere where I ignored it before. It seems to obvious now.

I've been in more contact with Deaf people than I have with those who speak French as a first-langauge and wonder why there wasn't a sign class at school.

Could it be because even though most people know someone who is Deaf, sometimes with a cochlear implant that didn't work as intended and they can never remove(so must contend with a life time of white noise which Andy McNab tells us is one of the worst parts of the SAS trial, where applicants are bombarded with sensory tortures) and others who were Deaf before having a cochlear implant, there is a bias towards making sure there are less Deaf people rather than accomidating them? Of course the number of people opposed to those means of 'fixing' disabled people is always growing smaller, because the number of different groups of disabled people disappear as they are no longer allowed to exist the way they are. To qualify for human rights they MUST be fixed somehow and made non-disabled. Funny how when you actively persue the non-existence of Deaf people, the number of Deaf people and friends that are there to object seems to shrink. Please extend that logic to any other historically disadvantaged group: blacks, gays, women, Christians, Jews, etc. Homosexuality is being mentioned because it was the most recent and obvious example of a socially-defined inferiority where a person was considered broken and need of fixing that has rapidly been turned around.

Depency is one oft-used issue in which to frame an arguement about reducing the number of disabled people instead of accomidating. It's also freakishly utilitarian. You say there is 'no question' about Deaf people having less independence, yet instead of first considering how they can be given independence as Deaf people you instead insist that only being non-Deaf can do it. Michelle is right when she says this is something which Autistic people hear all the time about ourselves.

Yes, humans do communicate, tell stories and warn of danger. But it is certainly not correct to say this was always predominately done with sound and therefore is normal. First, being Deaf does not stop a Deaf person doing any of those, even if it's with a non-Deaf person. Second, have you not heard that Deaf people drive? There are some people who use words like yours that don't believe Deaf people should be allowed to drive. Driving is dangerous, yet Deaf people manage it and noticeable to me are not charged higher insurance premiums for being Deaf. Noticed how the horn on a car is not the primary means of communicating with other drivers? Those who think it is tend to get stopped by police wanting to know why they are excessively pushing the horn.

Deaf people know they can't hear. But it's incredible how people act as if Deaf people don't know that, maybe because they think Deaf people don't know what actual hearing is and so can't understand it like a non-Deaf person does. Maybe if they actually thought for a moment that the Deaf are not automatically stupid and so are able to anticipate what they can not do.

Humans have been doing that since they evolved: anticipating what they can not do. We're now surrounded by the results of that. Had humans back then decided that it would be better instead of anticipating what they couldn't do, to instead keep trying to do it until they can, could have died out. If there is one thing that can gaurantee to make a person stupid, it's not anticipating what they are incapable of. Non-disabled people often have absolutely no idea of what they're incapable of, prefering to draw attention to what disabled people are incapable of and the abled person often doesn't notice things that they too can't do.

If they did, they'd realise that they themselves are nowhere near as independent as they think and rely on society and systems to provide them with everything. That's why people know their food comes from farms but still take it entirely for granted that they are getting it at a supermarket. But still they have to inflate the dependency of disabled people, even though themselves they are incapable of a great deal and make no attempt to fix themselves so they are more capable, instead prefering to rely on society and the many systems using their expensive resources to keep them sustain.

Most abled people do not grow, catch and kill their own food, an increasing number can't even cook properly. They do not build their own houses that they live in. They didn't design and make the any of the things inside their house and nor do they provide themselves with the utilities such as water, gas and electricity. They didn't buy the cars they drive or mine the fuel for those cars, they don't even maintain those cars themselves.

All the things that people need and quite a lot that they merely desire are not provided for by themselves individually. But instead there are people that provide it for them, who in turn have the things provided that they can't provide for themselves. There are very few survivalists who insist on being fully independent in advanced western societies and fewer still that actually achieve it. Almost everyone is a depedent, yet only a certain group of people who are not applied any label have traditionally been provided with what they need even those these things are expensive, they use massive resources and work.

So if the average person is 95% dependent on others, how come the disabled who occupy the 96-100% bracket have to be singled out?

GFriend said...

I'm a linguist who studied a bit of ASL and can tell you that sign languages (as signed by various deaf communities around the world) are full human languages, with all the same aspects as spoken languages (they have syntactic rules, a modal equivalent to phonology, etc.). In fact, once you start to look at them from the POV of linguistics, they share much more with spoken languages than they deviate from them. It's simply that the modality is different.

Sad to see that Deaf culture is under attack b/c Deaf people have a really tight community and take care of each other more than hearing people bother to do, at least from what I have seen.

Anonymous said...

Let's put the effectiveness of the coclear implant aside for now. If the implant or some other method were 100% effective in allowing the deaf to hear with absolutely no downside, would you all still be against it?

Michelle Dawson said...

Hi Anonymous,

I don't think speculative questions of the kind you pose are very useful. But if you want an answer, ask a whole lot of deaf people.

One deaf person (in response to the possiblity of eradicating deafness via gene therapy) supplies a different kind of speculation:

"Had [gene therapy] emerged in the 1950s, there would have been immense social pressure to use this technology to remove homosexuality... Fifty years later, we can imagine the magnitude of the crime that would have been committed in society's name." (Paddy Ladd, from the New Scientist, 28 August, 2004).

Phil Schwarz said...

Anonymous (please *do* identify yourself, in the interests of mutual reciprocity, as Lucas has asked you to do) said:

"Let's put the effectiveness of the coclear implant aside for now. If the implant or some other method were 100% effective in allowing the deaf to hear with absolutely no downside, would you all still be against it?"

You miss the entire main point of Michelle's article. It is not the efficacy of the implant that is the problem. It is that its availability then allows society to abdicate from the obligation to support and accommodate people who do not want or cannot tolerate the implant.

There are already accommodations in place in at least *some* parts of the society that do not rely solely on sound: visual signaling, sign language, text messaging, and so on.

Why should society pay for these things, when instead it can put the onus on the non-hearing individual to undergo the scalpel? In short order, all the advances in non-sound-based accommodations I alluded to above will be de-funded and vanish.

People who have done perfectly well living their lives without sound -- even within a hearing world, provided that the hearing world is willing to meet them halfway -- will no longer be able to do so.

Their way of life will no longer be supported as legitimate.

Why bother teaching sign language, or supporting a culture and community built around it, at all? If the only recourse for non-hearing people is to get an implant, there won't be any people left who *need* sign language, so funding and support for it -- and all the cultural artifacts created in and around it -- will cease, and they will become extinct.

Would you be in favor of that?

I'm not.

I don't have anything against implant technology itself, or against those who opt for it, as long as its current state-of-the-art and limitations are made clear. What I am against is how it is misrepresented as a "cure" for deafness, and how it is deemed as a necessary choice to be made for children well before any possible age of consent *on the basis of the assumption that it is just fine for society to fail to support non-sound-based alternatives*. And I am against the inevitable destruction of a community, a culture, and a language that will result from that attitude taken to its logical conclusion.

The ethical problem at the core of all of this is that in effect we are saying that if a minority population diverges in some less-than-convenient respect from the majority, it is OK to declare the minority "defective" and put the onus on *them* to change, rather than upon society to accommodate them.

I have a big problem with that.

Anonymous said...

Hi all,

... Is it incorrect to extend the logic to those in our community who are paralyzed (I am thinking of quad and parapeligic HUMANS)... in many instances our communities have made accomodations so as to include those who are paralyzed. Ramps, access doors, elevators, extension of medicare so as to cover some of the costs associated with "chairs" and rehab, re-education programs (ie re-employment training), prosthetics etc... efforts have been made to include and accomodate. More can be done. However, is it also wrong to advocate and research for a "cure". Christopher Reeve certainly seemed intent on finding a cure for his condition. Some of my friends in "chairs" are avid advocates for a "cure" (ie stem cell research, nerve regrowth etc)? At the same time they also advocate for inclusion and acceptance.

Dave.

Michelle Dawson said...

Hi Dave,

There are many possible answers to that kind of question. Here are a few.

Different people respond differently to disabilities, for many different reasons. E.g., I know a person who does not have any legs. You might presume that he would want legs, unless you asked him and found out that he doesn't.

Looks like a wide variety of disabled people should be thoroughly involved in every aspect of all decisions (research priorities, public policy) about ourselves.

The examples I've used (in the original post here, and elsewhere) involve treating healthy children early in life, long before these children can consent to treatment. They also involve the conspicuous and drastic disappearance of basic human rights, which accompanies the assumption that some kinds of people and lives are optimal, and others are inferior.

See Phil's comment (and mine) above, if what I posted was not clear. Also, don't forget to read about the staggering costs of the chair- and dark-impaired.

Anonymous said...

Hi Michelle,

Yes... you are of course correct. Individuals should be consulted and should give consent.

In the case of children... consent is given by the parent (or the state as per recent developments when the state apprehended newish born children in order to give a transfusion... against the desire of the parents objections which were religous in nature).

... and Phil's point that our society should be inclusive and accomodating has resonance for me in light of recent calls by the medical establishment for all fetuses to be screened for DS... not very accompodating or accepting...

However, no mater how accomodating society becomes people will still need to develop skills to navigate thru the world.

It seems to me that ABA can play a role in assisting in skill development. I have never accepted the arguement that ABA is a "cure" for ASD or that a "cure" was the defacto end goal for ABA programs. From my perspective there is nothing to cure. Yes some very prominent advocates for ABA intervention have certainly presented ABA as a "cure" or a pathway to "recovery" but it is really just the application of the 7 cornerstones of behavioralism. If ABA works to foster skill development it is not such a bad thing IMO. While we work to foster a more accomodating and accepting society and until such a place exists... our children still need to learn how to ride a bus, cook diner, keep a job, get dressed, use a toilet, communicate with others (beyond an immediate support circle), play.... etc...

Anyway... thats how I see things. Rather then trying to change our children in a fundamental way the effort is focused on supporting the development of skills that will be needed... just as our public education system does.

My son is not a disease or a pathology... he is a smart little boy who has a wonderful personality. We do what we can to support him to be all that he can be.


Dave.

Michelle Dawson said...

Hi Dave,

I disagree that before Ivar Lovaas came along, no autistics at all ever developed skills, and generally disagree that there is only one way to learn. There is a lot of science to refute both of these assumptions on your part.

Re consent, there is excellent ethical work in non-autism areas. Serious errors have been made, in assuming what is best for some children. I wrote about this re a UCLA early ABA/IBI program (for "feminine boys"), in The Misbehaviour of Behaviourists, and in my Auton SCC written argument. If you are interested in consent issues, you can look those papers up (don't forget the notes, sources, and references in TMoB).

Whatever services are being demanded for autistics, they should be demanded accurately (e.g., with respect to existing science), ethically, and respectfully. Unfortunately, this has not (in the least) happened.

Denigration and dehumanization, the cornerstones of autism advocacy, are not good for autistic people or any other kind of people. Those who argue otherwise in the case of autistics, who excuse and wink at this as if it were trivial or promote this forcefully as "autism reality", are not helping us. They are harming us.

Anonymous said...

Hi Michelle,

You wrote: "I disagree that before Ivar Lovaas came along, no autistics at all ever developed skills.."

I think there is a misunderstanding. I have never asserted or attempted to convey that autisitics could not develop skills without Lovaas.

You also seem to assign a position to me (you "...generally disagree that there is only one way to learn) that I do not subscribe to. I think we are in agreement that autistics learn via many modalities. I have said that "It seems to me that ABA can play a role in assisting in skill development."... perhaps this is what we do not agree on? Note... I do not assume that it is the only "vehicle" to this end (imparting skills).

I just wanted to clarify that I have not assumed or asserted that prior to Lovaas autistics did not learn... nor that I beleive that ABA is the only path to skill development.

"Denigration and dehumanization, the cornerstones of autism advocacy"... From my perspective you are painting the autism advocacy landscape with very broad brush strokes. For some very vocal "advocates" your characterization strikes me as valid... but for others who are quietly working away out of the lime light of Hansard Transcripts and public forums this is not a valid assertion.


TTYL,


Dave.

Michelle Dawson said...

Hi Dave,

There is no (and for a long time has never been any) trace, at the legal, public policy, advocacy, popular (websites, media, blogs) etc--at any level--of Canadian autism advocates who have any objections whatsoever to the denigration and dehumanization of autistics. None.

Re learning, I see no trace (none) of any legal or political demands being made by Canadian autism advocates which acknowledge in any way whatsoever that autistics can learn, progress, contribute to society, etc. (or even be human) outside of ABA programs. I see no sign of autism advocates objecting to the Auton and Wynberg trial decisions.

Finally re your position, ABA programs in autism are founded on the (extremely well-documented) premise that autistics cannot learn in any other way--that is, we cannot learn except in an ABA program.

Anonymous said...

Hi Michelle,

I was responding to your charaterization of "assumptions" that you appeared to have ascribed to me. They are not accurate as related to me and they do not reflect my values or bias.

re. media... I can recall only a handful of local articles over the years presenting arguments similar to what I think has been presented on this blog. But they exist. One local article I still have on my wall (in the TimesColonist). I unfortunatly cut the date off when I clipped it out but... it was about a year ago. Outside of the mainstream local parents meet with MLAs and MPs presenting arguments... I tuned into your spot on CBC... the tele had somethign related recently... and a spot on savant ability ran not so long ago...

re. your point about "learning". I personally know many advocates that meet with local MLAs and MPs presenting arguements for ASD policy (provincial) to be developed so as to include other approaches (RDI and PBS groups seem to be the most active... do you include VB in ABA? This group is also very active).

On a local level parents have been fighting a rear guard battle with all three of our school districts to ensure that children with ASD are "included" in our schools. Typically schools are not repsonsive or have been unable to deploy accomodations/modifications so as to allow ASD children to be successful... behavior results as the autisitc child becomes increasingly frustrated or bored etc... kids are then kicked out as "behavioral problems". The fight has included lawyers but after periods of time most are resolved at the district reivew level... not much changes though at the local school level. We keep trying but BCTF and CUPE are glacial and insulated against change.

I agree that ABA programs are premised on the assertion that ABA is the only wa..y. I am making a distinction between ABA as a program and ABA as a set of principles.

Dave.

Michelle Dawson said...

Hi Dave,

I was and am responding to what you have written here and elsewhere, to the positions you publicly support, as well as to your priorities.

Also, I was referring to the positions and statements of autism advocates. Not everyone who works in the area of autism is an autism advovcate. I'm not. Nor are the researchers and autistics and parents (and combinations of these) I work with.

A good example of Canadian autism advocacy was the outraged responses to the Quirks and Quarks program. You may have read this on your home FEAT BC discussion board, as well as heard them on the radio.

There is no published science whatsoever to support RDI. I'm not sure why promoting a science-free approach to autism (setting aside for now the ethical problems in RDI) is supposed to be good for autistics.

PBS, like VB and PRT, is ABA. There are behaviour analysts who would disagree with this, but many others who would agree.

You are also now saying that your position re ABA-based autism interventions is not science-based.

I'm still haven't seen (as I wrote above), any "trace, at the legal, public policy, advocacy, popular (websites, media, blogs) etc--at any level--of Canadian autism advocates who have any objections whatsoever to the denigration and dehumanization of autistics. None."

This contrasts starkly with what happens in non-autism disability areas.

I don't see how disseminating grossly false and pejorative information about autistics (a major activity of autism advocates) helps autistics in any way.

CUPE in BC fully supported the Auton parents.

Anonymous said...

Hi Michelle,

My priorities and position are two tiered. TIer one is focused on the immediate needs of my child to develop skills. To this end we provide all sorts of opportunities for life enrichment that our son seems interested in (music lessions & therapy, swimming lessons, play groups and ABA based tutoring and Montessori School). He learns from all of these opportunities (as I have said before). Tier two is rooted in promoting access and inclusion for our children. I am active locally in an effort to promote these changes (ie thru our local PAC, DPAC, BCCPAC, SPC, meetings with MLAs, provinical ASD policy development panels, CARF and MCFD ASD policy development, VSCA and ASBC). In many instances I am the one voice who has consistently asked for "self advocate" representation as I have not assumed to "know". It is only on our GVDSS (DS group) that we have had active self advocate representation and we have continued to expand such representation. I am not sure how these priorities are offensive...

"You are also now saying that your position re ABA-based autism interventions is not science-based."

No. I am not saying that. I am saying that the science does not support the assertion that ABA is the only way. I am also saying, as I have said before, that the science is not complete (suggestive... but not finished). I am saying that ABA has a body of research that offers support for the approach... but that some advocates have over stated the case. I do hope that future studies will utilize Random Matched Assignment strategies such as Sallows and Graupner (2005) attempted when assigning to both treatment groups (I think 38% of the Rapid Learners in the Clinic directed group did well as did 60% in the Parent-Directed group and ... all children (both PD and CD groups) received treatment based on the UCLA model). Although Sallows et al (2005) note that there was no statistically significant differences between PD and CD rapid learner groups it was an unfortunate choice, IMO, to combine the scores (so as to arrive at 48%...). I am a fan of parent directed, non governmental services... I liked the %60 number. 38% is also repsectable though.

"I don't see how disseminating grossly false and pejorative information ... helps autistics in anyway"... I agree and have said so before.

I did catch the comments re Q&Q... If I recall correctly most seemed to be the voices of parents who were afraid that the one avenue of support they have for assisting their children was being threatened. The last comment by the "advocate" (for the blind comunity I think?) was also a strong "voice" for what you are trying to convey. It seemed that there was equal opportunity for expressions of concern and also of support.

re. Popular Media and advocacy... if I find sources in the future I will forward them to you. They are, however, very infrequent.

Have you ever considered launching a web site like the CDSS or forming your own National Advocacy group to act so as to balance the conversation? You would be a fantastic advocate IMO... why not "go for it"?

re CUPE supporting the Auton litigstion. I was not aware of that. Beyond that my comment was based on CUPE and BCTFs resistance to staffing deployment, training, openness to meaningful inclusion etc... often staffing deployment is done on the basis of seniority and not on the needs of the student in question. Training is inadequte in many situations. Staff are not trained on the development of modification, addaptation, and universally accessable curriculum. In a nut shell the challenge to fostering changes in teaching practice is huge. It is related to legislation, work environemnt (staff are isolated in classrooms for the day... little professional interaction etc) and assumed habits.



Dave.

Michelle Dawson said...

Hi Dave,

I was referring to your priorities when you comment, here and elsewhere (compared, e.g., to the priorities of other parents of autistic children). I haven't referred to your priorities as "offensive".

ASBC equates autism with cancer (many possible quotes from Mr Lewis), promotes institutionalization for all autistics who are not in unlimited "medically necessary" ABA programs, etc. I have not seen anyone involved in ASBC, or ASC (Mr Lewis is a director), object to this in any way. Maybe you can tell me how ASBC's promotion of these and other harmful and anti-scientific views helps autistic children (in or out of schools).

I disagree with your non-reality-based view of the Q & Q comments, which included ASBC stating that positive, accurate views of autism should not be allowed on the radio, and that it was irresponsible to permit such scientific (the science has now been accepted for publication) and ethical views to be aired.

ASBC did not object when autistics were described as less than human on an earlier Q & Q segment. Priorities, again. The comments, with the exception of the last one (which did not come from someone involved in autism issues, but from someone who is, like me, visually impaired), were in effect, "how dare you say good things about our children" and "how dare you even suggest that without 'medically necessary' ABA 'real' autistic people are anything but miserable and doomed drains on society" and "that reprehensible... fake ... person... doesn't know anything about 'real' autism", this last complete with assertions about what my personal life is like from complete strangers.

Not one of them cared about the science (which has now been accepted for publication), except that ASBC made it clear that this kind of science is wrong and should not be conducted. These are the views you're defending, Dave.

The major premise of ABA-based autism interventions is that autistics cannot learn except via these programs. This also is the major (if not only) rationale for massive public funding for these programs. The amount of (extremely) well-documented evidence for this is truly massive.

An uncontrolled trial with a very small number of participants (Sallows & Graupner, 2005) may meet the standards autism advocates promote as good for autistics, but does not approach the basic scientific standards that protect and benefit non-autistics. The main message from this very small uncontrolled trial is that both intensity and quality of ABA-based interventions are irrelevant to outcome measures. This goes with many similar findings, including the Vancouver study (Eaves & Ho, 2004) showing no effect of kind or amount of any currently marketed autism treatment, including ABA, on outcomes.

I'm a researcher, not a lobbyist, and according to Canada's autism advocates, if autistics are able to express our views, unless those views agree with autism advocates, then we are not really autistic, we are frauds and imposters.

Anonymous said...

Hi Michelle,

I think we see the fundemental goal of ABA in a different light. For me ABA is a means to teach skills. It has never been the goal to "eradicate" autism from our son. He is and always will be a person with Down symdrome and an autisitc. It is who he is and we love him and accept him for all of it. Having said that ABA has provided a means of fostering skills needed for a functional language (sign and PECs), self care (toleting, dressing, bathing etc), and the development of many pre-academic skills. I do agree that for many proponents of ABA that the goal is "recovery" or "cure" (as defined as not identified as autisitc by blind evaluators) and that such a goal implies a pathology exists. This is not how we approach ABA. For me the rhetoric of some advocates and the apllication of the principles of ABA are two seperate entities.

You note that ML and ASBC "promotes institutionalization for all autistics who are not in ... ABA programs"... Can you provde a reference for this? Is there something specific on the ASBC website? I am not challenging your characterization... I just need a solid reference so I can see it for myself.

re. "Not one of them cared about the science". I did and I do care. I will read it once it is published (although I may need some help connecting the dots). I have read some of Dr. Mottrom (SP?) research before and I do get over to UVIc from time to time to dig thru journals... and I do read ouside of the ABA paradigm.

"I'm a researcher, not a lobbyist"... You seem to be a very prolific communicator/writer. I do think you would be an awesome advocate. I don't really equate "lobbyist" with advocate... I may be wrong but think you are acting as an advocate in many ways (not a lobbyist).

Unlike many others I have not ever insisted that autistics cannot learn via other modalities... for my son this is one of the effective apporaches via which he does learn. In some areas it has been the most effective... in other areas not so effective.

Take care,

Dave.

Michelle Dawson said...

Hi Dave,

My "views" re ABA-based autism interventions are based on the published science in this area. My guess is that behaviour analysts would not appreciate having their published work reduced to the status of "rhetoric".

Also, I'm concerned with autism public policy and legal issues. Again, reducing this to "rhetoric" misses the point that autism advocacy has serious (or as they say, devastating) consequences for autistics, which we live daily.

If you look around this blog (as you have been doing), you will find both Michael and Jean Lewis quoted re institutionalization (this is apart from Mr Lewis' and ASBC's support for the Auton trial and appeal decisions, which was expressed in the CMAJ among other places). If you look in the notes/sources of TMoB, you should find an example of Mr Lewis calling autistics "sick" and equating autism with cancer.

Re "not one of them cared about the science", I was referring to the responses to the Q & Q program and the reason I was asked to appear on Q & Q in the first place.

Anonymous said...

Hi Michelle,

"My guess is that behaviour analysts would not appreciate having their published work reduced to the status of "rhetoric". "

I was not referring to published research. IMO the rhetoric is found in many of the writings that are not research articles (although there is some rhetoric within the research articles to...). If they do not appreciate such a description then that is to bad and I expect that they will take it up with me.

re. "ASBC ...promotes institutionalization for all autistics who are not in unlimited "medically necessary" ABA programs"

I have looked on this site and I did not see it. Show me.... even better show me on the ASBC or FEAT site and boards. Again, I am not challenging your description it is just that I have not come across that particular "statement".


Dave.

Michelle Dawson said...

Hi Dave,

There is a post on this (searchable) blog devoted to Mr Lewis' published (available online) statements re institutionalization. It is here.The opening quote re institutionalization comes from the FEAT BC website.

FEAT BC, like ASBC, strongly supports the Auton trial and appeal decisions (which you've read). If you have an example of FEAT BC and ASBC denouncing these decisions for their statements re institutionalization, and generally re writing off autistics who have not had "medically necessary" Lovaas ABA, then please give me examples.

On its current website, FEAT BC claims that Lovaas ABA is necessary to save the lives of autistics, which is a statement that autistics who do not have this treatment are not just institutionalized, but dead. Here is another quote from the sameFEAT BC press release:

"Untreated autistic adults must be cared for by the Government, 24-hours a day, for the rest of their lives, often in extremely expensive, total-care institutions."

For more quotes from FEAT et al., re institutionalization etc., see this article. Sources, notes, and references at the end.

Anonymous said...

Thank you Michelle,

I had not seen "instant-institutionalization". I had thought that the extent of the Blog was on the navigation bar "Previous Posts". How do I "see" all of the Blog topics? I searched each of those pages on the recent posts nav bar... and missed the "search" option. My bad eyes and ADHD at work again.

I can understand how such comments could be hurtful. I wonder upon what they are based? Were %90 of Autisitcs instituitionalized in the past? IN the past many young adults with DS were also instituitionalized... but this is no longer the case for most. Folks with DS are benefiting from a more inclusive society, better educational opportunites, enhanced early intervention therapy(SLP, OT, PT, ABA, dietary counselling, and others like music therapy), community support as young adults, supported living arrangments etc... many have had "guardianship" granted to parents or microboards... but remain in the community as active particiapnts in all aspects of society. On that note... all of these therapies are first introduced when the child is not able to give "informed" consent. Do the same ethical issues therfore emerge? CDSS has some wonderful value statments... but practice and introduction of therapy occurs shortly after birth (IDP team) and continues as the child ages (EIP). Is it different if the expressed intent is "life enhancment" and the "slogans" reflect the personhood of the child/adult?


Dave.

Michelle Dawson said...

Hi Dave,

If you go to the main page, there are archives by month. Also, this blog is searchable (as I mentioned before).

The "Instant Institutionalization" entry has a link to an investigation of the science and ethics of the 90% figure. There is both descriptive and empirical work showing that institutions destroy autistics.

When powerful advocates claiming to represent all autistic people demand that we be institutionalized (unless we sufficiently become normal), this has real-life consequences. You can see some of them here and here. That is just an introduction. I have also lived the consequences of autism advocacy demands that people like me be institutionalized (and abused once we get there).

And when autistics are written off like this, there is no reason for public policy efforts to help us. We are, after all, total write-offs. As has recently been said, we aren't even human (or alive) unless we've had "medically necessary" ABA/IBI from early in life.

This can be seen in the Auton trial decision--which is supported unquestioningly by every autism advocate in Canada (and some in other countries). This decision states that it is wrong to help or support autistics when there is a "medical" treatment available that promises to "recover" half of us.

The CDSS does not demand "medically necessary" ABA for all people with DS. Nor do they demand that any DS people who have not had "medically necessary" ABA be institutionalized. The CDSS does not equate DS with cancer (or wish that DS children had cancer), or portray DS children as horrors who destroy families and who are such gigantic drains on society that they will destroy the entire economy.

The CDSS does not denigrate DS people and claim they have no humanity (or are not even alive) unless they become sufficiently normal via Lovaas ABA (or any other kind of ABA). The CDSS does not describe DS as a "debilitating disease" or "terrible disease" or "frightening disease". The CDSS does not want to prevent DS people from existing. The CDSS states that:

Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention.

Does this mean they don't want help for DS people? I don't think so...

The CDSS put an ad in the Globe and Mail that stated their ideal that "In the future, intolerance will be cured, not Down syndrome."

More recently, they have been in the Globe and Mail, carefully an diligently rejecting biased, negative views of DS, and stating that DS is not a disease, but an alternate way of life. Also recently, they have stated that DS should be celebrated.

My position is that services for autistics--whatever services they are--should be asked for accurately, ethically, and respectfully. My other position is that autistics deserve high standards of advocacy, science, and ethics. Those are the standards that you can take for granted, that automatically benefit and protect all non-autistics.

Given the response to my work, it's been made extremely clear that these positions are considered unacceptable and reprehensible by Canada's autism advocates.

Anonymous said...

Thank you Michelle,

This about says it all:

"My position is that services for autistics--whatever services they are--should be asked for accurately, ethically, and respectfully. My other position is that autistics deserve high standards of advocacy, science, and ethics."

Add to your list of "battles" CDSS is fighting the issue of prenatal screening and subsequent termination of pregnancy as a result of confirmation of DS.

I asked about CDSS simply because there appears to be some parrallels to the ASD community. If ASBC had adopted a position that affirmed the value and integrity of autisitcs and also advocated for support services (which might include ABA) things might be different?

I was also curious about your position regarding informed consent as therapy is occuring at early ages for children with DS. In both the DS and ASD communities it occurs without informed consent on the part of the person with DS or ASD when they are young. Parental consent is given in both situations.

Beyond that, in our experience therapeutic services for our son (prior to diagnosis of ASD) were typically focused on skill development and addressing deficits and challenges (speech and language, motor skills (gross and fine), social skills, self help skills...). How we approached ABA after diagnosis of ASD was very similar. It has focused on skills and challenges... language development, self help, fine motor, gross motor.. Both before and after diagnosis of DS and before and after diagnosis of ASD we knew we had a little boy (a human) and we have never lost sight of this fundamental fact. As I have said beofre the goal has never been the erradication of DS or of ASD from our son. He is who he is... and he is wonderful.

Dave.

Michelle Dawson said...

Hi Dave,

I'm not too interested in speculation. Also, my two positions sufficiently respond to what you've written this time.

E.g., outside the field of autism, there is a lot of existing ethics-based work re consent issues (when consent cannot be obtained directly). I wrote a bit about this in TMoB (see also notes, sources, and references), and in my Auton written argument.