To Autism Speaks,
I've noticed you've made some words changes on your mission statement lately. You've replaced "cure" with "solutions" and included "acceptance". Some people are calling this a big shift for your organization, myself and many other autistic people don't think so.
While I have no doubt that you aim to stop the autistic people boycotting you and your sponsors, this is not the only change that needs to happen. For us to accept that you truly are changing, there needs to be more than just words. There needs to be actions as well.
There needs to be systematic changes to how your organization is structured, how it is run, in the decisions it makes, in how it spends its money.
In short, these are just words; what do your actions say?
How I can believe that you're making changes, when you still support ABA as a treatment? When you support research looking into autism and immune systems? When your organization still doesn't have autistic people in decision making positions? When you've pretty much not made any other changes? When you haven't apologized for the way you've demonized us, treat us as tragedies, cite inaccurate statistics about us? When I still see first-person language used, I can still see medicalization in your information about us, despite so many of us demanding that you do otherwise? When you otherwise ignore autistic people and fail in so many ways to support us?
You want to change? Show us you can actually change. Until then, we're not falling for your superficial gloss over, your charade. You're not actually supporting us, you're not actually listening to us, and until there is fundamental changes, you never will.
Showing posts with label cure. Show all posts
Showing posts with label cure. Show all posts
Friday, October 14, 2016
Tuesday, February 2, 2010
The Triggering of Dr. Wakefield
There has been a lot of going ons about the hearing of Dr. Andrew Wakefield and his general misconduct in his 1998 Lancet paper. You remember, the one that claimed to have found a connection between the MMR vaccine and Autism.
Now, a decade later, his findings are thoroughly discredited, and he's been taken to task, not for his findings, but the way in which he conducted his research. It is very well likely that Wakefield will lose the official justification to put "Dr." in front of his name over this. Not that this will stop his more .... loyal followers from doing so. But in the eyes of the academic and medical community, no. He is practically stripped from the title, the respect and authority as a medical professional in the unethical and callous methods of his research.
I'm not going to cover all the findings and the commentary about this. Although, Lizditz has done an excellent job, as usual, compiling a list of the commentary, news coverage and general blog-interaction, including the Lancet officially and completely retracting Wakefield's infamous study.
And no, I'm not going to rehash what pretty much everyone who reads here already knows, that I thoroughly disagree with Wakefield. Period.
No, what I'm wondering about is the fact that Wakefield was approached, seemingly, by the lawyer of families convinced that the vaccine had caused their children's autism, and looking for medical justification to take the vaccine companies to court.
Let's just pause and think. Sure, Wakefield has a history of research targeting to slander the MMR, in the interests of promoting his own vaccine. Sure, he accepted the payment from the lawyer and conducted the research horribly. And yes, the fallout from his actions
1) decreased the vaccination rates, allowing measles, mumps and rubella to return, to sicken, to disable and even outright kill
2) poisoned a portion of the population to believe in scam treatments, costing families vast amounts of money and blindly following every charlatan in a desperate false hope to "fix" their "damaged" children , and
3) set back proper scientific research into proper accommodations and supports for autistic people
But, would Wakefield had been looking to connect the MMR to Autism if it wasn't for those families?
I know, I know, it'll be MEAN of me to blame the families for all of this. After all, they were (possibly still are) in the desperation that many families with autistic members experience today.
And in their desperation, I can imagine that they saw that what countless others have noticed, that the autism becomes apparent around the same time that the vaccine is administered. It's the whole seeing causation in correlation thing, making connections that may not (and most likely don't) exist. It's what humans do, try to make sense of the world. I don't want to count or even consider the many superstitions that humans have in place by following this try of reasoning.
However, for some reason, these families took their hunches, and decided to look for proof and decided to look for compensation. And that decision took their lawyers to Wakefield.
It could be a simple reason that there was, at that time, no information concerning a connection between vaccines and Autism. Or maybe that the information was not easily accessible, or in terms that was understandable. I remember 1998 and computers and the Internet weren't exactly the commodity it is today (well, at least it wasn't for our family).
But either case, these families felt that there was a case to be made in this, and looked for proof.
Now, I don't know who's idea it was to approach Wakefield, pay him to conduct a study with some brutal and unnecessary tests on their children, and basically manufacture favourable results. I don't know whether it was the lawyer, or one or many of the parents.
But SHAME on them.
It is that person that I personally consider to be the most responsible for the fallout that has happened from Wakefield's now-fully-retracted study. Yes, that means I consider them partially responsible for the Jenny McCarthy Body Count, for the unsafe, scientifically unproven quack treatments that cause undue suffering of autistic individuals, and for all manner of emotional and mental stresses that this causes autistic families, including those that can drive parents to murder their autistic children because of a lack of support.
With the misery that has been caused as a result of that person, the decision of the parents and lawyers, and the actions of Wakefield, who really has benefited? What good has come from all of these? Other than the resounding evidence proving Wakefield wrong, I don't think that the autistic community has gained very much. In fact, I don't think that the human population has gained at all, given the increase in completely preventable diseases.
Has those families who originally approached Wakefield really benefited from this, and has any of them even considered themselves to be partially responsible for the fallout?
In closing, while I do think that it's proper that Wakefield to bear responsibility for the part that he played, I think that he is not the only one to bear full responsibility for the crime that has been committed against the autistic community. I'm in no position to actually say who all needs to bear responsibility for this, but I think that it is something to be considered.
After all, one can only be responsible for one's own actions.
[edit: Feb 2011] There's been more breaking news about Wakefield, that he actually changed data in his study, and it's adding more flames to the fire. I have heard rumours that Wakefield approached the lawyers, not them approaching him. However, I have yet to confirm those reports, but I still have to maintain that there is a responsibility from the families for their part in Wakefield's actions, in their funding, in their interest in him producing his results, and the fallout that occurred.
Now, a decade later, his findings are thoroughly discredited, and he's been taken to task, not for his findings, but the way in which he conducted his research. It is very well likely that Wakefield will lose the official justification to put "Dr." in front of his name over this. Not that this will stop his more .... loyal followers from doing so. But in the eyes of the academic and medical community, no. He is practically stripped from the title, the respect and authority as a medical professional in the unethical and callous methods of his research.
I'm not going to cover all the findings and the commentary about this. Although, Lizditz has done an excellent job, as usual, compiling a list of the commentary, news coverage and general blog-interaction, including the Lancet officially and completely retracting Wakefield's infamous study.
And no, I'm not going to rehash what pretty much everyone who reads here already knows, that I thoroughly disagree with Wakefield. Period.
No, what I'm wondering about is the fact that Wakefield was approached, seemingly, by the lawyer of families convinced that the vaccine had caused their children's autism, and looking for medical justification to take the vaccine companies to court.
Let's just pause and think. Sure, Wakefield has a history of research targeting to slander the MMR, in the interests of promoting his own vaccine. Sure, he accepted the payment from the lawyer and conducted the research horribly. And yes, the fallout from his actions
1) decreased the vaccination rates, allowing measles, mumps and rubella to return, to sicken, to disable and even outright kill
2) poisoned a portion of the population to believe in scam treatments, costing families vast amounts of money and blindly following every charlatan in a desperate false hope to "fix" their "damaged" children , and
3) set back proper scientific research into proper accommodations and supports for autistic people
But, would Wakefield had been looking to connect the MMR to Autism if it wasn't for those families?
I know, I know, it'll be MEAN of me to blame the families for all of this. After all, they were (possibly still are) in the desperation that many families with autistic members experience today.
And in their desperation, I can imagine that they saw that what countless others have noticed, that the autism becomes apparent around the same time that the vaccine is administered. It's the whole seeing causation in correlation thing, making connections that may not (and most likely don't) exist. It's what humans do, try to make sense of the world. I don't want to count or even consider the many superstitions that humans have in place by following this try of reasoning.
However, for some reason, these families took their hunches, and decided to look for proof and decided to look for compensation. And that decision took their lawyers to Wakefield.
It could be a simple reason that there was, at that time, no information concerning a connection between vaccines and Autism. Or maybe that the information was not easily accessible, or in terms that was understandable. I remember 1998 and computers and the Internet weren't exactly the commodity it is today (well, at least it wasn't for our family).
But either case, these families felt that there was a case to be made in this, and looked for proof.
Now, I don't know who's idea it was to approach Wakefield, pay him to conduct a study with some brutal and unnecessary tests on their children, and basically manufacture favourable results. I don't know whether it was the lawyer, or one or many of the parents.
But SHAME on them.
It is that person that I personally consider to be the most responsible for the fallout that has happened from Wakefield's now-fully-retracted study. Yes, that means I consider them partially responsible for the Jenny McCarthy Body Count, for the unsafe, scientifically unproven quack treatments that cause undue suffering of autistic individuals, and for all manner of emotional and mental stresses that this causes autistic families, including those that can drive parents to murder their autistic children because of a lack of support.
With the misery that has been caused as a result of that person, the decision of the parents and lawyers, and the actions of Wakefield, who really has benefited? What good has come from all of these? Other than the resounding evidence proving Wakefield wrong, I don't think that the autistic community has gained very much. In fact, I don't think that the human population has gained at all, given the increase in completely preventable diseases.
Has those families who originally approached Wakefield really benefited from this, and has any of them even considered themselves to be partially responsible for the fallout?
In closing, while I do think that it's proper that Wakefield to bear responsibility for the part that he played, I think that he is not the only one to bear full responsibility for the crime that has been committed against the autistic community. I'm in no position to actually say who all needs to bear responsibility for this, but I think that it is something to be considered.
After all, one can only be responsible for one's own actions.
[edit: Feb 2011] There's been more breaking news about Wakefield, that he actually changed data in his study, and it's adding more flames to the fire. I have heard rumours that Wakefield approached the lawyers, not them approaching him. However, I have yet to confirm those reports, but I still have to maintain that there is a responsibility from the families for their part in Wakefield's actions, in their funding, in their interest in him producing his results, and the fallout that occurred.
Thursday, August 6, 2009
Let's Talk Neurodiversity
Originally posted on LJ June 10th, 2009 as Neurodiversity and Autism YouTube Video
I just posted my youtube video here: http://www.youtube.com/watch?v=3vrSM-CwLwY
Just a warning, apparently it's being blocked in some countries due to copyright.
So what do you all think?
I just posted my youtube video here: http://www.youtube.com/watch?v=3vrSM-CwLwY
Just a warning, apparently it's being blocked in some countries due to copyright.
So what do you all think?
Wednesday, August 5, 2009
The Cure to Autism video
This was originally posted on LiveJournal February 10, 2009 as The Cure to Autism video
A bit morbid, for a little shock value.
Even the best of us has a temper, and this is a part of mine.
This is a response to EVERY and ANY claim to CURING or HEALING autism spectrum disorders EVER MADE.
ASD is neurological and genetic. Meaning, it's the way the brain works, and pretty much the way your family's brains work, with varying differences. It's a difference, not a disease. You don't cure or heal diversity. To try and do so is to commit a murder upon human diversity and innovation.
And sometimes it takes a little shock to prove my point. Human diversity and difference is beautiful. Let's accept, include, accommodate and delight in all people.
http://www.youtube.com/watch?v=JFmi1o0JEaM
Later, I had to make another post on Feb 12th
oh joy!! TROLLS!!!!
so yeah, interesting "discussion" about my anti-curebie video on YouTube. one valiant guy from Wrongplanet.net is fighting in my name, with Noyer joining in.
If any of you want to follow or jump in, go for it. http://www.youtube.com/watch?v=JFmi1o0JEaM
http://www.youtube.com/comment_servlet?all_comments&v=JFmi1o0JEaM&fromurl=/watch%3Fv%3DJFmi1o0JEaM
fun fun fun.
The troll, as I've named him, seems to be concerned about autism as a mental impairment that is incurable, that those of us who are "high functioning" are not impaired. Basically, he's belittling "high-functioning" autistics and aspies, saying that those "low functioning" cannot get jobs, go to college/university or be anything other than disabled and have no gifts or strengths, and so must be cured
And then on the 15th:
oh perious me!!
If I were Catholic, my next confession would be something like this:
"Bless me Father for I have sinned, I have committed an original sin. I have poked a troll with a spork."
I also just called him arrogant, since he was setting himself up as being representative of the vast majority of opinion, when a few arguments ago he was accusing my allies and I of maintaining and justifying social stratification.
Let me just say, that I don't really take trolls all that seriously, but I obsess over them, so I had to approve-only comments for this video
A bit morbid, for a little shock value.
Even the best of us has a temper, and this is a part of mine.
This is a response to EVERY and ANY claim to CURING or HEALING autism spectrum disorders EVER MADE.
ASD is neurological and genetic. Meaning, it's the way the brain works, and pretty much the way your family's brains work, with varying differences. It's a difference, not a disease. You don't cure or heal diversity. To try and do so is to commit a murder upon human diversity and innovation.
And sometimes it takes a little shock to prove my point. Human diversity and difference is beautiful. Let's accept, include, accommodate and delight in all people.
http://www.youtube.com/watch?v=JFmi1o0JEaM
Later, I had to make another post on Feb 12th
oh joy!! TROLLS!!!!
so yeah, interesting "discussion" about my anti-curebie video on YouTube. one valiant guy from Wrongplanet.net is fighting in my name, with Noyer joining in.
If any of you want to follow or jump in, go for it. http://www.youtube.com/watch?v=JFmi1o0JEaM
http://www.youtube.com/comment_servlet?all_comments&v=JFmi1o0JEaM&fromurl=/watch%3Fv%3DJFmi1o0JEaM
fun fun fun.
The troll, as I've named him, seems to be concerned about autism as a mental impairment that is incurable, that those of us who are "high functioning" are not impaired. Basically, he's belittling "high-functioning" autistics and aspies, saying that those "low functioning" cannot get jobs, go to college/university or be anything other than disabled and have no gifts or strengths, and so must be cured
And then on the 15th:
oh perious me!!
If I were Catholic, my next confession would be something like this:
"Bless me Father for I have sinned, I have committed an original sin. I have poked a troll with a spork."
I also just called him arrogant, since he was setting himself up as being representative of the vast majority of opinion, when a few arguments ago he was accusing my allies and I of maintaining and justifying social stratification.
Let me just say, that I don't really take trolls all that seriously, but I obsess over them, so I had to approve-only comments for this video
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