Monday, March 30, 2015

Autistic self advocacy Network's new fundraising campaign

I see that the Autistic self Advocacy Network has started a new fundraising campaign. They give the potential donor three choices of causes to donate to.

The first is an autism campus inclusion summer leadership training program.  The apparent purpose of this is to train and indoctrinate college students in organizing others to spread the neurodiversity message.  The Mitsubishi corporation has already funded this endeavor of ASAN's in the past.  According to a post written by The canary party, an offshot of the anti-vax movement and one of the few organizations that actively opposes the neurodiversity movement, having a formal diagnosis of autism is not required for a college student to participate in this program. Only self-identification of being on the autism spectrum is required. We also have this announcement of the program by ASAN a few years back where they stated:  
This is an exciting move forward for ASAN and we hope it can be an exciting move forward for you. If you are a current college undergraduate student who identifies on the Autism Spectrum, including Autistic Disorder, Asperger's Syndrome, and Pervasive Developmental Disorder Not Otherwise Specified, with a strong interest in the Disability Rights and Autistic Rights movements, we invite you to apply for this leadership training.

   Gadfly is intrigued by the words who identifies.  Does this mean that any Tom, Dick, or Harry (or Harriet) can just diagnose themselves with autism and be eligible for the program?   There have been some questions in the past as to whether or not some of the more prominent members of ASAN are self-diagnosed.  One of the commenters on this blog claimed that Paula Durbin Westby told him in 2007 that she was self-diagnosed.  Of course, I have no way of verifying this claim or any other allegations of members of ASAN self-diagnosing themselves, however, this program seems (at least to me) to suggest that there is evidence that ASAN does in fact encourage self-diagnosis.

The second choice is to donate to ASAN's Policy advocacy arm.  Here they are trying to encourage policy against restraint and seclusion, discrimination in organ transplantation and paying subminimum wage to disabled people.

Though restraining and secluding autistic children may sound like a rights violation, it is actually for their own protection.  There have been several reports of autistic children wandering and being hit by cars and accidental drownings.  ASAN does not seem to care or have any alternative for preventing these tragic deaths, except to claim that if neurodiversity were implemented, we could find out what is causing children to wander and deal with it.  Of course, they provide no evidence of this.

As far as organ transplantation is concerned the sad truth is that there are only a finite number of hearts, kidneys, etcetera to go around and the demand for organ transplantation exceeds the supply.  If every autistic person who needed a new heart or kidney was granted one, some other person would be denied and they would die.  This could be an example of reverse discrimination.  In order for organ transplantation to be effective and save or prolong the life of the recipient, a strict regimen of medication, diet, etc. must be adhered to.  Sometimes a disabled person might not be able to do this and they'll end up dying or wasting the organ that could have gone to someone else who would follow the regimen and be able to best utilize this scarce resource.  From what I've read cadavaric transplantation may be underutilized, but I don't see Ari Ne'eman crusading for this.  One of the problems here is that the hospital or ethics committee who rejected the candidate for transplantation is barred by the HIPPA law from telling their side of the story as it would violate patient confidentiality.  I wish there were a solution where every person who needed an organ transplant could get one but unfortunately there is not one.  Gadfly would be at the front of the line in protest, if someone were denying someone a needed life saving treatment just because they happened to be prejudiced against autistic persons.  ASAN has failed miserably (at least in my opinion) to prove that this is the case.

In terms of subminimum wage laws, most of the organizations that pay subminimum wages are 501(c)'s such as the Goodwill who are just creating makework for people with disabilities who would not have anything to do.  Getting rid of these might actually be a good thing as Gadfly is not really a fan of sheltered workshops for a variety of reasons.  As far as the profit sector goes, legally they can pay a disabled person subminimum wage, but there is a burdensome bureaucratic process the employer must go through and much paperwork and proof has to be provided to show the handicapped person is not worth $8.00 an hour (or whatever the minimum wage is).  I suspect most employers would not find this worth their while and they'd just hire a non-handicapped person and pay them minimum wage.   I might agree with ASAN that the subminimum wage law for disabled people should be done away with.  However, the problem is that if this happened, Goodwill and other organizations would get rid of the sheltered workshops and the employers would just hire a non-disabled person for the minimum wage job. It would do nothing to improve employment opportunities for persons on the spectrum.

The last program you can donate to is something that combats stereotypes and misinformation about autism being a tragedy or a burden to families.  I believe that it is ASAN that fosters stereotypes and misinformation about autistic people.  One supporter stated that those who disagree with them should be shot to death or turned into cat food.  ASAN leads to stereotypes of  autistic people being abusive bullies and hate mongers who end up insulting someone's mother if they have no other way of winning an argument.  We are not monsters but I believe ASAN makes us look like monsters.  

For these reasons, I don't believe that ASAN is a cause worth donating to and I hope anyone who reads this post will find some other more worthwhile charity.  Somehow I doubt I'll convince many people. 

8 comments:

Lucia said...

Actually, according to a blog post by Autistic Hoya, disabled people are actively being denied transplants because of their "quality of life."

http://www.autistichoya.com/2012/01/life-not-worth-living.html

jonathan said...

thanks for the heads up abourt that post, Lucia, I'll definitely read it and maybe write an addendum to this post.

willie said...

I have mixed opinions I think restraints are necessary for safety but denying an organ transplant is not.

Shanti said...

I have heard that autistic people as a group are not denied transplants, but if person cannot communicate with a medical professional that could hinder the success of a transplant and planning follow- up treatments. At the same time, babies are given transplants and they cannot clearly communicate. Violent felons are given organ transplants. There should be some open discussion about this so we have all the facts. If it is just a 'quality of life issue' and violent felons are seen as more worthy than autistics, that's just wrong.

jonathan said...

@Shanti this I think is the case that started ASAN's crusade. I think this guy is high functioning and could follow instructions but i'm not sure, there were a variety of issues why he was denied. The article also said there are cases of persons with autism who get organ transplants. However, my main point in the post, was that these issues are far more complex than ASAN (and other members of ND) will acknowledge, and they just use this as an excuse to spread their hate and fear mongering.

Roger Kulp said...

As far as the term "identifies",well that is to be expected.Considering the number of people in ASAN that are likely to be self-diagnosed,well that is no surprise.You know more than I do about this,but I know there have been many in the neurodiversity who defend self-diagnosis because of the "fear" "trauma" and "anxiety" associated with getting a diagnosis.

Amelia Rivera got her kidney,with her mother acting as the donor.

http://wolfhirschhorn.org/2013/07/amelia/the-demolition-of-a-brick-wall/

I don't usually agree with ASAN,but this report is a must read.

https://autisticadvocacy.org/wp-content/uploads/2013/03/ASAN-Organ-Transplantation-Policy-Brief_3.18.13.pdf

"In the aftermath of Amelia Rivera’s case, state legislators in New Jersey introduced
legislation (A2390/S1456) to prohibit discrimination against people with disabilities
in the context of organ transplantation. The legislation—which as of this writing has
passed the New Jersey State Senate and cleared an Assembly Committee—prohibits
denying a person with a disability referral, evaluation and recommendation for
transplantation solely on the basis of a non-medically significant disability and
notes that individuals who have the necessary support system to comply with post-
transplant medical requirements should not have the inability to independently
comply with those requirements held against them when being evaluated for
transplantation consideration. The legislation is based on a similar law passed in
California in the aftermath of the Sandra Jensen case
26,27.

If passed, the New Jersey
bill would open up new policy momentum regarding disability rights in the context
of organ transplantation, addressing both of the major barriers to transplant
consideration for people with I/DD."


I do wonder why organ transplantation would be a concern of ASAN in the first place.These are people who claim autism is not a disability,but a positive difference.That medical issues that go with autism and developmental disabilities are irrelevant.These are not people who regularly give a damn about people with rare diseases.

This is an especially keen area of interest to me,as I am developing kidney problems as a direct result of going so many years with undiagnosed mitochonrial and metabolic disease.Many have been found to be more or less unique to autism.

jonathan said...

Roger, that is all very interesting and I am glad she got her kidney. if the mother is so concerned, I agree, she should act as the donor as she will be able to live with one kidney, though maybe shewill need dialysis, I don't know.

You know at least as much as I do about who and who isn't self diagnosed at ASAN, I really don't know the details, I wish I did. I've met and heard of a few people that are self diagnosed and defend it, but it's been rare.

Actually, ASAN has done work on providing better access to medical care for autistic people, though I don't know the circumstances. I guess renal and cardiac diseases are looked upon as diseases by them, whereas autism is not. Of course, they'll always have something to be angry about.

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