Thursday, July 21, 2016

Our Existence is Not an Epidemic: An Open Letter to Jill Stein

Dear Dr. Stein,

I was an activist in the early days of the Massachusetts Green Party in the late 1990's and early 2000's.   We met briefly a few times when you were running for Governor.

I am also Autistic. 

The last time you ran for President, you told John Saul of the Seattle Times that:

"In 25 years in clinics, I witnessed an increase in diseases – asthma, obesity, autism. Certainly our DNA did not change in that short time; the problem is with our sick food system, pollution and failing health care,”

When you make statements like this you are further marginalizing people like me -- which flies in the face of the values the Green Party is supposed to represent.

Autism is not a disease.    As Autistic scholar Nick Walker writes "Autism is a genetically-based human neurological variant."  Our divergence comes in the form of increased sensitivity to sensory and emotional stimuli, marked differences in verbal and non-verbal communication from the general population, and a tendency toward non-linear systems-oriented thinking.   These differences have made us driving forces in technological and cultural change throughout human history.  And, in this culture, they have made us pathologized and feared.   Many of us have trouble "functioning" in the ways this society expects us to, because this society was not made with us in mind -- just as Queer and Trans people often find challenges to integrating into a society that is based on heteronormative and cis-normative assumptions about gender and sexuality, Autistic people often find it challenging to integrate into a culture rooted in assumed neurotypicality.

(Incidentally, being fat is not a disease, either.   While there is some correlation between a variety of health problems and high body weight or high body fat, correlation does not equal causation, and healthy bodies come in many shapes and sizes.  The moral panic about "obesity" is unscientific and contributes to discrimination against fat people.)

Nor is there an "Autism epidemic."   First of all, in order to have an epidemic you have to have a disease.   But, secondly, the increase in the frequency of Autism diagnoses is explained by changes in definitions and diagnostic criteria.

As someone who struggled with asthma most of my life, in part because of growing up in a cluster of trash incinerators in Massachusetts, I am more aware than most of the public health crises caused by pollution.    But my neurobiology is neither a pathological condition nor is it the result of anything in my environment.

Please:


  • Stop talking about Autism as a "disease" or an "epidemic."
  • Clearly and publicly distance yourself from the fraudulent and hurtful claims of former gastroenterologist Andrew Wakefield that vaccines cause Autism.   While I understand your principled position that vaccines should not be mandatory because people should have a right to make their own health care decisions, in the absence of such a clear statement, your opposition to vaccine laws provides cover for those spreading false information about vaccines and Autism.
  • Get to know Autistic adults.   Consult with us about our needs.   Adopt policies that support the work and struggles of Autistic people.

I would love to be able to support your campaign, but I cannot do so while you pathologize people like me.


Sincerely,
Sean Donahue





5 comments:

Maggie Emm said...

Well said! Society benefits greatly from the whole range of humanity, whilst pathologising and sidelining those who don't fit 'the norm'.It seems like the more society moves towards accepting some differences, the more it puts disease labels on others, as though there always has to be a division, a right and a wrong way to be.
Vive la difference!

Esther Shucet said...

Thank you for sharing this.

Esther Shucet said...

Thank you for sharing this.

David Stratton said...
This comment has been removed by the author.
David Stratton said...

I just came here from a link to this article on WeHuntedtheMammoth.com: http://www.wehuntedthemammoth.com/2016/09/07/today-in-breitbart-comments-carry-a-gun-in-case-you-see-more-than-one-black-person-at-the-mall/#more-24908

This letter was very well written and to the point and I appreciated your input and have learned from it. Thank you for taking the time to share it. I'm curious to know if Dr. Stein or her campaign give you any response. I suspect we'll stop hearing from her by about mid-November and we won't hear another peep from the Green Party until June or July of 2020 because that seems to be the MO for third parties, unfortunately.