The following is a letter that I will be sending to the Board of Directors of the Autism Society of Newfoundland and Labrador concerning the “Light It Up Blue” campaign. At the bottom of the post is a link to the PDF version.
Dear Mr. Crocker and Members of the Board,
Once again this April, St. John’s/Newfoundland has tried to demonstrate and/or encourage “autism awareness” (or “autism acceptance”, as most autistics prefer) by “Lighting It Up Blue” on Cabot Tower and the Confederation Buildings. And I really have to protest.
The “Light It Up Blue” campaign was created by the organization called Autism Speaks, which is an organization that the vast majority of autistics despise with a passion. Autism Speaks uses fear-mongering to promote their objectives of “research for a cure to autism”, and they refuse to listen to autistics when we protest their behaviour and actions; they have even been known to bully autistics online and attempt to push us out of the dialogue on autism. It got so bad last year that John Elder Robison, who was the only autistic on the board of Autism Speaks, resigned over the message of fear that they promote. Plus, it is a known fact that of the funds they raise, only 4% goes to help families and autistics. The rest goes to salaries and the research for a “cure”.
As for the “Light It Up Blue” campaign… aside from the fact that it supports Autism Speaks, which I do not, do you know why it is “Light It Up Blue”?
According to the Autism Speaks website (https://www.autismspeaks.org/blog/2012/04/02/shine-light-autism-rosco-color-filters), the colour blue was chosen because “blue represents boys, and boys are five times more likely to be autistic than girls”. Never mind the fact that blue has only represented males for the last century (before World War I, pink was considered representative of males), never mind that their reasoning means it doesn’t represent me in the first place, considering that I’m female; we have been finding out over the last decade or so that there are plenty of girls on the spectrum, most of whom have been missed or mis-diagnosed because autism presents differently in females. That means that the “Light It Up Blue” campaign, by its very nature, excludes approximately 1/3 to 1/2 of autistics.
Not to mention that as an autistic, I have sensory sensitivities; and blue light hurts my eyes. It’s quite painful, especially at night. So, at least one autistic is physically hurt by the “Light It Up Blue” campaign that is supposed to be helping autistics.
Considering those facts, is it any surprise that I want to object to Newfoundland participating in the whole “Light It Up Blue” for Autism Awareness?
Autism Acceptance (because we really need more than simply awareness) is a very important cause, particularly to me. And I’m happy that our province is trying to support it. But participating in a campaign created by people who try to silence autistics, and promote an aura of fear and the belief that autism should be done away with, is very much not the way to do it. So by all means, Newfoundland should be promoting awareness and acceptance during World Autism Acceptance Day and Month; but there are other ways to support the cause that involve actually supporting autistics. Some possibilities include:
- Rather than “Light It Up Blue for Autism Awareness”, why not “Light It Up Red for Autism Acceptance”? Red is the official colour of autism acceptance.
- Help the ASNL have panels where autistics can share their views, what’s wonderful about being autistic, what some of the challenges are, and what coping methods can be used.
- Encourage mentorships partnering adult autistics and both parents and autistic teens.
- Take a look at the Autism Acceptance Decade (aka It’s Time To Take Back April) web site at http://autismacceptanceday.blogspot.ca/.
Thank you for taking the time to read this.
Trudy Goold / tagÂûght
A few other links to important information for both references and possibilities:
- “G is for Giraffe” – a post on Autistic symbols: https://unstrangemind.wordpress.com/2015/04/09/g-is-for-giraffe/
- Acceptance and What Is Autism?: https://aspergersandmeblog.wordpress.com/2015/04/06/autism-awareness/
- Facts about Autism Speaks (plus links in page): http://shitrichcollegekidssay.tumblr.com/post/96412500099/autism-speaks-masterpost-new-updated-6-20-14
- A mother’s perspective on Autism Speaks and LIUB: https://adiaryofamom.wordpress.com/2014/06/25/the-color-blue/
- A mother’s perspective on Awareness vs. Acceptance: https://adiaryofamom.wordpress.com/2014/02/24/are-autism-awareness-days-a-good-thing/
- A post about Autism Acceptance: https://ajhackney.wordpress.com/2015/03/27/turn-the-lights-out/
- Say No to Autism Speaks (PDFs): https://ajhackney.wordpress.com/misc/say-not-to-autism-speaks-educational-flyers/
- My blog entry about WAAD 2015: http://tagaught.net/waad-2015/
And as I mentioned, I also have a PDF version that so that you can see how the printed letter I sent looks (with my address and signature redacted). Please feel free to use this as a template for addressing your own local autism societies – it’s an open letter.