“Light It Up Blue” is Bad. This is Why You Shouldn’t Buy in to the Blue or the Puzzle

This is Why You Shouldn't Buy in to the Blue or the Puzzle

“Light It Up Blue” is all over the place since it’s April – Autism Awareness Month. Yay! That’s the month I always dread, because my Facebook feed is flooded with posts by my Autistic friends on how much they loathe Autism Speaks and the whole “Light It Up Blue” campaign thing, and then! All the posts from parent friends who are posting stuff about how we oughta “Light It Up Blue”.

What is “Light It Up Blue” Anyway?

This part is more for my mom than anyone, because I know she’s going to ask me later. “Light It Up Blue” is this campaign that this organization called Autism Speaks puts out every year. It’s their signature campaign, supposedly to bring awareness and acceptance to Autistics and raise money for support and services to Autistics and their families.

It’s called “light it up blue” as supposedly more boys have autism than girls.

That sounds pretty great (acceptance! awareness! raising money for support and services!), but here’s the thing: Autism Speaks is BAD. It’s bad because, as the Autistic Self Advocacy Network (ASAN) says, “Autism Speaks has no significant autistic leadership and has never been aligned with the needs and priorities of the autistic community.”

Consider This

So!

Autism Speaks is an enormous organization that makes millions. It’s a non-profit, but don’t be misled by the term, “non-profit”! That only means that the profit that the organization makes goes back into the organization, which can mean (as it does in the case of Autism Speaks) that in “2013, Autism Speaks CEO’s salary was $371,000.”

That organization is Raking.It.In, to the tune of millions of dollars, on the backs of Autistics. How much of all the money that is donated actually goes to families and support services? It in the realm of a whopping 4%.

It occurred to me that this is all very similar to what the Alexander Graham Bell organization is doing with my own deaf community (remember my post on Nyle DiMarco?!), thrusting a medical model of disability on us, one that is based on a premise that we are broken, in need fixing, and seeks to cure us. This doesn’t align with what we know to be true: that we are as we should be. In line with the social model of disability, we are busy creating our own culture and removing barriers to our access.

Autism is no more a puzzle than anything else is. I mean, we don’t know what causes the Down syndrome that my daughter has, nor what really caused my own deafness or bi-polar disorder. Who knows? Might have been environmental, might have been genetic; it’s a puzzle.

We have never known exactly how my daughter’s Down syndrome would unfold (we knew that she was coming with an extra chromosome via amniocentesis), nor did my parents know how my deafness would expand and surround my reality.

I wonder:

Does not understanding something, or not having all the answers (that would be nice to have sometimes) mean that you need to eradicate that which you don’t understand?

Does not knowing how exactly Autism will unfold and shape the way a person experiences life mean you need to not support the life that is lived with Autism?

Furthermore, is it fair or right to support an organization like Autism Speaks and continue to “light it up blue” because they crave fatter cushions upon which to sit, and ever-more research, media and advertising to perpetuate their medical model of disability?

Light It Up Blue

Autism Speaks is not about understanding and accepting Autistics. The 3.8% that they actually spend on service grants for families and autistics shows that more clearly than words could.

Please don’t believe or buy into their hype; do your homework and tune in to the adult Autistics in the links below for more information.

Michelle Sutton (whose writing I love) wrote this: Blue Lights Won’t Help Me.

And More Super Awesome Posts to Check Out That are BY Autistic People:

#boycottautismspeaks – Boycott Autism Speaks (the website dedicated to information regarding why Autism Speaks should be boycotted)

Autism Speaks and Representation, by Autistic Hoya

#Boycottautismspeaks: Communicating a Counternarrative Through Cyberactivism and Connective Action, by Sarah Parsloe

A big, beautiful collection of essays that are Anti-Autism Speaks: click here

ASAN Condemns White House Autism Proclamation

Autistic People, Parents and Advocates Speak About Autism Speaks, by The Art of Autism

 

Meriah
Meriah Nichols is teacher and artist who lives in a yurt off the grid. She is deaf, has 3 kids (one with Down syndrome) and a lot of chickens. She writes about travel, disability, and getting dishes done. She likes her tea Earl Grey and hot.
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@meriahnichols

#deaf mom, teacher & #disability activist, living in a yurt #offthegrid. 3 kids (1 with #downsyndrome), a camera and a lot of chickens. Never a dull moment
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13 Comments

  • Autistics run the REAL Autism Speaks – Autistics Speaking For Ourselves – an older facebook group, based in Ireland, Europe- https://www.facebook.com/groups/Autism.Speaks.Autistics.Speaking.for.Ourselves/ , https://www.facebook.com/AutisticUnion/ and https://www.facebook.com/groups/Goldforautism/ We call it Worldwide Autistic Acceptance Day (April 2nd) and World Autistic Acceptance Month- we are NOT Blue causing depression,nor broken puzzle pieces,nor to be cured,eradicated,eliminated and bleached. Our Rights as Aspies, Auties and Cousins to Neurodivergent life and our own representative bodies of, for, and by – controlled by a majority of autistics is Guaranteed under the United Nations Convention on the Human Rights of Disabled person – We alone as service users,and self and peer advocates have the right to be consulted and participate in decisions on our own kind at ALL Levels of Government, State and Public funded bodies. Groups that do not have a clear majority of us in charge do NOT represent us, and should cease fraudulently claiming to be autism or autistic bodies.

  • Is it common and acceptable to refer to people with Autism as “Autistics”? I’m sure that some people with Autism and advocates use the term, but I’m wondering if it is a universal thing. While I don’t have a strong personal connection to Autism advocacy, I’ve never heard the word “Autistic” used as a noun (as in, “a program designed for Autistics”), only as an adjective (i.e. “a program designed for Autistic people”). Saying “Autistics” seems to reduce a person’s entire existence to this one characteristic… To draw an analogy, I feel like it would be odd to refer to people with Down Syndrome as “Down Syndromes”, don’t you? Like, “She was just enrolled in a program for Down Syndromes” would come across as very odd to me. I feel the same way about saying “blacks”, “gays”, etc. It just seems to obscure the fact that we’re ultimately talking about *people* who just happen to one of their thousands of individual characteristics in common.

  • Autism Speaks is terrible, but the puzzle piece is not a symbol for just Autism Speaks. It is a symbol of autism in general and was created by The National Autistic Society in London back in the 60s. My family will continue to spread blue and puzzle pieces during April for my cousin with autism and donate to meaningful organizations.

  • The one thing that I find hard to agree with in this article is “don’t support because it is a group not run by people with autism”. Isn’t that like saying that most cancer research foundations are crap because they are not run by people with cancer? I also feel like if they are raising millions of dollars- then that 4% is a lot more than you would have without the support.
    Research is important as well- just think of how the workd once was BEFORE the research. No one knee how to care for or educate children with autism, they were locked up in institutions and forgotten, because of research, we are where we are today. I honestly believe that MOST foundations for almost EVERY cause and disease- they majority of the funding goes towards research. Because it is meant to be about a better tomorrow.
    I’m not really disputing that these organizations are “bad” because I don’t know enough about them to have that kind of opinion- I just do not necessarily agree with the reasons you pointed out as why they are bad. Something to ponder. God Bless!

    • A better analogy to a group led by one who is not a member of it in this case would be an organization that is supposedly for advancement of African Americans – like the NAACP – led by whites. Or an organization that is to serve the deaf that’s run by hearing people.

      I don’t think I’ve said anywhere in the post that research is a bad thing, per so – it’s not. I think it’s necessary. But what I strongly disagree with is when an organization spends 4% of its money on services, when that’s supposedly what the organization is primarily about, AND it’s what most of the people who are fundraising are raising money for.

      • It is a fundamental principal of International law that were the rights of person with disability are concerned ONLY organisations and groups of persons with the disability as service users and/or peer and self advocates are to be consulted and involved in decision-making at ALL Levels of Government, state and public-funded bodies.

        Only us can chose and direct what our needs are, NOT bodies whose main aim is to eradicate, eliminate, cure us or rid the planet of us and our rights. Bodies whom make claims to advocate and represent us are SCAM ARTISTS and Fraudulently misrepresenting us, and we stand up and point this out.

        If such bodies do not have a majority of us in the spectrum in charge they are simple parents and professionals operating as IF a charity for promoting their issues against us.

        Under the United Nations Convention on the Human Rights of Persons with Disability, the United Nations Standard Rules for PwD before and since the 60’s the Principal of Independent living is clear NOTHING ABOUT US WITHOUT US, and dare I add BY a majority of US!!!

        Autistics know and understand OUR rights and expect Mundanes to accept our choices and our needs and not tell us what they do not want to allow us as they have different objects incompatible with our very principals and identity.

      • If a proportion of the research was in order to help us, rather then destroy us don’t think anyone would have a problem. The tone, and anti-autistic feel, and they way they deliberately exclude and demonise us, is however a big problem. If they had a majority of us allowed in there to disability proof their attitudes, instead of scaring people, then we would not be there. There are many groups run by ourselves in the majority, they way it is supposed to be and do not have the aires and graces of scamartists attacking us! :- https://www.youtube.com/watch?v=9UgLnWJFGHQ

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