I did not Light it Up Blue.
There is a reason, and it is more simple than you might think. It is not a complicated, political stance, or a lack of caring. I am all about awareness, after all, it is a major reason I am blogging. It is related to my own lack of awareness. Not of autism, but of the Light it up Blue campaign. I have seen a lot of references to it on Twitter over the last month. But, before that, I don’t remember hearing about it.
Mainly, I did not light it up blue because I am too busy living life, working, and taking care of my family to find the time to research the deeper message of the campaign. And, I have been too busy to go to buy a blue light bulb. That may sound ridiculous, but it’s true.
Today I was thinking, if I am barely aware of the Light it up Blue campaign and what it means, then how many other people who don’t have autism in their families’ are also unaware? So I dug a little to find out more info, fact and opinion, that I will share here.
Today, April 2, is World Autism Awareness Day (WAAD). It was designated by the United Nations General Assembly at the end of 2007. According to Wikipedia, the four main components of the resolution were:
the establishment of 2 April as WAAD
participation of UN organizations, member states, NGOs and all private & public organizations in WAAD
raise awareness of autism on all levels in society
to ask the UN Secretary-General to deliver this message to member states and all other UN organs.
In the United States, April is National Autism Awareness Month. In 2010, Autism Speaks launched the Light it Up Blue campaign to raise further awareness of autism. That should be a good thing, right? When I searched the internet for “light it up blue” what I found was not all warm and fuzzy.
My search immediately found an article on the Huffington Post titled, I will not ‘Light it up Blue‘, written by Michelle Sutton, a writer and activist from Australia. She says, “My kids don’t need #AutismAwareness — they need #AutismAcceptance.” The author goes explains why she will not support an organization that tells people her life is difficult because of her children and that their lives are hopeless unless people donate money to save them. The organization she is referring to is Autism Speaks.
Another article I found was, My three daughters are autistic. I despise Autism Awareness Month. The author, Kim Stagliano, resents that Autism Awareness month comes across as a festive celebration. Her daughters are 20, 18, and 14. She explains that she has to cut their food, tend to their monthly feminine needs, and bathe them. As Jessica’s mother, I can really relate to this because I do the same for Jessica. However, I cannot imagine the weight of that responsibility x 3. She describes her feelings this way.
They will need that daily living assistance forever; when I die, a stranger will have to do those things for them. That is why I bristle at the festive tone of April, the suggestion that the circumstances of my daughters’ existences are to be celebrated. For me, this should be a month of solemn acknowledgement and education about a global crisis.
Then there was this article, potentially my favorite: “light it up blue” isn’t autism awareness, it’s advertising for Autism Speaks, by Matt Carey. In reference to the United Nations Autism Awareness Day, he says,
…nowhere do you see any mention of Autism Speaks nor statements that we should “light it up blue”. Yet over the years, Autism Speaks has made autism awareness into ‘autism speaks’ awareness…Autism Speaks is out there asking people to shine blue lights for autism awareness. A whole section of their shop…is devoted to ‘light it up blue’ merchandise. All complete with the Autism Speaks logo.
In the text from the Autism Speaks web page on how to ‘light it up blue’…each section brings you back to Autism Speaks. Shine a blue light..and project the Autism Speaks logo. Wear blue, including autism speaks pins or accessories. Blue=Autism speaks, basically.
One of Matt Carey’s beefs with Autism Speaks is that over the years they perpetuated the vaccines-cause-autism idea. Also, according to Matt, “…Autism Speaks does not have autistic voices in important positions within the organization, an amazing position given the sizable self-advocate population they claim to serve.” Matt points out that Autism Speaks has a history of perpetuating stigmatizing messages such as this truly disturbing video they produced called, I Am Autism. I stopped watching after a minute.
Matt’s suggestion for April 2 is this, “…think globally, act locally…I bet you have an autism school in your area and autism schools need donations. I bet there are adult programs in your area that could use some support.” Well sadly for us, we do not have an autism school in our area. We do not have adult programs for autism in our area. What we need is help and support in developing these programs. These programs are needed NOW.
Kim’s advice for April 2, “make a donation to a local organization that is actively helping families in your area…give to an organization that provides service dogs for autistic children, or volunteer as an autism buddy.”
WHAT DOES THE WORLD OF AUTISM NEED
Michelle’s final word on the matter is: “My kids don’t need curing. They don’t need fixing. They don’t need changing. It is society that needs to change, and acceptance of all is the key.”
Kim summarizes, “What the autism community needs isn’t a party, but a sense of urgency and true crisis. They need advocates committed not only to getting them the acceptance they deserve, but also the critical help they require to survive, in the form of social programs, education, safety and employment opportunities.”
My feelings on what we need is similar. I know the world wants a ‘cure’ for autism. For Jessica, there is no “cure”. For many out there, there is no cure. We cannot continue to sit around and wait on a cure. We need exactly what Kim said; social programs, education, safety and employment opportunities. And we need that right now!
Next – A Vision of Literacy
If you are new to Autism After School – The Transitional Truth, Jess is an autistic and visually impaired young adult. I am telling our story to help other parents and professionals learn from our journey. My hope is to help others better prepare for experiences within the educational system and the transition to adulthood.