I must interrupt my previously planned programming regarding the recording of Barb’s audio book, I might be you and mention the “light it up blue” campaign from Autism Speaks, as April is fast upon us. I know a great many, really well-meaning people will be “lighting it up blue” on at least one day in April, but I urge you to reconsider. For those of you who love reading links to other relevant posts on the topic, here you go…
Autism Acceptance Day ~ This blog was started by Paula Durbin-Westby and originally began as a way to counter the “awareness” that Autism Speaks suggests it is promoting.
Tone it Down Taupe This April!! ~ From Radical Neurodivergence Speaking an alternative to the “light it up blue” campaign! This is a MUST read and it’s also very funny.
For those of you who can’t cope with yet another link, let me try to explain. “Lighting it up blue” seems like a perfectly benign and thoughtful thing to do, yet what is meant as a token gesture of caring and thoughtfulness, is actually anything but that. Lighting it up blue is an ad campaign by Autism Speaks. It is less about bringing any real awareness about autism or the lives being led by those who are Autistic and everything about branding and promoting that brand that is Autism Speaks. It is a brilliant campaign. Most people who “light it up blue” believe they are showing solidarity and support to Autistic people. Most people would be shocked to know that Autism Speaks is the single most powerful organization promoting fear of autism by using language to describe autism as a “terrifying epidemic,” “a crisis” and Autistic people as “burdens” to society.
This quote is taken from Autism Speaks website:
Ultimately, you may feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism.”
This sentence encapsulates everything I once believed and thought about autism and my autistic child. This idea is incredibly destructive and insidious in it’s seemingly benign wording, but it is anything but that. If we separate out the person from their neurology, what do we have? How do we do that? What exactly does this mean? This sentence from Autism Speaks is exactly what is wrong with the organization. You cannot accept your child while NOT accepting their neurology. It is not possible. Yet this is exactly what I believed for many years to the detriment of my child’s well-being, to the detriment of her self-esteem, to the detriment of who and what she is. But I didn’t know that.
“Lighting it up blue” is not helping any of our children or those who are Autistic. The only one who is benefiting from this campaign is the organization who came up with it – Autism Speaks.
So before you head to the hardware store to find some blue light bulbs or open your check book, please, reconsider. Think how you would feel if this campaign was about your neurology. Because as Barb Rentenbach has so beautifully written in her book that I am currently recording the audio version for,
I might be you.