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Unless you’ve been living under a rock, or are brand new to the special needs world, you know about the “Light It Up Blue” campaign. In fact, if you’ve been paying attention, you’ve likely been repeatedly hit over the head with the demand to “Light it Up Blue.” This campaign started by Autism Speaks has taken on a life of its own, epically proportioned and mythical in stature. You can’t swing a cat (it’s a metaphor, People. No cats were hurt in the writing of this blog!) without some group admonishing you to Buy This Widget to Light it Up Blue! From light bulbs to t-shirts to bumper stickers, even notepads. You name it, and it has been overtly marketed to the growing autism community.
But you won’t find any of that junk around here.
Not only do I greatly resent the use of autism as a marketing gimmick, I resent the hell out of these companies playing on my son’s disability to meet their bottom line and thrill their shareholders. This isn’t just a new shirt or a couple of light bulbs – this is my child’s life. Nothing to make money off of, and nothing to pander to the masses.
The sales of those blue light bulbs from Home Depot: what does it accomplish? Well, Autism Speaks gets a hell of a lot of additional exposure; not sure they really need it. An interesting coincidence is that Bernie Marcus, the co-founder of the Home Depot, sits on the Executive Board of Autism Speaks. If one was jaded and disillusioned, one might begin to wonder if the point of Lighting it Up Blue is really awareness or increasing light bulb sales. After all, how much of the proceeds of those bulbs get directly into the hands of an autism family? Not much, apparently. You can look for yourself, here, and see Autism Speaks less than impressive record of getting money and services directly to those families with autism. They believe in curing autism and for those of us who don’t think it needs to be cured, we find their mission more than a bit offensive. Likewise with their constant refusal to allow adult self-advocating autistics to join their board and have input (John Elder Robinson has been added to the board, but he self-identifies as an Aspie, as opposed to an Autie). If you are at all aware of the struggles within the Autistic community, you know that AS and its campaign has our community divided into two camps: the pro-AS and anti-AS groups. Of course, if you know our community, you know this is but one such dividing issue.
I don’t advertise my child’s autism. Anyone who knows us, spends more than two minutes with us, or hears my child speak, knows that there is something “different” about my child. They may not know what is different, but my child has enough traits and is old enough to where his actions can no longer be passed off as age-appropriate, or merely quirky. My son, however, has no idea that he is anything other than a typical kiddo. He has never asked, or expressed any self-awareness of the fact that he is not. Why would I “out” him? I would no more slap an autism ribbon on his chest or my vehicle than I would plaster my vehicle or child with a high cholesterol sticker, an enuresis message, or an ADHD logo. Strangers don’t need to know specifics about my kid. Period. It does nothing to spread awareness. If my son acts inappropriate, it spreads stereotypes. If my son acts wonderfully behaved in a situation, it may set unrealistic expectations.
And that’s the other big issue I have with the Blue porch light brigade: How is your blue light TEACHING, INSPIRING, EXPLAINING, or CHANGING PERSPECTIVES of the autism spectrum? Is it opening lines of communication? Your neighbors likely already know about your child. Since you’ve swapped your fluorescent halogen for azure, has anyone come up to you and asked you questions about autism like: how can we better accommodate your child, or do you have a plan in case (s)he bolts, or has this empowered ANYONE to invite your child to a birthday party that (s)he would normally be excluded from? Really – I’d like to know.
That’s why we don’t participate in Autism Awareness Month. First of all, what is “awareness” to people whose lives are not touched by autism? Unless you’re a cave dweller ala Howard Hughes, you are aware of autism. If you are an autism family, you have awareness coming out of your ears. There is hope to change Awareness to Acceptance. I don’t really see that working out well. Do we care whether or not they can bring themselves to “accept” our children? If they don’t see them for the beautiful, special children that they are? Forget them! We need Autism Funding Month, or Help an Autistic Family Pay for Therapy Month, or Invite an Autistic Kid to Your Birthday Party Month.
Until our kids are fully included, integrated and valued by society; until organizations like AS recognize the “Nothing About Us Without Us” call by the adult autistic advocates; until autism stereotypes are torn apart words like “Acceptance” and “Awareness” are just that: words.
Our children deserve more than empty buzz words and slogans. They deserve more than porch light advocacy.
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A site to discuss and learn about TRICARE Philippines Policies and Issues that are often times implemented in secret by the Defense Health Agency (DHA). Policies that result in payments at about 7.7% and 3.8% of what they should be or $328 per under 65 person instead of the expected $4,261 & $328 per over 65 person instead of the expected $8,650.
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Retired Pediatric Speech-Language Pathologist with 28 years experience …. still posting occasionally about apps & AAC stuff.
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