There is no Action in Awareness

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Wear blue a few years ago for Autism Awareness Day.

Tomorrow, April 2, is World Autism Awareness Day, and April is Autism Awareness Month. As much as I hate to admit this, I don’t care – at least not as much as I used to.

I have deleted “I don’t care” and retyped it several times now because I do care and I don’t care all at the same time. And I feel really guilty for saying I don’t care.

For many years after Evan was diagnosed with autism, we were gung-ho participants in “lighting it up blue.” This autism awareness campaign, launched by Autism Speaks, encourages people to wear blue on April 2. Plus, well-known national and international landmarks, such as the Empire State Building, will be illuminated in blue that day too.

In the past we bought blue porch lights for our house, and our neighbors asked friends and family to wear blue in support of Evan and those with autism.

It’s not that I don’t care about spreading awareness– there is still plenty of ignorance. But this year I find myself less than excited about Autism Awareness Day and even the entire month devoted to autism awareness.

Why did my attitude turn so blasé? Lots of reasons. To sum them up, we need to get beyond awareness and push toward acceptance and inclusion not only for those with autism but all people with disabilities.

I think, or at least hope, that we as a society are pretty well aware of autism. It’s constantly in the news, and I see people with autism everywhere.

Recently it hit me that I feel like autism is everywhere because in my world it is everywhere. Evan is in a class with kids with autism. Many of my friends have a child with autism because we’ve met through our autistic kids. I follow other autism bloggers and my Google news feed sends me daily updates about autism.

So yes, for me, autism is everywhere. But what about you? If you don’t live with it, do you feel like it’s in the forefront? In my world, people are aware. But, the more I think about it, the more my world is just a big autism bubble.

I feel guilty about saying “I don’t care” when I think about the parents of children newly diagnosed with autism. I clearly remember the overwhelming thoughts and feelings of confusion, fear and a sense of being alone. These parents need an autism awareness day to have a connection to others and they need to feel like the world recognizes them – even if it is only with blue lights and blue shirts and even if it’s only for a day.

This is where my mixed feelings about autism awareness come in. We still need to build awareness (especially among those who say things like “Autism is just an excuse for bad parenting”) but I’m tired of seeing a day or a month being devoted to a condition. What about the rest of the year, and what about all the other disabilities?

I sometimes get tired of talking, hearing and reading about autism. Autism affects millions, which means that it rightfully gets a lot more attention than other disabilities such as Down syndrome, cerebral palsy, dyslexia or the hundreds of other common and not-so-common medically-related challenges that our relatives, friends and neighbors live with.

Did you know that one in five Americans lives with some kind of a disability? Do you know that a majority of them have said they don’t feel welcome in their community? I didn’t either, until I was doing research for a magazine article.

While working on the story, I interviewed a very articulate disability advocate. What stuck with me most was when he said: “The tricky thing about disability awareness is that it tends to make a person’s disability central, which is the last thing that I want.

“I am a husband, father, grandfather, friend, brother, transportation manager, congregation member, teller of and listener to jokes, weather fanatic… who happens to be blind,” he said.

The best insight often comes from those with disabilities.  It’s one thing to be aware of something – but there is no action in awareness.

So what’s the next step? Asking and then, most important, listening. The opinions of those with special needs must be heard. Here are two very different voices from the disabled community that are worth reading. Beyond Autism Awareness Month and Why we Still Need Awareness.

Will I wear blue on Saturday? Probably. But, more important, I will continue to find ways to help my community go beyond awareness and embrace acceptance and inclusion for all.