Thursday, April 10, 2014

Best Article On "Autism Awareness"

Amy Sequenzia, - April 1, 2014

I have read many great articles and blog posts explaining how Autism is misunderstood, how Autism Awareness is misconstrued, and how a prominent organization like Autism Speaks can come to be viewed as the enemy by the people it purports to serve. This article does the best job at all of it that I have ever seen. It’s not just a specific set of policy disagreements … though a few key changes would make a big difference. It is really a whole different paradigm. At a certain point, I think people are either going to “get it” or they won’t. But first they have to be introduced to the different paradigm. Amy Sequenzia’s post is a good start. Here is another one, which I recommended last month.

Photo Of The Day ... And A Thought

Young woman with blonde hair, smiling, sitting in a blue manual wheelchair, taking a "selfie"

I usually don’t like captions with disability photos, but this is a good one:


"My wheelchair and I... " This is the kind of thing that makes nonsense out of the idea that wheelchairs, canes, walkers, and the like are bad things ... that everyone who uses them are "confined", and want nothing more than to escape from them and discard them one day. It's so much more complicated, subtle, and varied a relationship than that.

The Airport Analogy

Young girl lying face-first over a rolling suitcase being pulled by her father
The best known attempt to explain disability to non-disabled people is probably The Spoon Theory which describes chronic illness … and arguably disability ... as an exercise in careful energy conservation with limited resources. In the story, a woman with chronic illness uses a bundle of spoons to illustrate the idea of stamina being in such limited supply that you constantly have to make agonizing choices about what to “spend” them on, because there is never enough energy a.k.a. “spoons” to get through a typical day. What will fall by the wayside today? If I cook a full, nutritious meal, will I be too tired to benefit from it? If I attend a family birthday, will I spend the next day in bed?

I love the “Spoon Theory”, but I would like to suggest another analogy to help non-disabled people understand what it is like to live with a physical disability or chronic illness. I call it the "Airport Analogy”. Because, when you have a physical disability or chronic illness, every day feels like a day of air travel.

Air travel is this weird combination of physical exertion, idleness, boredom, panic, and bursts of intense mental frustration. Meanwhile, everyone is judging you, and you are judging everyone else, too.

Air travel is empowering … New York to Los Angeles in less than a day! Air travel is also utterly humiliating. The people you have paid hundreds of dollars to serve you, treat you like cattle, and speak to you like you’re a five year old. At the end, you have accomplished something extraordinary, yet at the same time somehow mundane and exhausting.

Most days with a disability are like this, no matter where we are or what we are doing. When you have a disability, every day is like a day of air travel.

Both disability and air travel are physically tiring. Both are also mentally exhausting. Some days, air travel isn’t so bad, when things go right. Other times, it’s terrible … usually due to a toxic mix of organizational failures and individual stupidity and insensitivity. Life with a disability is like that, too. There are good days and bad days, and you can rarely predict them. There is the strain of trying to remain calm and civil, when you just want to scream at people. There is the feeling of being subjected to surface pleasantries that turn out to be paper thin. There is the feeling of being herded around like so much furniture for the sake of other peoples’ convenience, even though the whole purpose of their work is to serve you. And being spoken to as if you are a possibly unstable child. In disability as in air travel, the customer is often wrong, and the provider is boss.

On the other hand …

As bad as both disability and air travel can be … people go through them all the time.

Some people travel by air a lot, a few nearly every day. Think business travelers. They learn coping strategies. They pack light. They buy rolling suitcases. They know the best times to arrive and where to park. They can find the best place to get a coffee in like 20 different airports. They know which airlines have the best customer service, which ones are good in a crisis. They develop effective negotiating skills. Some of them even develop thicker skin, so they are less bothered by stuff. They actually learn to appreciate some aspects of the experience … turning negatives into positives and taking pleasures where they can find them. Some come to enjoy their travel time, even if it’s still tiring and sometimes frustrating. It becomes part of their routine, part of who they are.

It’s much the same with disability. A non-disabled person can get a sense of the difficulty of living with a disability, through analogies like the "Spoon Theory" and maybe this "Airport Analogy”. But, it is a mistake to evaluate either disability or air travel by the limited and disadvantaged perspective of the inexperienced participant. Once-a-year vacationers tend to have a much worse experience with air travel than regular business fliers. Likewise, as many have pointed out, “wheelchair for a day” events and brief blindfold experiments can make disability seem much worse than it is for most of us, because if we have been disabled for more than a couple of years, we have learned the ropes.

I really think that the “Airport Analogy” could be a useful tool for better understanding. A lot of people can relate to air travel, and like disability itself, it has both negatives and positives.

What do you think? Does the “Airport Analogy” work for you? Or, do you have another idea to make life with a disability easier for non-disabled people to comprehend?