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nightengalesknd

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Sep. 3rd, 2016

I saw it first on CNN. A “feel good” story. Autism was in the title so I clicked.

The gist is, a group of college football players visited a middle school. One of the footballers saw a child sitting alone in the cafeteria and joined him. An autistic child. They apparently had a whole conversation. Someone took a picture and sent it to the child’s mother. She was thrilled because she asks her son every day if he eats lunch with someone and he often eats alone. He doesn’t seem to mind. But she was happy to know that, at least for one day, she didn’t have to worry about him eating lunch alone.

Cue “awws” across the internet.

As the next step in my morning internet ritual, I clicked onto the blog of a mother of a child with a disability. She had the story posted with commentary that people should use the photo to talk to their (non-disabled) children about including those with disabilities. She noted the “warm fuzzy” factor but commented the story didn’t go far enough. How about tomorrow? What do we do to make sure this child has someone to sit with tomorrow?

I responded, pointing out that the story didn’t really give me the warm fuzzies in the first place. It more makes me tired. Another story about someone doing something nice to a disabled person, without any indication about how the disabled person felt about it.

And furthermore, no evidence that what was done was even “nice.”

She responded that stories like this seldom do quote the child with the disability, but that the child had seemed receptive.

Shouldn’t the bar be much higher than “receptive,” though? Shouldn’t it be “liked” or “enjoyed” or “wanted?”

Later in the day, I saw another post about the story, this from a radical disability blogger who often writes about how people accost him, a wheelchair user, with questions, comments and assumptions in public.

He wrote about a “basic question” that no one asked, which is why this student was sitting alone in the first place. He does question if the child wanted to be alone, but largely framed the question as to why the school staff hadn’t done something about his daily aloneness.

I think “what does the child want” is the even more basic question that should have been asked, not just before writing this story, but even earlier, when writing up an IEP or questioning the child on returning home from school at the end of the day. I frame this in the same way I view other “help” foisted onto people with disabilities without checking first to see if it is wanted or needed. We shouldn’t help little old ladies across streets they don’t want to cross, and we also shouldn’t foist company onto people in their “down time.”

As an autistic person, I can think of lots of reason why this child might have preferred to be sitting alone. His other option might have been sitting with bullies, which was my only other option at his age. Of course, the adults didn’t see the kids talking to me as bullies. They saw them as nice. Nice people peppering me with questions about why I did all the things I did differently than everyone else, from my food, my wardrobe and my vocabulary. Alone was certainly preferable to that, and if this child is being bullied, that should be addressed.

But there are other reasons for a person, any person but most specifically, an autistic person, to seek solitude. Perhaps the only choices of people to talk with have such vastly different interests there would be no topic of conversation. Perhaps the sound of others chewing food is distressing. Perhaps one just needs some time to recharge and think, without having to process language and social cues.

Karla Fisher has a great visual she uses for IEP advocacy called “Our breaks are not like NT breaks.” She points out that, for an autistic person, lunch and recess can be the most stressful times of the day.

On a regular basis at work, I hear about children who are alone at lunch and recess, from their worried parents. I always ask the child what they like to do at those times. Sometimes I hear stories of wanting to play but being excluded. Often I hear stories of not being able to find someone who wants to play or do similar things. And then I hear about the child who prefers to spend recess looking for rocks – alone. It always seems I am the first person to have ever asked the question.

The autistic community has a solution for this, for autistic events. They are Color Communication Badges. With green displayed, the message is to approach. With yellow, only known people are welcomed. With red displayed, the wearer is to be left alone except in direst emergency. This makes it easy at autistic events, to know if a person sitting alone would relish or loathe company.

Why don’t we have something like that at schools? Color badges or seat markers or perhaps a choice chart the child can use in class before recess

I’ve been asked to speak on the topic of autism and advocacy later this fall, at a professional conference on autism and transition to adult lives. I’m putting together a presentation they aren’t going to expect, including a brief history of the disability rights and neurodiversity movements, profiles of some Autistic activists, and some hints about how to evaluate advocacy organizations. And then I am going to talk about how non-autistic parents and professionals can support advocacy of autistic people.

A big part of supporting advocacy is listening to what people say about themselves, their lives and their preferences. They may say it using words to senators, or they may say it using gestures to their preschool teachers. A hand held up is advocacy. Bringing shoes to the door is advocacy. “No!” is advocacy. It is important to teach advocacy, but equally important to teach others to listen for it and to it.

If an advocate sends a message, but no one respects it, does it make a sound?

So you see, we don’t really know what the story is here at all.

It might be:

Autistic child delighted to have footballer join him for lunch!

And that would be grand. I would feel good. (I would still ask the question of if he wants to eat lunch alone on other days, though.)

Or it could be:

Football player invaded privacy of autistic student!

Or perhaps, there could have been another story:

Football player respected autistic child’s preference and right for privacy!

(That’s the story I want to read, some time. That’s the story I never see written. It would be a rare event, Man Bites Dog level of novelty that should make top headlines)

But we just don’t know. We know how the child’s mother, the cafeteria worker, the football player, and now, the entire internet felt, but not the actual person involved.

And that’s a huge problem. Yes, in stories like this, the child is seldom interviewed or quoted. That’s the problem. People with disabilities are so seldom interviewed in stories that are about things we do, and even less so in stories that are about things people do for us, or to us.

We’re reduced to objects.

And

I object
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