Sunday, April 3, 2016

Autistic and Disability Culture - The Forgotten Cultural Competencies

This is the first post in a series of posts for Autism Acceptance Month unpacking the impact of being autistic in education and why we need more autistics in education at all levels.

I often get into conversations about cultural competency on Twitter and elsewhere and find that the voice of disability culture is un-heard and unrecognized in the conversation. Teachers who are otherwise very aware and active in trying to be culturally competent are completely unaware of the inherent biases of the educational system against Autistic and disability culture. So, piggy-backing on the excellent post by my friend Nightengale of Samarkand about practicing cultural competency in medicine, and in honor of April and Autism Acceptance, I want to see if I can unpack the concept for my fellow educators.

 First let's look at how educators encourage students to demonstrate and share their culture:
1. Sharing their food.
Many autistics have specific food preferences due to sensory sensitivities. These may have to do with texture, color, taste, or smell. Teachers at the elementary level could capitalize on this to re-frame the autistic students as experts to teach about the five senses. But that's not what happens. Seen as a medical deficit instead of cultural difference, students are given behavior plans to learn to eat what their typical peers eat in the way that their typical peers eat it. We would chastise a teacher for doing the same thing to a student from China who insisted on eating traditional noodles with chopsticks. We would encourage that student to share their tradition. But it is seen as perfectly acceptable to do to an Autistic student. Students with a variety of disabilities require specialized diets and food preparation for a variety of reasons in order to eat safely at school. Their peers are naturally curious about these differences, as much as they are curious about any other difference in food. While it may not be safe for these students to share food with peers, making it taboo to talk about leads to fear. Yet, many teachers are afraid, because they have limited understanding beyond the inservice they received about how the student could die if they let them near the wrong food (assuming they have any training at all.) This leads to unnecessary segregation: from separate tables to students who are required to be fed by nurses or even eat in the nurses office. This creates a clear and unnecessary "us" vs "them" distinction in the name of "safety."

2. Sharing their language.
Many people with disabilities are able to very articulately describe their experiences, but for many autistics and other people with disabilities, spoken language is not their primary means of communication. And most special educators will tell you "all behavior is communication." For many non-speaking autistics, physical and visual interaction with objects and people are meaningful forms of communication, so are scripting and echolalia. Yet, most speaking people are unwilling to listen to that communication unless it is translated for them into spoken language. Special education has only one translation manual, it's called the FBA, and it says that non-speaking students are only saying one of 4 things in every communication interaction: "I want this," "I want your attention," "stop this," or "this feels good." This problematic belief is what justifies providing limited vocabulary and not introducing robust AAC. When we ask a student from France to share something of their language, we are not surprised to hear greetings, stories, and poetry. When a student who uses AAC does the same, it makes the local and sometimes national news. The disability community refers to this as "Inspiration Porn."

But there is an even more insidious worm than the problems I have laid out above, although it is integral to all of the examples listed. The problem is not just that Autistic and disability culture and excluded from the conversation about cultural competence. The problem is not just that Autistic and disability cultural differences are treated as medical or educational deficits to be remedied or swept out of sight in the name of "safety." The real problem is that Autistic and disability culture is not on most educators' radar at all, even that of special educators (perhaps especially not that of special educators.)

Culturally inclusive educators do not teach about autistic and disability culture. Autism awareness in schools has everything to do with wearing blue on April 2 and nothing to do with learning about Autistic Culture. Even in special education classes specially designed for Autistic students, they do not learn any disability rights history. They might learn about the civil rights movement (if they get that much access to the general education curriculum, many don't.) But they won't learn about how their own history is intertwined with that history. They won't learn about the community that exists (mostly online) out there if they chose to get involved in advocacy.

Some of this is unintentional. Many teachers simply do not know about the history of the disability rights movement. Many, despite their best intentions, still think of their students as children. I have had conversations with many very well meaning teachers where I have to remind them repeatedly that I am talking about the student getting access to their community, not just the parent. But some of it is intentional. I have been blocked from providing inservice about disability history because it is "too political." Disability history is not pretty. What has been done to people with disabilities by well meaning professionals is not something to be proud of. But, as professionals, we have to own that history if we are going to change it. It is no different that any of the other hard parts of our history. Or am I the only one who reads Satayana any more?

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