A SENSORY PROCESSING/NEURODIVERSITY MANIFESTO

My challenges have always been social–neurological–ethical-familial, never academic. My first encounter with academic challenges came when I – in my third and final (and, finally, successful [after a year as a runaway in the East Village]) attempt at high school – landed in a struggling Quaker boarding school that accepted a lot of students with learning differences. The dean there, the man I now call “Dad,” shepherded his motley crew of misfits with infinite love and respect. Students like me who were fleeing troubled, if wealthy, families, were treated just the same as wealthy, healthy, happy-familied students, scholarship students, “learning-disabled” students, all combinations thereof...all students, period. That is to say, equality really happened under his watch.

Until I began raising my son, who happens to have some learning differences, I actually never knew that the official term for such differences is “learning disability.” You see, Dwight, our dean and my “Dad,” referred to students who learned differently from the "average" student as having...wait for it...”learning differences.” And I spent most of my life thinking that this was how everybody thought about the matter.

How much did that linguistic switch mean to those students, my friends, some of whom had felt “less-than” most of their lives because they didn’t process and/or express information in just the same way as everybody else? You can bet it meant a great deal.

G’s early life involved quite a lot of testing, always at the request of his teachers. I began early on to use different terms for many of the labels that were used by professionals for my son and, later, me. I’ve suggested -- whenever the online or in-person conversation comes up -- that we use the phrase “Sensory Processing Differences” in place of “Sensory Processing Disorder,” and people have generally agreed. I do understand that there are contexts in which a disability label may be more effective in managing our differences. However, for the sake of our selves, and our communities, and our children, I contend that the following labels need to be changed, for daily use, if not for services and adaptations (and this is by no means a comprehensive list, just getting this here manifesto going!):

Sensory Processing Disorder              to                     Sensory Processing Differences

Autism Spectrum Disorder                 to                     Autism Spectrum

Accommodations                                to                     Adaptations

Disability                                             to                     Diffability 

Disabled                                              to                     Differently-Abled

Yes, we are different. That doesn’t always make us fundamentally disordered or syndromed.

We are all different. All that difference is not the same. Some of it is MUCH harder, because this world was constructed primarily by people who are embodied and think in “normal” ways. The adaptations some of us may need are framed as “special” “services” because of the way this world is designed – and for whom – NOT BECAUSE THERE IS ANYTHING WRONG WITH US.

Here’s an example I see as very simple and non-loaded: because of my Sensory Processing Differences, when I go into a big box store the artificial scents used in cleaners and scented candles etc. give me an instant migraine. Does this make me defective? In my humble opinion, it makes me more of a canary in a coal mine: Nobody should be breathing those chemicals...and it’s not “disordered” to know so in a very visceral way. 

Another thing about language: it’s okay to ask! There’s been so much discussion, much of it rancorous, around whether or not to use person-first language. How about using the language that the person/people in question prefer/s? I, for one, aim to use language that is respectful and egalitarian. When I speak with others, I am willing to use the language they deem respectful and egalitarian, so long as it does not demean me.

Changing the ways we talk about difference are an important step toward healing this world so that we are all included in the spectrum of equality. Although there is some weight to having “differences,” the word itself also implies variety and, in some important ways, validity. We must continue striving to speak and write in ways that are increasingly fair, as language evolves to better fit reality..

You’ll note I’ve no cute rainbow graphic for this Full Spectrum manifesto. (Please see Figure I.)

                                                    Figure I – No Cute Rainbow Graphic

...because the way we talk about stuff is serious.

Love,

Full Spectrum Mama

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