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

Welcome to the Sensory Blog Hop -- a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it's like to have Sensory Processing Disorder and to raise a sensory kiddo!Want to join in on next month's Sensory Blog Hop? Click here!

An InLinkz Link-up

DIFFERENT

I recently read a book review by a person with sensory processing differences bemoaning a new compilation of essays by people on the spectrum as basically all stuff she’d heard before. It’s true: so many blogs and books are about similar things. Still, as a teacher (of yoga as well as academics), I know full well that it can take a lot of repetition for things to get through to people.

Another point in favor of repetition: Sometimes hearing things slightly differently, or from a different source, makes all the difference. I still remember the first time I really heard a yoga teacher say, “breathe deeply,” despite the fact that I’d probably been instructed to do so a bajillion times before. A particular iteration just might be the one that - finally, truly - gets through to someone.

As well, I applaud the normalization of the conversation itself! Another post about why someone needs earplugs or a weighted blanket or a sensory break?…Sigh? Or be glad that these adaptations are being integrated into the realm of “whatever” (as opposed to “weirdo-land”)?

In that vein, I offer my take on families and friends learning about difference:

A friend posted this question on facebook:

 ·

Hey friends, I'd like to know how you talk to your kids about people with intellectual and developmental disabilities. I'm finding the "difference" language, which I generally like and feel is empowering, to be somehow problematic.

[Her son]  knows that there are lots of ways people can be different, that some people are born different and some people look or act different because of something that happens in life (like veterans who use prosthetics). If I know someone's diagnosis (like Down's Syndrome), I use that in a matter-of-fact way, explaining what it is and how it happens.

The issue is when I don't know what someone's difference is diagnosed as, but I want to talk about that person with [son], so he can be sensitive to them. I want him to know it's okay to ask me any questions he might have. I don't see how he can stand up to any bullying of kids who are different if he thinks it's something so shameful we don't talk openly about it.

Thoughts? Advice?

Here’s what I said [combined and slightly edited for clarity]:

Great question and obviously one we deal with for a variety of reasons and in a variety of ways in our family. I do agree that a matter-of fact attitude is so important in most observation of others. Anything from "Oh, so and so sometimes shouts," to “Yup, looks like that kid has only one arm…” to “Yes, some people think it is important to wear clothing with a brand name on it,” can be shared in a neutral and implicitly inclusive way. There might be some judgment or question appended – “Does that hurt your ears?” “Do you think brand names are important?” “How do you think she feels if people stare at her?” –  that is likewise implicitly inclusive in that it does not intentionally refer to the “normalcy” of the observed trait.

One major caveat when it comes specifically to “disability:” Many people one might label as disabled might disagree with that label. They might feel they are differently-abled, or even superiorly-abled, or completely normal in their own way….

Because there are two key underlying things here:

how people see themselves

and  

how they are seen by others.

Obviously you want [your son] to know that all beings are worthy of kindness and respect (I hate "tolerance" [although I know it's meant well in theory, I find it condescending in practice]) including himself (who, as a male of color, will have his work cut out for him in some arenas...). This kindness and respect model encompasses both how he sees himself and how he sees others, and naturally integrates how others themselves might want to be seen, right?

What I try to convey is that Everybody is different...and everybody is equally worthy of kindness and respect. Having an autistic kid and a kid of color that's already been kind of an inevitable issue and we have our teachable moments at home as well as on the town. Sometimes they are painful. (And, by the way, there are those rare exceptions to these ideals of neutral observation and kindness and respect for all: those sorry-as$ people who do not treat us or others with kindness and respect [because they are “hurting in their hearts”] need to be treated with kindness and respect from a very long distance…)

I guess this is a long-winded way of saying:

if Everybody is different,

then "different in the way her mind [body, etc] works" or "from a different

culture" (or whatEVER)

becomes simply one difference among an infinite realm of possibility.

It’s a pretty ordinary point for those of us accustomed to daily life with “extraordinary” differences in our midst. But the implications are grand: with everybody being different, there is no homogeneous “normal” against which we all must be judged.

Love,

Full Spectrum Mama

Summer, Summer, Summer Time

Having, now, about two hours of the school year left and counting, I went tooling around the internet and found this post: http://lostandtired.com/2013/06/19/insane-in-the-membrane/ , and got “Insane in the Membrane” (a life-mantra, if you will, for the Full Spectrum Family and Friends) stuck in my head for the gazillionth time and, so here, Daddy lostandtired, …Gotcha back? Hope so.

 

Summer, Summer, Summer Tiiime…Time to Sit Back and Unwind

Remember this Jazzy Jeff and the Fresh Prince song?

I’ve been humming it incessantly. Because that’s what we are going to do this summer?

Yup, I am determined to show my guys the FUNNEST, most wholesome, refreshing, unwindingest summer EVER.

And so I am sure there won’t be a THING to write about.

Plus, it seems I will be busily frolicking with Z and G  24/7  all summer, except for two weeks of camp, during which I will be, naturally, sailing the Mediterranean and getting my spa on. *

Indeed, we’ll be sleeping late,* eating a wide range of ONLY healthy foods while having no stomach issues,* and taking luxurious* road trips with the whole family enjoying brain- and character-building activities,* bicker-free, of course.*

I’ll certainly be musing about ongoing topics from past concerns such as:

how “disability” can be a super useful term (a.k.a. “I’ll call you whatever you want, whenever you want,” hmm…maybe that’s the post right there?);

diarrhea (Do we still have it? Bet you’re on the edge of your seat!);

Shifting Gears parts II, III and onward;

whether bringing up the existence of Finding Fairies (http://fullspectrummama.blogspot.com/2013/05/the-finding-fairies.html) might actually have been Z’s way to give me back my necklace (i.e. whether the whole scenario was not in fact actually my brilliant idea…);

and, relatedly, about who, actually, is in charge around here anyway?

Merry summer to you, dear readers,

Love,

Full Spectrum Mama

* In my dreams.

DIFFABILITY

Something tells me I am not the first person to be bothered by the “disability” label. I know it is useful in a variety of ways in terms of access and services, and that many do embrace it. Just – two quibbles:

First, as far as I can see, it is entirely too broad and general, encompassing people whose differences are so disparate as to be entirely unrelated. People with schizophrenia and people with paralysis. People with Down syndrome, people with Marfan syndrome and people with Asperger syndrome. Tourette’s and wounded vets. Environment. Fate. Genetics. Intellectual differences, emotional differences, physical differences…

Hmm. Sounds like…people.

Second, the term overlooks a crucial fact: that people with “disabilities” often have extraordinary abilities, some compensatory (the blind using other senses more effectively, for instance), some attendant to the “disability” (say, “savants” with autism or an olympic para athlete), some simply random or hereditary.

Again, what does this sound like? People?

So, while one could certainly say that a person with cerebral palsy is lacking a certain degree of mobility, one could also say that the person who yelled “Go back where you came from!” to my Chinese American friend and daughter when he almost mowed us down with his car was also lacking something most individuals might hope to share in a best case scenario.

Matter of fact, I can think of some fifth graders who are lacking a modicum of whatever car-slur dude was lacking.

Dear reader, you are probably tired of hearing this, but I do so wish the majority of people shared the exceptional openheartedness and kindness of my son, who happens to have autism. That they do not seems to me more of a “disability” than his.

I am not suggesting we throw out the useful aspects of disability as a category or identity.

Nevertheless, for general use, isn’t there something better?

After all, we are ALL “disabled” in the areas in which we struggle, and enabled both by the areas in which we flourish and by those aspects of our individual being that our cultural and social environments generally support. We all more or less successfully make all sorts of accommodations for differences and “special needs” (our own, and those of others). We blunder through all sorts of ill-fitting situations. We celebrate, ignore and denigrate myriad manifestations of the unique in equal measure.

The term “differently-abled” is so, so ungainly. Diffabled for short? A quick google search reveals I am by no means the first to think of this term, but it is one that bears disseminating.

It’s a great label – for everyone.

Love,

Full Spectrum Mama