THE LINGO

Dear Persons,

A good friend texted me the other day to say her son had called someone a “midget” and that didn’t seem right to her. Did I know a better word? I didn’t, actually. I wrote back:

Oh dear. With these things I think the Most important thing is what the person him or her or their self wants to be called…Person-first language was/is a trend (person with autism, person with dwarfism...), but that hasn't entirely worked out either. I've heard "small person," but - ? Complicated. Pretty sure “midget” not good tho...

Have you read Americanah by Chimamanda Ngozi Adichie?

The startling revelation in this book, for most people, is that being black is a thing in the United States in a way that it is not in Nigeria…We grapple with race in this country in ways that some other countries don’t, because of our terrible history of slavery, because of demographics, because of ongoing racism…In other places, other characteristics separate or unite people! Sometimes communities even form over shared differences - neighborhoods or meetings where people share certain qualities that may alienate them in the mainstream of a  given context. 

Being different is an issue only because, while we all live in somewhat diverse environments,  there are in every environment traits that most people share or that are considered “the norm,” such as heterosexuality, “typical” neurology, “white” skin, “black” skin, cys-gender identity, biological-family formation, “typical”family structure, “typical” ability, shared nationality, and so on…

This is changing. 

I see people noticing how random and inherently unimportant such aspects of people are; I see people celebrating diversity; and I see people trying to approach differences with more sensitivity. 

Parents of children with differences or people with differences are sometimes seen as “experts” on difference, but mostly we are just used to being thoughtful about such things in ways that can be new to some.  

So here’s my main suggestion: ask. 

Ask people what they want to be called. 

If you can’t ask, do the research to figure out the most respectful way to say what needs to be said.

Mostly, just try to see people as whole people, rather than reflections of a particular aspect of their being. 

Thanks and love,

Full Spectrum Mama

P.S. Even “Voices of Special Needs” might be taken as offensive by some: who is speaking for whom, and why are these needs “special?” As a neurodiverse person and a member of a family formed by adoption, I speak out about these topics as someone who is fundamentally enmeshed in such identities and speaking from personal experience only; I share our experiences in the interest of spreading understanding and awareness and inclusion. 

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

An InLinkz Link-up

DETECTIVE WORK

The Full Spectrums went to see a movie a few weeks ago, which is, in itself, a rarity. We went with my Meeting Friend and her family, and chose the only movie that was playing in a matinee, Mr. Holmes.

During a sad, moving part of the movie where Sherlock is really, really old and feeble and decrepit and does something pathetic, Z suddenly laughed aloud. I cringed. Perhaps she was uncomfortable, but it just felt very awkward and inappropriate...I tried to convince myself it was a mistake, but it happened again a few minutes later during a similar part. Everyone else in the theater was quiet...real quiet.  

“Good luck getting old,” said my Meeting Friend as we left the theater. As we always do, my dear MF and I looked for the bright side: “She’s very practical and realistic!” we assured one another; “Great sense of the absurd!”

On another note, the Full Spectrum children are very into any and all Secret Agent/Detective-y stuff, and were absolutely fascinated by the way Sherlock Holmes can detect things about people just through observation. As we walked back to the car, I asked them what Sherlock Holmes could know about them just by using his powers of discernment.

Z answered immediately:”That I’m a sister, and that I was adopted.”

All G had to say was, “That I’m awesome!” [See forthcoming post, “AND MODEST, TOO.”]

I wanted to hear more from both children, though I found Z’s response quite touching, so I told them, “For me, I think Sherlock Holmes could tell that I am a mother, wife, and artist. Those are the most important things to me.”

“I’m awesome,” G repeated.

“I’m mean,” said Z. Though it’s sometimes true, I don’t think mean is who Z is. I looked at her skeptically. “Well...I can be mean,” she amended.

“Don’t you want to change that?”

“What do you mean?” One thing that IS who Z is is a master obfuscator.

“Don’t you want to not be mean?”

She paused. For a while. “...Yeah.”

“Do you think you can change? I do! You’re just a kid still!”

“I think” – very matter-of-fact – “I will always be a little bit mean.”

“Why?”

“I don’t know, but I can tell I always will.”

“Well...that is something you will always have to work on then,” I assured her. “I know you can do that.”

“Huh?”

Hmm. Guess that conversation was over. (WHO, exactly, is in control all up in here?)

When I started writing this blog, I did not know anyone “like us;” I felt alienated, alone, and, much worse, so confused about parenting my two very different – from each other, from the “norm” -- children.

I felt like a failure in the most important role I’d ever had: motherhood.

I did not know, back in the day, that Z’s seemingly cruel laughter, her obfuscation, her self-proclaimed meanness are all attachment-disordered behaviors. I would have blamed myself for not raising her to be kind...I would have blamed her for being unkind and manipulative.

A number of factors (my own kinds of detective work: reading, researching, developing an online community, meeting others through the blog, finding a good specialist in attachment disorders, having a Meeting Friend) have helped me to become someone who is able to share the fruits of my detective work  in hopes of reaching people who feel as I have felt in the past (confused, alone) and feel now in the present (confused, alone, AND inspired, connected, and – every so often – just a little wise in my old age).

As for Z, if I were to name a third fundamental aspect of her identity that Sherlock Holmes might have discerned, I would say that she has a fabulous, quite broad sense of humor. That may be her, and OUR, saving grace.

Love,

Full Spectrum Mama

BLACKINESE

Pardner grew up in predominantly African-American neighborhoods. I was born in Panama and grew up spending time in Panama City and the Darien jungle town of La Palma (and in the interior, in smaller indigenous villages), usually being the only white person around besides my father. My godfather was an Emberá Cacique (the Emberá are the indigenous people of that region; Cacique means chief). The population in La Palma consists largely of Darienistas – descendants of escaped African slaves.

So Z’s New England-based family is a lot less super-White-rooted than most two-White-parented families around these parts….But that still doesn’t quite explain why she thinks she’s Black.

Z was adopted from China and is of – so far as I know and can tell – entirely Chinese ethnicity. When she was a baby I often thought she looked as if she could have been Emberá, but this resemblance has diminished as she has grown older.  In any case, I’ve always made sure to have positive representations (books, music, art) of people of all shapes, sizes, abilities, neurologies, and skin tones around the house. I try to celebrate a variety of cultures and perspectives. My goal has been not so much to make Z aware of being special (because she is Chinese, or was adopted, or…) but to teach –sometimes without explicitly doing so – that all people are inherently valuable.

For example, here are her favorite dolls:

                            

   

Figure I – Z’s Full Spectrum of Dolls

“Cinderelly,” far right, is a little hard to explain. Something involving Grandparents and a very headstrong young lady. Otherwise, as you can see, we have a very inclusive and diverse doll family. “Donna Poodle Itchy,” center, who is of Chinese descent, is Z’s favorite doll baby, but she loves them all. And, I suppose, feels ethnically connected with them all as well: she knows she is from China, her parents are White, and she is, apparently, Black-identified.

 I’ve heard her telling people several times, “There were only two Black kids at [her old school]. Me and [Black person].”

And check out this Thank-You card she – who has warm beige-toned skin - made for her best friend, who is from West Africa and has very dark brown skin:

                             Figure II – Thank You Card (Self-Portrait by Z, with her Best Friend)

Many, many moons ago, I worked at a fabulous organization called New Jersey S.E.E.D.S.  with the man I (along with his four sons, and I bet a few others like me whose lives he’s touched deeply) am now privileged to call “Dad.”* There was a student in our program who was half Black and half Chinese and called herself “Blackinese.” I’ve never forgotten the pride this student had in her voice when she explained her heritage, nor the excellent word she used to encapsulate that heritage.

I’ve been reluctant to too-strongly correct Z on her identification with other people of color of (speaking generally) a different color because it does seem to be a very positive thing for her. She is privileged to live among many terrific role models of all sorts, and in a progressive, inclusive community where being a person of color is a plus (ideally, in my humble opinion, it should be a neutral, butanyway…).

So I guess she’s just Blackinese.

Love,

Full Spectrum Mama

* Here’s what this wonderful man said when I asked him how he identifies himself ethnically as I began this post:

Hi [FSM],

Jesse Washington once asked me to describe my race in six words. I answered, “Race is a fiction; I’m black.”  

I do not say African-American because all of us come from Africa, some simply left the Motherland later than my ancestors did.  If we are simply African apes my ethnicity is special because I identify most with blacks worldwide.

Love,

[“Dad”]

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