99 Problems

Dear Persons,

I can’t be the only person who sometimes feels the world is a minefield for anyone who is not a white, middle class or above, straight, neurotypical, cisgender, male, typically abled person with a resolved and “good” citizenship status.

Or maybe I am just an oversensitive rabble rouser. 

In any case, when I got this "special" handout after a medical appointment for my son:

...I felt aaaaaaalllllll the feelings. 

It’s hard to even respond effectively or “unemotionally” to these things that blindside you when you are just trying to get your kid’s toe looked at. (Or read a book, or go to a grocery store…I mean, you know what I mean: Unfortunately, discrimination and ignorance can pop up just about anywhere.) 

Here’s what I sent to the whole office, including individual doctors:

Dear [Medical Professional/Office],

Please see the attached partial shot of [G]’s handout (from a visit for an infected toe) from last week. 

While there is much that I could say about this — whether from a moral, legal, ethical, neurological, medical, and/or personal perspective — I will limit myself to this:

Imagine how you would feel as a human being (never mind as a CHILD) to see your way of being (the way you were born) casually maligned as a “problem” on a random medical take-home handout. 

While an individual’s spectrum status may arguably be relevant in some medical situations, an ingrown toenail is probably not one of them. In addition, your terminology is outdated. And your framing of this neurological difference — which in fact also brings many gifts — as a “problem” is quite simply cruel. 

Knowing your office and Dr. ____ (clearly a caring person), I have to assume this is an oversight. I ask on behalf of my family and all others with differences that you stop this practice and any others that may marginalize or denigrate your patients, however unintentionally.

Sincerely,

[Full Spectrum Mama], Ph.D. 

The Full Spectrums do have 99 problems (if you get my slightly inappropriate reference) — probably more like 999 — but “Asperger’s disorder” is not one. 

Love,

Full Spectrum Mama

Update: The doctor called and left a message apologizing and claiming oversight. I called back and left her a message saying I trust nothing like this will happen again to anyone in her office.

Le sigh. 

 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

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

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”]

THE WEDDING

We are at a family wedding in Maine. My sweet, hunky cousin, Whitey McWhiteperson is marrying one of the most beautiful women I have ever seen in my life,* who happens to be from Kenya, although she grew up mostly in the United States.

* Also, she’s a great person and a Nurse. Grr. I mean…yay!

We are surrounded by close to a hundred people from Africa – most are from Kenya but a few are from Liberia, Ghana and Zimbabwe; most are immigrants to the U.S., but some are here from abroad. My family, consisting primarily of real live White people, makes up only a fraction of the wedding guests.

Many guests from The Bride’s side are in traditional dress, especially the women, who are in amazing, architectural headpieces and dresses of bright, stunning fabrics.

The Bridal Procession begins. The Bride is preceded by a whole bunch of middle-aged women singing exquisite and/or rowdy songs in Swahili. Other women are jubilantly ululating. As The Bride proceeds, she is accompanied by a rainbow of younger women in a variety of matching outfits by group (future sisters-in-law in lavender taffeta, friends from the U.S. in blue silk, friends/family from abroad in mixed colors…).

The singing, ululating elder women are using large, intricately patterned cloths as rugs to cover the ground in front of The Bride. Each cloth is removed as soon as she has passed, and quickly carried forward to lengthen the stretch of cloths in her path so that she need never touch the ground until reaching the altar.

G and Z and I are watching the scene with delight and wonder. G has settled down a bit from his initial flailing and neediness (from feeling overwhelmed by all the people and a new environment). I see stars in my daughter’s eyes and am happy to know she is experiencing such a harmonious, extraordinary, multicultural and flat-out-super-enjoyable event.

I’ll look forward to the color-blind (gender-blind, sexual-orientation-blind...sigh) day when such heterogeneity is a commonplace, but for now I’m feeling truly grateful that my daughter gets to experience this diversity in relatively-homogenous northern New England.

Figure I – Z (right) with New Friends at the Wedding

A hush falls on the guests as The Bride and her attendants near the altar, which is located on a breathtaking spit of land overlooking the ocean. The singing gets quieter, but no less moving.

Suddenly, through the reverent silence of the audience, a large voice rings out from my rather small daughter: “That dress must have been relley expensive!”

Um…Whoa.

All around us, people are laughing, with a slight undercurrent of chagrin. My entire parenting career passes before my eyes: what about “our” values (non-materialism, valuing what’s INSIDE instead of appearances…)? Why bother raising kids without tv and consumer culture if this is what happens in the end? How is it that, surrounded by marvels of all sorts, the price of the dress is what Z chose to focus on??? Where did this comment of hers come from???? Is there some genetic component to character????????? As well, whence the Valley Girl accent?

Big questions.

So, you know, next thing I know I am drinking a teensy bit more than I might be under other circumstances. Right? Right? Doesn’t everybody feel a smidge uncomfortable around family?

Oh, wait, no. WELLANYWAY.

Lucky for me, after a few hours on the dance floor, what remained with me was laughter and the pleasure of losing myself in the festivities (with a little help from my old friend Vino).

This was partly because Z and I were the last ones dancing from my cousin’s family, shaking our patooties long after the rest of that side had left the dance floor. Thereby proving beyond a shadow of a doubt that (as alienated as some in my biological family may be) my daughter and I are totally related.

And it was partly because, as a fabulous someone said, “At least she didn’t say it looks cheap!”

Love,

Full Spectrum Mama