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 In addition, your terminology is outdated.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

DEAR PERSONS

Dear Persons,

Z has always laughed every time she hears or reads the word “persons.”

I finally sat her down and explained to her that “persons” is a word that has a deep and complicated history. That personhood was for many millennia and in many places reserved for only a certain type of people, such as men, or landowners, or white people, or people of a certain caste or religious faith or neurology...

I explained that even though it might seem silly or old-fashioned when you read or hear that word, it’s a strong word that carries a lot of goodness and respect. That she, as a female of Chinese descent, might -- in many settings over the course of history --  not have been considered a Full Person. That even now she will not necessarily earn as much as a man, or be accorded equal respect.

We are reading Malala Yousafzai’s autobiography, I AM MALALA, together, and she is learning how hard life can be for girls and women in many parts of the world. She has already experienced instances of racism at school. Knowing she’s a Full Person gives her grounding and power to stick up for herself.

This conversation inspired me to begin starting my posts with “Dear Persons,” because my readers are dear to me, and because they are all Full Persons.

Love,

Full Spectrum Mama

TEACHABLE MOMENT

WE ARE NOT YOUR TEACHABLE MOMENT

We are a Colorful Family. When we are out in public, we are usually the ones people are looking at. Because we are unusually attractive. OR, perhaps, because one of the kids is usually doing something "interesting" and one of the parents (usually me - Pardner is a chef, and chefs quite a lot) is usually doing something "creative" to try to channel the "interestingness."

I’ve realized over the years, because I find myself staring when I see families with differences or public challenges, that some people—like me -- look on with identification and empathy.

Some look with scorn and judgment (those guys don’t even deserve this sentence).

But the other group consists of the ones who want to use my family to teach “tolerance” – which feels a little condescending -- or those who (much better) are aiming for respect and acceptance, whether of neurodiversity or ethnic diversity or any other inclusive impulse…

Um, may I just say that being anyone’s “Teachable Moment” can be a wee smidge annoying? But okay, I get it, people.

So here’s my Lesson Plan for this Teachable Moment:

                                           Figure I – The Full Spectrum Family Lesson Plan

Guess what. It's a spectrum. Is yellow "better than" violet? No. Red vs. green: who wins?

Nobody.

Neurotypical's not better than neurodiverse -- and vice versa.

White? Brown? Peachy keen? Melungeon? Different?...Equal.

Orange? Blue? Indigo? Sensitive? Impervious? Female? Male? Trans? “Normal?” Weird?” Can’t tell?

Equal.

Please think carefully before you approach us just because one of us is brown and might not be “mine,” or because one or two of us seems quirky…unless you do so under an equal and inclusive flag.

Whatever we are representing to you, it’s probably not our "fault." It’s not even necessarily that interesting.

There's nothing wrong with us, or at least no more than there is with any other given family. And we all need to learn to get along. Best we do so with the basic assumptions that no one is a specimen and that we are all equally valid members of this funky human rainbow.

Thanks – I needed to get that off our Spectrum.

Love,

Full Spectrum Mama

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

Ancestry

Holidays can be a little bit tricky in a Full Spectrum household. Take Easter, please. The morning egg hunt presents huge problems when one child goes Machiavellian (strategy, speed, ruthlessness; goal: vanquishing cousins, sibling…result: victory) and one goes aspergian (general neural overload - candy, neural/visual/auditory overload – frolicking cousins, warp-speed sibling; goal: vague…result: paralysis, tears). (Please see self-explanatory Figures 1 and 2.) Ditto, Birthdays: think piñatas, favors &c.  We have adapted by focusing on the pre-filled Easter basket, the set number of packets – one for each child – in the piñata, and so forth.

                      Figure 1                                                                                            Figure 2

St. Patrick’s Day, too, has its potential pitfalls. Over oatmeal breakfast on that fateful day, I was sharing an uplifting story of how the children’s Scots great-grandfather would wear a button on his bum that read, “Kiss me, I’m Irish,” much to their Irish great-grandmother’s chagrin, when Z asked me, “Mama, am I Irish?”

[Censored!] I was completely tongue-tied. There was a long and (to me) somewhat uncomfortable silence. I’d’ve preferred to have been thinking about many other questions right then, including my ongoing internal debate over which is better as the face ages: the jowl-less wrinkles of your skinnier folk or the wrinkle-free jowls of the pleasantly plump?

Ahem. Since Z was adopted from China, I have a ready-made response for one of the hardest questions: “Why didn’t my birth mother keep me?” China’s one-child policy –for all its questionable aspects – offers the option of a simple answer to this complicated question: “Your birth Mama gave you up because she had to, since in China most couples are allowed only one child.”

But what about this question? Is Z Irish or not? Clearly she is not genetically Irish. But her maternal great-grandmother was fresh off the boat from Ireland. Pardner, G and I are all genetically part-Irish. As I sat there, mouth agape, Pardner (Thank you universe for Pardner! Thank you! Thank you!) came to the rescue, assuring her in a strong brogue that, “Everyone’s Irish on St. Paddy’s Day!”

“Good,” she said, “because the leprechauns are going to come to our school this weekend and turn everybody’s chairs over.”

Oh.

Walking into school several weeks after St. Patrick’s Day, Z asked me, “Mama, if we can have ancestors…can we also have ‘anbrothers?’” After I stopped laughing and, frankly, bragging to everyone I ran into over the next few hours about how funny Z is, it hit me that she is still thinking about ancestry a great deal.

Maybe all those Easter eggs – and all those other material, tangible, often-edible (and sometimes eaten even when not-edible) things -- feel vitally important to a little girl who’s not quite sure what’s inside herself.

Next year I am just going to say, “Yes. Yes, you are Irish baby. Because you are mine.”

Love and leprechauns,

Full Spectrum Mama