Monday, December 28, 2015

All of me: how do I know where blackness ends and neurodivergence begins?

Most of us have multiple identities. Few (actually, probably no) people in this world can claim a existence that's purely homogeneous. We are all different in some way, and usually in several ways. However, there's a pretty distinct difference in our perspectives and our experiences when our specific differences fall within marginalized and/or minority groups rather than within groups with more privilege. And even though we are all still humans and by virtue of that we have a lot of similarities with other humans, this still makes for a monumental difference - about as different as Venus is from Earth.

When the differences have to do with race, gender, disability, and/or culture, etc, you often find yourself trying to determine "which" aspect of your personhood is at play in a particular situation. It's very challenging, and very draining. And at best, it's an educated guess. Because you never really know. 

Whether x is good or x is bad, you have to wonder if x is all that it appears to be. Or perhaps at least partially did x happen the way it did because I'm female presenting? Or because I'm black? Because I'm black AND female presenting? Or maybe none of those, but it was more due to autistic mannerisms? Or perhaps it was a cultural thing instead, something that would have made sense to "real" Americans - not new ones like myself and my family? Or maybe I'm misreading all of it and it was really more of a conservative Christian thing and that's why I'm lost, since I'm not one (a conservative)?

And that's just one hour of the day...

And that's just me, not my kids, who have numerous intersectionalities of their own.

For this post, I will let you wander - and wonder - along with me about this thing that I still haven't figured out in 30-something years of being me. Accompany me on a few events on a hypothetical week. (And BTW, all of the things I mention here have actually happened in some way or another, to me.  Not all in the same week, but they're still true events. In other words, this blog post is "based on a true story.")

You ready? Let's roll.

It's Sunday. We go to a restaurant after church. We order our food. We modify the meals to accommodate food allergies, food preferences and aversions, and sensory needs, but we do so politely. 

My kids are boisterous at the table joking with one another and chatting; the teens occasionally bickering over nonsense. My youngest daughter gleefully recites a few verbal scripts while my youngest son stims vocally with his current sound. It's kind of a cross between a song, a whistle, and a muted shriek. But we aren't any louder in volume or more disruptive in our actions than any other family in the restaurant, though our sounds might differ from theirs. 

Our server is not openly rude, but pretty disengaged and inattentive - when we can find them. They scarcely return to refill water or to check to see if we need anything, though we see them attending dutifully to other tables. It's clear to me that the server assumes that we're not going to tip, so there's no need to pay attention to us. However, they are dead wrong. I was raised right. I certainly don't plan to give a ginormous tip in this instance because the service we've received doesn't warrant that, but I still leave my minimum 20% tip. When I sign my receipt indicating the tip, the server's surprise - and subsequent remorse at ignoring us - is apparent. 

Why are they surprised? Because of the "black people don't tip" stereotype? Because my kids didn't trash the eating area and leave it looking like a war zone? 

And why were they so dismissive of us and inattentive? Because we are a large family? Because when I mentioned the food modifications I referenced autism, etc, so maybe they assumed we'd be a pain to deal with since we were an autistic family? Because we are a black family? Because my husband was at work and I came in alone with my kids...and thus maybe they were discriminating against me since they perceived me as a single mother?

It's Monday. I'm running afternoon errands with my kids in tow (as usual). We are standing in a lobby waiting for an elevator, and while we wait my daughter is reading the signs posted on the walls aloud, which are at adult level and fairly complex. A woman who was also waiting remarked, "You must come here a lot to have memorized all of these signs." When my daughter replied that she'd never been in this building before, the woman was astonished. "But you're just a little girl. Surely you're not reading all of that?" She asked. "Yes," my daughter answered matter of factly, "I've been reading since I was two years old." She then began to read the summary on the back of the novel that the woman was holding aloud (it was at my daughter's eye level).

The woman's surprise - do I attribute it mainly due to a disability-related factor; namely my daughter's hyperlexia as a twice exceptional child (gifted and autistic)? Did the fact that my daughter is also black also contribute to her surprise?


It's Tuesday. I'm at work in my classroom, teaching. Midway through the period one of my colleagues knocks on my door and then pops a head in the doorway, apologetically asking if I can keep it just a little quieter since their class next door can hear my voice. I agree, apologizing as well. It is difficult for me after that to get my mind back in gear for few moments. To compensate for unknowingly being too loud, I intentionally begin to speak more softly, but now my students complain that they can't understand me clearly. I couldn't seem to find that "just right" tone that was in-between loud and quiet. It was frustrating. 

This has happened before, and just like the previous times I hadn't at all realized that I was loud. To my own ears, my volume wasn't loud at all; just normal. How, I wondered yet again, would I be able to succeed in speaking more quietly if I couldn't recognize when I was being loud in the first place? 

One characteristic that I share with other autistics is differences in social communication. It varies by circumstance, but essentially our pragmatics, prosody, vocabulary, etc tend to differ from that of others. Was this inability to regulate my tone an autistic thing?

But then I thought of my parents, and my uncles, and aunts. The loud, animated conversations that they have in person and/or via telephone are almost always pretty high volume, and have been as long as I can remember - and they're not all autistic (most of them aren't autistic at all). Furthermore, I've noticed this not only among other Africans, but among Caribbean/West Indian individuals and African Americans. Heck, I've noticed it among Hispanic/Latinos and Asians too. Maybe some of this loudness is just a PoC thing? Or maybe it's both an autistic and a PoC thing? How can I tell? 

It's Wednesday. Worship music blares through the speakers. The bass ripples through my body. The drumbeat invigorates me. I move. I move. I am one with the music as I dance before God. I don't know the words of the song and I don't need to because my heart is singing. I sway with my arms raised, then with my arms at my sides, my head bopping to the rhythm. I worship wholly, and freely, and happily. 

Th song ends and another starts. The music is loud, but in a pleasant way. I almost don't hear the muffled, "Excuse me." But then I hear it a second time as it is accompanied by a tap on my shoulder. I turn around. 

A woman seated in the row behind me glances sheepishly at me and gestures to a Kleenex box in my row a few seats away from me. Her right hand is cupped over her nose. I understand now why she sounded muffled and what she is hiding beneath her hand; after all, it's allergy season. I hand her the box, and she replies with a muffled, "Thank you," and a grateful smile that is half-hidden by her hand. I smile back. 

As I start to turn back around I feel someone's gaze on me. I look back again and notice that there is a man sitting next to her, presumably her man from their body language/close proximity. While the woman is preoccupied with attempting to clean her nostrils discreetly he makes eye contact with me. He smiles at me. I don't like his smile - it unnerves me. I don't smile back. He proceeds to give me a once-over, eyes lingering hungrily on certain parts of my anatomy. Creep. I feel suddenly uncomfortable and turn back around. 

The music is still booming. But the joy has vanished from it. I play the last several minutes back in my head and see myself dancing. Only now rather than perceiving it from the perspective of someone worshiping, I take a more carnal approach. I imagine someone leering at my hips gyrating, my buttocks jiggling, my breasts bouncing as I praised the Lord the only way I know how - fully and truly. Innocently. I am a black woman and this is the body God gave me. It has curves. That's not a crime. 

I am an autistic Christian. I don't do put-on pleasantries. I don't go through the motions. Everything I do is raw and real. My faith is new to me, something I only acquired in adulthood. I don't have rituals and tradition to fall back on. I only have my sincere faith, and an innocent desire to praise God totally with all that I am. Mind, body, and soul. Only at this moment the "body" part was being corrupted by fear and doubt due to the actions of another.

I felt no shame in my movements because there was nothing wrong with me dancing, but now I was worried. Was this man - who, from what I could tell, obviously had a wandering eye - going to get the wrong idea? Had he already gotten the wrong idea somehow that I was trying to flirt or turn him on somehow by the way I dance? Would his woman get upset at me if he kept looking at me; maybe thinking I was trying to make a pass at her man (because, again, I am a black woman after all, so I am potentially "loose" and devoid of morals, right)? And because I am autistic, it isn't likely that I would handle either scenario (him choosing to misread my signals or her misconstruing the situation) well. Sigh. I didn't want nor need any drama. 

I sat woodenly in my chair. I wanted to worship as I had been doing earlier. But I felt trapped by my need to self-protect. I knew the dangers of not catching these kinds of signs and being in an unpleasant situation as a result. I've been in that place before. I didn't want it today. Not here, in the house of God. And not now when I had enough going on in my life. 

I got up and moved to another seat far away from his undressing eyes. But the damage was already done. Even there, in my new seat, I couldn't relax. The peace and joy that I had at the beginning of the service was long gone. I couldn't wait for it to end so I could just go home. 


It's Thursday. I am looking for some document that I can't find and that of course I really need. I shuffle through stacks of paperwork that I have in my desk, on my desk, in my drawers (where clothing should be), in plastic bags, on shelves. I look and look and look. I find all types of things. Much of it I don't need. Some of it is very important. 

I come across some of my youngest daughter's old evaluations. Before we knew she was autistic she was still "receiving services" for other things, including speech and OT. I skimmed through the stack of pages. On paper, my daughter was a living, breathing list of deficits. Page after page about what she couldn't do, didn't do, or didn't do enough of. 

In one particular assessment report, my eyes rested on one paragraph. I could practically quote it. In it, the "professional" was making their case for why they believed my daughter was likely intellectually disabled, citing her echolalia and lack of "original, spontaneous speech" as supporting reasons. Even though her intellect had not yet been formally assessed, they were already making presumptions about her abilities as if speech and intellect are intertwined.

It comes as no surprise to me that autistic children of color are more likely to be identified as intellectually disabled than their white counterparts; the same is true of children of color who are not autistic. This concerns me. Not because being diagnosed with an intellectual disability is the worst thing in the world; it is not. But because of the disproportionality in the diagnosis. Children of color, as well as nonspeaking individuals, are quick to be identified as "deficient" or  "lacking" in some way, but their strengths and abilities are not as readily determined. Why? 

Why?

It turned out that this esteemed "professional" was completely and totally wrong about my child's cognitive ability; my daughter had IQ testing conducted approximately a year after that report and that is when we discovered that she was gifted. And though I would have loved her exactly the same regardless of IQ, it is unclear to me which characteristic was the driving factor behind an assumption by "professionals" of intellectual impairment in the absence of evidence or formal testing. They had written her off without even verifying if their hypothesis was right or wrong. How much of a role did disability play in their presumptions; how much of a role did race play? Had she been a young white girl with the same profile would the same assumption had been reached? Or if she still was a black girl, but one without a disability, would they have reserved judgment? 

It's Friday. School is out and my teens want to hit the mall. I am tired and the last place that I feel like going is the mall. But when I ponder it a bit I recall that Friday nights at the mall are much more calm than Saturday afternoons. On Saturdays the mall is like a zoo. Too many people; too many smells; too many sounds. Yuck. I gathered my spoons, loaded my kids in the car, and headed for the mall. 

After stopping in a gazillion smaller shops, we eventually end up in one of the large, high end large department stores. The teens are starting to get into brand names a bit, and were looking at some of the clothes. They looked at several clothing combinations from different parts of the store, and opted to try a few of them on. 

One of my sons, the oldest one, was looking for a particular clothing item. We looked, but couldn't find it. Walking a little ahead of us, my son approached a salesperson to ask for help. 

I watched the exchange from where I was standing not far away. It seemed as though the salesperson was having trouble understanding my son. My son doesn't always make eye contact when speaking to others, and sometimes there are lengthy pauses in his speech as he mentally searches for the right word. There may also be a pause before he actually begins to speak while he processes what has been said to him. 

This doesn't mean that he cannot be understood. He can. But sometimes it requires that someone exercise a little patience in order for them to converse. 

The salesperson's facial expression indicated that he was a little confused by what my son was saying. My son tried repeating himself, but I guess it still wasn't coming out right. I saw him lift his head and start scanning the room for me. I met my son's gaze, and he beckoned for me to come over. 

I walked over to where they were, and tried to clarify what my son was saying. As soon as I joined them, the salesperson's whole demeanor changed. He (the salesperson) noticeably relaxed in my presence. While I was speaking, he nodded and smiled. I wasn't sure what I had done that was so special, but I was glad that seemingly we were getting somewhere. 

So I thought, anyway. When I finished talking, the salesperson turned to my son and began addressing him. 

Whereas before I had come over the salesperson was speaking to my son "normally," now he was engaging in what I call "baby talk." You know the loud, higher-pitched, exaggerated manner a lot of adults communicate with babies? Many people also speak that same way to disabled people. Apparently my coming over alerted the salesperson that my son was Not a Regular Person. The presence of a parent (or, as some people say, a paaaaaaaaarent) signified to the salesperson that something must be wrong with my son because he needed my support. Therefore, somehow even though he and my son were speaking to one another normally just minutes prior, now my son needed to be spoken to in babyspeak. Because disabled people are just babies in adult bodies. Right?

I felt myself getting annoyed and considered calling attention to the nonsense. But then I felt a little convicted. You see, my son, who is, like me, black, is 14 years old and taller than me. His voice has changed and he sounds more like a young man than a boy. He still, to me, looks like a kid rather than an adult. But we live in a world where police can gun down 12 year old black males with toy weapons in the street with impunity; what looks like a growing teen who is obviously still childlike to my eyes may be viewed as a menacing threat to someone else. And this salesperson hadn't treated my son as if he was scared of his blackness. 

The baby talk was humiliating. I pictured my son squirming on the inside. He's a nice kid, so he wouldn't say anything directly to the man. But I knew he was bothered by it - because I was. At least I suspected he was bothered by it. 

Part of me said, "Say something! You're his mom! His protector! Don't let someone unknowingly disrespect him like this!"

But the other part of me said, "The man is being ableist. But he isn't being racist. Shouldn't I be grateful? He didn't follow my som around the store, or falsely accuse him of shoplifting, or treat him with disdain for being black. He is treating him with disdain for being disabled, not for being black. This is humiliating, yes. But humiliation isn't as likely to kill you as racism is. Maybe I should leave well enough alone..."

The tug of war. The date changes. The players change. The scenario changes. The struggle doesn't. It doesn't.

Which one will I fight for and which one will I sacrifice?

It's Saturday. It's been a long week. 
I watch the news. 
Or I go online.
Or I hear it from someone.
It hits me like a punch to the stomach. It hurts. 

Another person like me. Dead.

Dead. Maybe they're disabled. Maybe they're a person of color. Maybe they're a woman. Maybe they're a combination of some or all of those characteristics. Whatever they case, they are no longer living.

Maybe they were killed by a parent, caregiver, or spouse who was "snapped" due to the "burden" of caring for a disabled family member. 

Or maybe they were killed because they were in the wrong place at the wrong time while black. Another hashtag that won't get justice. 

Or maybe they killed themselves. Because they internalized the messages of self-hatred and worthlessness that society fed them about who they are. They couldn't bear the thought of living their lives any longer. They ended things. 

Maybe they overdosed. Many substance users are self-medicating to cope with their present and bury their past. The rate of substance use, mental health diagnoses, etc is high among both individuals with disabilities and people of color. It is also high among women. 

Maybe they died of malnutrition or preventable illness. Access to quality care and services fluctuates widely, with some groups having more than others. These disparities fuel poorer health outcomes, lower quality of life, and higher morbidity rates among marginalized groups. Not surprisingly, the disabled, women, and people of color are high on that list in terms of risk factors. 

Different days. Different names. Different situations. 

Same need. 

I - and people like me - can't splinter ourselves. There is no disabled me. There is no black me. There is no female me. There is no parent me. There is no Christian me. There is just...me. All of me. And I need for all of me - all these parts of me - to be addressed. I can't leave my leg out in the rain while the rest of my body comes indoors for shelter. Because if I do I am still going to be wet and miserable, even if much of my body is dry. That won't work for me. 

I don't know where my blackness stops and my femaleness begins. I don't know where my femaleness stops and my Christianity begins. I don't know where my role as a disabled adult stops and where my role as a parent begins. I don't know when my role as a parent stops and my autisticness begins. I don't know where my autisticness stops and my blackness begins. And rinse, no-poo, repeat. 

I need solutions, policies, ideas, images, writing, research, etc to be intersectional. I need them to address all of me. All of me. 

All of me. 

Or none of me. No longer will I splinter myself for others' comfort or for any well-intended but incomplete cause. I want it all. 

Or nothing at all. 

Photo credit: dadthesingleguy website