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


Saturday, November 14, 2015

Don't Pray My Autism Away


I am autistic. 

I am also rearing children who are autistic - along with non-autistic children who have various disabilities. Our home is swimming in acronyms that stand for all of the different diagnoses in our home. We are quite the "motley crew," my loud, flapping, spinning, scripting, disabled family and I. And though it's not always easy (which would be the case with or without disabilities), it's authentic. We love each other. We strive to respect one another's strengths, challenges, boundaries, and needs. We mess up at times. But we make it work. 

In addition to being a family with various disabilities, we are also a large family, an adoptive family, a Christian family, and a family of color. We stand out when we go places first because of our size and/or demographics, and secondly because sometimes the way some of us present is a little different than the norm. At times we have had negative experiences because of this (i.e. being told to leave movies or plays). But generally the people in our lives are welcoming and supportive...from doting grandparents, aunts, and uncles to our awesome occasional babysitter GR who showers the kids with love, to loyal friends, to patient and accommodating teachers.

Our church is also a good place of support. Though not perfect, it strives to include people of different backgrounds and experiences and to embrace diversity, including disability. We enjoy attending there and are actively involved in our church. But the other day something happened that I need to address. 

There was a special performance at our church one evening recently and we attended. The children typically attend classes designed for youth, but this was a family-friendly event, so I had the children with me. I was a little worried about one of my children (my youngest son) because the sanctuary uses lighting effects (dimming, etc), and there is a lot of noise (praise team, live band, bass pumping out of the speakers) and a lot of people. So I was prepared to leave if we needed to. Fortunately, this was a "sensory-seeking" day rather than a "sensory-avoiding" day for him, so not only was he able tolerate the environment that night, it seemed to energize him. 

The music and the movement enraptured him, and he wriggled out of my lap and climbed to his feet. He moved to a space in the aisle near me, but more in front closer to the stage as if to "feel" the music better. He grinned widely and swayed to the beat. He bounced. He clapped. He spun. My heart burst with joy watching my baby boy become one with the music. I could relate, as there are some things that capture me just as deeply. You see, autistics don't do anything halfway. We are either all in or we are not in. I can get similarly lost in a book or in my writing or in other things that I am passionate about. When we are engaged in something, it can be like an all-consuming fire. There is nothing else around us and nothing else matters at that moment. Watching my child, I knew he was being propelled to move and to express his joy by something from deep inside of himself. 

I didn't worry about people staring or pointing or whispering because our church is not like that. If anything, I think I saw a few people smiling broadly at him as they noticed his joy and how he was worshipping freely and boldly. I think the cameras might have even zoomed in on him once. :)

When we left I stopped by the restroom before heading to my car. An elderly lady was in there washing her hands at the sink. I walked past her en route to one of the restroom stalls. She caught my eye and smiled at me, and I returned her smile. The woman, who appeared to be about eighty years old or so, was short and had kind greenish-gray eyes and a sunburst of freckles across her nose. She then spoke. "Young lady, was that you with that little boy who was jumping around out there?" she asked. 

"Yes, ma'am," I answered with a smile. "That's my son."
"He sure is precious," she said with an even bigger smile. Then she lowered her tone, moved a little closer to me, and inquired, "Is he touched?"

"Touched?" I had no idea what she meant. "I don't understand."
"I was wondering if your son was touched. You know. Special. He seems different. Is he special?" she clarified. 

"Special." I didn't understand "touched," but I understood "different." And I definitely understood what she meant by "special." My smile fell. 

"Yes, ma'am," I replied softly. "My son is very special to me. He is a wonderful child. He is autistic."

"Artistic?" Her brow furrowed.
"No ma'am. Not artistic. Autistic." I struggled with how to make her understand, and decided to add, "Some people would say autistic and some would say, 'He has autism.' He thinks and acts differently."

"Oh!" she nodded in understanding. "One of my great nephews has autism too. Can't talk, but smart as a whip. Well, I'll pray for you, young lady. And your son too. I'll be praying."

"Thank you, ma'am," I replied. "We could always use more prayers."

"I will be sure to pray. Our God is a great Healer. He can heal your son. I'll pray God continues to give you strength to deal with autism. I know it must be hard. God bless you," she said. 

I was at a loss for words. I didn't want to be rude, but this was going completely wrong. "Ma'am," I choked out, "I don't need prayers to deal with autism. I understand autism because I am autistic too. I don't need you to pray for my son to be healed."

"Of course not!" she exclaimed. "I am so sorry.. You're right."

Relieved that she understood the offense, I smiled again. "Thank you, ma'am," I said, and finally entered the stall. 

As I was pulling the toilet seat covers out from their place on the wall of my stall, I heard the woman speak once more:

"Please accept my apology. I will not pray for God to heal your son. I didn't realize you have the same stronghold. I will instead pray for God to heal BOTH of you. By His stripes you are both healed." I then heard the bathroom door swish open as she left the restroom. 

I know the lady meant well. She was trying to be caring. But her words demonstrate a widespread belief and way of thinking that I don't agree with and that I think is extremely harmful. It is something that needs to stop.

Please don't try to pray the autism away. I don't need to be "healed" of autism. And my children do not need to be either. We are not autistic because of some sin, or some defect, or some punishment from God. We are autistic because we just are. This is not an affliction. It's a way of being. 

I believe in prayer. I believe in healing. Feel free to pray for us. Just not like that. God made us this way. We are not broken. 

I see examples of "different" people all throughout God's kingdom, including His Word. When Moses worried that people wouldn't respect him as a leader because of his speech impediment, God answered, "Who made mouths?" Clearly God had no problem with Moses' disability. And about John the Baptist? He was clearly NOT neurotypical. Mary Magdalene? David? Paul? Jesus? All of them "marched to their own beat," as the cliché goes. These examples, and others, reassure me that people like me, and my children, have been around since the beginning of time. And we will continue to be around. 

We need all types of different people in this world. We need all types of minds as well. The world would be boring if we were all neurotypical, or if we were all autistic, or if we were all gifted, or any number of things. Just like the world would be boring if we were all white, or all black, or all male, or all female...etc. There is beauty in our diversity. There is strength in it. And I believe when God looks upon it, He thinks it is good. 

Please don't pray for my or anyone else's autism to go away. It is a part of who I am, how God made me. I am fearfully and wonderfully made, autism and all. By all means pray for me, but pray for my health, my family, my finances, my spiritual growth, whatever; don't pray that God takes away what makes me "me."


Image result for don't pray
Image of a pair of clasped praying hands with a red circle and a slash on top of them, as if to indicate "Don't pray." Photo credit: W. Worthy.

Sunday, November 8, 2015

#JeremyMardis was killed by cops; does anyone care?

Last night I was in bed cuddling with my five year old son as he drifted off to sleep. He had a Mickey Mouse toy tightly clenched in one fist and a green marker top clenched in the other. As he grew more drowsy he arched his back and pressed the bottoms of his feet against me. His tongue moved to the left side of the inside of his cheek to rest as it often does when he is falling asleep - one of his favorite bedtime stims. I looked down at my beautiful, beloved, ausomely autistic child. And he reminded me so much of another ausomely autistic child. They looked nothing alike, but I couldn't help but think of him. 

Jeremy Mardis. He was a small boy with a radiant smile and glowing eyes to match. The autistic first grader had only attended his new school for a short while but seemed to be settling in. Now Jeremy, once full of life and full of breath like you and I, lives on only as a hashtag. He joins the ever-growing club that nobody wants to be part of: a victim of police violence. Jeremy, who was killed by some of the ~18 rounds of bullets Louisiana police officers fired into his father's car, did not live to tell the tale of what transpired; we only have body camera footage, Jeremy's father's witness statement, conflicting accounts from the officers present, and the pending autopsy results to rely upon. But one indisputable fact is clear: at age 6 years, Jeremy is the 17th US child under the age of 18 years old that has been killed by police officers this year. He is the 834th person to be killed in the US by police this year. And the year isn't over yet. He will not likely be the last.

Image of Jeremy Mardis, age 6. Photo credit: independent.co.uk


Jeremy's death was completely avoidable. Though there is no technical policy for the police department in the jurisdiction where Jeremy died regarding shooting into a moving vehicle in pursuit of a fleeing target, it is illegal in a number of states and it is considered by several reputable law enforcement agencies to be an excessive use of force. The police screwed up.

Though seemingly he is not a candidate for a "Father of the Year" award, Jeremy's father, who was driving the vehicle that the officers were chasing (presumably in a high-speed traffic chase, though it is unclear exactly why)was unarmed in the vehicle, as was Jeremy. It also appears that Jeremy's father allegedly had both hands up in an attempt to surrender before the officers opened fire. :( Rather than shoot out the tires of the car to stop Jeremy's father from continuing to flee, the officers instead opted to shoot into the car itself - causing Jeremy's tragic and unnecessary death. 

When a sweet, innocent, beautiful child loses their life in such a violent, senseless manner, it's often hard to know what to feel, think, or say. There are few words that can adequately describe an awful situation such as this. However, there are a few words that convey the situation perfectly. I'll share them below. 

Murder. 

The first word is murder. Jeremy was murdered. Had the officers acted responsibly in this case, Jeremy would not have been pummeled with bullets. There is a protocol for dealing with a suspect who evades arrest. None of that protocol justifies shooting into a moving vehicle, endangering the lives of not only known passengers of that vehicle, but also the lives on any unknown passengers and also the lives of passersby as well. Their poor judgment cost Jeremy his life. His blood is on their hands.

Accountability.

Second degree murder charges have been filed against two of the four officers present that day. It is unclear why charges were not filed against all of the officers. Similarly, in my opinion (from what I can glean at this time), Jeremy's father's actions were deplorable and cannot be excused. I'm a parent. My kids ride places with me all the time. I will put myself out there in the interest of transparency and admit to having had a warrant before. (Having pretty severe inattentive ADHD on top of being autistic, my executive functioning is not the greatest. If you forget to attend a scheduled court date, a warrant for your arrest is issued until you reschedule, pay the fine, or take care of the matter in some way.) The last thing I would do - or have done - when stopped by the police is embark upon a chase. Because even if no one was hurt in the chase, that would frighten my kids. It's better to stop and take the arrest. Better for your kids to have to wait at the police station for a relative/friend/trusted adult to retrieve them, or even for them to be picked ip temporarily by Children's Protective Services for a few hours due to your arrest than for your kids to be traumatized by being with you while you trying to run. Chances are you won't succeed at the attempt to flee and after you are eventually apprehended after running the kids will have to watch you get handcuffed and arrested anyway; why not minimize the damage if you can?

However, from the latest articles, there doesn't seem to be evidence that there was an active warrant out for Jeremy's father in the first place. So it is even more confusing what happened between him and the police to result in a chase. So many things went wrong, and it's unclear why. But one thing IS clear, and that is, as previously stated, the cops screwed up. And IMO Jeremy's father also screwed up. Majorly. Royally. Inexcusably. 

Hypocrisy. 

A beautiful six year old is dead. Yet it already seems like yesterday's news. WTH is up with that? As a mother, my heart breaks at the murder of someone's precious son. A young boy who was little more than a baby. Jeremy was only a year older than my youngest son. And like my son (and like me) he was autistic. We have lost one of our own. His autism diagnosis might have nothing to do with his death, but it had something to do with his life. It was part of who he was, part of how he perceived and responded to the world. We don't know who or what little Jeremy could have grown up to become had he had a chance to actually live out his life. One of our people has fallen. My skin might be the color of coffee and his skin might be the color of cream, but Jeremy was - is - my brother. Where is the outrage? Why doesn't Jeremy deserve nationwide vigils in his honor and to be remembered with love? I marched for the murders of Eric Gardner, Tamir Rice, Jordan Baker, and so many others. Police violence hurts no matter what age. Aiyana Jones shouldn't have died; Kayleb Moon-Robinson shouldn't have been assaulted and handcuffed; the teen in McKinney, Texas shouldn't have been sat on; the teen in Spring Valley shouldn't have been assaulted; Jeremy Mardis shouldn't have been shot. Our children's lives cannot afford poor judgment and deadly "accidents." When is someone going to give Jeremy's life - and death - the attention it deserves? You don't have to be an adult, or a black person, or whatever stereotype people might conceive of, for police violence to hurt you. Murder doesn't discriminate. Ask the grieving family of (white) autistic David "Levi" Denham, or the grieving (white) family of James Dudley Barker, or the grieving (white) family of Ethan Saylor. Their families aren't comforted by the fact that their murdered loves ones had white skin. They want - and deserve - justice. 

I need to know that somebody in the disability community...somebody in the autistic community...more people from the anti-police violence activism community...somebody who is a freaking human being cares about the death of this child from our communities. Charges have been filed, and that's a good start. But it's not enough. Not even remotely enough. 

If Jeremy Mardis doesn't matter, then I sure as heck don't matter. And neither does autistic son nor my autistic daughter. I need to know Jeremy mattered, and matters. I need to believe that people still feel outrage when a child is unjustly killed, especially a child from my community. I need to know that even if it is not trendy or popular to care that people will care anyway. 

Will you join me in making contact with the Louisiana State Police (who is investigating the Marksville Police Department)? They need to know we are outraged. They need to know we are advocating for Jeremy to receive justice. They need to know that it is time for them to adopt an official policy banning excessive use of force and shooting into vehicles.

Please direct your concerns to Lieutenant JB Slaton (Public Information Officer, Louisiana State Police)

Phone: 225-925-6202

Thank you,
Morénike

Thursday, October 1, 2015

Why I Decided to "Come Out" of the Autism Closet


I've always been autistic, but I haven't always known it. I've known that I was different from other people, but that difference didn't have a name that I was aware of. It was just the way I was. Some of the ways that I was different were things that were pretty cool. Like the way I could easily remember and reproduce much of what I'd seen or heard; the way I could figure things out that stumped other people; how deeply I felt about things; my naturally authentic nature. 

Other things, though, seemed more challenging for me than other people, like socializing, making myself understood, unpleasant noises and sounds, and dealing with sudden changes. I was a living contradiction: I was reading on a college level in early elementary school but couldn't tie my own shoelaces; I could endure intense pain but the sensation of a tag from a shirt against the back of my neck or water inside my ears generating endless tears; I could converse easily with adults but struggled to make sense of my peers' chatter. And even when comfortable, sometimes I couldn't speak at all, because the words wouldn't come out right or were too hard to find - and I needed my pen and paper to speak for me. Etc, etc. My communication, socialization, sensory experiences, and speed/manner of processing and responding to everything were so very different than everyone's (except my mom).  

Being the way I was...it was the only way I knew how to be. For the most part I didn't have a problem with myself, though I did wish things that were so easy for other people weren't so hard for me. So I guess I did somewhat have a problem with myself, but only in comparison to other people; not from within. Because of that,  I struggled with accepting myself for years because it seemed that who/what I was must somehow be wrong. Fortunately, eventually I realized I was exactly the person I was supposed to be. Sadly, it took years. But at least it happened. It still didn't have a name, but I didn't know there was a name anyway. 

Speaking of names, until adulthood I had scarcely even heard the name of term "autism." I had little concept what it was. I recall a daytime soap opera I watched as a child that featured a character who had an autistic daughter. In most episodes the daughter was hidden away at some expensive "special school." Shockingly, the girl's mother was embezzling funds - to pay for her daughter's tuition. According to the storyline, she felt that she had no other options. The take away message seemed to be that autism was something rare, debilitating, and tragic - and that those unfortunate enough to be afflicted by such a thing required costly care. Other than that, I had little conscious exposure to known autistics nor information about autism. It just didn't come up. 

Fast forward many years to motherhood, in which I find that I am blessed with the most amazing children on the planet, two of whom happen to be on the autism spectrum. It was through their diagnoses, subsequent research, and thorough self-evaluation that I began to seek answers about my own neurology. Through them, I first suspected and later confirmed that I was autistic too but simply hadn't been aware. It was extremely eye-opening and powerful for me to finally have this insight about myself. Equipped with this new knowledge, everything began make so much sense to me. 

I only wished that I had been able to have this awareness much younger, when I needed it thoroughly. It would have helped me understand how I best operate, learn, handle challenges, socialize, etc. I could have avoided costly mistakes, made different choices, sought strategies to have my needs met in a way that worked for me, and I could have had opportunities to stand up for myself. Armed with this knowledge, I am now able to do those things. But I realized that unfortunately there were many lost opportunities from my past.

I knew I could never get those years back. But now I wanted to try to give others what I hadn't been able to have for myself. 

A chance to know, and accept, thyself. 

I think it's important to point out that I was already a part of the "autism community" as a parent of autistic children; I didn't have to reveal my own diagnosis to others. And in some ways, both because it often seems that the voices of autistic adults are (sadly) perceived as less relevant than the voices of non-autistic parents/caregivers and because individuals like me are often disdained and/or disregarded by some members of the autism community as "not really autistic/not autistic enough/not like my child," it may seem that there was little to "gain" from coming out as autistic. And a lot to lose. But I still wanted to. For nothing had changed - except everything had changed. I was the same person before and after the discovery...except I wasn't.  I was no longer unaware about who I was. All of me. My full, true, perfectly imperfect autistic self. 

I more than wanted to come out; I needed to. I wanted anyone out there who remotely identified with me in any way (age, gender, ethnicity, region, etc) to be encouraged by my existence. To know that they were not alone. I wanted autistic kids (like my own, and others) to know that it's okay to grow up to be an autistic adult - like me. I wanted people to know that though I have very real challenges, being autistic has also afforded me many strengths too. That my (nor your) life is not "destroyed" by autism, but it is very much intertwined with it and all of its elements (positive and negative). I wanted autistic adults who were (like myself) late diagnosed to know that there was a community - the autistic community, filled with people like me who have found one another. I also wanted people from various groups often less represented in autism to hopefully feel a sense of kinship with me. 

Maybe if I could be willing to share about my life others would be willing to live their (autistic) lives. 

So when I came out as autistic, I did it big. That fateful day I participated in a local cross-disability festival that highlighted various films, images, and other content with a focus on disability acceptance. I stood next to a "larger than life" image of myself that was part of a traveling photo exhibit. Next to my image were the following words:

"Morénike is an autistic adult who proudly wears the hats of wife, mother, advocate, and student. She is passionate about social justice, global health, education, adoption, and community empowerment."

I came out as autistic publicly, and I have never regretted beginning to live my authentic life. I am free - to be me. I swung the closet door open that day and stepped out, never to return.

Image of a closet door with light emanating from it. Photo credit: HuffPo


Sunday, September 27, 2015

So...About Families Living With HIV (Like Mine)


It seems like "everybody and their mama" is doing or has done some type of "top ten" list about this thing or that thing. I'm no follower, but it looks pretty harmless. So I decided to come up with one of my own. This is a spontaneous list so I'm sure there are many more things that could have been covered other than the ones I've listed here. These are just mine. :) So here goes...10
things you need to know about families affected by HIV.

 1. For the most part, we are very much like your family. We laugh. We cry. We joke. We have fun. We love one another. We just happen to also have one or more members who have been diagnosed with HIV.

 2. I chose the words "living with HIV" because that's exactly what people diagnosed with HIV are doing - living. NOT dying. Advances in medicine over the years have transformed HIV from what was once viewed as a death sentence to a chronic illness that's fairly easy to manage. People living with HIV now have a life expectancy that's not much different than people who don't have it - and are able to, if they desire, marry HIV negative individuals, have satisfying lives (including romance) and give birth to (HIV negative) children, all WITHOUT transmitting HIV!

 3. We have a greater chance of getting struck by lightning or winning the lottery than we do of contracting HIV from the family member(s) in our home with the diagnosis. HIV has never (nevernevernevernever) been transmitted in a typical household setting. We share eating utensils, play, roughhouse, enjoy hugs and slobbery nighttime kisses, change diapers, tend to boo-boos, etc. - with ZERO risk of transmission. 

 4. The people in our families who don't have HIV who marry/parent/live with/adopt/etc. the people in our families who are living with HIV aren't saints nor deities simply for loving someone whose HIV status is different than theirs. They don't deserve, nor want, accolades and praise for being in one another's lives. They married/connected with/adopted/etc. for love, and they feel that they are mutually lucky to share their lives with one another. That's fully rewarding in and of itself. 

 5. You can't tell by looking at us which particular member(s) of our family has the diagnosis because HIV doesn't have a certain "look." It could be one of us, or two of us. It could be all of us. To us, it doesn't matter which one(s) it is...what matters most is that we are family and that we have each other. 

 6. Families like us are everywhere, and we are diverse. We are black, we are white, we are Latino/a, we are Asian, we are indigenous/First Nations, we are biracial/multiracial. We live next door to you, go to school with you, we are your physician, we are your attorney, we are your cashier, we are your stylist. We are gay, straight, bi, pan, ace. We are neurotypical and neuro-atypical. We are old and young, citizen and immigrant, rich and poor. 

 7. HIV is just one part of the many aspects that make up our family. It's important, but so are so many other things. So please don't dwell on it. We don't want your pity. We just want your friendship and your respect; the same respect you'd give to any other family. 

 8. We are NOT ashamed of HIV, but for various reasons while some HIV affected families are pretty open about it others choose to maintain a sense of privacy about living with HIV. Both choices are equally good and make total sense. Every family has a different support system, lives in a different community, has different strengths, different challenges, different needs. Disclosure is very individual; with some families preferring being more public, some preferring privacy, and some falling in-between the two. However, if we do entrust you with information about our HIV status, we expect you to abide by THE LAW and not share with others without obtaining our explicit permission. 

 9. It hurts us when people use stigmatizing language about us and about HIV such as "HIV infected" and "AIDS victim." Neutral and person-first language is preferred by most people in the HIV community. 

10. We need you to align with us and help draw attention to issues that affect us - because although your family might not be like mine because HIV is a public health issue inadvertently those issues affect you in some way too. Stigma, lack of interest in HIV related issues, and misinformation about HIV hurts more and causes more destruction than HIV itself ever will. It is the reason why the saliva of a person living with HIV is consider a "deadly weapon" in many states and exposing someone to it can lead to a conviction of "attempted murder" even though HIV isn't transmitted that way. It's the reason why we are at risk of having critical HIV research and services funding slashed at state and federal levels - even though there is still a great need. It's the reason women and girls living with HIV experience violence at a rate four times higher than those without HIV. Stigma is deadly, and there's only so many of us - families like mine - out there. We need families like yours, that are not affected by HIV, to help dispel stigma too. Help "infect" everyone with the truth so that we can be accepted and not feared. 

And here's how to start!

For more information about HIV, visit some of the websites below. Get educated!


http://www.actupny.org/documents/Denver.html

Image result for hiv
Image is an Avert infographic with text that states "HIV is NOT transmitted by..." and then images and text state: insect bites, toilet seats, kissing, sharing cutlery, touching.