Monday, August 15, 2016

Gone too soon: Missing Sandy, Channing, Gene, Charles, Sharon, and Uncle

There's been too much death lately. 

The hashtags and the "Pray for ______________" slogans have all began to run together in my head. Another bombing, stabbing, shooting...and
more lost lives. While the rest of us mourn for a few days/weeks and then resume our lives as they were before the latest tragedy, some people's lives are irreversibly changed when these events occur. Maybe it happened in their local community, or maybe they are a relative or close friend of the deceased. Or maybe there is some other connection. Whatever the case, they aren't able to just "move on" like the rest of us can. In a sense they are victimized twice: first by the incident that impacted them personally and second by the world that swarms in, lingers momentarily, and then dissipates nearly as quickly as they arrived, leaving those still actively mourning seemingly abandoned and forgotten. 

Convention dictates that I'm supposed to be all right with death. I mean, I'm a Christian, right? So death should be no big deal. There are a million platitudes about death and the afterlife and Heaven and Jesus and no more pain. According to all of that, they're probably in a better place. I will see them again one day. I should rejoice that they aren't suffering any more. Y'all get the picture. 

Platitudes don't do it for me. (And they probably don't do it for you.) They might technically be true, and they might be well-meaning. But they suck. They are hollow. They are poor consolation for a grieving heart. They might technically be true, but that doesn't make them suck any less. 

It doesn't make me feel better to know I'll "see them again in Heaven." Because I want to see them again NOW. Here on Earth. Other people can lie if they want to; I prefer to be real. I love the Lord too much to be fake. I am human, and therefore I am selfish. And as Heaven seems a long way off, whether or not that's the case, I would be dishonest if I said that thinking about seeing them again in Heaven in an undetermined amount of time in the future is any consolation when I am longing for one more day right here, right now. 

Given that Jesus wept after the death of Lazarus, I don't think I'm far off nor unspiritual in this. It's okay - normal, even healthy - to grieve. And there's no one way to do it. 

The only problem is that I don't know to do it. 

I have yet to find "my way" to "deal" with death - unless my way is to not deal. It's been like this as long as I can remember. (So I guess I actually do have a way, which is a way that's kind of a "not" way. If that makes any sense. It does to me.) 

I "deal" with it by "not dealing" with it. I always have. It's the only thing I know how to do and that comes naturally. I don't "do" all, or any, of the things that evidence-informed sources on grief suggest. I just don't "do" anything really, other than just go with it (initially) and then file it away (permanently).

It's hard to explain. Whether it is the death of a cherished relative, a friend, an icon, whatever, I have not yet in all my years of living developed any type of formal/established protocol that I can turn to. It doesn't always look the same though, in the beginning. Me at "ground zero" in 2012 probably looks radically different than 2016. The early days of grief differ for me. Sometimes I fall into a deep internal abyss. Sometimes I turn to eating for comfort. Other times I can't even think about eating. Sometimes I delve into the Bible and increase my prayers. Other times I can't even form a coherent prayer. Sometimes I am overcome with some emotion, like anger or sadness. Other times I become enveloped with a rapid sense of numbness and apathy. 

I never know what it will be, but one thing that usually happens is that at some point I find myself compartmentalizing in order to cope. It makes me sad to even type this because I know how it comes off, but it's true.  I don't think it's a bad thing, though I despise how it might be inadvertently feeding into the "autistic people have no empathy" stereotype. (Which is complete crap; if anything we have too much empathy, more than it is humanly possible to handle.) 

It's almost as if in order for me to function, because I don't really have an effective way to "deal" with how I am feeling, the other person almost ceases to exist. I might mention them periodically because it's not like I actually WANT them to not exist. But in general, they are essentially removed from my daily life, my consciousness, my conversation. They are not removed from my heart, not ever. But I push them to a place they have to dwell away from things in order for me to go on.

At the same time...

There are a lot of times in my life where I am aware that I can't run from death. Not if I call myself a mother. In some aspects of my life, not only do I not run from death, I must run toward it - intentionally. My fears, struggles, issues with death and loss don't apply then. They can't apply; I won't let them. I have to face death in some ways, and I do it willingly and flawlessly and regularly, because my kids need that from me and I will do anything, anything for them. You see, my children don't remember their parents. Their parents are dead. Unfortunately my kids remember absolutely nothing about them. Not what they looked like, not the sounds of their voices, not their personalities. Not the time they had together. Nothing at all. 

And as their mom, it is my job to make sure their parents' memories never die. It is up to me to make them come alive. To bring them up as often as I can in appropriate every day circumstances to make sure that they associate their parents' memories with more than just sadness. I've had to take paragraphs from refugee demographic files and form whole, living, loving people out of those scant details. Because their parents mattered, and they still matter. 

It isn't easy, but thank God I'm kind of creative. By resurrecting the details that I know of their parents and interweaving them into our lives through casual conversation, their other parents still live among us. They aren't trapped as stereotypical impoverished, sickly refugees who died while their children lived. Their courage, their hopes, their ingenuity, their love for their children, their character is fleshed out and breathes today. They live. They're real, and they are a part of my babies' pasts and also their present and future. They had parents before me and those parents will not be forgotten. I can't let their parents be pushed into the Crystal Room. I can't let them die - not any of them. 

But I have trouble doing this for myself. It's too hard. So maybe this post is a start. So here is my fledgling effort to grow up. To face death and loss differently. To let my friends who have recently died (2015 and 2016) still breathe. Starting with the most recent. (And d@mn, this is so hard to write. So hard.)

Sandy Kinnamon, 2016. When I think of Sandy, I think of fireworks. She was bright and beautiful and lit up the sky. Sometimes, like fireworks, she could be pretty intense. But also like fireworks, she left an impression. She was loving, giving, loyal. She was smart, funny, deep.

I miss hearing her ask, "How're you doing, chica?" I miss swapping stories about our kids. I miss talking about our shared pride as well as our shared struggles as black women. I miss praying together, venting, laughing together.  I just...miss her.

Channing-Celeste Wayne, 2016. It has only been a short while since she's been gone, but it seems like ages. She was encouraging and sweet. She was thoughtful. She was a fighter. Even as she battled enormous pain she still valued her role as an advocate, as epitomized by her determination to attend AIDS Watch despite her illness. She cared so much about fighting for the rights of others and living an authentic life. She was a unique person and she was taken much too soon. 

Gene Ethridge, 2016. He was such a cool guy. He viewed the world with a "glass half full" perspective. It's not that he didn't realize that there were problems in the world; he just believed those problems could be overcome. He was so nice, so hard-working, so sincere, so easy to talk to, so down to earth, so dedicated. His death is such a loss for our community. 

Charles Boyd, 2016. His death was so abrupt that it seemed unreal as I had spoken to him over the phone and literally the next day I learned that he was gone. He was a lifeline to my kids and I; because of him we had information about where they come from that was precious to us. Their family's compound before the war; their community of origin, their heritage. He was so helpful, and so funny. Always joked about my "white girl" American accent and teased me about being away too long from "the motherland, home of the most beautiful ladies" as he called it. He loved life and lived it boldly. He came into our lives so quickly, and due to contracting ebola was gone just as quickly, but even though we only connected for a little over a year, he was more than a friend. He was their family - and therefore, my family. 

Sharon Maxwell-Henkel, 2016. I still catch myself sometimes about text or email Sharon some interesting article about art or about women and HIV - and then I remember. She's gone. Sharon was a huge mentor to me in many ways. She had been advocating for disability inclusion since before I was alive and she had been involved in HIV advocacy long before those three letters had any personal meaning to me. I haven't deleted her number and her texts from my phone nor have I deleted her emails. She was reliable, assertive, truthful, strong, encouraging. Sharon is the advocate I want to be when I grow up - but she wasn't just an advocate. She was a friend. 

My dear uncle, 2015. Stories of his legendary painful spankings both thrilled and frightened me for years, even though I never received one myself. He disciplined hard. He loved harder. I only met him face to face a handful of times, but since my childhood he faithfully kept in touch with letters and calls. And later, even emails (always in all caps; Unc wasn't the most technologically advanced guy, lol). He was a devoted father to his kids, there for them even when they did wrong. He was a man of few words, but what he said was impactful. He only stood five feet tall, but he emanated strength and had a profoundness about him that far exceeded his stature. They say "black don't crack" and that certainly fitted him; he never seemed to age. Even when his head was full of gray his eyes were still wise and clear; his face smooth and boyish even with its stern countenance. His death leaves a void in our family. 

There's so much more to say about these wonderful people. Sandy was such a phenomenal activist, as well as a loving mom. Channing was a role model for not only transwomen of color, but for people living with HIV. Gene was a servant leader in the HIV community who epitomized racial unity in his genuine love for people of different backgrounds. Sharon was like that too - an fiery, yet loving disabled woman and cancer survivor living with HIV who encouraged so many and made huge inroads in HIV clinical research advocacy. Charles was technically a poor man in a resource limited setting, but he was overflowing with wealth where it counts - in his heart. My uncle was a faithful Muslim father who supported and fed into the lives of so many people. 

And still I cannot accurately illustrate them, not the way I want to. Short summaries don't do any of them justice. But how can I begin to capture them in writing? They were so much larger than life. Imperfect like us all, but still so powerful and impactful. Just writing this has caused me to rain tears all over my keyboard, and a sister ain't rich. I need this computer! I don't think this thing is waterproof, so I need to back off. This is a big step for me, doing this. But I owe it to them. They are worth a little discomfort and a lot of tears. And I think that they would do it for me. 

I needed to do this. I have blogged about the deaths of people whom I don't know but whose death hurt me deeply. Members of my tribe murdered by caregivers. Or by violence. Or by some other means. Celebrities whose work touched me and whose legacies I wished to honor. Things like that. And I'm glad I did. I am proud of those writings. I am proud to make sure to speak up about Jeremy and Elisha and London and Tamir and Eric and so many others. I will continue to do so, as long as I have breath in my body and the ability to type or to dictate words to be typed if I ever lose the ability to type.

But I seldom have a word to share about the people I knew and loved who are no longer living. Like the ones I mentioned above. And others who preceded them, like sweet Sister Caroline, like Asia, like Ramadan, like Dr. Kim, like Justina, like Eric, like my beloved grandparents (one of whom I lost on my birthday), like my husband's inspiring grandfather. So many people. 

I don't talk about them, and I try not to think about them. Because it hurts. Because it's sad. But maybe that's not the way. Maybe sometimes I DO need to talk about them. To #SayTheirNames. Even if it's just to myself. Even if it's just today. Even if it's just alone in my room on my face before God crying and screaming, "Why?" Because I don't know why. I don't understand.  I don't know if I'll ever understand. But they mattered to me. They mattered in my life. I don't want them to be forgotten. I don't want them to disappear, and I don't want anyone to think I don't care and I didn't care. And maybe I shouldn't, and probably don't, care what people think...but in this instance I do. 

I want the memories of my friends to live on. I want you to know who Sandy was. Who Channing was. Who Gene was. Who Charles was. Who Sharon was. Who my uncle was. I want the stories that depict their beautiful souls to remain on this earth where I live even though they themselves no longer do. And though I do believe I will see them again someday, that's not enough for me. I want to see a form of them now, today. Maybe by bringing them out of my head for a moment, even though it's harder than I can describe and doing so evokes tears, I can still "see" them and feel them in my own way before putting them back. Maybe that's a good thing. Maybe that's healthy. 

Maybe it's worth the momentary pain if it also brings forth something. What exactly is this all even accomplishing? Not exactly sure, as this is unchartered territory, and not something I plan to do regularly and I didn't exactly think this through. I guess I hope by mentioning them those who also knew and loved them got a moment to bask in their memory...and those who didn't got a chance to glimpse the awesomeness of who they were. So...I suppose mission accomplished then?

Even though right after I press send they are going right back in their place in my head where they live peacefully...I am okay with that.  For me, maybe this way is healthy too. That's what works for me. 

There are other people like me out there too. Please don't make the mistake of assuming because we don't express grief in the conventional way means that we don't care. Some of us openly cry; some of us don't/can't/won't. Some of us mention our lost loved ones often and look at/display their pictures and/or other remnants of their life on earth; some of us never mention them at all. Some people bury themselves in work or hobbies or people or substance use or food or whatever. Or bury themselves inside themselves. There are probably as many ways to grieve as there are stars in the sky. Some ways might not make sense to you, or to me. But that doesn't mean that person didn't, and doesn't care, even if it isn't easy to tell how they are feeling. 

I have my way, sort of. I don't understand my way and I don't even really know if I fully agree with my way.  But it's my way; it's what I know how to do. It works. This other way that I tried today...I don't think it's something that I can/will/want to do often, or maybe even ever. I can understand its merit. I can see how some people find it helpful, and I am grateful for what it can do. For me, however, it isn't natural and it takes too much from me. I think it was worth it today, even if it never happens again, but I don't think, for me, and maybe some others, it is necessarily "the" way. It is simply a way. 

I think I am fine with that. 

And I think God would smile down on that realization. And that they would too. 

Sunday, August 14, 2016

Disrespect & Ableism from a Southwest Airlines Representative: My Story

It has taken me a week to be able to write out my thoughts about my horrific recent experience with Southwest Airlines. Though I did encounter some very helpful and very compassionate Southwest Airlines staff that day, I am hurt, disappointed, and disgusted by the unprofessional and ableist way that I was treated by Southwest Airlines. 

Last Friday (August 5th) I bought a one way ticket from Houston Hobby to Dallas Lovefield. I chose the 11:30 am flight so that I would arrive in ample time to be able to rent a car and drive to the funeral, which started at 2:30 pm in Dallas. After the funeral I planned to drive back to Houston in the rental car, as I needed to get back home that same day in order to return to my family and to care for my children. I had already spent the previous weekend in the Dallas/Fort Worth metroplex upon learning of my friend's death. 

I had taken the day off from work (unpaid leave) in order to attend this funeral, as it was the funeral of a friend (a mother of five) for whom I cared for very much. I have recently started a new job and am still under new employee probationary status, so it was a big deal for me to request the Friday off to attend the funeral of a non-relative. However, I took this risk, as she was a good friend of mine and neither she nor her husband are from Texas. I felt that it was very important to me to be able to be there to support the family and to pay my last respects to her as well.

Not long after boarding the flight around 11 am, there was some type of issue with the manifest that required them to have to call names to take attendance of each person on the plane. There was apparently some individual showing as not supposed to be on the flight who seemed to be on the aircraft. This created a delay with our departure. There was also some undisclosed maintenance issue that caused an additional delay. As we sat in the hot aircraft, our 11:30 am departure time came and went, and we were still on the ground.

The flight attendants tried to be jovial with the passengers and ease our concerns about the delays. However, after 15 minutes of waiting became 30 minutes and 30 became 45, I became increasingly worried. Like several other passengers, I pressed the service button for the staff and politely inquired if there was a way to get an estimate of how much longer we would continue to wait. Worried about missing this very important funeral, tears began to form as I asked my question, though I was still respectful and polite despite my emotions. 

I explained that I realized that several people were asking them questions and that it was not my intent to pester them, but I needed to some information because of the funeral. I shared that if our flight was going to be further delayed I would need to get off the plane to try to get the airline staff to rebook me, as there was a flight at 1:00 pm that I could try to catch instead. (There had been a flight at 12 pm, but we had already missed it.)

The flight attendants were kind and sympathetic to me and to the many other individuals who'd asked this question. They reassured us that they would attempt to find out whatever information that they could. They didn't really seem to have a lot of details about what was happening, unfortunately, so though we did receive updates, they were somewhat sporadic. 

The pilot, who was actually retiring that day (after that very flight) after decades of service, was also very kind. He left the cockpit and personally went into the airport to check on the matter for all of us as well. The entire crew did an amazing, amazing job despite being faced with terrible circumstances that day, and I commend them for treating us respectfully and being professional.

45 minutes became one hour. One hour became an hour and thirty minutes. We had been sitting on this plane since 11:00 am and had not moved. As aforementioned, at various intervals the flight attendants would get on the loudspeaker and provide what seemed to be promising updates that implied that we would be leaving *any minute now. (That phrase was not explicitly stated, but it seemed to be their perspective.) At approximately five minutes before 1:00 pm we had another announcement, this time by the pilot himself. He stated apologetically that we would all have to get off the plane and be rebooked on another flight. He again apologized for how we had been inconvenienced and assured us that their staff would assist everyone as needed in making a smooth transition to the next flight. 

Understandably, this news did not go over well with me. As I waited my turn to stand and exit the aircraft I replayed the whole scenario in my head in disbelief. When my turn came, I retrieved my carry on bag from the overhead bin and walked down the walkway into the airport, defeated. My tears returned, this time with greater fervor. I felt dejected and saddened. I knew now I'd never make it to the funeral; we were going to be rerouted to a flight at 2:00 pm. Assuming no delays, we would arrive in Dallas at 3:05 pm. The absolute fastest I could be at the funeral home would be 3:35 pm (running at top speed through the airport and rushing to get a taxi already waiting in cue, as I had no time now to rent a car). By then, the funeral would be over, as it was scheduled to last for one hour. I would never get a chance to say goodbye to my friend now, and my promises to the family that I'd be there were now being transformed into lies. 

I had risked my job and spent money I didn't have to spare...all for nothing. 

I shuffled down the walkway following the crowd of passengers. As the hopelessness of the situation overwhelmed me, my tears flowed harder and were accompanied by audible sobs. I just...couldn't believe it. I fly fairly frequently and I know things happen beyond people's control. I didn't blame the pilot, flight crew, or anyone really for the unfortunate circumstances. It was just the worst possible timing, and it was extremely hurtful. 

As an autistic person, I had exercised an enormous amount of patience and restraint throughout this ordeal - more than some passengers who were openly criticizing the flight crew despite the fact that this wasn't their fault. This however, was too much - on top of the intense sadness that I was already feeling over my friend's death. This sudden, unpleasant change was a lot for me to deal with.

As I neared the mid-point of the walkway, I passed a slender older white male. He noticed me crying and slowly approached me in a non-threatening manner. With a look of genuine concern on his face, he told me he was the pilot and asked if he could help me. I shook my head and cried some more. "I'm going to miss my friend's funeral," I choked out. He sighed sympathetically and held out his arms. I didn't know this man at all, but his concern was reassuring. Even though I don't typically like hugging strangers, I rushed into his arms and buried my face in his side, still weeping. 

We walked together down the rest of the walkway. "Is there some other flight I can take, please?" I begged. "I'll pay anything."

The pilot said to me gently that he would try to find a way to help me. We exited the walkway and entered the airport where he guided me toward an older woman standing near the the gate. He introduced her as his wife. They both urged me to sit for a moment and gestured to a waiting wheelchair. I complied, sitting in the wheelchair while my tears continued to fall. The pilot and his wife leaned over a nearby counter conversing with someone, though I was unaware of what was being discussed. 

Shortly afterward, my wheelchair was suddenly in motion. I wasn't sure what was going on as I whizzed by people in the airport. Not long after, the wheelchair came to a halt. The person pushing it stepped from the behind the wheelchair and stood in front of me. She was a slender white woman. She looked at me and snapped, "What is the problem? What is wrong with you?" in a rude tone of voice. 

I was confused and shocked by the way she was speaking to me. "My friend died," I managed to get out. "I was going to her funeral."

"Well, listen," she snapped again. "You need to get yourself together. This flight crew is NOT going to deal with this. If you are acting like this you will NOT board this plane. They won't keep you on the flight with all of this. You need to get control of yourself."

I sat in the wheelchair looking up at her. I felt as if I'd been slapped across the face. I didn't know this woman nor did I understand why she was being so mean. Nor had I been informed that they'd found another flight for me, though I was grateful. I felt shamed and violated by the way she was looking at me and speaking to me. My tears dried up instantly as I sat there. She continued to look at me. I struggled to find my voice. 

"I wasn't trying to cause any trouble," I stated weakly. "I was crying because I was sad about missing the funeral. Also, I am autistic; I feel things very deeply and sudden changes can be difficult for me."

"Well, I'm sorry that you have that problem," she answered in a condescending tone. "Do you think you can board?"

"Yes," I replied. I stood up shakily from the wheelchair. She approached the staff at the gate and spoke with them. They waved me on, and I walked woodenly onto the walkway and entered the aircraft. I sat down, feeling traumatized. My tears were gone, replaced by a sense of dread.

As I still didn't really know what was going on, I asked the person sitting next to me what time this flight was scheduled to leave. "One o'clock," she answered. I looked at my phone; it was 1:07 pm. I sat back and closed my eyes. Doing the math in my head with regard to arrival time and travel to the actual funeral, I knew I'd be late. However, I would make it. 

I was relieved - and yet still full of anxiety. The person's tone, words, and facial expression lingered in my mind. I desperately needed time to get myself emotionally prepared for the funeral, to deal with not only the sadness but also to regulate myself mentally after the emotional roller coaster I'd just endured with the very real threat of missing the entire funeral. But I could do none of that because I felt stricken and hurt by the way I'd been treated. I did not deserve to be treated so shabbily. 

Long story short, I did attend the funeral (although late). However, the whole experience prior to the flight took its toll. I knew I was not in any place psychologically to get in a vehicle and drive over four hours back home. My hands were shaking and I felt lightheaded and weak. I ended up having to purchase another one-way ticket from Southwest that day - this time to fly me back to Houston. (The staff on that flight were nice and I am thankful for them.) I also had to pay for an uber to take me back home. I would have had none of those expenses had I not been treated in such an uncaring, unprofessional, ableist manner by this staff person. 

The majority of the Southwest Airlines staff that I encountered that day were professional and nice not only to me, but to other passengers. I am not going to judge an entire airline by the poor actions of one individual. However, the way she acted was uncalled for and needs to be addressed. 

Human beings are allowed to cry, including patrons of Southwest Airlines. They are allowed to feel sad. ESPECIALLY when the sadness is a direct response to an action that was caused by Southwest Airlines. I was not disrupting anyone, creating a safety hazard, being violent, disrespecting anyone, or impeding anyone's ability to do their job. I was crying because after I had waited patiently for a flight that I paid for to depart, I was being rewarded by being re-routed to a flight that would have caused me to miss the funeral. That is not an unreasonable reaction - whether or not one is autistic. 

Due to the quick thinking and influence of that wonderful pilot, I was rushed onto the 1:00 pm. But that was not the original plan - and the other passengers on the canceled flight were not as fortunate. I had no way of knowing that this amazing gentleman was going to pull some strings for me, so I think it is completely understandable that I was crying over being stuck on the 2:00 pm flight. Frankly, it took a great deal of restraint that all I was doing was crying, as the whole situation was triggering and I could feel a meltdown and/or an anxiety attack looming that I fought with all my might to suppress. Yet I was being treated as if I was some out-of-control drama queen who was potentially risking the flight and its crew?!??

All types of people fly on Southwest. People who are non-disabled as well as people who are disabled. All of those people deserve to be treated with respect. I did not ask for nor expect any special treatment - though disabled passengers should be able to access reasonable accommodations when they fly if needed. What I did, and do expect, as a paying customer, is to be treated with respect and dignity. I did not deserve to be treated like a piece of trash. 

She had NO right to snap at me. She had NO right to treat me in such a condescending manner. She had NO right to speak to me the way that she did. She had NO right to call me a "problem." For being autistic is a part of who I am just like being a woman, being a black person, being a Christian, being a parent, etc. It is not my "problem." It's how my brain works. Calling it "that problem" is calling ME a problem. Her statement was inappropriate, discriminatory, and insulting.

I didn't disclose that I am autistic to her for her to belittle me. I shared it as additional information for her to understand why I was sad, even though I think a non-autistic person might be similarly saddened under the same circumstances. I mentioned it to her for her to try to have some type of context as to why this whole situation with the lengthy delay and the near-missed funeral was especially hard on me individually, as an autistic person. But none of that occurred. She never apologized for how she acted nor did she begin to act differently once she knew. I fear the next autistic child or adult to board a Southwest Airlines flight that has to encounter her, as she seemingly has no understanding of not respect for autistic people - or people at all, frankly. 

Again, I am enormously grateful for the many Southwest Airlines staff who demonstrated that they have respect for passengers and who were shining examples of customer service. Unfortunately, the actions of that one individual imbrue the name and image of Southwest Airlines. 

I am an autistic person, and I matter. My money matters too. I should be treated as such. I didn't deserve to be chastised and insulted. I shouldn't have had to waste money that I don't have to spend as a result of the actions of your staff. It is my hope that you address this so that others will not have to be subjected to the poor customer service and ableism I had to endure that day. 



Saturday, July 23, 2016

Love Letter to Reading/Writing

You were my first love. And I'm still hopelessly in love with you. Truly, madly, deeply.

I remember how you were there for me when I was young. When I couldn't always get the right words to form when I was speaking you helped me to express myself. When I didn't understand what others were saying you helped make it clear. And not just when I was young. You've done that throughout my life, and you do that now. 

We've had so many memorable moments, you and I. You entertained me innumerable hours with the tales of others' exploits and ideas. I was so captivated by you. When I supposed to be asleep at night I would sneak out of my bed and lay on the ground in my dark bedroom so that I could see you in the narrow strip of light that beamed through the crack under the door. I cherished those moments alone with you at night. It was much more valuable to me than sleep. 

You taught me so many things. Through you my creativity was piqued by the Italian Renaissance; my heart was grieved by the Middle Passage; my mind was stimulated by Shakespeare; my soul was inspired by Langston Hughes. I traveled to faraway lands; past and future times; was male and female, black and white and brown and yellow and red, human, alien, and animal. 

But while you helped me discover the world around me, but that isn't all. I evolved from being a passive receptor into an active participant in our relationship. Once, I merely followed you, and you were gracious enough to allow me. I guess I was more of an understudy than a parasite in our symbiotic, growing connection. I found myself in you and the courage to emulate you - and eventually forge my own thoughts and word, through you. I found my faith, something that had been not only foreign but also unappealing, through you. You have transformed my existence, my understanding, my entire world. 

People laughed at me in a good-natured way in middle and high school because I took advantage of the minutes in-between classes to spend a little bit of time with you. I'll admit to being so focused on you that I bumped into people - and lockers - once or twice. (Okay, more than once or twice...but let's get back on topic here!)

When I was in an unhealthy relationship I often cried out to you because I didn't know who else would understand and not judge me. You've been there with me in the lowest moments of my life - even when I no longer desired to continue my life. There is no one whom I could have poured out my heart to - the massive pain, the shame, the depths of my depression and fear and rage - who could have provided me a nonjudgemental platform for my hurt. 

We've shared so much joy too. We have made change together. We make a good team. I am grateful for how you allow me to be myself and share myself. You are not only there for me with big things, but even with the "little" things. I can't even count how many times you've saved me from being forced to converse with people seated near me on airplanes or from having to ward off the unwanted interests of a potential suitor. When my albatross, undesired social interaction, tries to rear its head, I pointedly turn to you and engross myself in you...and voila! Crisis averted. You're like "Kryptonite" to others at just the right moments, lol, and I am so freaking grateful!

I have learned to appreciate not just what you are to me, but what you represent in the lives of others too. When my daughter's spoken words were primarily absent with the exception of a few cute echolalic phrases, you introduced yourself to her too, and gave her a voice. She did NOT need to use her mouth to have a voice, and you helped illustrate that. Because of you, the brilliance that is Emma, Amy, Rhema, Carly, and so many other phenomenal non-speaking people is known to the world. Thank you. 

You've helped me join with others to advocate for so many important causes, including but not limited to opposing the elimination of women, youth, and family-centered HIV services (Ryan White Part D); racial justice; disability discrimination; giftedness/twice exceptionality; gender equality; adoption; HIV stigma; refugee youth; autistic empowerment; adoption, and so much more. You've helped me share my story and that of my family. You've helped me to fight for others as well as myself and my family in a far more effective way than I could have done without you.

Because of you I have met some of the most amazing people. Because of you I have traveled to numerous cities and states (not other countries yet, but a sister is hoping/praying for that!); because of you I have been blessed to be included in books, magazines, abstracts, and websites that I would have never dreamed was possible for this disabled black daughter of African immigrants who grew up below the poverty line. Heck, you helped to lead me to a speaking engagement in the White House; that's a huge accomplishment for someone who once lived six doors down from the "crack house!"

But even if you hadn't done all of this for me, I would still love you. You are mighty and beautiful and amazing and desirable and intriguing and strong and compelling all of your own accord. I don't love you for what you have done for me, though I am inexplicably grateful for what you have done for me, who you have been for me, what you mean to me. Those things certainly add to everything, but I loved you long before all of that. I love you because you are so easy to love and I felt your love first. I love you because of who you are. 

I know why Paul felt moved to draft Romans, Ephesians, Philippians, Galatians, and all the other "ians." (And the non-"ian" epistles too.) I understand how MLK and Nelson Mandela and so many others were able even in prison to create magnificent, life-changing work. You make the world come along, and your very existence has improved the world. 

People might try to twist you for selfish gain and to manipulate and/or harm others, but they can never taint the essence of who YOU are. I believe the Bible stated it best: "In the beginning was the Word and the Word was with God. And the Word WAS God." (That has multiple meaning for me as a Christian, but there are numerous statements attesting to your value from non-Biblical and also non-theistic sources for those who that phrase isn't applicable; I just can't think of one offhead right now.)

We (the world) needs you. And I, Morénike - I need you. I need you. I thank you, and I need you. For in many ways, there is no me without you. 

You gave me my first language and you will capture my last words. You represent the screenplay of my life. I wish I had fancier, more jazzy terminology to address you by. "Reading"
and "writing" don't have the swag factor you very much deserve. But these will do; it's what we have. You are not any less amazing because you don't have a fancy name. 

You are loved, and you are appreciated. 

Wednesday, July 6, 2016

Falcon Height shooting tonight? How many more?

What can I possibly say?

An hour ago I read about - and wrote about - one black man, mere hours away from me, who was killed by police officers. Moments ago I learn of another, in the state where I was born: a black man shot and left to bleed to death in front of his four year old daughter? (RIP Philando Castile.) Both incidents captured by cell phone video footage. Both incidents tragedies that should have never happened. A dizzying sea of blood, emotions, loss, injustice, devastation...all unfolding on social media. The numbness is creeping in, warding off the psychological shutdown that is near. My mind struggles to make sense of what does not make sense as my black children sleep beside me, unaware of the lethality posed by their very skin. As they slumber, I pray that I too could escape into dreamland. But I cannot. This nightmare persists during my waking hours. There is no escape, and there is no way out.

I once likened this brown skin to an adornment. A vibrant covering full of history; full of the stories, hopes, experiences, and dreams of our brave, strong ancestors...I know it's cheesy.

Maybe it IS a covering...

Like a shroud.

Like a smooth, polished wooden coffin.

Like the dirt shoveled atop one's grave,

Like scattered dreams and faded memories,

Like eyes that are closed, never to reopen,

Like the layer of injustice that coats our existence.

The injustice is heavy in Falcon Heights tonight, as a little girl cries for a father who will never come home

Her sobs drowned out as the people who matter solemnly declare that "All Lives Matter" followed by"What about black-on-black crime?"

Image of a portion of the face of a black female presenting person, tears collecting around one eye. Photo credit: edequity dot org

I'm tired of writing about this, but I know I'll have to write about it again. And again.

All my troubles seemed so far away
Now it looks as though they're here to stay
I believe
In yesterday
I believe
In yesterday
Oh, so suddenly
I'm not half the girl I used to be
No, no, no
There's a shadow hanging over me
Now I long
For yesterday."

A holiday weekend at home.
A road trip, followed by a work training, followed by a movie.

Caught up with stuff. Work stuff. Family stuff. Life stuff. 

Busy and blissfully unaware. 

And then tonight I had a free moment and popped onto Twitter. I saw a hashtag trending. It was a name. A man's name. Possibly a black man's name. 

And I knew. 

I knew. 

It took me all of five seconds to confirm what my rapidly beating heart had already figured out. Dead? Check. Skin like mine? Check. Police involved? Check. Excessive force? Check. Character defamation/victim blaming? Check. Racist trolls on social media having fun at the expense of the death of a human being? Check. Whitesplaining and "not all cops" rhetoric galore? Check. 

I have not yet had the opportunity to learn much about Alton Sterling, the man. Only quick snippets. But I know enough about #AltonSterling the hashtag to know that America has not listened. America has not learned. America has not changed. 

Don't tell me a d@mn thing about how I should be grateful to have a black man (that y'all DIDN'T want) in the White House if I can't have assurance that my black sons will make it home alive to MY house.

Serve and protect. I'm autistic; those are very stimmy words. They sound very - I don't know, authentic? rolling around in my head. Maybe that's why the term is so frequently used? Serve and protect. Serve and protect. Serveandprotectserveandprotectserveandprotect?

Who served and protected Jordan Baker?

Who served and protected Dontrae Hamilton?

Who served and protected David Levi Denham?

Who served and protected Sandra Bland?

Who served and protected Tamir Rice?

Who served and protected Mya Hall?

Who served and protected Aiyanna Jones?

Ethan Saylor?
Freddie Gray?
Pearlie Baker?
Tanisha Anderson?
Eric Gardner?

Who served and protected #AltonSterling?

I'm angry at myself for being lulled into this. "This" being the false sense of security caused by being caught up. By everyday things. Like ice cream and hugs; earplugs and fireworks; movies and mommy time. Not that it wasn't real. But it's only partial reality. The other part, the hashtags and death reality - is always there too. Lingering. Waiting. It might fade into the background, but it will never really go away. 

Just when you feel like you've scrubbed its stench off of your body; just when you think you've bathed yourself in enough  hard-fought, hard-earned almost middle class-ness; just when you've kicked and screamed and  pushed and pulled to grasp a sliver of dignity, of control, of respectability-ness and white people and abled people almost see you as a person.

You get reminded. 
Put back in your place.
Woken up. 

And you realize

That it very well might be
That the only, only thing 
That differentiates you
Or differentiates your son, your daughter, etc
From the list of people above
Is simply time.

Image (found on Twitter) is a handmade poster with text that states: "Justice For_______! I left it blank because I'll probably need this next year." Original source unknown.

Tuesday, June 28, 2016

The Ableist = Me: an apology

I screwed up yesterday.

I gave a presentation in front of hundreds of people last night, along with several of my colleagues. It mostly went pretty well. I was informative. I was candid. I was witty. 

And I was ableist.

I say this because I am a huge proponent of growing and changing. Learning how to be better. I am not above reproach, and when I am in the wrong I need to be truthful about it, apologize sincerely, and strive not to err in the same way. I might not always succeed, but it has to be a priority.

I ended my presentation by asking the people who were part of the HIV community "to stand and remain standing," followed by a similar request for staff, researchers, and allies to do the same. In closing, I said something to the effect of, "At this time, everyone in the room who can should be standing. Thank you for all that you do, and let's continue standing together - until there's a cure."

This ending was suggested to me by a good friend, and I agreed to utilize it. His suggestion in and of itself was not ableist - the way I conducted it was.

I view "standing" as not necessarily something that requires "being upright on two legs." If someone is in a power chair or scooter; if someone is on crutches or using a cane; if someone is leaning on someone or something I still consider them to be "standing." Similarly, if I have a conversation with a non-speaking or Deaf friend via text or IM, I still view that as us "talking." I don't think that "talking" has to mean speaking aloud. I consider people to be "using their voice" if they email, tweet, or otherwise share their thoughts.

But it isn't about what I think or how I perceive these terms (not to mention the way I worded it was far less than ideal). It's about the way they are typically perceived by others. Society largely considers "standing" to mean something different than what I do. defines the verb stand in this way: "to be in an upright position on the feet." Its secondary definition is "to rise to one's feet."

Merriam-Webster dictionary provides the following primary definition for the verb stand: "to be in or take an upright position on the feet." It does provide a more inclusive definition as the secondary definition: "to take up or stay in a specified position or condition." But primary definitions are often considered the "main" definition of a word.

There are other dictionaries that take a more holistic view of what it means to stand that is less ableist, such as the Cambridge dictionary: "to be on your feet or to get into a vertical position or to put someone or something into a vertical position," but you get the point.

I did not clarify what I meant, and thus I othered the people in the room who are in wheelchairs, have limited mobility, or who might be technically able to stand but are not comfortable doing so. I effed up.

I didn't mean any harm. But no one does when they are being ableist, or racist, or homophobic, or whatever. It isn't about my intentions, though; it's about the results of my actions.  I know I am not perfect, but it grieves me to think that by being careless and not communicating clearly I unnecessarily added to the micro-aggressions that people already deal with all day every day.

In a room full of people, many of whom are living with HIV, I had no right to request anyone to "stand" knowing the issues with neuropathy, joint pain, inflammation, bone thinning and loss, and aging that are prevalent within some, perhaps several, of those present. And as an Autistic woman who comes off as an extrovert but is actually an extreme introvert, I should have known better than to request that people stand, knowing how uncomfortable it might be for some people to have to stand up while everyone is looking at you - even if you are standing up with numerous other people. The presence of other people standing too doesn't lessen the anxiety factor. There could have been, and likely were, people with social anxiety or other things that might have made being asked to stand uncomfortable.

I could have easily inserted a statement that made it clear what "standing" meant. I could have offered people an opportunity to raise their hand instead, or to identify themselves in some other way that more people would be likely to participate in without being left out. Or something.

But nope. I didn't do any of that. And even worse, it wasn't until this morning that I realized how completely messed up my choices were.

I lived three decades of my life not knowing I was Autistic. I am still navigating my identity as a disabled woman. I embrace it - just as I embrace being African, being a woman, being black, being Christian, being a parent. I'm not struggling with accepting who I am. But I cannot deny that the ableist construct that permeates society has impacted me, and in some ways I still have problematic aspects of my language and actions that are still in the process of being purged. I need to be more mindful. It isn't okay to make people feel like crap because I was imprecise. I don't get a "pass" on my screw up because people might think that I'm a nice person.

To anyone who was in the room whom I offended, whether you are abled or disabled, I am truly sorry. To anyone who was not in the room whom I offended, I apologize. And maybe you weren't offended, but were disappointed. Or saddened. Or shocked. Or annoyed or angered. Whatever emotion I caused you to feel, I take ownership and I take responsibility. I effed up, and I was wrong. My intentions don't erase the reality. Please know that I recognize why this wasn't appropriate, I regret it, and I will try hard to do better, God as my witness.

And if you're reading this and you're like me - someone who should know better - or if you haven't done something like this, but don't know how you would handle it if you unintentionally misspoke in a similar manner, I hope that you learn from me. Be thoughtful of what you say and do before you say and do it. Constantly evaluate yourself after the fact also to make sure you are not alienating others. Know that you are never "too good" to apologize and to improve. 

Thank you to all of you whom I learn from every day. Bit by bit, I hope I am shaping up to be who God made me to be.

Image is a meme whose text reads, "Own your mistakes. That's the only way to own your success." -Hrithik Roshan (Source: rainboz dot com)

Friday, June 3, 2016

More Than Our Vices: About Prince's Overdose

So let's talk. 

Even before the official cause of death was revealed, the media had been swirling with allegations of Prince's alleged addiction and all the related drama. 

Y'all know how opinionated I am. So here's my two cents on the topic. And for the sake of clarity, as a lifelong Prince fan and a Minneapolis-born (though Texas raised) Black woman, before anyone feels the need to point it out to me, I am aware that I am biased. However...

I need to say that it bothers me just as much that people are saying some of the cruel things they are saying about Prince's alleged addiction as it did when people were making snide comments about Prince's suspected HIV status. Okay. I get it. It has been confirmed that the cause of death was an overdose. Point noted. That, however, is not enough to shut me up. 

First of all, addiction is a disease. It is not a character flaw. It is not a personal failure. It is an illness - one that is not well understood and often inadequately treated. Slandering individuals who are in active substance use helps no one, and certainly doesn't lead to higher rates of sobriety. Slandering those who are no longer living who struggled with substance use is equally disconcerting. I'm not saying don't discuss it at all. It shouldn't be a forbidden, untouchable topic (such mentalities only fuel addiction). I'm saying there is a way to discuss the issue and the people affected by it without being dehumanizing, holier-than-thou, and disrespectful.

Aside from that, though, I am bothered that there is a lot of generalization going on too. I don't know the intricate details of Prince's opioid use. But I do know that some of the greatest casualties of America's "war on drugs" have been people of color, people with unaddressed mental health issues, and people with chronic pain. 

I want to be clear that I don't believe in "ranking" substance use. I don't think the person who snorts cocaine is "better" than the person who smokes meth, smokes crack, or shoots heroin. Or better than the person with an alcohol problem. Addiction is addiction is addiction; there shouldn't be some type of hierarchy. One only need look at the differences in sentencing penalties for different drugs frequently used by certain ethnic groups to have an understanding of the underlying racial and other issues that are intertwined with having unfair levels associated with different drug offenses.

But despite that, I feel that I need to speak up. And huge disclaimer: I am no LCDC nor do I have professional nor personal expertise with regard to substance use. I can only share my opinion - and I welcome feedback from those who know more than I. But in the interim, here's my opinion:

It is irresponsible and misguided to merely "write" Prince off as just another celebrity "addict" without exploring the issues that exist in this country with regard to chronic illness and pain management.

My daughter lives with chronic pain and fatigue. She can predict if it's a cold or a rainy day by the swelling of her joints, much like many senior citizens. She falls asleep in the middle of the day. She has had to drop out of nearly every physical activity she once enjoyed: dance, creative movement, karate, as she could no longer keep us with the physical demands. She was almost retained by her school a few years ago because of excessive absences. I sometimes hear her trying to mask her crying at night as she tries to endure the pain she faces daily. She puts on a brave front around most people the majority of the day because no one wants to hear anyone mentioning day after day how much pain they are in, even if it is true. But it's hard to wear that mask 24/7. It takes a toll. When all you want to do is just. Stop. Hurting.

For the person with chronic pain, many of the typical pain remedies that work for the rest of us are utterly useless. Sadly, some, perhaps many, people, including providers, find this hard to believe.  People with chronic pain find themselves being suspected of "drug seeking behavior" when they report that a certain medication isn't effective for them, or that they need higher and/or more frequent doses of certain medication in order to obtain just a little relief. I'm not belittling the fact that prescription abuse is a very real phenomenon and that there are people out there who exaggerate or even completely falsify symptoms in an attempt to obtain medication they might not actually need. Yes, this happens. But there are also people who are in actual pain whose needs aren't met because the worst is so often assumed of everyone.

And there can sometimes be a fine line between wanting relief and finding oneself growing increasingly dependent. No one strives to become addicted. It can often happen very subtly and gradually, and a person may already be deeply in the throes of addiction before they are truly cognizant that there is a problem. 

I have a naturally compulsive personality. When I'm into something, I'm all in. I believe strongly that had circumstances in my life been different, I could have easily developed an addiction as a result of this - the way that I am. I am the last person who should ever pass judgment on someone for their addiction. However, there is no one picture of addiction. People use for different reasons and everyone has a different story. It isn't respectful to make assumptions about "those people." Whether "those people" are celebrities or every day people, they are still people. You don't know what truly motivated them to do whatever it is that they do. To assume that they are "just like all the rest" is unfair. Who are "the rest" anyway, and who are any of us to categorize whole groups rather than seeing them as individuals?

What we should be doing is having frank, open conversations about all of these things. About substance use. About addiction. About pain. About a system that punishes instead of rehabilitates. About many things. And we should be listening to people who know something about this topic and can share much-needed wisdom with the rest of us. People in recovery. People who live with chronic pain. People who have a broad view of this topic and can contribute more to this topic than gossip. That's what I would like to see happen. I don't know if it's what I will see, but I hope it comes. 

Addicts are people. They are someone's child; someone's sibling; someone's friend; someone's significant other; someone's parent; someone's boss; someone's neighbor. They are more than just a list of shortcomings; more than the mistakes they've made; more than the substances they ingest. In people's rush to condemn Prince for his actions, I hope that they remember he was human. Human - and therefore imperfect, like all the rest of us. And one of this country's most talented musicians with a career that spanned decades. I hope he will be afforded the same courtesy afforded to many deceased artists and will not be solely remembered for how he died, but will instead be celebrated for how he lived.