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. 

Image of a dandelion with its fluff blowing into the wind. Photo credit: Xero Poison, Photobucket.

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. 

Image is a picture of a Southwest Airlines plane flying above snowy mountains. Photo credit: capalhec

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 tall, 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.