Thanks To My Mom

My classes recently finished reading I Will Always Write Back, a memoir about a girl growing up in the US and a boy growing up in Zimbabwe. They become pen pals in middle school, and change each other’s lives. This is the second year I’ve taught this novel, and if you consider how many classes I teach, plus reading on my own, I’ve easily read it over a dozen times. I know this book freakishly well.

Martin, the boy from Zimbabwe, is a smart kid, a hard worker, and an incredible student. As he’s finishing high school, he dreams of going to college in the United States, but has none of the money or resources to make that happen. His pen pal Caitlin’s mom takes on the project of helping him reach his college goals. She makes phone calls, sends emails, and writes letters to everyone she can think of, trying to connect Martin to people that can help him access an education in the United States. It’s a tougher project than she realizes she’s taking on. There are so many hurdles to overcome, and so few people willing to help. She handles the heavy lifting of figuring out all the logistics, though, so Martin and Caitlin are free to focus on being students and teenagers. Although at times she isn’t sure she’ll be successful, eventually, of course, she manages to work the magic for Martin’s college dreams to happen.

Reading the passages about Caitlin’s mom, Martin’s “American mom,” always makes me think of my own mom. I was a hardworking student with good grades who planned to go away to college too. And I didn’t have the slightest idea how any of it was going to work. My parents had provided my physical care all my life–everything from getting dressed and out of bed in the morning, to the cooking, laundry, and driving throughout the day. How would that work if I lived away from home? Who would help me? And how would I pay for that help? It would be hard enough to arrange all of that locally, but I had to complicate things by having my heart set on going to college out-of-state.

As a student with a disability, I had an annual IEP meeting, and the IEP team was supposed to help with my “transition plan,” figuring out life after high school. I came to the meeting with an acceptance letter to BYU in Utah. I’d been awarded a couple scholarships. I’d made my deposit for on-campus housing. I had some credits already from AP tests. I was doing all the things that university-bound students do. My mom and I walked into the IEP meeting, asking for help navigating the bureaucracy of care services in another state. We were both overwhelmed, and these were the people tasked with helping us.

They did not help us. Uninterested in the college plans I was already making, they kept telling me to come to the career center and let them help me look at brochures for the local community colleges… I didn’t want to go to community college. If I did, I would have just googled “Everett Community College,” no assistance necessary. They kept pushing it, though, so I finally promised to make an appointment with the school’s career counselor.

“I’m not really going back to look at community college brochures,” I told my mom as we finally drove away from the school. “I just didn’t think they’d let me leave until I agreed.”

“I know,” my mom said. We spent the rest of the drive home laughing about the one lady’s spidery eyelashes. I don’t know who she was, or why she was on my IEP team–I never saw her before or after that meeting–but her eyelashes were terrible. At least it was a distraction from the fears and uncertainty thick in the air. We didn’t know how my college goals were going to work out, but we knew nobody was going to help us.

For months, I practiced spelling the word “bureaucracy” in my notes for AP Gov. But I learned what it meant from my mom’s daily reports. Every day, while I was at school, she made a million phone calls. From one organization and government agency to another. Everybody she spoke to would redirect her to someone else who wouldn’t return a voicemail… People in Washington wouldn’t help, because we needed information about Utah. People in Utah wouldn’t help, because I didn’t live there yet. My mom filled notebooks with jotted names and numbers, but they all seemed to lead to dead ends.

I’ll never forget the day I came home from school, and my mom was all upset about someone speaking cruelly to her on the phone. Useless Government Worker Number Eleventy Billion, unable to answer any of my mom’s questions, had demanded to know, “Why are you even sending your daughter away? Why don’t you let her stay with you?”

Gah!! I still see red when I think about all the layers of assumptions and insults this woman was making. Assuming that my mom was trying to get rid of me. Assuming that as a 17-year old high school senior, going to college out-of-state wasn’t my own dream. She had no idea how much easier our lives would have been if I’d just chosen to stay at home. We could have continued with the same routines we’d been comfortable with my entire life. Neither my mom nor I are natural movers and shakers. We like routines. We like predictability. We like familiarity. When we decide that something is important enough to take the plunge outside our comfort zone, we’ll move heaven and hell to make it happen, but the fear and anxiety eats us alive the entire time. How dare Useless Government Worker shame my mom for taking the scariest plunge up until that point in my life with me.

I didn’t know what to do about any of this. So while my mom battled bureaucracy, I went to high school. I wrote papers and took tests. I sang in choir. I volunteered in the community. I went to movies with friends. I made bad makeup choices. I instant messaged. I did the things high school kids do. The ability to just do high school things, was such a gift.

Somehow, in the background, Mom successfully managed to put the pieces together that I’d need to start my new life in Utah.

Once I was dropped off in my dorm room that fall, I’d have to steer my own ship. And it was hard, so hard–that next year tested and stretched my limits more than I can express. But none of it would have happened without my mom getting me started, making sure the structures were in place that would allow me to build my own life away from my family.

Moms give us so many gifts. They also make a lot of mistakes. But the best gift my mom gave me, no contest, was that she always supported me in being in charge of my own life.

She didn’t sell me false ideas that “you can do anything you want to do.” Some things just weren’t feasible, so I always knew that disappointment and closed doors were part of life. But if I really wanted to do something, my mom would explore every possible avenue to try and make it work for me. And if I really didn’t want to do something, within reason, she didn’t force me.

Doctors would talk to her about medical decisions and treatment options, because parents get to make those choices when you’re a child, but my mom would always redirect them to me. “It’s her body, her life. She gets to decide,” she would tell them.

I remember being so annoyed one year when I was complaining about having to go in for my annual flu shot. My mom just shrugged, “I’ll cancel the appointment if you don’t want it. You’re old enough to decide.” And she was right–I was old enough to know the flu shot was the responsible thing, and of course I was going to get one. But once it was my own choice, I couldn’t complain about it anymore! Well played, Mom…

When we were little, my brothers and I loved playing in the sprinklers on hot summer days. As often as not, those days would end with one of our chairs breaking down. (Electronics aren’t really meant to mix with water…) You’d think we’d have been forbidden from playing in sprinklers. But we weren’t! Mom would just remind us, “If your chairs get wet, they can break.” “We know,” we’d say while running off to get drenched. I wasn’t making smart choices, and of course my mom knew it. But she let me be a kid and do the things kids do.

It’s only occurred to me recently how much my mom had to be making up as she went along. Sure, her friends, family, and community were full of moms, figuring things out together and learning from each other. But none of her mom-friends had to make decisions about rules for wheelchairs in sprinklers, or fight anything like the battle we had for me to go away to college. None of her friends had been the child in the wheelchair either. So on some things, my mom didn’t have models to follow, or mentors to get advice from. She just had to go off her own intuition.

People like to tell me how great it is that I live independently and can be a participating member of society. But I wouldn’t have any part of this life that I have today, if my mom hadn’t set me up to be strong, bold, and determined. She didn’t teach me to chase after pots of gold at the end of rainbows. Instead, she taught me, by example, to bend over backwards and work hard to find a way. She repeats all the time, “Once you’ve done all you can do, God will make up the rest.” And she believes it fiercely. My mom taught me that miracles happen, but not if you sit down and wait for them. You have to take control and keep moving forward.

It’s gotten me this far.

Happy Mother’s Day, Mom!

“That Teacher”

Recently I was at an education conference, and the speaker asked us to “think about that teacher, the one that really made a difference for you.” Not exactly an original strategy–I can’t count how many trainings I’ve been in where the presenter asked us to reflect on “that teacher.” But this particular speaker kept referring back to “that teacher” throughout her speech, inviting us to keep them present with us.

For me, this was a gift. I was going to be leading a workshop in a couple hours, and although I was excited about the opportunity and passionate about my topic, I had woken up that morning all nerves and self-doubt. I had kind and supportive colleagues and friends with me, and that helped, but it really added an extra layer of reassurance to mentally invite my 7th grade teacher to the table. As plain as day, I could see her face and hear her voice–excited for me, encouraging me, telling me for the millionth time the things that I’m good at. Always my most enthusiastic cheerleader, Ms. Fell’s voice echoed in my head, giving me a confidence boost to get me through the day.

I’ve had lots of great teachers, and occasionally in these reflection exercises, I focus on one of the others. But more often than not, my thoughts go straight to Ms. Fell. I’ve thought a lot about what made her such an incredible teacher. I compare myself to her, and wonder if I’m coming anywhere near living up to the teaching bar she set.

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I don’t have many pictures from middle school… But here’s a picture of the school. Good ol’ Harbour Pointe! 🙂

Ms. Fell taught what we called “block,” and what my current district would call “humanities.” We were in her class for the equivalent of three class periods–social studies, language arts, and literature. Her classroom was home. I have a snapshot memory of one day when the bell rang and we were all supposed to leave for lunch, but not a single one of us moved. We just kept working on whatever we were doing, as if we hadn’t heard the bell. I don’t remember what we were doing that day, but it wasn’t anything extra special. We just felt so safe, comfortable, and happy in Ms. Fell’s class; we had zero desire to leave our bubble for the chaos of middle school hallways and the cafeteria. She had to tell us multiple times to LEAVE, before we reluctantly accepted that class was over for the day.

Her classroom was full of joy. We laughed all the time. There was always music–work time was accompanied by Frank Sinatra or the Grease soundtrack. At any given moment, Ms. Oehling might burst in from next door, and if she had “I Will Survive” playing, we immediately dropped everything for an impromptu dance party. (That opening piano slide still throws me back to 7th grade and makes me grin like a weirdo.) There were prank wars and all kinds of shenanigans with Ms. Oehling’s class. Decorating our classroom door was an event. Spirit Week was an event. Sure, anyone can wear pajamas on pj day. But only Ms. Fell set up a tent in her classroom for camping day! (I still don’t understand how we were supposed to dress for camping day… But the tent was awesome.) We’d use our classroom money to buy treats for movie days, and those treats always included sour patch kids.

I sat through a training years ago on how to bring fun into the classroom…. I was a new teacher at the time, but even then, I thought it was the dumbest thing. Whose life is so sad that they need a training on how to have fun? Who needs a gimmicky acronym to help them pre-plan the elements of fun? That’s not fun! I know what a fun classroom feels like; I was in Ms. Fell’s class. It wasn’t forced or gimmicky. (Ok, maybe the tent was a little gimmicky… but we loved it!) We were just living our best lives in that classroom. We were ourselves, the teacher was herself, and fun just happened. All the time.

I read an article recently that unsettled me a bit. The author said that you can be a student’s “favorite teacher,” or their “best teacher,” but you can’t be both. The favorite teacher is fun, warm and fuzzy, and her classroom feels safe and welcoming. The best teacher holds high academic standards and doesn’t bend, so you have to learn a lot in their class. But these cannot be the same person. The author asserted that it’s better to be the “best” than the “favorite.”

It rubbed me the wrong way, and my insecurities kicked in. I know that I’m a favorite teacher for a lot of my students. There’s plenty of love and laughs in my room. But does that mean I’m not strict enough, academically rigorous enough? I feel like I have very high standards for my students. But I get the impression sometimes that others (who, notably, have never watched me teach) don’t think so. There’s definitely a sense that a teacher is either nice, or demanding, and those are mutually exclusive categories.

Except, I know that’s not true. I know that a teacher can be nice and fun, and an immense amount of learning can happen! Because that was Ms. Fell’s class. I remember more of what I learned in her class than any other from middle school.

I’ll prove it.

We hardly ever took tests. We did projects… We spent lots of time learning about the Renaissance, which I can spell, and tell you about how it means “rebirth,” and how it was exciting to study after getting through the Middle Ages. I’d thought the Middle Ages would be fun, because castles, but then I learned that feudalism and illiteracy didn’t sound so great. Much more fun to watch science, art, religion, philosophy, and everything getting a jump-start in the Renaissance. We eventually wrapped up our unit by putting on a Renaissance Faire. We all came in the evening, and each hosted a booth as the Renaissance figure we’d studied in depth. (This was where I really learned how research, note taking, and 5-paragraph essays worked.) My booth was about Shakespeare, and as I told people about “my” life in Stratford-upon-Avon and “my” works in the Globe Theatre, visitors could try writing with feather “quills” dipped in ink. Later, I changed costumes, and played Juliet from the top of the stairs in the Romeo & Juliet balcony scene. I swore that if he would deny his father and refuse his name, I would no longer be a Capulet. But I wouldn’t let him swear by the moon, the inconstant moon.

Earlier in the year, we studied Ancient Greece, which was topped off by wrapping ourselves in bedsheet togas and participating in our own Greek Olympics in the cafeteria. By that point, I knew lots of myths, and I knew that I’d rather live in Athens than Sparta, although my table group’s name wasn’t either. I think we were Corinth.

I would say that Ancient Greece was when I first started to appreciate democracy, but it wasn’t. That came earlier in the year, when we had assignments around tracking the presidential election. I created whatever we were calling “sketch notes” in 1996, and watched conventions, speeches, and debates. I remember watching my first presidential debate, and not understanding many of the issues yet, but thinking that Bill Clinton was the only guy on the stage who knew what he was talking about. Bob Dole kept dodging questions, making bad jokes, and to my mind, came across like a kid faking his way through a presentation without doing their homework… I was shocked at school the next day, when I heard from classmates who found Dole’s performance compelling. (Oh, young Kristine, welcome to the first day of the rest of your life…) I also wondered why Ross Perot wouldn’t go away, and how splitting a major party’s vote seemed like a good idea on his part. (Look away, young Kristine! You don’t want to see 2016! Just don’t look.) I don’t remember politics getting much discussion time at home back then. And we were given plenty of structure that demanded we pay equal attention to both sides. It felt good to be hearing directly from the candidates and starting to form my own opinions. Felt even better when Forgot-To-Do-His-Homework Dole lost the election!

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There’s the school again. From the sky this time!

Every week we were required to find a current political cartoon, and write a short reflection. Throughout the year, I hit on all the major issues of 1996/97–from Tickle Me Elmo, and Dolly the sheep, to income inequality, and whatever Newt Gingrich was up to that week. (Now that I’m thinking about it… Political cartoons are a great teaching tool. I should be using those.)

We did lots of writing, and learned to assess ourselves with the 6 Traits. We learned to trim “to be” verbs out of our writing. We learned to use adverbs correctly.

We memorized all the countries and capitals in Europe.

We went as a class to see Beauty and the Beast at the 5th Avenue Theater. I’d been to the children’s theater before, but this was my first time seeing a Broadway musical. I was thoroughly dazzled. I had no idea such magic was possible. I hoped that I’d spend the rest of my life seeing shows like that. (So far, so good.)

I learned so much in Ms. Fell’s class. It’s hard to even believe it all fit in one school year. But I’m drawing the very strong conclusion that one can be nice and an effective teacher.

And she was so nice. Ms. Fell cared about us as people. She talked with us like humans that were worth conversing with, not just kids to be bossed around. When I got sick and spent a couple weeks in the hospital, she came to visit me. Back in the classroom, she had me convinced that I was a good writer, and that I was good at speaking in front of people. I don’t know if I really was any good, but she convinced me that I was, and gave me opportunities to practice, grow, and shine.

When I think about the kind of education our students deserve, I think about Ms. Fell’s class. Every kid deserves that experience. Every kid should feel safe at school, in an environment where they can just breathe and laugh and be loved. Every kid should get to be so swept up in the joy of learning, that thoughts of grades fall off their radar. Every kid should get to deepen their understanding of the world around them, and the world that came before them. Every kid should be told that they’re good at things until they believe it deep in their bones. Enough to still carry it with them twenty-something years later.

Thank you, Ms. Fell, for being “that teacher.” I’ll keep trying to be the same!

Picture Day Traumas

I tell people that my first year teaching middle school was rough, among many reasons, because that’s the year all my own repressed middle school memories came up. We all have those, right? No matter how golden your childhood may have been, they’re just rough years. After my first year on the teacher end of middle school, though, those memories were mostly tucked back away in the dusty back corners of my brain where they belong.

Until one pops up and decides it’s not too late to haunt me!

Not the picture that caused the trauma. But a school photo from somewhere around the same time!

This weekend’s traumatic memory was triggered by an episode of Black-ish. Their latest episode was about colorism, and the storyline started with the twins’ class photo. Because of the lighting in the photo, Diane, who has the darkest skin in her family and in her class, looked more like a shadow in the corner than a person. Her parents were furious, and immediately called the principal to say they were coming to talk about this and demand a new photo.

So here’s my own story. I’m not even sure if I’ve ever told it to anyone.

I was in middle school, and it was the week when they took yearbook photos of all the clubs and groups. I was an involved student in several activities, so I don’t remember now which one it was, but I was answering the “come and gather” call for some group I belonged to. We were led outside, and directed to the bottom of a steep grassy hill, where the camera was set up.

Except… I couldn’t get down this hill. I’d have tipped my chair over if I’d tried it, and there was no accessible route. While everyone ran down the hill, I awkwardly hung back, confused at what I should do next.

When the adults (teachers? photographers? I truly don’t remember) realized I couldn’t get down the hill, they told me to just stay at the top of it. I’d be several yards above the rest of the group, and they’d get me in the photo that way.

I was mortified. It was going to be the most ridiculous looking photo. A few rows of kids in a traditional group photo, then a tall hill of grass behind them, and me all by myself at the top of it. I was dying of embarrassment there in the moment, and imagining what it would look like printed in the yearbook. I wanted to just leave. I didn’t really care if I got left out of the photo altogether. But being made to stand out like such a sore thumb? No! No, no, no… Like most other middle school kids, my main goal in life was to blend in and not be noticed. I was used to failing at this goal–wheelchairs don’t blend in anywhere. But this photo was too much. I didn’t want to do it. And I didn’t know how to get out of it. If I tried to sneak away, somebody was going to notice and call me back, bringing even more attention to my predicament. The photo happened.

That day, I got home from school and burst into tears. I told my parents all about what happened and how upset I was. Just like in Black-ish, my parents were furious, and they called the school to give the principal a piece of their mind. I usually didn’t like it when my parents acted like “those parents;” I’d rather just let things go. But I couldn’t bear the thought of that photo being published in the yearbook! I didn’t know what else to do about it, so I appreciated having the protective parents card to play.

I don’t know what the conversation was like on their end. I don’t know if they got any push-back. All I know is, a new group photo was scheduled.

When the group was gathered again a few days later, this time in an accessible location, I remember hearing a couple kids complaining about having to do the photo twice. I’m not sure if any of them knew the reason why. I certainly wasn’t explaining it to them. I just did my best to act mildly annoyed along with them, and not blink in the photo. Blend in. Blend, blend…

As an adult, I’m almost more horrified in hindsight. At the time, I felt like I was the problem. If I’d just been able to blend in better, everything would have been smooth; everyone’s life would have been easier… But now, I can’t imagine putting  any of my kids into a situation like that! Separating them from their peers, putting them on display, letting them feel like a problem just for existing and participating. Unacceptable. There were a million and one places they could have taken that photo. It didn’t have to be in the one part of the school grounds I couldn’t access. There was no reason for that.

I still deeply resent being put in those situations. Other people throw some kind of ableism at me, whether it’s inaccessibility or just offensive comments, and then it becomes my job to “fix” it for them. It’s so unfair. But I either fix the problem, or I am the problem.

I avoid it as much as possible. When an event is planned at somebody’s house, unless they make a point of telling me about accessibility, then I just assume it’s inaccessible and don’t say a word about it. Because most likely, that’s the case. If I counted on my fingers the number of friends’ houses I’ve been inside over the course of my life, I’d have several fingers leftover.

I might be assuming wrongly; maybe an event is being held at one of those rare houses that don’t have steps. But if I ask about accessibility, and the answer is no, then everything becomes awkward. People can never actually bring themselves to tell me that I can’t come in their home, so they hem and haw and promise that we’ll make it work. Then they expect me to figure out how to make it work. Or they expect me to allow myself to be carried up the stairs. Me and my 500 lb. wheelchair? Me without my chair? In either case, no. Maybe they expect me to go up a “ramp” that’s just a piece of plywood thrown over five steps–so steep, it’s practically straight up and down.

Maybe they really do bend over backwards and build a legit ramp that will work well, or maybe they change the entire event to a more accessible location. Great! Those gestures are super appreciated, but now I feel so uncomfortable about how much work was done just for me. Everybody else would have been happier with Plan A, but they’re settling for Plan B, just for me. Plus, I’m obligated to attend at that point. What if a last-minute conflict comes up? What if I’m just physically drained and emotionally introverted when the day arrives, and I don’t want to go? I can’t gracefully back out. People sacrificed for my ability to attend, so I need to be there, and I need to be all smiles. Too much pressure…

There’s nothing worse than the times I’m promised that it’ll work, so I show up, and immediately see that this will not work. I become that awkward adolescent girl on school photo day all over again. I want to turn around, go home, and forget the entire thing. But nobody wants to see me leave, because then they’ll feel bad. They insist that I stay and put my own safety at risk with some really janky stand-in for accessibility. And so many times, that’s exactly what I’ve done, because I don’t want other people to feel bad. I don’t want to be the problem.

I’m slowly, very slowly, getting better at catching myself in this toxic thinking where I’m blaming myself, thinking that I’m just too much, that I can’t expect other people to deal with all my complications. And I self-correct by thinking about my own classroom. My students have a very diverse range of needs, strengths, and characteristics. They stretch me in many ways. But every kid is a valued part of our classroom community. Nobody is too much. Nobody is too different. Nobody is too needy. I’m not perfect at meeting everyone’s needs, of course, but overall I feel good about how I include every student as an active participant with a sense of dignity. My kids face a lot of inequities and injustices, and I want them to know that I’m at their side through everything that comes up, but I don’t want them to feel like they’re the problem. And I feel like I’m pretty successful at that.

So I know it can be done. We can pay attention to the people around us, and meet people’s needs, without treating any person’s needs as a higher priority or a larger burden. We can do better.

Michelle Obama and Me

About two seconds after getting tickets to see Michelle Obama speak, I also clicked the “purchase” button on Becoming, her memoir. It had been on my list, but now needed to be devoured immediately. I just finished the book, which was, of course, as wonderful as she is. I’m more excited than ever to hear her speak, but I also kind of just want to eat ice cream and chat with Michelle. (Sending that crazy wish out into the universe. Why not?)

The most surprising discovery while reading–it turns out Michelle Obama and I have basically the same life. I live just like a First Lady. As soon as the Obamas moved into the White House, I found myself highlighting passages, saying, “Been there, Michelle, been there!”It first struck me when she wrote about 4 months into their first term at the White House, when Barack (We’re on a first name basis now.) kept his promise to take her to dinner and a show in New York. She describes finally getting a lovely date night with her husband, but also:

The harder part was seeing the selfishness inherent in making that choice, knowing that it had required hours of advanced meetings between security teams and local police. It had involved extra work for our staffers, for the theater, for the waiters at the restaurant, for the people whose cars had been diverted off Sixth Avenue, for the police on the street. It was part of the new heaviness we lived with. There were just too many people involved, too many affected, for anything to feel light.

I feel ya, Michelle! I think everybody who navigates the world in a wheelchair feels that. Everything is so complicated. There are so many details, logistics, and people involved in even the mundane daily activities of my life, never mind planning an outing. I’m always extra work for other people, no matter how much I might want to just quietly do my own thing. Extra work for myself. Nothing can ever feel light. I fake cheery lightheartedness, but that’s trying to compensate for all the extra weight of my presence. Nothing can ever feel light.

Later, Michelle talks clothes.

I was supposed to stand out without overshadowing others, to blend in but not fade away. As a black woman, too, I knew I’d be criticized if I was perceived as being showy and high end, and I’d be criticized also if I was too casual. So I mixed it up. I’d match a high-end Michael Kors skirt with a T-shirt from Gap…. I wanted to draw attention to and celebrate American designers, most especially those who were less established…. For me, my choices were simply a way to use my curious relationship with the public gaze to boost a diverse set of up-and-comers. Optics governed more or less everything in the political world, and I factored this into every outfit…. In my dressing room, I’d put on a new dress then squat, lunge, and pinwheel my arms, just to be sure I could move. Anything too restrictive, I put back on the rack.

I feel ya, Michelle! That’s about how much thought I put into my clothes too. Between function and optics…. My body doesn’t look anything like the body they design clothes for, so nothing fitted is ever going to fit. If the fabric isn’t stretchy, it’s ruled out. Tops need to be long enough that I can tuck them down and expect them to stay all day. I can’t be tugging at clothes that won’t stay in place. But not too long, because I’m like nothing feet tall. Necklines need to be really simple and conservative, because I have bony shoulders, and wide necklines slip right off my shoulders. Pants/skirts need a waist that isn’t going to dig into me from sitting all day. Loose enough to be comfortable, but not too long and baggy, because nothing feet tall. Shoes that are easy to get on, no heel, nothing open-toed, but also not geriatric or orthopedic, because optics. I need layers that will keep me warm, because sitting all day doesn’t get the blood flowing, and I’m always cold. But nothing heavy, because my muscles are really bad at being muscles, and heavy clothes make it hard to move. Whatever I put on in the morning is staying on all day, so that usually doesn’t involve a coat.

I could get away with just wearing sweats all the time, and a blanket over my lap. But when I was a kid, I saw adults in wheelchairs going out like that all the time, and it made me sad. They looked like they’d given up on life. I swore that wouldn’t be me. So I have to look like I put some thought into my appearance, and like I have my life at least kind of together. But after all the planning that goes into everything I wear, at least half the time that I leave my house, the first thing I hear is, “Don’t you have a coat??” Since the reasons behind my clothes are nobody else’s business, rather than launch into a (boring) explanation, I usually just pretend I’m not cold, while they laugh at me for being an irresponsible child that doesn’t know how to dress herself.

Clothes shouldn’t be this much work. And just like Michelle, I envy Barack’s ability to wake up an hour later, throw on the regular black suit and tie, and with no effort at all, look like a million bucks.

So Meredith was in charge of helping with the wardrobe. In addition to Meredith…

I came to depend…equally on Johnny Wright, my fast-talking, hard-laughing hurricane of a hairdresser, and Carl Ray, my soft-spoken and meticulous makeup artist. Together, the three of them (dubbed by my larger team “the trifecta”) gave me the confidence I needed to step out in public every day, all of us knowing that a slipup would lead to a flurry of ridicule and nasty comments…. Today, virtually every woman in public life–politicians, celebrities, you name it–has some version of Meredith, Johnny, and Carl. It’s all but a requirement, a built-in fee for our societal double standard.

Michelle, I feel ya! It isn’t just women in public life. I’m a nobody, but I rely on my team to keep up my appearance. When I’m looking for new assistants, people always think I want somebody with experience in healthcare. Not even close to true. I don’t need my vitals checked. I need to get out of bed and end up looking pretty! Optics.

Heather is the gemiest of the gems because she has no interest in healthcare; theater is her thing. She has tons of experience with costuming. She knows how to get clothes on another person and make them look good. I need more Heathers in my life.

Michelle, if you’re done with Meredith, Johnny, and Carl, feel free to send them my way. I’m usually stuck with people who will tell me, “Yep, looks good!” Then I look in the mirror, and see one shoulder seam halfway down my front, the other disappeared somewhere down my back, and my leggings at two drastically different lengths. And then I have to explain, again, how clothes work. I need assistants who understand their role in protecting my image.

Moving on…

I continued to feel as if we were falling backward, our whole family in a giant trust fall. I had confidence in the apparatus that had been set up to support us in the White House, but still I could feel vulnerable, knowing that everything from the safety of our daughters to the orchestration of my movements lay almost entirely in the hands of other people–many of them at least twenty years younger than I was. Growing up on Euclid Avenue, I’d been taught that self-sufficiency was everything. I’d been raised to handle my own business, but now that seemed almost impossible. Things got handled for me. Before I traveled, staffers drove the routes I’d take to venues, timing my transit down to the minute, scheduling my bathroom breaks in advance.

Oh, Michelle, I completely feel ya! I’m a fiercely independent soul inside this highly dependent body. A control freak who can’t control much of anything. My entire life is a giant trust fall, and unlike the White House, nobody actually cares if I crash and burn. Also, in the disability community, we have a phrase for the art and science of scheduled bathroom breaks–we call it “pee math.”

Talking about the connection she felt to Sojourner Truth, Harriet Tubman, Rosa Parks, and Coretta Scott King, Michelle describes the feeling that she couldn’t take time to rest.

I put this on myself as pressure, a driving need not to screw anything up. Though I was thought of as a popular First Lady, I couldn’t help but feel haunted by the ways I’d been criticized, by the people who’d made assumptions about me based on the color of my skin. To this end, I rehearsed my speeches again and again… I pushed hard… to make sure every one of our events ran smoothly and on time. I pushed even harder on my policy advisers to continue growing the reach of Let’s Move! and Joining Forces. I was focused on not wasting any of the opportunities I now had, but sometimes I had to remind myself just to breathe.

Yep, Michelle, I feel ya. It doesn’t even matter that I know I’m generally liked and respected by students, colleagues, administrators, and parents. I’m forever going to be trying to prove wrong the people who’ve doubted me. The “mentors” who basically took one look at me as a student teacher, and told me “You don’t have what it takes to be a teacher. You should find something else to do with your life.” The English professor who warned me that her class would be too hard for me. The random people who ask if my students respect me less (or more) than their other teachers. (For the record, they respect me the exact amount that I’ve earned, no more and no less.) All the others that are too polite to voice their doubts about me out loud. The black community isn’t the only one that knows the “work twice as hard to get half as far” rule. I put an enormous amount of pressure on myself to perform and excel, because I don’t want to reinforce any ableist beliefs when I fall short.

I’m highly aware of the opportunities I have right now, thanks to health, privilege, and good luck. I’m just as aware of how quickly I could lose every one of those opportunities. The clock ticking away in my head is deafening. So much pressure. And I do it to myself.

Finally, I was in tears when Michelle talked about the violence that our kids face just by going to school or living in their own neighborhoods. I sobbed, reliving Sandy Hook, and Michael Brown, and Hadiya Pendleton, and the Charleston church massacre, and so many others…. She went to talk with students at Harper High School in South Chicago. After listening to their stories and concerns, she was asked by one of the kids, “But what’re you actually going to do about any of this?”

“Honestly,” I began, “I know you’re dealing with a lot here, but no one’s going to save you anytime soon. Most people in Washington aren’t even trying. A lot of them don’t even know you exist.” I explained to those students that progress is slow, that they couldn’t afford to simply sit and wait for change to come. Many Americans didn’t want their taxes raised, and Congress couldn’t even pass a budget let alone rise above petty partisan bickering, so there weren’t going to be billion-dollar investments in education or magical turnarounds four their community. Even after the horror of Newtown, Congress appeared determined to block any measures that could help keep guns out of the wrong hands, with legislators more interested in collecting campaign donations from the National Rifle Association than they were in protecting kids. Politics was a mess, I said. On this front, I had nothing terribly uplifting or encouraging to say… Use school, I said.

Oh, Michelle, I feel you. I feel you, I feel you… Having to explain these ugly realities to kids is the worst. When scared kids ask me to make the world make sense for them, my instinct is to assure them that they’re safe, everything’s ok, the adults are taking care of things… But I can’t make their world safe. Like Michelle, I choose to be honest with kids always. If I can’t give them safety, I can at least give them honesty and information. I tell them what I’m doing, and what others are doing, to protect them the best we can, and give them as many opportunities in life as possible. I tell them what they can do to help themselves. And I tell them what we’re up against. Knowledge is power. I don’t sugarcoat things, because that’s just a form of lying, and “friends don’t lie.” But it hurts my heart so much. I want to be able to tell my kids about a world that values them, invests in them, protects them, and treats them as a top priority. They deserve that.

I believe this thorough analysis proves one thing… I’m probably still not cut out to be the President of, well, anything. I never thought I was. But turns out, I’m remarkably qualified to be a First Lady! I’ve been practicing my whole life. I could do it. So if you know any single presidential hopefuls, send them my way….

Smiles From 2018

I feel like I’ve been approaching New Years with a “good riddance” attitude toward the old year for several years now. Life has just been dark and heavy. It hasn’t killed me yet, so I guess I’m getting stronger… Actually, I know I am. The world at large has been disappointing me for a while–apparently the Germans call that weltschmerz–but for the most part, I’m not disappointed in myself. I’m proud of how I’ve learned to use my voice and stand firmly for my values, for justice and compassion.

But I don’t feel like ending 2018 on a heavy note. I just want to celebrate the smiles. There have actually been a lot of cool things that happened this year! Lots of things to smile about. Let’s list them. In no particular order….

  • I got to see Hamilton. Now I want to see it a hundred more times. But I’d settle for thirty-seven more times.
  • Finally saw Pink Martini perform at the zoo. That’s been on my bucket list for years. The current generation of von Trapp singers joined them on stage, and led us all in a sing-along of “Edelweiss.”
  • Gave a TEDx talk. No big deal.
  • Saw Ingrid Michaelson’s holiday concert from the second row. There was another “Edelweiss” sing-along. How did that happen twice in one year?? (There were no von Trapps the second time.)
  • I got a new baby nephew. He’s working out nicely so far. Think he’s a keeper.
  • Started the Book of Mormon in January. Literally finished it the same day in October that President Nelson challenged us to read the BOM again before the end of the year. And I did it! I read the BOM twice this year. After never finishing one of those challenges before.
  • I had a really great shoe year. Like, off-the-charts, good shoe year.
  • A certain young someone starting college this year made my heart sing.
  • I wrote a blog entry that doubled my previous record for most views… I’m a little irritated that it’s really not my best writing. I’ve done better. But a lot of people read my straw blog. It is what it is.
  • Three visits with my niece and nephews. They’re the best.
  • Saw Phantom of the Opera. Again. I never get tired of watching men sing-fight over Ch(K)ristine.
  • Church dropped from three to two hours. Dreams do come true.
  • Went to a P!nk concert, where our tickets were magically upgraded for no good reason, and she was basically doing crazy trapeze work right in our faces. While making amazing music. She’s incredible.
  • People (barely) started requesting my writing for their publications. Eventually, maybe somebody will want my writing that actually pays for it. But for now, any interest at all in my writing is flattering, and opportunities to get my ideas (and name) out there are fantastic.
  • Got tickets to see Michelle Obama speak in February. The event hasn’t happened yet, but we have great tickets, so I’m counting it as a 2018 win.
  • I kissed an alpaca named Zeus.
  • Finally got my act together and watched West Wing. I have no excuse for why it took me so long! But it managed to be there for me when I needed it most. #Seaborn2020
  • Sat with Daria (yes, Daria from the radio) and her husband at a fun storytelling event that she was hosting.
  • I accidentally ended up with a rubber ducky collection.
  • So many tacos happened. Never enough. But so many tacos.
  • I also finally watched Parks & Rec. Seriously, what was I even doing with my life before 2018?? How did such essential viewing take me so long?
  • The 7th grade “Danny Boy” video. Oh my gosh, the 7th grade “Danny Boy” video.
  • Best conversation ever with Ann Curry. I know I already mentioned TED, but I feel like Ann Curry should get a listing of her own.
  • 7th grade secret santa was the most heartwarming thing.

If I continue down the rabbit hole of classroom moments that made me smile, I’ll never stop. My job makes me feel ALL THE EMOTIONS about a thousand times a day, which is beyond draining. But I also get to laugh a lot, which helps fill me up. So, I’m going to stop listing, and just end the year with this image. I’m telling you, it was such a good shoe year…

How To Tell A Disability Story

I joined Twitter relatively recently, and over the last couple weeks, have unintentionally been doing an experiment.

I tweeted a positive comment about disability and how it has makes me a better and stronger person. #DisabilityPride. It got 2,261 views, 73 likes, 12 retweets, and earned me a handful of new followers. Before that, I’d posted about how “pride” means going out in the world, unashamed of mobility devices, not staying locked up in your house, grumbling about how you’re “too proud” for wheelchairs or walkers. That tweet got 3,540 views, 96 likes, and 14 retweets.

I also tweeted  a less sunshiney message, about CBS Sunday erasing the disability perspective (ie, my brother’s interview) from their coverage of the straw ban story. I tagged this major tv network and the city of Seattle in the post. I explained how their erasure changed a story of “oppression of a marginalized population” into an “amusing, quirky, feel-good story.” It’s a big story and a trend that’s sweeping the country, having real effects on real lives, and they didn’t just trivialize the issue; they erased it. That tweet got a mere 207 views, 2 likes, and no response from CBS.

Then I tweeted about @MassageEnvy turning me away, cancelling my appointment, refusing to serve me because of my wheelchair. Despite a couple fantastic and outraged friends retweeting and even tagging local news stations, the post received 1,068 views, and only 2 likes. Nobody has reached out to me in response.

These four tweets certainly don’t meet the parameters of a “simple, random sample” for statistically significant evidence of anything. But I feel like they fit a larger pattern that I’m seeing around me… People are only interested in the feel-good version of disability stories.

Everybody says that “the media only focuses on the negative; they don’t report the positive stories.”  There might be truth to that, but not when we’re talking about disability. Disability stories are supposed to be warm-and-fuzzy. They’re supposed to make you feel good and regain your faith in humanity. If the disabled can’t do their job and inspire you, then they should stay out of sight.

Disability stories get passed around the internet all the time. They’re easy enough to produce. Just put some sappy music behind coverage of a girl with Cerebral Palsy getting asked to prom. Or a guy with Down’s Syndrome working at a coffee shop. Profile a disabled athlete and be sure to include the phrase “doesn’t let their disability stop them.” Bonus points if you describe their disability as something they just “happen to” have.

A lot of those viral stories completely miss their own point. Videos of strangers carrying someone’s wheelchair up the stairs so that the disabled person can attend their best friend’s wedding reception, applaud the kind-hearted strangers. But they ignore the key questions—why doesn’t the venue have an accessible entrance? What are they doing to fix it? What kind of friend chooses an inaccessible location for their wedding? This is a story that should invoke outrage every time it’s told, not warm-and-fuzzy love for human kindness.

Or how about the stories of families that start their own “inclusive prom” in response to their high school’s prom being inaccessible? That’s a story of discrimination. It’s not a feel-good story. Yet people get all gooey-eyed over it. (I’m all for affinity events where the disabled community can get together and socialize with each other. But those should be in addition to public events that are available to everyone, not the only alternative.)

Oh, or here’s a story I always find horrifying—the college graduation stories, where the parent is awarded an honorary degree for following their disabled (adult) child to every class and attending to their every need throughout their education. Those stories leave me with so many questions, but mostly: why?? Why didn’t the university and/or state provide the assistance the student needed? Did the family pursue services? Did they know about available services? Were they denied services? Would we applaud an able-bodied college student for having their parent shadow them everywhere they went? Is this student ready to be an independent adult in the real world? So many questions! But the stories don’t report on any of that. They just play sappy music and try to get you to cry over the parent’s selfless sacrifice for their burdensome child. How inspiring.

Meanwhile, the disability stories that need telling, don’t get told.

Why don’t we see stories about the couples that can’t get married, because the disabled partner will lose essential, life-sustaining services if they do? How many people reading this even knew that the government punishes the disabled for getting married?

Why don’t we see stories about the unemployment rate in the disability community? Why don’t we hear about the barriers to employment—discrimination, workplace policies, and most of all, the state again taking away essential, life-sustaining services if we have an income? Within the disabled community, there are endless discussions about how to navigate the bureaucratic mess and access services while employed, but there aren’t words to express how complicated it is. Did you even know this was “a thing?”

Why don’t we see stories about all the college graduates with disabilities who, unable to find employment, do all kinds of volunteer work instead? We always hear about the kindness of others helping us out. But the disabled population is full of good hearts giving back to the community. Why don’t we highlight their work, while asking critical questions about why the only labor we want from our disabled population is free labor?

Why don’t we see stories about how the Americans with Disabilities Act—originally signed into law by a Republican president—has been shot full of loopholes ever since, with its all-time greatest threats coming from the proposals of our current Republican Congress? Why don’t we hear shaming of businesses that still fail to comply with the ADA, almost 30 years later?

Why don’t we see stories about the widespread poverty of the disabled community, and question why that is, instead of accepting it as the natural order of things?

Why don’t we see stories about the utter failure to regulate air travel the way we have land transportation? Why don’t we hear about the trauma-inducing service that’s considered standard for disabled airplane passengers? I know the stories don’t get shared, because everybody is shocked when they hear my stories. Their false perceptions of what they think flying with a wheelchair is like would make me laugh, if it weren’t for, you know, the trauma.

I could keep going.

And what about the way we teach history? When we’re teaching about how different groups have fought for equal rights in the US, do we ever include disability in the history? When we’re teaching about school segregation, do we mention that schools weren’t required to accept disabled students until 1975? And that there still wasn’t a law to address their segregation until 1990? Do we teach about the disabled activists that fought, and continue to fight, for our rights? Without googling, can you name a disability activism group? I don’t mean a charity that’s trying to cure a disability; I mean activists with disabilities fighting for our community’s rights.

We don’t even like looking at the disabled as a group with rights. The disabled get kindness and charity from us, so we can feel warm and fuzzy when we give it to them, and don’t have to feel bad when we don’t. But they need to stay in their place and not starting acting ungrateful or entitled. We don’t want to hear their complaints. They already get the best parking spots; what more could they possibly want?

I’m so tired of the smoke and mirrors required to make my life as a disabled woman look independent, free, and effortless. I’m tired of my community being so badly misrepresented by the media. We really aren’t the sweet, innocent, sunshiney cherubs that exist to inspire and warm your able-bodied hearts. We’re much more interesting than that. Our real stories deserve to be told. Real problems will never be solved, if they aren’t even widely recognized as existing.

Our stories won’t always make you feel good. They’ll make you angry, make you sad, make you confused, and make you uncomfortable. But it’s time to be ok with that.

I Teach Starfish

According to one of my 6th graders, when her older brother noticed that she’s in middle school now, he told her, “Tell Ms. Napper hi! I love that teacher, she’s really nice.”

That’s very sweet, of course. But this is why it’s surprising… This older brother, who is a young adult by now, was never actually in my class. He wasn’t my student; I barely even knew him.

He was one of those notorious students, though, that just wasn’t into playing the school game. He was much more interested in the press-all-my-teachers’-buttons game. I don’t know his background story, but I’m sure he had one. He also had some wonderful, patient, skilled, compassionate teachers, who I know were constantly bending over backwards, trying to meet this kid where he was at, and help him get on a better path. But he wasn’t too interested. I don’t know what happened in his life post-middle school, but at least at the time, it didn’t seem like any effort made much of an impact.

I do remember making a conscious decision to be his “hello in the hallway” buddy. He was friends with several of my students, and I’d see him in the halls all the time. Since he wasn’t in my class, I had no personal issues with him, and he had no problem with me. (It’s easy to get along with the teacher that doesn’t make you do stuff!) So I made a point of regularly calling him by name, giving a warm hello, maybe making some small talk.

And that was really it. This didn’t develop into a meaningful bond. I don’t remember ever having a conversation that lasted more than 30 seconds. I don’t remember getting more than an indifferent response from him. I didn’t change his life, and I wasn’t trying to. I was just a friendly face in the background of his life, no more and no less.

So it really surprised me that years later, he remembers me at all, let alone remembers me warmly.

I don’t share this story to toot my own horn. I didn’t do anything great for this kid; I hardly did anything at all. I share it because–confession–I’ve rolled my eyes so many times when people say, “Sometimes all it takes is a smile or a hello to make someone’s day.” I’m sorry, I know I shouldn’t be so judgy, but it always sounds to me like this lazy way to excuse ourselves from doing the hard work of really loving or showing compassion. I appreciate smiles and hellos, but I can’t think of a single time when one “made my day.”

But maybe I’m wrong.

I’ve also been struggling a lot with the enormity of… of the everything. Of all the ugliness in the world, and how it weighs down on the people I love. I  constantly feel like the guy in the starfish story, telling myself that even though the beach is enormous, I can make “a difference for this one.” Except that as fast as I’m throwing the starfish back in the sea, they’re getting hit by other forces and predators, and I’m not sure that I actually can make a significant difference for any of them. I keep wearing myself out trying, because I can’t just quit, but does any of it even matter??

And maybe it does.

Smiling and saying hello won’t save a starfish’s life. It probably won’t have any measurable impact at all. But it might just matter anyway.

Apparently some smiles and hellos mattered at least a little to this kid. At least enough that he remembers me, a nobody a in his life, years later. That feels good. There were others doing the real work with this kid, and I’m sure they had a much bigger impact. But maybe we all need those small impact players in our lives too.

And if something as low-effort as being a friendly hallway buddy makes more of an impact than I could see, then maybe some good also comes from when I pour my energy and heart into something/someone.

Writing this so maybe I’ll remember on the days when I’m feeling discouraged….

We Seriously Have To Talk About Straws??

So we’re still talking about straws. Have you noticed? In between the cat videos, baby photos, and Fuhrer Trump articles filling your social media, the straw ban talk isn’t going away.

Do you know why people are so excited to jump on this “ban the straw!” bandwagon?

Because it’s easy.

The straw ban is such a classic example of white liberal activism. That doesn’t mean there aren’t non-whites or non-liberals on board this time. And obviously not all white liberals are riding this train. But it’s straight out of the white liberal playbook!

White liberals love to feel like we’re good people. Maybe that’s not fair; it’s human nature to want to feel like a good person. But white liberals seem to have an extra intense craving for it.

But… we don’t want to work too hard. We don’t want to leave our comfort zones or stretch ourselves. That’s why we love sharing memes, wearing awareness bracelets, and signing change.org petitions. Easy! I can rack up all kinds of Good Person Points before breakfast! In fact, if I sign a straw banning petition before breakfast, and then drink my orange juice straight out of the glass at breakfast, that’s two Good Person Points already.

It doesn’t bother us that these actions are super low-impact. Even if we get rid of every plastic straw from the face of the Earth, we’ll have eliminated only .03% of the world’s plastic waste. Look closely–that’s not 3%, it’s point-zero-three percent. Three one hundredths of a percent. I don’t know what exactly that number means, but it sounds like the best we can possibly hope for, if the entire planet bans plastic straws, is saving the lives of half a dozen fish and a couple pelicans.

But just think how good we’ll all feel about ourselves! Never mind that 99.97% of the plastic waste will still be polluting our oceans. We’ll feel like we made a difference! And there’s nothing white liberals are better at than low-impact, feel-good activism. (Tangent: Do you know how many discussions I’ve sat through just in the last year or two about whether my students should be called English Learners, English Language Learners, Emerging Bilinguals, Emerging Multilinguals, or something else? It’s such an enormous waste of time, and it makes everyone in the room feel like cutting edge changemakers without having to do anything.)

If we were serious about cleaning up the ocean, then we’d tackle the estimated 46% of the ocean’s debris that’s made up of abandoned fishing equipment. We would create systems and incentives for more environmentally friendly disposal of this equipment. We’d figure out how to tackle the problem in different countries with different resources. It would require an investment of time, money, thought, and effort. And in the end, the oceans would actually be cleaner…. But that sounds hard. And we wouldn’t get the fun little dopamine boost every time we enjoyed a strawless meal.

Is white liberal activism really about the earth? Or is it about the dopamine?

Of course, when I say that the straw ban is low-impact, what I mean is low positive impact. It will absolutely have a very real negative impact on the disabled community. It’s already happening.

Recently I went out to brunch, and asked for a straw with my water. The server gave me a judgmental look, because obviously I hate the earth, and said “We have some paper straws for now…. but we’re trying to phase those out too.” I was taken aback, and told her directly that’s really inconsiderate of customers with disabilities. She shrugged and walked away. She returned shortly with a paper straw, which made my water taste nasty.

A week later, out for dinner, I forgot to ask for a straw when the server was taking my order. I forgot again when he brought my meal. I only remembered when I wanted to reach for a drink of water.  But he didn’t return to our table until he was bringing the check and I felt silly asking for a straw after the meal was over, so I didn’t. To rub salt into my thirsty wound, he then told us proudly about how he’s keeping the straws hidden now as a matter of policy.

Sure, yes, it’s my fault that I didn’t ask. Sounds like it would have been provided if I had asked. (No telling whether it would have been provided with a smile, though. I might have been shamed again for hating the earth.) I also didn’t ask for a fork, knife, napkin, plate, or glass, but those were provided.

This is why the disabled community pushes back against the phrase “special needs.” Why are your needs a given, and mine are special? The entire world is designed to accommodate your needs. As an able-bodied person, you’ve never been invited to an event that didn’t accommodate your need for a place to sit. Your need to enter the building, through the main entrance no less. Your need to eat, drink, and use the bathroom to your heart’s content. These buildings and events aren’t a product of nature; they were designed special to meet your needs. Except, your needs aren’t special; mine are. And “special” means I can’t expect you to care about them. I can ask politely, and watch you earn more Good Person Points when you grant my requests, but if you come up with an excuse not to meet my needs, I’m supposed to smile and be understanding.

It’s so exhausting to have to ask for things all day. My brain seems to have a set number of asks, and once I’ve reached my quota in a day, I just don’t ask for any more. I’m not sure what that number is, but I can feel when I reach it. If I’ve already reached my quota, I’m not going to ask for your help opening the candy bar; I’m just going to hold it and let it melt. I’m not going to ask you to hand me the blanket on the high shelf; I’m just going to be cold. I’m not going to ask you to move my foot a little to the right and forward just a skosh; I’m going to live with it hurting for the rest of the day.

So asking for straws isn’t something I love to do. I do it when I need to, except for when I forget, but I don’t love it. Especially now that I’m afraid I’ll be shamed, or told no, or given some nasty paper straw. Now there’s an extra layer of taking a deep breath and gathering my courage before asking, “Can I have a straw?” It doesn’t feel like asking for a water refill, or something I could reasonably expect to receive. Now it feels like begging a favor and hoping for kindness.

And this is why white liberal activism is so exhausting. The environmentalists originally chose the plastic straw issue, because it seemed like an easy win that wouldn’t hurt anybody. When the disabled community spoke up and said, “Actually, it hurts us!” that should have been the end of the conversation. That was the cue for the environmentalists to say, “Oh, our bad, no problem, we’ll pick a different thing.”

But, no. Instead, they get mad at us for letting our negative impact get in the way of their good intentions. We aren’t awarding them Good Person Points, and they want their Good Person Points! It doesn’t matter that they’re trampling on a marginalized community to get them.

People like being advocates for the environment and animals. You know why? It’s easy. Relative to activism and allyship for groups of humans, I mean. The environment doesn’t talk back and tell you that you’re doing it wrong. Animals don’t tell you that your good intentions were misguided and they’d like you to take a step back and let them define their own needs. Humans are so much messier and more complex.

It might not seem like a big ask for the disabled to carry their own straws or whatever. And if this were going to actually save the sea lions, I would probably be willing to make the sacrifice. But it’s not going to do that. This is asking the disabled population to bear the burden of a trendy phase of low-impact activism.

So leave us alone. Don’t make us pay the price of your Good Person Points. It might seem small to you, but this could be the “straw” that breaks some camels’ backs. (See what I did there? I’m so funny…)

You have no idea how much effort goes into creating the illusion of an effortless, typical day in my life.

Just getting out of bed in the morning requires coordination of assistants, equipment, schedules, government agencies, trainings, hour sheets, materials… Everything I’m going to need for the day has to be arranged where I can get to it. I choose clothing that’s going to keep me warm, because I’m always cold, but isn’t too heavy, because that weighs me down and makes it hard to move, but doesn’t require taking layers on and off, because I can’t do that myself and whatever I put on in the morning is what I’m wearing all day, and doesn’t have a waistband that digs into the spot on my skin that’s sore from wearing something that was digging into me all day yesterday, and is aesthetically appropriate both for work and for the thing I’m going to after work…. (And THEN, someone will have the nerve to laugh at me, “Did you forget your coat??” No, you idiot, I put more thought into my outfit this morning than you put into your wedding day outfit, so how about you leave me alone?) My morning routine gets thrown off if somebody absentmindedly picked up my mascara and tightened the lid, so now I’m by myself and can’t get it open. (You’d be surprised how often people pick up random things and tighten the lid for no reason.) I don’t have time to mess around, because I have to be ready to walk out the door the minute my bus window is open. And I also have to be ok with sitting around and waiting for the bus all morning. There’s no way of knowing if this wait-and-ride-the-bus routine will take 20 minutes or two hours, so I have to be ready for either. I carry the things I’ll need in my lap, arranged so that I can balance everything. And when I get to work, I hope that all the buttons to open all the doors will work, but I usually have to find a helpful person for at least one of them.

That’s just getting my day started. Getting the plane off the ground. We haven’t even gotten to the substance of the day yet. And it’s already exhausting.

So maybe just let us have our straws? Maybe don’t add that to my list of things to plan for and/or be ashamed of? The straws aren’t hurting anything, not really. Science is more than welcome to work on creating a better straw. But until they do, just leave us and our straws alone! Put them in a dispenser on the table, same as you do with napkins. If you don’t need a straw, don’t take one. If you do, there they are. This doesn’t have to be a thing!

What this is really about, white liberal activists, is you wanting a win. Living in the times of Trump has been hard for you. It’s been hard on all of us, and harder on some of us, but you aren’t used to things being this hard. You’ve marched, and you’ve protested, and you’ve called your senators, and you’ve argued with your racist relatives… and none of it has seemed to matter. Things are worse now than before you started hashtagging #resist all over your social media. You’re tired of crying and feeling helpless. You’re tired of yelling and feeling helpless.

Believe me, I feel you!! Some of us have spent our entire lives feeling this way to some extent or another.

But it isn’t about Good Person Points. It’s about people. When your good intentions aren’t having the impact you hoped for, and are actually hurting people, it’s time to change your course.

If I Were Asked To Speak…

I’ll never be asked to speak at church during the first weeks of July. They usually like to start the month with patriotic talks, and they like those talks to be given by older white men, preferably those who have served in the military, definitely those who vote conservative. Because, of course, these old white men have the market cornered on patriotism.

It’s too bad that a liberal wildcard like me will never get asked. I think I could give a good talk. I daresay I’d even talk about values that conservatives sometimes think they exclusively own.

For example, I would talk about personal responsibility. We live in a country founded on beautiful, lofty ideals. We live in the only remaining world superpower. But as Spiderman tells us, with great power comes great responsibility. As the Doctrine and Covenants (Mormon book of scripture) tells us, unto whom much is given, much is required.

Patriotism asks much more from us than waving flags and unconditionally loving our country regardless of what it does. In fact, it doesn’t ask that at all. Screaming that “we’re number one” isn’t patriotism; it’s the ugly kind of pride that the Book of Mormon warns us about on every page. Patriotism demands that we take our responsibility seriously to keep our country accountable for living up to its own ideals.

Is it patriotic to repeat over and over again how much we value our religious freedom? Maybe. That depends. Do we value everyone’s religious freedom, or just our own? If we’re rhapsodizing about our religious freedom, while staying silent on the travel ban targeting Muslims, then we are hypocrites. If we believe the thin disguise trying to avoid the appearance of bigotry, then we’re fools. A patriot has no room to tolerate this egregious attack on freedom. Of all people, Mormons should know best that the United States is willing to turn on a religious group that they’re uncomfortable with. We should be most ardently defending that freedom for all people. We should consider it our duty.

If I were asked to speak about patriotism, I’d spend some time talking about where this value ranks in our lives. Love of country is good, as long as we’re continually engaged in making the country better, not covering up its problems. But is it the most important thing? Loving God is the first and great commandment. Loving our neighbor is second. Loving our country is somewhere further down the line. If it comes before God, then it’s idolatry. Which master are we serving with our full heart? Are we quoting scripture in the spirit that its intended, or are we perverting the word of God to defend moral atrocities?

Talks about patriotism often refer to the Book of Mormon’s promises to the “promised land.” But if I were giving the talk, I’d be compelled to point out that the United States is only a fraction of the promised land. The BOM is referring to the American continents overall. The promise of the promised land is that we can enjoy liberty when we keep the commandments and serve God. It also explicitly states that the land is cursed when we are unrighteous….

Two thousand years after these blessings and curses were spelled out, Europeans came along and committed mass genocide throughout the American continents. We enslaved millions of people. We haven’t loved our neighbors; we’ve massively oppressed and dehumanized our neighbors every time we got the chance. We’ve trampled all over the most important of God’s commandments, and in most cases, made no attempts at repentance.

How can we call ourselves Mormons, Christians, or patriots when this is not only our heritage, but a heritage that we cling to proudly? We know that God specifically said our land would be cursed if we were unrighteous, but we have no interest in making these sins right? I don’t believe that righting our national wrongs is some crazy liberal agenda. I believe it’s our patriotic duty. A good country can’t survive with so much rot in the foundation.

If I were speaking about patriotism, I would restate the need to evaluate the ranking of patriotism compared to other values in our lives. Love of country is great. But the nation isn’t the fundamental unit of society. The family is the fundamental unit of society. I know, because I’ve listened to about eleventy bazillion talks quoting the Proclamation on the Family. Patriotism demands that we care for our society, so we have to prioritize its fundamental unit. Not just our own families, not just families that follow a prescribed formula, not just families that look like our own, and not just families that are on one side or the other of arbitrary, man-made borders. It’s our responsibility to strengthen and support all families. If we’re patting ourselves on the back for “defending the family,” while staying silent about immigrant families being torn apart, then we’re hypocrites. If we believe the thinly disguised lies from this administration about how they’re protecting families, then we’re fools. A patriot can’t have any tolerance for such callous attacks on families.

I won’t be asked to speak in church anywhere near the 4th of July. This year, I’m not even singing any of the patriotic hymns. It isn’t because I’m angry (although I am), or because I’m trying to make a statement (not this time). Frankly, it’s because I know I can’t get through them without ugly-crying. I can’t even listen. Instead, I bury my face in my phone and distract myself with anything else. Singing about the America I love is too painful right now.

I do love my country. I consider all the lofty American ideals to be my guiding stars–independence, freedom, equality, opportunity…. My life’s work is welcoming families to the United States and supporting their pursuit of the American dream in every way that I can.

I could tell you about the stars in kids’ eyes when they arrive here, ready for a new start. Sometimes that’s a true story, and it’s an exciting and inspiring one. But then I would also have to tell you about the demons in their eyes, when they come carrying more trauma as a child than a person should have to face in a long lifetime. That story is true more and more often…. I want to wrap a red, white, and blue blanket of healing around these kids, and promise them that they’re home, that they’re safe, that everything will be better-than-ok. But the blanket is pretty tattered and not offering a lot of comfort right now. All I can offer is my own hands.

My hands are full, and they’re tired. My heart is heavy. I don’t have the strength to hold my head up and sing about an America that feels more like a myth than a reality. But I want to. I desperately want to believe that we can get the American experiment back on track. I don’t know if we can recover from the place we’re at now. But I believe it’s my patriotic duty to keep fighting as if we can.

I’ll never be asked to speak in church about patriotism. But that doesn’t mean that I’m not thinking it, feeling it, breathing it, and fighting for it every day.

Because I’m A Scary Lion

These things all happened within the past week:

  1. I was coming down the hallway at school, and another adult clearly wasn’t watching where she was going. I needed to cross her path, but she was looking in the opposite direction. So I made a very wide turn, creating tons of extra space between me and her, just in case she did something erratic. Just then, she turned her head, saw me in front of her, and made a big show of stopping and screeching, “You almost ran into me!” (I wasn’t even close to it.) I responded, “No, you almost ran into me.” (And she definitely would have, if I hadn’t been doing all the watching-where-she’s-going for her.) She laughed like I was making a joke. I didn’t, because I wasn’t.
  2. Again, coming down the hallway, this time crowded with kids. We’re all following the normal traffic patterns of a hallway. Nobody is doing anything wrong. Nothing interesting is happening. Just another day in the hallway… Until an adult monitoring the hall screamed at a bunch of kids to “Watch out!! Give her space!!” The kids, who were nowhere near me, looked confusedly in my direction, since that’s where the adult was gesturing… She just pointed at me, though, didn’t actually look at me, so she didn’t see the mix of confusion, irritation, and embarrassment that had to be on my face. (Sidenote: her shouting caused everyone to slow down and move in weird patterns, so new hallway congestion was created that definitely hadn’t been a problem moments before.)
  3. Out and about somewhere, a mom was walking with her preschool-aged daughter. Cute kid; I smiled at her and she smiled back. They were on their side of the nice, wide sidewalk, and I was on mine. We were all meandering in the sunshine, nobody in a hurry. Then the mom noticed me, grabbed her daughter’s hand, yanked her even farther away, and yelled “Look out!” Let me reiterate: the child was nowhere near my path, and we were in the middle of greeting one another like civilized humans.
  4. I was traveling down another sidewalk, and an older couple was coming out of a store and crossing the sidewalk. I was moving at about nothing miles per hour anyway, and when they appeared, I further slowed to a complete stop. There was probably six feet of space between me (stationary) and them. The wife, who was a step ahead, saw me, gasped, grabbed her husband’s arm, and shouted “Watch out!” The husband, who seemed to struggle with walking anyway, looked like he was dangerously close to toppling over when she pulled on him.

This wasn’t a remarkable week. It was completely normal. It was my normal.

People get confused when I use the word “ableism.” It often confuses spellcheck too. So I expect even more confusion when I use the less common “disphobia.” (Spellcheck didn’t like that.) But I don’t know what else to call it. People have a very real fear of disability. It manifests itself in all kinds of ways, but it’s most obvious when implicit bias drives automatic reactions in situations like these. If any of these hysterical women had taken an entire second to actually look at and think about the situation, they would have seen there was no danger. If the situations had been identical, and I’d been making the exact same movements at the same speeds on my own two feet instead of in a chair, they wouldn’t have reacted. There would have been nothing to react to. But when they saw a wheelchair, their instincts overrode their sense, and their brains shouted “danger!”

(Yes, I know I used the phrase “hysterical women,” which is decidedly unfeminist phrasing. But you know what? This particular response seems to come from women more often than men. The behavior fits the definition of “hysterical.” And I’m not using the phrase to uphold the patriarchy and oppression of women; I’m calling out the oppression of the disabled. Like the phrase or not, I’m leaving it.)

I’m not dangerous. From my observations of the world, you’re much safer when sharing the sidewalk with a wheelchair user than anybody else. I know that I’m generalizing, but wheelchair users tend to have fantastic spatial awareness. We know exactly how much space we need, and how every slight bump, crevice, or slope in the ground will affect our use of that space. We also manage to look in every direction at the same time, and keep track of how everybody around us is using their space. (Yes, we have eyes in the back of our heads. I got one extra set of eyes for being a wheelchair user, and then another back-of-the-head set when I became a teacher, so I can see all the things.)

It’s the able-bodied you need to look out for. They’re careless. Believe me, I’ve spent a lifetime studying them. They pay very little attention to where they’re going. They find it completely acceptable to walk in one direction while looking in another. They change direction or come to complete stops without warning or taking a look around. They think texting and walking should be simultaneous activities. If they carelessly crash into another able-bodied person, they usually have the decency to own it and apologize. But if they crash into a wheelchair user, they claim that they “got run over,” even if the wheelchair user was sitting perfectly still!

It’s a lot of work being responsible for the physical safety of every head-in-the-clouds able-bodied person that wanders through this world without a license to be on the sidewalk. (They also think it’s hilarious to ask if I have a license to drive my chair. Such comedians…) You probably don’t even know how many times your life has been saved by an everyday hero in a wheelchair looking out for you, dodging your erratic movements, protecting you from yourself. Sometimes I have to make a quick call in the moment, and realize there’s no way to avoid being run into, but I can swivel just enough to minimize the impact, or make sure the able-bodied person doesn’t fall on my joystick, which would send me flying into yet another person. In those moments, I’m thanked for my quick-thinking with a glare for “running them over.”

Don’t message me with your stories of the times you really were run over, and it really was the other person’s fault. If that’s where your head is right now, you’re missing the point. It happens. Everyone has had their careless moments, including me. And when it’s my fault, I’m quick to apologize.

But everyone hasn’t had (at least) four people this week freak out at the sight of them, as if a hungry lion were lunging at them. Everyone doesn’t get treated as an object to be feared.

And I’m only talking today about the most basic fear of physical safety. I’m not even getting into the more complex social fears. The people who “don’t know how to talk to someone with a disability.” (Hint: follow exactly the same social rules that you use when talking to someone without a disability. So complicated and confusing, I know.)

I wonder if this is kinda sorta what it’s like to navigate the world as a black man. (Or woman… But I feel like the fear response is especially common with black males.) To be seen as a threat everywhere you go. Watching people jump, gasp, grab their children, lock their doors, get away, reach for a weapon… before they’ve had a chance to check themselves. Given a moment to think, they might insist that they’re “the least racist person” they know, but it’s that first split second reaction that betrays their fear. The fight or flight response.

It hurts to live in a world that’s afraid of you. It’s exhausting to carry the burden of easing everyone’s fear, convincing everybody you meet that you’re not a threat. Because if you don’t, as every black person in America knows, their fear can quickly turn into a dangerous situation for you.

At least in my case, the harm done by disphobia is usually limited to shame and discomfort as the other person makes a scene.

Disphobia threatens both my life and my livelihood in plenty of other ways. But usually not on the sidewalk. I guess I should be glad?