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!
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.
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.
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….
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…
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.
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….
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.
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.
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.
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.)
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.
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?
I wrote a lot of words about TEDxPortland, so this is Part 2. If you haven’t read Part 1 yet, you might want to start there.
Friday morning, I was at the Keller Auditorium for rehearsal on the stage. (Shout out to Jillian, a true hero! She gave me sub plans so that I could more easily take the day off work, and having that task removed from my plate was ridiculously helpful!) It’s a REALLY good thing that I got to be on the stage and in the space before the day of the event. I had pictured it being huge and overwhelming and terrifying up there… but the reality was a hundred times more so!
The lights were brighter than I thought, the teleprompter was smaller than I thought, and the microphone was just as awful as I thought… I’m actually significantly more afraid of microphones than audiences. Hearing my voice bouncing back at me is super awkward. (Also, the mic guy told me the earpiece microphone would make me look like Beyonce, but… I checked the mirror, and I didn’t see Beyonce. It just looked like me, wearing a mic attached to my ear.) Seeing people’s faces gives me energy to feed off, but the lights were so bright, I couldn’t see faces anyway…. I underestimated how completely alone, vulnerable, almost naked I would feel on that stage. Typically when I’m on stage, it’s with a choir, and I’m just part of the group. Or I’m teaching/facilitating a group, where I may be in front, but I’m leading a conversation with lots of participants. But on the Keller stage, it was just me. There’s nothing else to look at or listen to. Nowhere to hide or blend it. Nobody to pick up my slack. I knew those seats were going to be filled with 3,000 people the next day, plus the internet, but I’d never felt more alone than on that stage…
My head was still spinning when they gave me the go-ahead to begin speaking. I got about a sentence and a half in, and my brain shut down. I couldn’t comprehend any of the words on the screen in front of me. (Ironic, since I was trying to get to a story about a kid who also wouldn’t have been able to read the stupid screen…) I wondered if it had been a poor choice to write bullet points, and if instead I should have written out word-for-word what I wanted to say. I stumbled, stopped talking, couldn’t think, and then asked, “Can I start over?” That presumably inspired no confidence from anyone. My inner choirgirl chastised me for it, “Never stop! No do-overs! Just keep pushing forward, proving that you can recover from a misstep! What are you doing?? Ms. Duck taught you better!!” The second time through, I got to the end, but it wasn’t good. My affect was flat, and my pacing was slow. I was pretty sure I could do better, but I wasn’t sure I could do better by the next day!
That was my time on the stage, so then I went off with Annatova to practice some more in a dressing room. Originally, I had wanted to hold the clicker and move myself through the visual slides. I mean, I handle my own visuals in the classroom every day, so how hard can it be, right? But midweek, I realized how stressed I was going to be with coordinating reading/speaking/breathing, so clicking could be outsourced. That turned out to be the right choice. Annatova’s a gem of a person, and was completely dedicated to creating and executing visuals that would highlight my strongest points. And she was encouraging and kind and ready to help me with anything I possibly needed through the entire process. We made some minor tweaks to my notes, and then went through my speech two more times. It felt better…
Let me just insert here how dazzled I was by the entire theater experience. I was wandering back stage in the same theater where I’d seen so many of my favorite shows! Just two weeks earlier, I’d watched Hamilton on that stage! Days spent at the Keller have always been my very favorite, watching talent on stage that blows my mind. What was I doing in the same spots where Alexander Hamilton and Elphaba and Christine Daae and Brian Regan and the Cirque du Soleil performers had been?? I kept trying to stop and just drink it in. I have a couple theater friends in my life who hang out in those spaces all the time. But for someone like me who usually inhabits the back row, those are mystical, magical, sacred spaces.
Anyway, after that, I went back into the audience to listen to other speakers rehearse for a while. I was told I’d feel better after watching other rehearsals, and see how we’re all human and in the same boat together…. But that’s not how I felt! It was actually really stressful to watch everyone else give the talk they’d been practicing and polishing for 6 months. I could see the results of months spent choosing every word, practicing delivery, cadences, gestures. Plus they all got like 16 minutes or something to deliver their messages. I was supposed to do my talk in 7, which was a stretch from the original 5-6 I’d been given. At first, I’d been directed to speak really specifically, at the micro level, about techniques and applications for techquity. Then we’d talked more, and it expanded to the more macro-level–let’s go change the world and influence public policy. So I need to cover all the levels, plus introduce myself, and introduce a word nobody had heard before, and explain why it’s important in education, and why it’s important to non-educators, and how we’re all educators, and tell a story about a dear-to-my-heart former student…. All in 7 minutes?? With only a week to prepare?? Would you like me to spin some straw into gold while I’m at it?!? I wasn’t sure anymore if this was really the amazing opportunity I wanted it to be. I was afraid it was actually a giant practical joke from the universe…. Opportunities like this only come around once in a lifetime if you’re really lucky. I was trying to grab it with both hands and hold on tight, but it felt like a real set-up for failure…
I needed to get out of that space… I did my best to keep my game face on while making my exit. (Although I’m told that my face keeps no secrets, so it probably wasn’t successful.) Even though everyone had been nothing but supportive and kind through every single step of the process, I found myself wanting to scream at them for putting me in this impossible situation. I knew that was irrational, and I knew the irrationality was amplified by the fact that I had barely slept in a week. I was running on adrenaline and Dr. Pepper. So instead of screaming at the wonderful people that were constantly giving me the royal treatment, I left!
Got lunch somewhere, and then I still had some time to kill until my Erin was arriving. (Erin was on her way from Mexico!!! She flew out for the weekend, determined she couldn’t miss this moment. On the one hand, everyone needs an Erin in their life. On the other, who really deserves a friend like her??) With that window of time in my day, I honestly didn’t want to do anything at all. I didn’t want to practice any more just then, and I was so drained. I badly needed a place to just sit back, close my eyes, and maybe doze off if I was lucky. But where do you go to take a nap downtown? I had a wave of empathy for the houseless population… Then I wandered over to the library. That seemed like a nice, quiet place to just be. I found a random spot between shelves in the back of a room, and tipped my chair back. They probably don’t love people taking a nap between library shelves, but I decided to bank on my “white girl in a wheelchair” status to keep them from kicking me out. It worked; nobody bothered me.
I had only been there a minute when I suddenly burst into tears. Didn’t know that was coming! Such a week, so many feelings… I alternated between crying and pseudo-napping for a while. Such a hot mess! I tried to think invisible thoughts and hoped nobody could see me. Not my finest moment….
And then Erin showed up! Found me in my library hole, and we hugged and cried and laughed as only we can! I always feel stronger with Erin around…
We went for some pre-dinner nachos, like ya do, and talked at Gilmore speed, like we do. And then we met some friends for dinner at Habibi. It was exactly the evening I needed before the big day! Just friends I could relax and laugh with. Plus delicious food.
With a little help from a priesthood blessing, I was able to sleep better that night than I had all week. Still not a lot of hours, but it was something.
The next morning, I got dressed in the outfit Karista had picked out for me, and the earrings Erin had brought from Mexico. (What would I do without friends to take care of the important things?:)) The bus dropped me off, and I sailed through the stage door like I belonged. Not gonna lie, it felt good to bypass the long line I’m used to standing in! We had determined the previous day that the green room wasn’t going to work for me—there were five steps, and while they tried to put up a ramp, it was crazy-steep. So we’d chosen a comfortable dressing room I could use instead. I went straight there, and started running through my talk again. Annatova joined me, and we practiced going through it with the slides, making sure that I was fluent in my delivery, and she was clicking at the right spots.
Then there was a knock at the door. “Is it ok if Ann puts her dress in here?” What? Who’s Ann? Oh… oh! That’s Ann Curry! She came in, shook hands, and introduced herself, asking if it was ok to share the space, or if she’d be in my way. (What kind of person would tell Ann Curry no?) Then she asked if she could get us coffee. (This time we said no, thank you.) As she bustled in and out, I heard her offering coffee to everyone else, and actually delivering to a few. It’s like she didn’t know that she was Ann Curry! Except, I’m sure she did know, and she was using her position to fully support and lift up everyone around her. What a classy woman.
You know that moment in the movies, where the scrappy underdog is about to go do something scary, and then a wise celebrity/hero/cool-person-they-have-no-business-talking-to appears out of nowhere to give just the advice they need? I totally got that moment. It was cinematic. Ann started to give me the usual “just be yourself” blah-blah, and then she got more focused and intense, “Just remember, nobody is paying you to do this. You’re giving them a gift. And if some people don’t want the gift, fine, they don’t have to take it. But your job is to give the f***kin’ gift. So go out there, and give the f***kin’ gift!” Yes, that’s exactly what she said, exactly the attitude she said it with, and exactly what I needed! Life highlight, right there.
We chatted a little more. I told her that I was looking forward to hearing her speak. That got a delighted “Are you really?” in the same tone any of us normal humans would have used, as if my opinion actually matters to you when you’re Ann Curry. She talked about how a TED talk is different from her usual job of telling other people’s stories. This one required introspection, telling her own story, and talking about journalism in the context of our broken society. We talked about the importance of telling stories, and how the stories are told, and which stories are told…. It was lovely. I feel a little bit like I failed by not getting a photo, but I just couldn’t bring myself to kill the vibe.
I even got a bonus awesome-person-moment while waiting for the event to start. Greg Bell sat with me for a few minutes, encouraging me to drink in the moment. Every moment. Even this one. I told him that I want to be his friend, and I wish I were cool enough for that to be real, because I just love his vibe. He’s like this Zen-Master-Morgan-Freeman-Mr.-Rogers combo. He also gave me some brilliant advice: “There’s always going to be some fool trying to get in your way. Just make sure that fool isn’t you.” (I love that so much. I fully intend to repeat it to the kids whenever the moment calls for it.)
After soaking in all the goodness, I was as ready as I was going to be. I hung out in the narrow hallway for a while, making faces at Ron Artis II’s adorable baby girl, and getting my chair decorated with flowers, because why not?
Then it was my turn to get mic’d. Still didn’t look like Beyonce. They put lots of tape behind my ear to make sure it would stay in place, and sent me to wait just off-stage. I didn’t hear much of my introduction, but I know that my name has never sounded more strange and out of place than when it came out of Luis’ mouth just then. I felt like he’d just announced Big Bird was going to give the next talk. Or maybe that would have even sounded more normal.
I thought I was ready, but I’m pretty sure Dave had to say “go!” like three times before I went. And then I went! Found my spot on the giant red X carpet. No false starts this time. I knew that once I started speaking, I had to keep going. So first I took just a second to breathe, look around, and feel myself in the space. Then I went for it!
It still bothered me that I couldn’t see people, but I heard laughs when I opened by reinforcing my “did this in a week” crazy situation, and that helped. Laughter helps me relax and feel connected. Somehow that makes it safer to then open up and get vulnerable… I kept talking. I got to my story about “Jose,” which I can’t tell without my heart spilling out all over the place. I didn’t know if anyone was picking it up, but I was putting it out there. I love that kid so much, and still wish I could do more for him… I punctuated his story by comparing it to my own. The technology withheld from him had been offered to me twenty years earlier. You’d expect students today to get a better tech experience, but not so. It’s a matter of who has privilege, and who doesn’t, plain and simple. It was important to me to make that crystal clear.
I brought it back to techquity as a concept and a paradigm that has the potential to take our current efforts to a deeper, more meaningful level. I tried to be clear that I wasn’t proposing any easy, quick fixes to education. I was encouraging more intentional approaches to individualize and provide access to learning. If I had an hour, I could have shared a million examples. And it would have been clear that I don’t have all the answers, and that I fall very short of being the teacher I want to be. But my vision is becoming clearer all the time about who our students are, and what they can do, and what they need, and how we need to step up and do better. With access to technology growing, I see all these dots in place with powerful potential, but we’re not connecting the dots very effectively… We need to do better, and I said so…
Remember how we made minor tweaks to my notes the day before? Those tweaks didn’t make it to the teleprompter. There’s a moment mid-talk where I give what sounds like a dramatic sigh, and it’s actually because the teleprompter was only showing me words I’d deleted, and I was panicking. I needed to keep talking without being able to see the next portion of my notes… I did, and they caught up with me pretty quickly, thank goodness.
And then it was over! I heard applause, but still couldn’t see faces or anything, and for a moment I felt a little out-of-body while exiting the stage…. There I was greeted by the world’s most enthusiastic praise and high fives and hugs and slaps on the back and kisses on the cheek! I wonder if that’s what it’s like when you run a marathon and cross the finish line? My heart was racing and I breathlessly repeated like ten times, “That just happened! That just happened!” My brain couldn’t even compute that I’d just given a TED Talk! Nobody does that! Definitely not a little nobody like me! Did I really just give a TED Talk??! Such a rush!!
As they removed my mic, Ann Curry ran around the corner to give me a hug and tell me I was amazing, and that I’d received a standing ovation, “Did you see it?!” No, I actually hadn’t! And now for the rest of my life, I’ll be able to say the sentence, “I didn’t know I’d received a standing ovation until Ann Curry told me.” That just isn’t a sentence many people get to say. So far, I haven’t gotten tired of saying it.
After that, I got to settle into my front row seat (never sat anywhere near the front row of the Keller before!) and just enjoy the rest of the day. I felt super lucky that I got to speak early in the program, so then it was off my shoulders, and I could listen attentively to everyone else. So much goodness to take in!
I also got to enjoy warm and kind feedback from all sorts of people. Both that day, and ever since. The best are people saying “I was that kid…” or “I know that kid… Could we talk about strategies that might help me serve them better?” I’ve heard my own language echoing in professional conversations, and seen a renewed energy and desire to be creative and outside-the-box in meeting students’ needs. My own classes watched the video while I was gone, and have been soooo sweet and supportive and interested in having conversations about all of it.
Overall, I’m just indescribably grateful for the incredible opportunity and platform that the amazing folks at TEDx offered me. How many people actually get the chance to shout from the rooftops about their passion? Taking an idea that’s existed mostly in my head for years, and handing it over to thousands of people, hopefully igniting conversations and action beyond what I’ll ever know about, is so surreal. So humbling. Techquity has always felt bigger than me, or like it should be bigger than me, and now it can be. I’m not the guardian of the idea anymore. It’s out there, and now the world can grow it, shape it, apply it, however it sees fit. That’s a little scary, like watching your baby leave the nest, but mostly it’s thrilling to imagine the possibilities.
I’m also beyond grateful for all the friends and community that have surrounded me with love and support through this whirlwind of a process. I heard the sentiment several times that week, “I’m so excited and nervous and my heart is racing… I feel like it’s happening to me!” The sweet fruit of tu eres mi otro yo.
What’s next? I have no idea. The world somehow seems more open and full of possibilities to me now than a few weeks ago. I hope that in some shape or form, I get more opportunities to collaborate with people who are trying to do better for our kids.
One of my super cool 8th graders randomly said last week that “The world is going to end on Saturday.” She didn’t know about my upcoming talk that day, and it was such a weird comment, which she couldn’t explain…. But afterward, when she’d listened to my video, she changed it to, “Actually, I think something just got started on Saturday. It was a beginning.”
Someday I want to reread this and remember every single thing about TED week, so I wrote a lot of words. Below is Part 1, the week leading up to the event. Go to Part 2to read about everything after arriving at the Keller Auditorium.
On March 8, I got an email from TEDxPortland, which I assumed was advertising their upcoming event. This would be my fourth local TED event, which I enjoy with my friend, Afrita, every year. Always such a great day where I get inspired to care about things I didn’t even know I would care about! But this email was advertising something brand new, something that had never been done at any TED event in the world—an idea booth. They had set up a booth downtown, and were inviting anyone to come and record 90 second videos pitching their idea, with the promise of one (or two) being chosen to give a talk on the big TEDx stage!
First of all, I thought this was brilliant. The team does a great job curating fantastic speakers every year, but what a perfect way to break through the inherent limits of “they don’t know who/what they don’t know.”
Second, I knew immediately that I needed to pitch an idea, and exactly what that idea would be. My idea had been brewing for years, slowly fleshing itself out, and waiting for an opportunity for a larger audience.
Third, I took a close look at the photos and videos, because I’ve rarely seen a photo booth that was wheelchair accessible, and this looked similar. Sure enough, there was a visible step up into the booth. That seemed like a terrible reason to give up on my idea, though, so I contacted the TEDx people, and asked how I could submit my idea. They were very kind and apologetic for the accessibility oversight, and offered to either meet me somewhere to record my idea, or to let me submit my own video via email. I’m perfectly capable of opening up iMovie and talking at my computer for 90 seconds, so I did that.
(Note: This response was perfectly appropriate for this year. Next year, I expect better! Accessibility requirements and info about alternative plans should be posted both on the website and at the physical booth location. Just a little pro tip for anyone planning events and such!)
And then I tried really hard to forget about it! I was sure there were tons of great ideas submitted, and the likelihood of mine being chosen was probably slim. It wasn’t too hard to let it fall to the back of my mind, because my personal life was a giant mess. Every time I turned around, another loved one was facing a huge crisis and in need of major “thoughts and prayers” and any other support I could offer. Life was hard… and I was pretty sure I was making a nuisance of myself to God, begging him to fix things.
TEDx didn’t fall completely out of my brain though. I was aware when the April 5 deadline came, that people would be reviewing all those videos and making a choice. I wondered if it would be wrong to pray about it… Praying for my idea to be chosen didn’t feel right, so I didn’t do it. But I finally found the words that felt right, and I prayed that an idea would be selected that would have the most positive impact in the community. Because that’s the whole point, right? It’s not like I was dying to be on stage; I just wanted good things for the community. I submitted my idea because I believe in its power to do good, but I would wholeheartedly support any idea that could do more good!
Some time passed and I didn’t hear anything back, so I assumed they had chosen someone else. That was fine; I knew it had been a long shot. I just hoped they chose someone good!
Then on Friday, April 13, I started my morning with an email from David Rae, the executive producer and face of TEDxPortland. (It’s important to note here: the big event is scheduled for the next Saturday, April 21.) They weren’t committing to anything, but they wanted to hear more about my idea. Could they call me in an hour? And could I be thinking about five concrete points I could share about my idea?
When David Rae asks, you say yes. That’s just a life rule we all should live by. Thank goodness it was a grading day, so I didn’t have a classroom full of students. I put grading on hold, and spent the next hour furiously scribbling thoughts and arrows all over paper. I also called Nicole, who had been bouncing this particular idea around with me for a couple years. I heard Lin-Manuel in my head, singing “I’m not throwing away my shot…”
Let me add here, I don’t work in the entertainment industry. I don’t work in the corporate world. I know pitching and selling ideas is a thing people do, but I have no clue how it’s done! I didn’t have time to seek advice from wikiHow. I was just going on instinct and authenticity.
The phone call came, and all the important people were on the line, while I sat in my lil’ classroom, waving away everyone who came by with a grading question. (Don’t worry, I followed up afterward!) We chatted for a minute, and then Dave asked if I could get my list of five concepts to them within the next two hours. Not sure if I was doing it right, I just said honestly, “Well, you emailed me an hour ago… So right now I have two lists of five in front of me. One with very specific techniques, the other more general guiding principles. I also have an anecdote about how I came to this work that I feel frames the entire concept quite nicely. I can share as much or as little as you want to hear.” (Spoiler: that “anecdote” was “Jose” in the final talk.)
Apparently this wasn’t the common or expected response? I don’t know. I still don’t know how these things are done. But after a pause, I hear, “Ok, that’s it, we’re just calling it right now. We want you.”
“What? Wait… what? Just like that?”
“Just like that. Are you willing to give a talk next week at TED xPortland?”
“Are you sure? I mean, yes!! Of course I’m willing! But you didn’t even hear my points. Are you sure about this?” (I’m sure the professional idea pitchers don’t try to talk their audience out of saying yes to them… But what can I say? I’m an amateur.)
“We’re sure. If you have the passion and tenacity to pull all that together in an hour, then that’s exactly what we’re looking for. And we already loved your idea. It’s strong, it’s catchy, and we googled it; it doesn’t seem to be in the lexicon. We’re going to make some more phone calls and get at least one other speaker, but we definitely want you.”
(I later found out that one of the other Idea Booth videos was made by a little boy pitching an idea for an airplane that dropped “cash bombs and love bombs and chicken bombs.” I can only assume that TEDx approached him first, and he was busy that weekend, so I was their second choice. Who could compete with love bombs and chicken bombs??)
And then I went back to quietly grading…. Just kidding! Then I launched into a whirlwind of telling my news to everyone I knew, getting a tentative talk outline to them in the next two hours, freaking out, breathing, and completing grading day responsibilities. It was a crazy day, and the volume would only get turned up with each day that followed. My first phone call, of course, was to Afrita, since she’s not only a dear friend, but also my TED buddy! Her excitement level didn’t disappoint, and she gave me the perfect reassurance/advice: “No matter what you say up there, it’s going to be great, because you’re so others-focused. You’re going to bring attention to others and their needs, and people are going to listen.”
The second I emailed that first outline, I already hated it. Over the next couple days, I scrapped it and started fresh at least twice before landing on a strong skeleton. Then I spent the rest of the week refining that.
It was very exciting to meet with the team in their office in the WeWork Custom House that first weekend. I’d always passed by that gorgeous building and wondered whose lives were cool enough to have a reason to go inside. Sitting around the table with Dave and Allen, whose names and faces I knew from years of attending TEDx, and meeting Annatova, who was introduced as my designer but turned out to be something closer to a guardian angel, I heard Hamilton music in my head again, this time singing about “the room where it happens.”
In that powerful room, I got to talk about TECHQUITY. This idea had existed mostly in my head for years, occasionally discussed with like-minded educators. But there we were, talking about it like an idea that matters. They asked me questions to get past the veneer of a catchy buzzword, and helped me dig into the heart of the concept, why it matters so much to me, and why it should matter to the larger community. I watched their faces catching the vision, which was then reflected back to me in a more refined and larger scale vision. Such a rush! I left feeling more enthusiastic than ever about techquity, and confident I could express it to a crowd.
Well, the confidence came and went as the week progressed. But when I’d start spinning out, suffering big time from “imposter syndrome,” sure I didn’t deserve to be on that stage, I’d come back to what Afrita said about an others-focus. Maybe I didn’t deserve to be on stage, but so what? It’s not about me. It’s about my idea, and its capacity to impact others. Believing in myself is hard, but I believe in techquity. I believe in the kids that can benefit from techquity. That deserved a stage. I just had to focus on doing justice to the idea.
Allen was my go-to during the week who kept checking on me, answering my questions, rehearsing with me via video chat, and generally holding my hand through the whirlwind. He has that rare superpower I always admire of making people feel like they’re super-important to him. I knew that he had to be under enormous pressure of being one of the heads of this HUGE event, but any time I talked with him, it felt like I was his top priority. (I’m sure I wasn’t, but it felt like it!) He seems to remember everyone he’s ever met, and everyone they’ve ever met. And not in the fakey politician way, but in the sincere, I-want-to-connect-with-everyone-and-help-them-connect-with-each-other way.
Thursday night was the fancy TEDx dinner, which seemed to include everyone who’s ever been involved with a TEDxPortland event. I was surrounded by so much greatness, and I loved just soaking it all in. Met all kinds of cool, interesting people. (Somebody said in a speech that “If you’re in this room right now, you’re interesting!” And I wished my insecure 13-year old self could know that’s coming.:)) Everyone I met looked horrified when they learned that I had just found out I was speaking less than a week before. They all knew how much goes into preparing one of these talks! Then they always tried to quickly replace the horrified expression with a supportive one, “You’re going to do great!” Yeah, ok, thanks guys…. None of them, of course, actually knew if I’d be any good. They didn’t know me. And they didn’t know if a speaker could be chosen from a booth (sorta) and show up ready to go in a week, because it had literally never been done before!
Most importantly, butterscotch pudding happened. I know, who really cares about butterscotch pudding, right? But I’m telling you. Run, don’t walk, to the Irving Street Kitchen, and get the butterscotch pudding. It will change your life. They offer it to-go in mason jars, so it’s not even necessary to sit down for a meal. (Although if you’re looking for an amazing meal too, stay!)