I was 14, a freshman in high school, when the Columbine shooting happened. Kids today will never understand how big that news was. Just like the rest of the country, I obsessed over the story. I knew the names of the shooters and many of the victims. I took in so many detailed accounts from all corners of the school, that I could see vivid pictures in my head as if I’d been there. The shooting became part of me. It shook me. I went about my days feeling deeply unsettled, as my world had turned upside down. The world wasn’t as safe as I once thought. Schools weren’t safe. I knew bad things happened in the world, but not at school. How could a building full of kids trying to learn, be a dangerous place? If schools weren’t safe, what was? Fear settled deeply into my bones. My entire world felt like it shifted, and I desperately wanted to return to the innocence and naivete I enjoyed as a child. The innocence and naivete that today’s kids don’t get to experience.
We promised we would never forget.
Instead, we did something much worse than forget Columbine.
We accepted it.
We could have done something about it. We chose not to. We chose to do nothing after Columbine, and nothing after the 209 school shootings that have happened since then. We chose to do nothing after the 70 mass shootings that have happened since Columbine. Fun fact: Did you know Columbine no longer even ranks in the top 10 deadliest shootings in modern US history? The situation has gotten so much worse than 14-year-old-me could have imagined, and not by accident. This was deliberately chosen. We decided–and keep on deciding–that we value guns more than we value human life.
How many lives? Since Columbine, 164 lives lost in school shootings. Since Columbine, 607 lives lost in mass shootings. I know because I went through the lists and counted them. I invite you to check my math and count them yourself. It’s quite the experience to scroll through all those lines, adding up the numbers. At first, you feel the weight of every individual–the family, friends, and everyone affected by each lost life. Then, as you keep adding 3, and 5, and 6, and another 3, something scary happens–you start becoming numb. They’re just numbers… Until you hit a large number, where a couple dozen lives are lost at once, or your grand total crosses yet another hundred mark, and reality gives you another jolt. The weight of all that loss, all that tragedy, all that pain, comes crashing down again. I cried as I calculated. It turns out math can be a form of mourning.
We chose to sacrifice those hundreds of lives. We chose to ruin thousands of lives of those left behind. And I feel confident that we’ll keep on choosing these tragedies. There’s no reason to think Parkland, Florida was the last straw that will finally convince us to reset our moral compass. We know how to greatly reduce the violence and death. Every other developed nation on earth has managed to avoid this kind of carnage; their laws and methods aren’t a secret. We don’t follow their example, because we don’t want to. Human life isn’t actually important to us in the United States. We didn’t forget Columbine, and we aren’t surprised when it happens again and again. We’ve just decided that we’re ok with it. That this is acceptable damage.
My kids won’t ever understand how big of a deal Columbine was, because to them, a school shooting is just another Wednesday. There were more deaths today than in the 1999 shooting, but I’m guessing half my students don’t even know about it. Or if they do, they’ll have forgotten in a couple days. The city of Parkland, Florida won’t be forever engraved in their brains like Littleton, Colorado is in mine. It’s barely a blip on the radar. As adults, we won’t remember today’s details for long either. It’ll blend into the blur of indistinguishable horror with all the rest. Just white noise.
The details of the day won’t be on my students’ minds. But it absolutely stains their psyche. The human need for safety and security is as primal as it gets, and our society doesn’t offer it to our kids. There’s no avoiding the negative impact on their development.
Tonight will be another one of those nights when I fall asleep with terrifying images in my head of “what if it happened here.” I’ll play out every possible scenario in my head. What if my kids are the victims? What if my kid is the shooter? Maybe it doesn’t do any good to obsess about these terrible thoughts… but what if it does? What if I actually have to act in the moment one day? This might come as a shock, but teachers aren’t trained to be first responders. We work with police officers to learn and practice our school’s procedures, but it doesn’t help me feel much safer. I’m sure the 209 schools that have had shootings in the last 19 years had procedures too, and hopefully those procedures minimized the death count. But 164 lives were still lost. The thought of any of my own kids being added to that total….. I can’t. I just can’t.
People say they’re sending thoughts and prayers after each of these tragedies… but a lot of those people are lying. Actual thought and prayer leads to action. Leads to compassion. Leads to solutions. Leads to peace. If people, especially our elected leaders, were actually thinking deeply and praying sincerely, our culture wouldn’t be in the mess that it is. This people draweth nigh unto me with their mouth, and honoureth me with their lips; but their heart is far from me. (Matthew 15:8)
We don’t have to live like this. The rest of the world doesn’t. This is a uniquely American problem of our own creation. We need to start by overhauling our gun control laws, because duh. Choose any other developed nation, and design laws like theirs. It doesn’t even matter which country we choose as our model at this point. Any of them will be an improvement.
Then, once we slow the hemorrhage of American blood, we need to start addressing all the underlying problems that fuel the violence. We need to deal with why people are hurting so badly, that they want to harm others and themselves. We need to deal with why people are living in such desperate despair. We need to treat the pain. We need to treat the solitude. We need to strengthen our communities and care for each other. We need to make the wellbeing of our children the country’s number one priority.
Anything less should be unacceptable. That’s my thought and my prayer.
Years ago I coined a phrase that still feels right. I like to say that I suffer from LMA, Liberal Mormon Angst.
It was hard during the Bush years, especially when I knew I was expected to defend Prop 8. And I tried. I was a young, faithful Mormon girl, and I tried so hard to feel good about Prop 8. But my heart was never at peace. I’m pretty sure I said some stupid things, which I regret, in my attempts to defend the Church’s stance. I prayed and prayed, trying to get God to tell me what position I should take on marriage equality, which fight I should fight. But God never directly answered the question. All I ever got was, “Just love the LGBT people in your life, no strings attached. That’s what you can do, so do it well.” Well, ok then. It leaves a lot of unresolved concerns in my mind, but at least I don’t have to fight against LGBT families. I need to love. I can do that.LMA was hard during the Obama years. Especially during that darn “Mormon Moment,” when it wasn’t just the normal expectation to support the GOP candidate; now I was expected to support Brother Romney! But how could I? (Sure, compared to what we’re dealing with today, he looks good. But my neighbor’s cat looks like a good candidate when put against today’s White House, so that’s not saying much.) My moral compass wouldn’t let me support his big corporation loving, 47% of the population hating, binders full of women toting, flip flopping self… Although if he’d stayed true to who he was as the governor of Massachusetts, I might have been able to get on board. He did good things as governor. Then he changed his position on virtually everything, taking a hard right in his presidential campaign, so I ended up A) disagreeing with his positions, and B) unable to trust that he has any moral backbone. Also, I still have the same questions about all the Romney loving Mormons in my life…. If Mitt had run for president with the same pro-healthcare, pro-gun control, pro-choice, pro-environmentalism ideals that worked for him in Massachusetts, would they still have supported him? Would they be claiming different positions on all these issues too? Did it bother them that their hero couldn’t make up his mind about his stance on anything? But as morally confusing as I found the Romney camp, I was the one who constantly had to answer the question, “How can you support Obama and call yourself Mormon?” (Short answer: because his values align very closely with mine.) Those were hard years.There was a brief window of naivete in 2016, where I thought my LMA burden might get a little lighter. Mormons weren’t pleased with Trump gaining traction, and support for the leading Republican candidate was at an all-time low. Utah didn’t vote for Trump in the primary. And then they scrounged up Evan McMullin out of nowhere, giving me hope that Mormons were willing to think outside the GOP box. I even had some sympathy for my conservative LDS friends, left without a a candidate. But I hoped that in this new world, where Mormons were checking out other options, maybe there would be more room for me and my liberal ways? I might still not agree with a lot of church members on politics, but at least we could mostly all agree on #NeverTrump, #AnythingButTrump, right? A common enemy has brought groups together more than a few times before.
My hope was short-lived. The Mormon resistance folded like a house of cards…. True, less than 50% of Utah voted for Trump in the general election, but it was still enough to give him the state. I was disappointed, but not shocked. The heartsickness started setting in when the Mormon Tabernacle Choir sang at his inauguration. Helping to celebrate a man that we all knew was dedicating his life to terrorizing most Americans, as if he were just another president.
And then this new report, that Mormon approval of Trump’s presidency ranked higher than any other religious group throughout 2017. (Read about it here.) 61% of Mormons reported approval of this president! We’re the only group that showed over 50% approval. It shouldn’t surprise me. Mormons have always been so predictably Republican, that the GOP doesn’t even try to actually court our favor. They assume that we’ll vote how they tell us to, and they’re right.
But call me crazy–I thought this time could be different! Every time there’s an election, the Church issues basically the same statement about how “principles compatible with the gospel may be found in various political parties,” and reminds members that we should “seek candidates who best embody those principles.” Now we have a leader who demonstrates a total lack of any principles on a daily basis, and we’re ok with it?? We’re giving him a thumbs up? The biggest thumbs up in America? Who are we??? Why can’t we make a stand for values with at least the same showing as any other religious or non-religious group in America?
People both inside and outside the Church question whether I’m really dedicated to my faith, since they can smell the LMA all over me. But what neither seem to understand, is that my stubborn moral code is a direct result of being raised LDS. By the time I was grown, I’d listened to countless sermons and taken home eleventy gazillion cutesy handouts, all telling me to “stand for truth and righteousness” and to seek after things that are “virtuous, lovely, or of good report or praiseworthy.” So I feel a deep rooted obligation to stand up against the direct opposite. I can’t figure out why 61% of my fellow Mormons aren’t standing with me. We don’t have to agree on what steps we should be taking as a country. But it should have been a no-brainer to agree on all these lines that should never, ever have been crossed…. 61% approval. Not 61% expressing tolerance, or resigned disappointment. The I’m-not-happy-but-I’m-not-the-type-to-protest crowd are presumably mixed into the other 39%. No, 61% of us actually approve of all these moral lines being completely erased.
I don’t actually know who the 61% are. Most people aren’t as vocal about their support for Trump as they’ve been for others. And that’s fine, because I don’t want to know. Once I know that someone is in favor of my oppression and the oppression of so many others, I can’t un-know that about a person. But I do notice all the people who aren’t expressing disapproval or dissent. I notice when they don’t have a word to say when the president and his posse are attacking others, whether it’s via words or policies. And I can’t figure out what happened. We all grew up doing the same role-play activities, preparing us to be bold in the face of moral danger. When has there ever been a better moment to take a stand??
Of course, there are two sides to the LMA coin. It doesn’t just make it hard to feel safe around fellow Mormons. Sometimes it isn’t so safe around fellow liberals either.
The Book of Mormon musical is coming to town again. (It probably doesn’t make the rounds any more often than other big shows, but it sure feels like it comes around a lot!) So here comes another round of listening to my open-minded, coexisty, liberal friends talking about what fans they are of this show. They don’t hide it from me either; it never seems to occur to most that I might possibly find this offensive. That’s weird, right? If the Fox Newsy folks made a big Broadway musical called The Quran or The Torah, making fun of their respective religious groups, I can’t imagine anything but outrage from this same circle of friends. Likewise, if the show had been called The Bible and mocked any other Christian group, the Fox Newsies would be seeing red. But the Southpark guys were smart, and they picked the religious group that nobody would care about defending, and wouldn’t even defend themselves. The Church has consistently shrugged it off, which maybe isn’t the worst strategy. “Don’t feed the trolls,” right?
But here’s the thing. I don’t believe in mocking or demeaning anyone’s religious groups or beliefs. Particularly groups that have been historically oppressed. (We haven’t forgotten about Mormons being chased out of the United States at gunpoint, right? Mormon history is complicated, and we’ve taken our turns at being the oppressors. But let’s remember how we landed in the desert with our circled wagons.) So, I feel like I owe my own religious group at least as much respect as I’d grant any other. And it’s disappointing to feel pretty alone in that belief. The LMA has never made life easy or comfortable. It challenges me every day. My beliefs aren’t easily fit into one box. I’m not sure that deeply examined, truly consistent beliefs could ever fit neatly under one label. I don’t mean “consistent” as “never changing,” which would imply “never learning.” But I try to be consistently true to myself in what I believe and how I use my voice.
I don’t need everyone to agree with me on everything–how boring would that world be? I would just like to see, in these deeply upsetting times, people willing to upset their own comfort zone a little more. There will be people today posting MLK quotes about peace, and using his words to justify their own silence and deterrence from rocking any boats. They see themselves as promoting unity. This misuse of King’s words is an insult to his legacy. Silence about the plight of the oppressed only deepens the divides created by the oppressor. If we’re ever going to move closer to achieving Martin Luther King’s dream, we need quiet moments of introspection to ask ourselves uncomfortable questions. And we need loud voices to promote our convictions.
You never know which random moments will stick in your head forever. There’s a day from my AP US History class that still haunts me. It was my junior year of high school, so that would have been in 2000 or 2001. (In a pre-9/11 world… That’s not actually relevant, but I just have this general sense that it was an entirely different era.)
For some reason, our teacher showed us this video from…. Dateline? 60 Minutes? Something in that genre? It was all about the standardized testing culture in Texas. Their students had to take a test called the TAKS, and it was a big deal. We watched clips of pep assemblies to hype kids up for the TAKS. We watched cheerleaders jumping around with their pompoms and cheering about doing your best on the TAKS. We watched walk-and-talks down hallways covered with motivational TAKS banners and posters full of test-taking strategies. We watched glassy eyed teachers explain all the ways they’ve been getting their students to practice for the TAKS and incentivizing them to do well…
It was terrifying. And completely bizarre. My 16-year old brain couldn’t wrap itself around what I was seeing. I was used to taking fill-in-the-bubbles tests every year, but I’d never for a moment thought they mattered. I knew there was some sort of connection between our test scores and our parents’ property taxes, but that wasn’t enough to make me care about those mind-numbingly boring tests. I couldn’t fathom what kind of kool-aid could have convinced the entire state of Texas to get so worked up about filling in bubbles! I’d known since early elementary school that standardized testing was the most meaningless waste of time all year. Who managed to fool an entire state into wasting even more time and resources??
Little did I know….
I couldn’t have imagined what was coming. I didn’t understand that No Child Left Behind was being passed at the time, and that it would force-feed the same kool-aid to the whole country. I definitely didn’t imagine that I’d become the glassy eyed teacher administering these pointless-at-best, harmful-at-worst, and misuse-of-resources-in-any-case tests year after year. And every year, I have flashbacks to watching that video in US History, blissfully unaware that my future was playing out on the tv screen.
(I won’t go into all the reasons our testing obsessed culture needs to be stopped. There are a million articles and videos on the subject. But for a quick refresher, I’ll direct you to John Oliver.)
As we enter another year’s testing season, I find myself retreating to a dream world. I have this fantasy about a world where teaching and learning were treated with the same respect and reverence that we give state testing. What would that be like…?
Imagine the emphasis every day for every kid to “get a good night’s sleep and eat a healthy breakfast; you have important learning to do.” Snacks might even be provided.
Students would treat every class with the best focus and effort they could muster, because this matters.
There wouldn’t be interruptions over the intercom. Ever.
Nobody would get pulled out of class.
Fire drills and earthquake drills and lock-out drills and lock-down drills would never cut into class time.
We would be extra certain that every student with a disability or other need was getting every accommodation necessary for their success. Not just on paper.
Those who need small groups to focus, would get all of their learning time in small groups.
When a student needed more than the allotted time, somebody–a learning coordinator, an administrator, somebody besides the teacher–would give them as much time as they needed. Students would be encouraged to go at their own pace.
All necessary materials would be provided. Teachers wouldn’t be paying for their own supplies.
Speaking of dollars, all the money going into the testing industry would instead be coming into both our classrooms and our pockets.
A teacher’s professional judgment would be utilized as a valuable resource and prime piece of data.
Phones would never be in students’ possession.
Cheating in any form would be a BIG DEAL.
Curriculum and materials would be developed around teachers’ stated needs and desires.
Basically, I’m dreaming about a world where everyone cared, like, really cared, about teaching and learning. Didn’t just care with their words and with memes on social media, but cared with time, dollars, and respect. I’m dreaming about a world where teaching and learning never had to compete for a place on the priority list in school.
The crazy part is, if we could convince everyone–children and adults–to invest as heavily in the learning as the testing, guess what? The testing would take care of itself! If you want better output, you have to focus your energies on the input. How is that not obvious?
Put down the testing kool-aid, America. Those cups are full of poison.
We aren’t Black Friday shoppers in my family. My mom is generally already done with her Christmas shopping by that point; I’m not ready to start mine; and none of us like crowds. We often venture out to the movie theater though instead. This year, we made an excellent movie choice in Coco.
I haven’t missed many Pixar films. I didn’t see any of the Cars movies or The Good Dinosaur, but I think I’ve seen everything else. At this point, it’s almost freakish how consistently fantastic their productions are. Every time, so sweet and heartwarming, without reaching saccharine… It seems like they’ll have to bomb eventually, right? But not yet. I can’t recommend Coco highly enough. Beautiful story, beautiful visuals, beautiful music. Despite some controversy during production, Pixar righted their course, and the final product exceeded all my expectations.
But I have to confess something.
Going into the movie, my inner monologue sounded a little something like this: Another Day of the Dead film, hmm… I hope it’s not just another Book of Life. I mean, that movie was good, but do we need another one already? Is Día de los Muertos going to be another movie trend? Like in 2006, when it seemed like all the movies were about magicians or penguins? Or in 1998, when we had competing animated movies about bugs? Or the last 15ish years, when every other movie is about comic book characters?
And then I caught myself. Day of the Dead as a trendy topic, like penguins or bugs? Like there isn’t room in American cinema for two Day of the Dead movies? What on earth is wrong with me? I never think, “What, another one? I hope it’s not like the others…” when a new Christmas movie comes out. I expect there to be a constantly replenishing supply of Christmas movies, and Halloween ones too. Why did I approach this holiday differently? Like a fad with an expiration date, instead of a natural setting for an infinite number of stories to be told?
Why? Because ethnocentrism. Because implicit bias. Because white privilege/supremacy. Because I’ve been conditioned all my life to see my white American cultural practices as the norm, and everything else a deviation from that norm. I’ve been conditioned to expect my own culture to be woven throughout the entire fabric of society, and everyone else’s culture to hang out over there in the diversity corner.
I could argue with these self-deprecating thoughts. The argument might sound something like this: What? No! That’s not what I meant. Stop making a big deal out of little things. I’m a good person! The least racist person you’ll ever meet! I have friends from lots of races, and they’ll all vouch for me! I love Latino culture and people. I loved Día de los Muertos before Disney told me it was cool. I’m an ESL teacher! How could I possibly be racist?
But you know what? That’s not what a good person does. A good person doesn’t resort to the “but I’m a good person” argument, making it all about them. (And they definitely don’t use their friends of color to prop themselves up. That’s just a gross way to treat a friendship.)
It also doesn’t do any good to bury one’s head in self-flagellation.
So, I let myself sit uncomfortably with my own offensive thought for a moment. I acknowledge that it was there, and that despite all my good intentions, I’m a product of my culture, just like the rest of us. I’m not immune to societal programming. That thought was created by a system that’s much bigger than me, and while I’m not responsible for the larger forces that created it, I am responsible for how I handle it. I can’t bury it, pretending it didn’t matter or even exist, without examining it first. I wonder what other thoughts have slipped through my mind without my filtering system even picking them up. I wonder how these subconscious thoughts and biases might come out in my actions and words. I regret the thought, and apologize silently to the universe. And I recommit to do better.
I come from a dominant, oppressive culture. I don’t want to be a dominant, oppressive person, and I want to be part of positive change in my culture. So I have to catch myself in these moments, even in the small things. I have to recommit to be better. I have to recommit to being the person that I want to be. I have to acknowledge the world as it is, and work towards the world that I want.
(Day of the Dead originated with cultures that have been on the American continent for much longer than Europeans. They were here first. And the United States is only beautiful when we value all of our parts. That very much includes our Latino population. So, no, it’s not acceptable to act like a Mexican holiday is a trend to please the whims of the white masses. Just to be clear!)
I’m sitting in a Starbucks, lazily enjoying a quiet day after a rough week, and my lip gloss rolls off the table. As I lean over to see where it ended up, a woman starts to reach for it. Then she pauses and asks me, “Can I help?” “Yes, thank you!” She hands me the lip gloss and I thank her again. She tells me to have a good day and goes on her way.
Another time I was here and approaching the door to leave. I can push my way through this particular door when I need to, but it’s pretty awkward. A man saw me and asked, “Can I help with the door?” “Yes, thank you!” He opened the door and I thanked him again. He told me to have a good day and we both went on our way.
Later that same day, I was meeting a friend at a restaurant. I decided to wait at one of the patio tables out front. As I shoved a chair out of my way, a man walking by asked, “Can I help with that?” “No, thanks, I got it!” He told me to have a good day and went on his way.
Super boring stories, right? Simple, quick, natural, pleasant, but not really noteworthy interactions.
But I mentally awarded each of these strangers a gold star for not being weirdos. People get so weird around disability! Like they think they need a whole new set of social rules that they aren’t familiar with, when the regular social rules will actually work just fine.
“I never know if I should help or not!” You wouldn’t believe how much time I spend coaching people through this able-bodied problem. To an extent, I get it. These are usually kind-hearted people whose first impulse is to rush in and help. But then they’re afraid of insulting someone by offering unnecessary help. And I sincerely appreciate the fact that they’re thinking about how the other person will feel, not just how good they’ll look for being a helper! In fact, I applaud the thought that’s accompanying their good heart. At the same time…. they’re really overthinking things. It’s not that complicated.
If you’re not 100% sure that your help is or isn’t welcome, just ask. Sometimes I’m secretly hoping someone will offer, because I hate asking for help. Whether I need help or not, it’s always easy for me to say “yes please” or “no thanks.” I’ll even smile while I say it. I’m not the Lorax, and I don’t speak for all disabled people. I can’t promise everyone else will smile when you ask if they’d like help. But it seems like a generally safe approach. I can’t remember ever being offended by somebody making the offer. Once or twice I’ve been confused, when I couldn’t figure out what exactly the person was offering to help me with, but never offended.
Here’s an example of how not to do it…. And I feel a little bad about using an example from my professional life, because I actually work in an amazing place with incredible colleagues. I’ve always received any help or support that I need at work, without anyone making a big deal or being condescending about it. This incident was a rare exception, and it happened quite a few years ago.
We were all heading into a meeting in a computer lab. I was walking in with a friend, and we spotted two seats together over on the other side of the lab. She went ahead to grab the seats and move a chair for me, while I started to go the long way around where the path was clearer.
I was stopped, though, by two other teachers on a mission to be helpful.
“Here, Kristine, we can move a chair for you. Do you want to sit over here?”
“Oh, no, thanks, I was just heading over there!” I smiled and gestured in the direction I was trying to go.
“No, really, we can make room!”
“No, it’s ok, I’m fine, but thanks!”
“But we can move! Really! It’s no big deal!”
“No, I’m fine!” I start to walk away, thinking that will decisively end the conversation.
Nope. Then I got yelled at. These were teachers with very loud voices. (Actually, most teachers have loud voices. Even those of us with softer voices by nature, know how to project.) “Kristine! Come right here! We’ll just move this chair, and hey, so-and-so, you don’t mind moving so Kristine can sit here, right?” They were being so loud, and pushy, and making other people move, and pushing furniture around, and absolutely weren’t taking no for an answer.
I was embarrassed by the scene, so I finally just slipped into the spot they’d created to shut everyone up. Then I sat there and fumed through the entire meeting.
I was angry that I’d been silenced and ignored. I was angry that their need to be helpful was overriding my right to make my own choices. I was angry that I wasn’t allowed to sit with the friend I’d walked into the meeting with. I was angry that they were all sitting there pleased with themselves for being good helpers. I was angry that I’d been dragged into this loud scene. I was angry that I was being ordered around like a child. I was angry with myself for letting it happen.
The initial offer was absolutely fine, even appreciated. And I’m generally ok with one, “Are you sure?” But the absolute insistence that help will be given, and it will be given on their terms, is not welcome. Nor is it helpful.
Just don’t be a weirdo. Ask the person if they’d like help. Then respect whatever answer is given. It’s not that hard. And I suspect that isn’t a disability-specific social rule. I feel like it’s a norm that will serve you no matter who you’re interacting with.
I feel the need to majorly preface everything I’m going to write about here….
Some of my favorite memories from growing up were at MDA Camp. From probably 8ish years old right on through high school, it was always the best week of summer. Occasionally I wake up in the morning now and realize that I was back at Waskowitz in a dream. I could still find my way easily around the entire camp with my eyes closed.
It’s hard to find the words to describe the magic of Camp… It felt like stepping into another entire world for a week. We didn’t have mobile devices back then, or anything connecting us to home, family, friends, or even what was going on in the world. It felt incredible, almost cleansing, to just walk away from everything and slip into another universe. The rules were different at Camp. There were hardly any adults to be found; most of the “adults” were actually teenagers, or young 20-somethings at the most.
Social life happened at hyper-speed. A total stranger on Sunday would be your best friend forever by Tuesday. Couples would get together and break up and get back together. (Some are still together now!) It took no time at all to go from zero to total emotional intimacy. (Probably other types of intimacy too, but I was a child; people didn’t tell me these things.:)) Totally normal to tell your brand new friends the deeply guarded secrets you’ve never talked about with anyone before. It felt so…. safe. We could be a bunch of awkward, crazy, uninhibited weirdos, and just expect to be loved and accepted by everyone else, since they were also busy being awkward, crazy, uninhibited weirdos.
Endless memories of pranks, swimming, dances, talent shows, crafts, underwear raids, The Coats, the awful food, spirit chants, pizza night, sleeping out by the river, sing alongs, riding Harleys, King Limbo, secret messages in the newsletter, snack shack goodies, and just hanging out by the pool… I think that more than anything, when I’d go back home and have to adjust to reality again, I missed being able to go hang out by the pool any time of day and be surrounded by friends and whatever was happening. It was like a mega-Central Perk.
Ok, so now that it’s hopefully very clear that MDA Camp holds a priceless place in my heart….
Let me tell you about my Labor Day weekends growing up… (This is going to be hard to write.)
Labor Day weekend meant the Jerry Lewis MDA Telethon. It ran from 1966-2014, and evolved very little in all that time. For almost 24 straight hours, I’d listen to all these people in fancy clothes talking about Jerry’s Kids. Until very recent years, there was no acknowledgment that people with muscular dystrophy ever grew into adults. Kids are cuter, better at eliciting sympathy and opening checkbooks. Also, keeping the adults out of sight helped encourage the narrative that we were all knocking at death’s door.
It was the only weekend of the year when I’d have to think about life expectancy. No kid knows what to do with thoughts about life expectancy! But people on tv kept talking about it, so I had to think about it. And it was confusing. I knew that the doctors had told my parents I wouldn’t live past age 5, and I’d already outlived that, but all my other MD friends seemed to have the same story, so I just figured doctors were dumb. I didn’t feel like I was dying. Was I dying? Was my brother dying? Were we all dying? Technically, isn’t everybody dying? Was I more dying than other people? What kind of a stupid word was “terminal” anyway? (I developed a Pavlovian eye-roll to the word as a child, and it doesn’t serve me well as an adult. You’re not supposed to roll your eyes when people tell you about their loved one’s terminal diagnosis! I have to very consciously repress the urge.)
A portion of local telethon time was usually devoted to a tribute to somebody I knew from MDA Camp that had passed away within the last year. So, yeah, I guessed we were dying…
But wait! We didn’t have to die! Because if people called in with donations, scientists could find a cure! The cure was right around the corner! They’d talk so excitedly and confidently about it. Again, I was confused. Was there really going to be a cure? Did I need a cure? Should I be excited about this? I’d look to my parents and ask, “Do you think there’s really going to be a cure?” They’d look at each other with that “You answer this one; no, you!” look that parents give. That’s all I needed. I knew that meant the cure talk was a lot of hot air. And if they were exaggerating when they talked about cures, then they were probably exaggerating when they talked about dying too. I decided none of it was worth thinking about…. I had to come to this decision anew every year.
Some years my family attended and appeared live on the local segments, and other years we stayed home. Staying home wasn’t an escape, though. They came out to my house two or three times throughout my childhood, made a video about my family, and then played it over and over, telethon after telethon. They played clips of my brother and I answering questions about our favorite part of Camp. They showed our parents crying about the day we were diagnosed. They showed us being cared for, taking off braces and being carried around in our underwear. (We have laws to protect non-disabled kids from that kind of exploitation, right?) They showed us playing with our dog in the backyard, while sappy music made it seem more “touching” than every other kid in America playing with their dog in their backyard.
I hated it more than I can express now, and exponentially more than I could express then. I was a shy child, a rule-follower, a people-pleaser. I didn’t know how to speak up and advocate for myself; I was just doing what I was asked to do, what I was supposed to do. I didn’t know that my own feelings were a factor that should have been considered. I didn’t know how to say that the footage and entire telethon experience didn’t just make me feel shy, but ashamed.
I really didn’t know how to answer the kids at school the next day who would say, “I saw you on TV.” Remember, this was Labor Day weekend, so the new school year started the next day. All any kid wants on the first day of school is to fit in and have friends. Having my disability magnified on TV the day before to such an extreme degree that I didn’t even recognize myself, did nothing to help.
At least while watching/participating in the local telethon, I could distract myself by appreciating all the people I knew and loved from Camp. But much worse was when they’d cut back to the national telethon. That stage was full of total strangers telling the world to feel sorry for me. Worst of all was the man himself, Jerry Lewis. I could forgive him for being a “product of his time” if he’d been willing to evolve, engage with the people he claimed to serve, rather than continually oppress us and prop himself up. He had the power and privilege that could have been used for so much more good…. Disability activists asked Jerry to speak of people with MD with respect instead of pity. They asked him to give air time to adults with MD. They asked him to bring awareness to societal barriers that make independent living so hard for people with disabilities–issues we can tackle if we choose to, without waiting for scientists in a lab to make a miracle.
Jerry wasn’t interested, and neither was MDA. They held onto Jerry until very near to the end. The man who continued to host the telethon until 2010 referred to people with MD as living in a “steel imprisonment,” a life full of “indignities,” and only being “half a person” (Parade magazine, September 2, 1990). According to Jerry, with a diagnosis like mine, “you might as well put a gun in your mouth” (1991 MDA Telethon). Because after all, I’m one of those kids who “cannot go into the workplace. There’s nothing they can do. They’ve been attacked by a vicious killer” (1992 MDA Telethon). What did Jerry have to say to the disability activists making crazy demands about respect and educating the public on relevant issues? His words were “Fuck them. Do it in caps. FUCK THEM” (Vanity Fair, September 1993).
Lest you think this was an issue confined to the early 90s, don’t worry, his most memorable quote came from 2001. When asked about the activists who were still showing up every year to picket the telethon and demand respect, Jerry said “Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!” (CBS Sunday Morning, May 20, 2001)
When asked at the grocery store to round up my total to the next dollar for charity, I say yes to every cause except MDA. I just can’t do it. I can’t bring myself to give them a penny. That doesn’t mean you shouldn’t, but I can’t. Does that make me a bad person? I have no idea. Yes, I did benefit from money MDA raised. Camp was such an important part of my life growing up, and the relationships formed there are still important to me. (I can’t honestly say I got much benefit from MDA outside of Camp, but I hope some people do…) But I’ve paid such a high price already.
I’ll continue paying the price for Jerry’s damage the rest of my life. For 50 years, he helped shape a toxic culture that oppresses disabled people with weapons of pity, low expectations, invisibility, voicelessness, exploitation, objectification, infantilization…. Ableism didn’t start with Jerry Lewis. But with all those years in the spotlight, he had the opportunity to push back and help bring ableism down. He didn’t. Instead, he made ableism into a cash cow that was milked for all it was worth. And I have to navigate this culture every day.
I pay the price for this ableist culture every time strangers stare at me or feel entitled to ask me personal questions. I pay the price when people say to my face that they’d rather die than be me. I pay the price when people are afraid to say the word disability, like it’s too horrific to speak of. I pay the price when I’m spoken to like a child. I pay the price when nobody expects me to have a job/career. I pay the price when people walk into my classroom and can’t figure out who the teacher is. I pay the price when people doubt my ability to have authority or respect with my students. I pay the price when accessibility is treated as a kindness, not a right. I pay the price when my right to die is advocated for more strongly than my right to live. I pay the price when the audience seats are accessible, but the stage is not. I pay the price when single men are kind to me to impress a pretty girl, but don’t see me as a pretty girl worth impressing. I pay the price when I’m told how independent and inspirational I am just for leaving my house. I pay the price when people are eager to speak for me without stopping to listen to me.
Others pay the price too. The 82.5% of the disabled population that’s currently unemployed is paying the price; so many of them want to be working. Those with disabilities who deal with depression and are treated with euthanasia instead of counseling, mood stabilizers, independent living options, etc. pay the price. The disabled children who are murdered by their parents pay the price. The older people who are scared of social shame if they use a mobility device, so they stay home and withdraw from the world, pay the price.
If Medicaid ever goes away, we’ll all pay the price. Even by the threat of it, we’re paying a price.
I’m not the Lorax; I don’t speak for the trees. There are plenty of people with MD who sincerely mourned when Jerry Lewis passed a couple weeks ago. There are plenty who remember their telethon days fondly, and continue to fundraise for MDA. I respect their views.
There are also plenty who agree that Jerry’s methods were problematic, but, they shrug, how else are you going to raise money? The end justifies the means, they believe. That viewpoint makes me sad…. It’s like they’ve grown so used to their cage, that they just accept it. It’s entirely possible to support a cause and a population of people, without degrading them. The social justice world is full of examples.
I tried to be classy and stay quiet when Jerry passed and everyone was expressing their feelings on social media. I won’t miss him, but I’m not the kind of person to dance on anyone’s grave… (Although I’ll admit, I did smile and press the “like” button when a fellow MD-er commented that he successfully “outlived Jerry.”) Then people started passing around that awful vintage telethon photo with me in it! Using my picture to express love for Jerry and his work really pushed me…
I knew I had to share my story. After so many years of having my story told for me, and told wrongly, I have my own voice and I can speak for myself. It was such a relief when I was a teenager with the internet, and I found disability activists online, expressing what I’d always felt about Jerry Lewis and the telethon. Finally, I knew that I wasn’t crazy, and I wasn’t alone. Finally, I was finding words to express what had lived in my heart for years. I didn’t have the courage or platform to to say what I wanted to back then, but I had greater clarity and community, and that kept me sane.
My story isn’t the telethon story. But it’s my telethon story, and it isn’t the only one of its kind. I ask you to take it as no more, and no less, than that.
I didn’t know what I was doing when I started this blog about a year and a half ago. I just knew that I missed writing, and wanted a space to stretch those muscles. Since then, I’ve been overwhelmed with incredible feedback from people in all corners of my life. While it’s been terrifying to put my bare soul on display and I’m often shaky when I press the “publish” button, it’s also been therapeutic to get thoughts out of my head and into the world. Some posts get more responses than others, but the responses are generally kind. It’s been so gratifying every time that somebody tells me they connected with something I wrote, and sometimes it even seems to strengthen my connections with the people in my world. I truly appreciate everyone’s comments. They always mean a lot, and give me the strength to keep going.
There was one comment, though, that has truly stood out from all the rest. This comment was so good that I never even hit the “approve” button, so it’s never before been seen on this blog. Today, I’m choosing to finally share it. This comment was left on this 4th of July post. Here it is….
You might have to read it two or three times to take it all in. Go ahead, take your time… A true work of art, no?
First of all, can we talk about the pseudonym this commenter used? T-rump. T-rump! Why haven’t we been using that nickname all along?? While many have had a Voldemort-like reaction to the president, not wanting to even say his name because it feels like a profanity and/or summoning of evil, we’ve stumbled through different alternatives. Some prefer to call him 45, some go with Donald, others prefer something with the word Cheetos in it. (I mostly try to avoid the latter. I hate the man for many reasons, but there’s no need to drag his appearance into it.) But clearly, we should have been using T-rump all along! It’s perfect for so many reasons…. “Rump” is just a funny word, no matter how you use it. And doesn’t T-rump kind of sound like a t-rex? Just like the man’s crazy gestures look sort of like a t-rex flailing his little arms? Also, it’s so simple. Literally all we have to do is drop a hyphen into the man’s name, and he’s T-rump. The perfect nickname.
Thank you, T-rump the commenter, for giving us that nicknamey gift.
Next, props for making the jab undeniably personal. T-rump obviously knows that I use a wheelchair, which I talk about a lot in my blog, but not in that particular entry. Whoever T-rump is, it’s not somebody who just randomly came across my blog, left a quick trollish comment, and moved on. This was somebody who has at least spent a little time with my blog, and/or knows me in real life. I feel honored, T-rump, that you would take the time to write this thoughtful comment with such a personal flair, and also leave me with the nagging question about whether you’re a person that I actually know. So much accomplished with so few words.
Seriously, so few words. 17 words, to be exact, and only 80 characters. This comment could easily fit into a Tweet, which of course is OG Trump’s favorite form of communication. Props for brevity. It usually takes me 1,000 words before I even know what I’m trying to say. But T-rump got straight to the point, no superfluous words needed.
Also, so bold! It takes a special kind of confidence to declare yourself a voice for the American people. And then to use that voice to wish death on an individual for offering a thoughtful critique of the country’s culture. Escalating straight from blog post to death wish! Go big or go home, right?
And this wasn’t your typical, flippant “go kill yourself” style of death wish. This one invoked such vivid imagery. I can almost hear the splash of the water.
T-rump obviously isn’t a nice person, but he’s also not pretending to be. Is he a monster? A literary genius? It’s hard to say.
There are two kinds of hymns that I sometimes struggle with singing. First, there’s the sunshine hymns. I don’t know, they’re just too perky for me. I can be happy, but I’m never that cheery.
Second, I struggle with the warlike hymns. Onward, Christian Soldiers?Hope of Israel?We Are All Enlisted? Let Us All Press On? Who’s On The Lord’s Side? I could keep going. Sure, they’re usually fun, rousing melodies, perfect for a little shot of energy that’s pretty badly needed most Sundays….
It’s just that, I have a hard time identifying with all the battle talk in church. I mean, I get it, we’re supposed to be God’s army, waging war against evil. But does that have to involve swords and shields and images of violence? Do we have to keep talking about enemies and foes to be vanquished? Jesus wasn’t afraid to get angry now and then, but he never dressed up in riot gear or shouted battle cries with a weapon in the air to get people excited and on his side. It just isn’t natural for me to look around and see other people as my enemy. I’m used to seeing people who need loving. Some are easier for me to love than others, but that’s the goal. Where are these enemies I’m supposed to be fighting?
Oh, wait! I found them. It took a few decades, but I found them. For the last two years, evil has just been presenting itself so clearly. Suddenly, I do feel enlisted. I do feel like I need a metaphorical sword and shield to keep myself and others safe. I do feel compelled to fight against evil. I find myself in all these uncomfortable situations, and the little voice in my head whispers, “Well, which side are you on anyway? Are you willing to stand up for what’s right, or not?”
So here we are! Finally! All those years of polishing that “whole armor of God,” training to build up my strength of character, my heart’s endurance, my moral fiber. All that time fine-tuning my spiritual eyes and ears, so that I’d be able to recognize God’s voice as well as the enemy if and when he/she/they/it decided to show up… At last, it’s show time! Gird up our loins, and fresh courage take! Let’s do this!
But… wait a minute…. where did everyone go?? Why isn’t every halfway decent person I know all-in on Americans vs. The Nazis/KKK/White Supremacists/Nationalists? All the bad guys came crawling out of their holes at once to say “neener neener, come and get me,” and this is the time to drop our swords and weigh the pros and cons of the many sides?? How did we fall so deeply asleep at the wheel, that we have to even think about which side we’re on?
Of course there are plenty of people responding exactly the way you’re supposed to when Satan’s squad comes to trash the neighborhood. And I’ve never been more pleased by the LDS Church’s response to anything–they explicitly condemned both the white supremacy agenda and pursuit of “white culture,” with sassy quotation marks and everything! Get ’em, Church! Wield that righteous sword!
But I have to wonder about everyone hanging out on the sidelines, telling us to calm down, take a step back, and stop making such a big deal about white supremacy. Telling us that most people are good. Telling us that slavery was a long time ago. Worst of all, the people who still think this is nothing more than politics and are posting stupid memes about liberal snowflakes. THIS IS SO MUCH BIGGER THAN POLITICS. You can be a good conservative, and be part of the resistance against racists and fascists. In fact, to be a good conservative, I feel like you’d kind of have to….
I realize that almost nobody I know is actively pro-Nazi. However, people seem to think that Charlottesville just kind of happened in a vacuum, and that it in no way reflects our society or presidential administration. (Oops! Someone let the Nazis out of their cages! We’ll just ship them back home in a time machine and get back to living our lives as good people.) Others have adopted this helpless “haters gonna hate” mentality, and don’t see any point in discussing the matter further. (Let’s just hold the door for each other and buy a Starbucks for the car behind us at the drive-through and wait for love to conquer all. Kumbaya….) The most self-centered people of all went straight to the defensive approach the day after Charlottesville, the same way they did in the weeks following the election. (Hey, just because I’ve aligned myself on the same team as the racists, and I never use my voice to condemn the racists or hold “my president” accountable for his words and actions, doesn’t mean I’m a racist! Don’t call me that! It hurts my feelings!) (Pro-tip: If you don’t like people calling you racist, redirect some of your energy into fighting racism. The White House isn’t going to listen to me, a card carrying Democrat, but your conservative voice carries weight! Use it!)
Charlottesville didn’t happen by random chance. The rise in hate crimes, hate speech, and hate groups isn’t happening by random chance. Trump’s election didn’t happen by random chance. It’s all a result of the larger US culture, which is moving in a direction that radicalizes and emboldens white supremacists. Our culture is making white supremacists feel safer than they’ve felt in generations. We can point at different individuals as scapegoats, but it’s a much larger cultural illness that we’re suffering from.
(I didn’t always believe that, by the way. I would listen to people of color talking about how racism is just as alive in America as it’s ever been, and I was trying to understand, but I still thought they were exaggerating just a little bit, minimizing all the progress we’ve made…. I was wrong…. And for the record, I realized I was wrong before Charlottesville happened.)
How do you fix a culture? It’s certainly bigger than any of us. But it’s comprised of all of us. Culture is determined by the words we all say, and the words we leave unsaid. Culture is determined by the values we all choose to act on. Culture is determined by the way we all spend our time, money, and energy. Culture is determined by the circles we all choose to associate and align ourselves with. We create our culture. We decide what we want our culture to be. We’re not helpless here. We’re responsible.
Sure, each of us in nothing more than a tiny droplet in the bucket. But water is nothing more than a collection of droplets. And water has ripples. Every one of our little cultural water droplets has the power to help shape our culture, to revive it, to make America a more humane and welcoming place.
Because guess what…. Ignoring the cultural ill of racism has never made it better. The theory of colorblindness already failed. We have to actually address the problem.
What does that even mean? How do we start?
Start small, and start quietly. Before you’re ready to use your voice and create change, you need to educate yourself. There’s a lot of learning and un-learning and re-learning to do. A deeply held conviction that “racism is bad and we’re all equal” isn’t good enough. You need an in-depth understanding of implicit bias and systematic/structural racism, as well as white privilege before you can proceed. This will take time. Start now. This is a period for way more listening, reading, and taking information in, than for bringing your own voice to the conversation. Get out of your own way, and just immerse yourself in learning, no matter how uncomfortable it makes you. Be a sponge.
As you learn to better recognize microaggressions and offensive speech, be an interrupter. (Don’t listen to those who will laugh at you for being “politically correct.” A thinking and feeling person knows that words are powerful, and should be carefully chosen to show respect for others.) Don’t brush things off with “They didn’t mean it like that…” Interrupt the moment. I find that playing dumb and asking the other person to explain themself can be effective.
Don’t make it about you. It’s never about you.
Remember that your impact is more important than your intent.
It’s not about you.
Impact over intent. (I can’t repeat those things enough.)
Be more concerned about injustice than discomfort. It’s ok to be uncomfortable, and it’s ok to make other people uncomfortable. Growth happens outside our comfort zones.
Keep talking about it. And talking about it. All that stuff you’re learning from bullet point number one? Make everyone around you crazy with how much you talk about it. Don’t be afraid. Persist. Yes, even with the people you consider family and friends. Those are your people. That’s where you can have the most impact.
Use your social media. And don’t just use it to spread your own voice. Follow activists of color, and share their words. I know, I know, you only signed up for all these social media accounts because you want to see photos of your nieces and nephews and stalk your ex-boyfriend and share recipes. But social media is where culture is most quickly shaped these days. Use those powerful tools.
Give what money and resources you can to causes that fight racial injustice. Give to individuals who need it. White people have an astronomically disproportionate share of the wealth in the United States, and it’s not because we’ve worked harder. (Go back to bullet point one. Keep learning.) Give some of that back.
Figure out how to be a genuine friend, ally, and support to the people of color in your circles. I’m afraid to even write this here, because I don’t want to encourage token friendships, or burdening PoC with naive efforts to become culturally aware… But figure it out. Figure out how to be a truly “safe” friend.
There are better lists out there about how to fight prejudice and racism and Nazis. I don’t even feel like my list is that great… But I don’t want to spend any more time fixing it. I just want it out there. Because the truth is, I can’t give you a to-do list of how to fight this battle. I can ask you to educate yourself (and then educate yourself some more), and I can encourage you to courageously get involved. You need to figure out what your talents, resources, and circles of influence are. Because that’s where your work is.
Most of us won’t get a shout-out in the history books for our work. And most of us won’t see much in the way of direct results. Don’t expect a cookie for your efforts. Just keep at it. Our culture can’t move in a positive direction any other way.
Sunday was a long-awaited day. I finally finished my Master’s program! Hit the “submit” button on my final paper, which was much easier than finding a printer that actually had ink and a stapler that actually had staples so that I could madly dash to campus (in the snow, uphill both ways) and turn in a paper, as was the typical process in undergrad. I marked the occasion with a facebook post, which got way more responses than I expected! It was a purely online program, so I don’t know my classmates, and I won’t be donning a cap or gown for a ceremony. But a couple super thoughtful friends have gifted me with unicorn socks and cake, which seems better anyway.
How long did it take me to finish? Depends how you count it…. I started the program approximately a million years ago. I took several classes, but it was right around the time the Recession was setting in and hitting the school districts hard. We lost all kinds of staffing, which meant I lost teammates, and there was a much heavier weight on my teacher shoulders. I finally admitted that I couldn’t handle it all at once, and set the program aside. Of course that meant losing momentum, and it took a long time to pick it back up again…. I finally picked it up last summer. Some of my credits were still valid, but others had expired, which meant retaking classes. I knew this was going to be a tough year, and of course it ended up being so much tougher than I ever could have predicted. But I managed to keep my head down, keep pushing forward, and finally finished the program a year later.
I appreciate the kind words from everybody telling me that I should be proud of this accomplishment! And I am.
At the same time, I’ve been feeling the weight of everything I haven’t managed to accomplish this year in all the other areas of my life. Whether it was work, church, choir, family, friends… I’ve been giving the best that I can, but it often hasn’t been very much. I feel like I’ve been that flakey person that makes all sorts of well-intentioned promises, and then fails to follow through. I’ve missed all kinds of birthdays and events that I should have acknowledged. I’ve said “no” when I wanted to say “yes.”
If I spent any time at all with you this year, please know that means you’re very important to me. It probably wasn’t as much time as I would have liked. But I definitely didn’t have time in my day or space in my head for anything I don’t highly value.
I really appreciate how kind and forgiving people have been of my shortcomings this year! When I feel like I’m coming up short every time I turn around, it means the world to be met with grace. So many thank yous to everyone who’s just loved me anyways!
I’ve been telling myself all kinds of nice stories about what a better person I’d be once the master’s program was done taking up space in my life. All the things I’d do and be with the copious free time that was going to fall into my lap…. Basically, I’ve been setting myself up for failure. I’m a teacher! I never had time or energy before starting this program, so I don’t know why I think I’ll have it after. I really won’t. I’ll hopefully be better, but I’m never going to be my idealized best.
I don’t know that I actually learned much from my classes. Sorry, it’s the truth; they were mostly all about jumping through a gazillion hoops. But I did learn a lot this year…. I learned about who I am, and about what’s most important to me. I learned about what I can let go. I learned about what I can never let go. I learned about my limitations. I learned about my strengths. I learned about my community. I learned about love. I learned about pain, and anger, and fear, and hate. And I learned about love.
Since I don’t have any graduation photos to share from this degree, I’ll stick this one in from undergrad. (It would be wrong to publish this post without a cap and gown photo, right?) I love this photo, and I love the people in it (and the few who missed the photo)! We were the “culturally responsive” teaching cohort, and we all qualified for the grant by being multicultural, multilingual, disabled, or some combination of the three. It was a pretty unique and incredible experience to be part of such a lovely pocket of diversity at mostly homogenous BYU. I learned from my classes, but I learned more from my classmates. We shared a crazy amount of laughs, love, and tears! The education profession would benefit from more programs like this, intentionally recruiting and training a more diverse pool of teachers. (Also: yes, we saw the directions stating that flower leis weren’t allowed. Jaymi decided that rule didn’t apply to us. Jaymi’s awesome.:))