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.:))
When I turned 18 and immediately moved out of state, nobody warned me that it would be the last time I’d see my heart all in one piece. My lil’ heart had been through its share of struggle already for sure, but it had always been grounded in one place.
I don’t have nomadic instincts. I would love to travel and see more of the world, but I like coming home to the same place. I was a lucky baby, brought home to a storybook-level of charming log cabin. My parents didn’t leave that house until the year I graduated college, and I think it’s safe to say I’ll never forgive them for letting it go. I’ve only made two major moves in my own life–to Utah for college, and to Oregon for life after college.
I don’t know how people stand moving all the time, when I feel like I leave so much of myself behind every time. Little pieces of my heart belong to different people and places, and once I’ve given those pieces away, I can’t have them back.
I love living in Portland. It’s the most perfect place for me. I love Portland people, values, and attitudes. I love the food. I love the public transportation system. I love that despite Portland being much more White than any city has business being, I live in diverse Beaverton. I always tell people that whether you want city, country, mountains, or ocean, it’s all right here, easily accessible.
Except…. It all takes a little bit of work to get to. When I open my front door, all I see is indistinct suburbia. The mountains in the distance are gorgeous! But in Utah, they were right there, taking my breath away every time I stepped outside. BYU kids would take morning hikes up to the Y before class.
The coast is gorgeous, and I love spending a day on the ocean’s edge. But in Seattle/Everett/Mukilteo, the Puget Sound was right there. You don’t have to dedicate a day; you can pop over to breathe that saltwater air on your lunch break. (Even teachers get three or four days a year with a proper lunch hour.)
I need especially the ocean, but all of these places to feel complete.
More importantly, my heart is divvied out between people all over the place. I’ve never been good at making friends. I don’t know how to meet people. I don’t know how to transition from small talk, which I hate, to real conversation, which I thrive on. I don’t know how one becomes a member of a Scooby gang, a Central Perk crew, or a hashtaggable squad.
But the friends I have are golden, precious treasures. I’ve managed to collect some of the best that humanity has to offer…. Except they have the nerve to not geographically cluster around me! Spread out all over the place, no matter where I am, I’m desperately missing most of my people and the pieces of my heart they carry.
I didn’t appreciate my Washington people when I had them. For various reasons, I spent too much time feeling lonely even when I was surrounded by incredible people. Thank goodness those doors didn’t slam shut behind me when I went away to college. Social media became a thing just in time for me to stay connected with communities I probably wouldn’t have otherwise, and in some cases become better friends than we were before. There are the few Washington friends that I still manage to spend time with at least once a year, and every time, I leave wishing that it could be weekly… or daily! Remember being kids, and it was the norm to see your friends daily?
My church community in my home ward was also unbeatable. It was a whackadoo group, but it was my whackadoo group. I’ve never met a group of people that took better care of each other. I naively assumed I would have that anywhere I went in life, since people love to say “the church is the same wherever you go.” But that ward was unique. I’ve been in other good wards, but I’ll always miss that one.
College life and its transitory nature were hard on me and my need for roots, routine, and predictability. It seemed like whenever I finally started warming up to people, the semester would end, everyone would shuffle, and I’d never see those people again. But I managed to find people who walked away with pieces of my heart. Leaving those communities was especially tough, because I knew there would be no going back. BYU students come from everywhere. We’d be spreading back out to the various corners of the world that we’d come from, or heading onward to new ones, and nothing would ever pull us all back to the same place at the same time again.
Then I moved to Oregon, ready to put down my roots in this corner of the lovely Northway forest. And I have. But it seems like the trees around me keep uprooting! As a 20-something, I naturally pursued friendships with other young singles, but young singles don’t seem to stay in one place very long. I made some great friends, but hunts for marriage and careers kept people moving. The unstable economy definitely hasn’t helped. Everybody is priced out of where they live.
I work in a middle school, and where I grew up, teachers stayed in the same positions FOREVER. My high school teachers are either retired, or still in the same classrooms. (Literally, the same rooms. Yearly room upheavals aren’t a universal truth!) According to Facebook, my middle school teachers still hang out with each other. But my own school district seems to be locked into this never-ending cycle of hire, fire, and reshuffle. I’ve always been so charmed and inspired by the teachers who taught together at Whitford for over 30 years. My generation won’t get that. There’s one person left who was hired at the same time I was, and while I love the idea of working together forever, I don’t actually expect it to last another 20 years. Instead, I keep watching people leave, whether it’s a full exit, or just to another corner of Portlandia.
Let’s not forget the giant chunks of my heart that live in the hands of my niece and nephew. Silly children, with the audacity to live with their parents in Omaha! So far away. Visits and Skype are good, but will never be good enough.
And then there are the hundreds of kids who’ve spent time in my classroom, becoming “my kids” for up to three years, and then they just leave. Again, the nerve and audacity! I don’t think they realize that they take a piece of my heart with them when they go off on their paths of growing up. But they do, and I feel their pains and joys no matter hold old they get.
It would be terrible to live a life where there weren’t loved ones to miss. Or if there were a limit on how many pieces I could divide my heart into.
But when I imagine what Heaven must be like, I imagine all those jigsaw pieces coming back together. All the people and places that I love, easy to reach out and touch any time that I want. My heart finally feeling whole and complete. Always room to grow, but never lacking. That’s the Heaven that I’m hoping for.
I thought that when I graduated from BYU, I was mostly done with driving through anything west of my Pacific Coast comfort zone…. I was wrong. When my brother married a Nebraska girl, it was decided that I’d be getting more familiar with the middle states.
This summer, we’re meeting them in the middle, renting a cabin just outside of Yellowstone. We arrived yesterday, and they’ll arrive later today.
So, these are thoughts that float through my head every time that I’m road tripping through the middle states:
This country is so big…and so much empty space! It seems like we could solve these urban crowding problems if we really wanted to.
Aww, log houses…. I miss my log home so much!! I grew up in the greatest house ever.
That pickup truck’s bumper sticker says “no on measure XYZ.” I don’t know what measure XYZ was, but I have a feeling I’d have voted yes.
I’m so judgey. I should probably be less judgey….
Look at that Native American reservation…. I should educate myself more about Native cultures.
There should be so many millions more Natives living all over the country now… <general sense of mourning that I don’t have words for>
Is it really necessary for my family to make an announcement about every single fast food place and chain restaurant they see?
There’s no way on earth I would have crossed any of this with a covered wagon or hand cart. Fuhgettaboutit. I’d definitely have stayed behind with Emma. Forget manifest destiny. (Yes, I’m mixing my Oregon Trail with my Mormon Trail.)
Hunting buffalo in the elementary school computer lab was fun.
Those rocks are beautiful. I don’t think of rocks as beautiful, but they are.
Seriously, the people out here think I’m the one who lives in a bubble?? I could spend my entire life in this town, and never encounter a fraction of the human experience I get to interact with daily in my normal life.
These ranches remind me of “Hey Dude” on 90s Nickelodeon. Those killer cacti…
There are people in this country who’ve never seen the ocean. How does a person survive life without breathing some ocean air now and then?
The Wyoming kids at BYU used to talk about some music group called the Bar J Wranglers. I wonder if they’re still a thing.
“Oh, Ms. Napper, my country is very good. In my city, there is water we can drink. And there are wires that carry electricity to the houses!”
<unsure what I was expecting, but it wasn’t that!>
“But I always dreamed about someday coming to America… And now I am here!!”
One of the cool parts of being an ESL teacher is getting to welcome new families to the United States. Being part of the unofficial welcome wagon.
I’ve been able to listen to kids say their very first complete sentence in English. Then later, an entire story. I’ve sat next to them while they used a computer for the first time. I’ve introduced them to April Fools pranks. I’ve hosted their first viewing of the Wizard of Oz. I’ve taught them the gist of baseball. (One of the sportsiest things I’ve ever done!)
Some of the firsts are less fun…. I’ve helped brand new arrivals get through their first lockdown-drill-in-case-there’s-ever-a-shooting-here-at-school. I’ve reassured kids freaking out about their first experience with standardized testing. I’ve helped them grapple with being called a terrorist for the first time.
With all the time I’ve spent introducing kids to their new country and culture, you’d think I would have found an answer to my own existential America question a long time ago. But, I didn’t. I just kept wondering.
My question is about the phrase “proud to be an American.” What does it even mean? Am I proud to be an American? What does it mean if I am? What does it mean if I’m not?
I’ve always been grateful to be born and raised in America. I know that’s given me a lot of privileges and opportunities that I wouldn’t necessarily have in other places. I’ve appreciated the contributions of everyone who came before me in American history and made the country what it is–including soldiers, yes, but also scientists, lawyers, political leaders, activists, artists, etc, etc!
But that’s gratitude.That’s different from pride, right? I take pride in my accomplishments. I’m proud of things I’ve achieved, and work I’ve done, and anything that I’ve given my best effort… but being an American? I was born into that. It was happenstance. I’ve had a hard time wrapping my mind around the idea of being proud of a privilege that was just handed to me without doing anything to deserve it.
This year, though, I think I’ve started to understand. Like the fish that doesn’t understand “wet” until it leaves the water, now that I’ve lost my pride in being an American, I’m beginning to see what I once had.
This year my kids studied “The New Colossus,” the poem found at the Statue of Liberty. I know we’ve all heard the “send me your tired, your poor, your huddled masses…” lines a million times. As we should–they’re beautiful and speak to my soul. But what about this part, describing the statue?
“A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world wide-welcome…”
For many around the world, America has been a shining beacon in the darkness. Whether we truly deserve the role or not, we’ve given hope to struggling souls. Like the sweet child (now an adult) I quoted at the top of this post, growing up with the dream of coming to America, where opportunities and a future would open up for her. We’ve offered a home to all kinds of “exiles.” We’ve offered the world the American Dream, the idea that a person can work hard and improve their individual circumstances. We’ve offered the American Experiment, the idea that democracy works and we can govern ourselves (kinda). These things might be more of a reality for some and more of a myth for others, but even just the ideals had power in their own right.
America has stood as a beacon of hope on the world stage. And I have taken pride in being a tiny little particle of that light. It was a worthy, ongoing cause, and I believed in its inherent good. I was proud to help keep it moving forward.
I was proud to be part of a nation that proclaimed and at least attempted to live by values closely matching my own. Freedom. Equality. Equity. Unity. Humanitarianism. I embraced these and many other American values, and could hold my head high under a flag that represented my own beliefs.
I would even say I was proud of generally using my freedoms responsibly. To better myself and serve others, without stepping on others’ freedoms. Having the privileges of being born an American doesn’t make me special, but what I do with those privileges does reflect my character. Without consciously realizing it, I took some pride in that.
So here I am, finally working out my definition of being “proud to be an American,” a little too late to enjoy it.
Now I just feel ashamed of America, of what we’ve done to it.
Maybe it was inevitable. Maybe all that American pride was always misplaced. Our country was founded on genocide and built with slavery. We never repented of those sins; we just continued morphing them into different means of the same oppression. We also have never properly valued education, preferring to raise a population in blissful, unquestioning ignorance to the world around us. So, really, how long could we keep convincing anyone that we’re the good guys?
Still, right or wrong, I always believed we were riding the slow train of progress towards “liberty and justice for all.” There’s no reason to believe that’s true now. We’re facing the opposite direction, and picking up speed.
Instead of Lady Liberty shining her beacon of hope for the world to see, she’s giving the world the middle finger. With the entire world mad at us, I’m just praying they find a way to punish us and save the world from our fascist leadership, without actual warfare. (I imagine that same prayer has been coming out of the Middle East for a long time, though, and that’s never stopped us, so…I realize I’m asking for a miracle that defies karma.)
Our freedom is being pulled out from under us so fast that it makes the head spin.
Endless attacks on legitimate news sources are quickly limiting our freedom of the press, which in turn limits our freedom of speech. #fascism101
If the attempts to defund Medicaid succeed, then I completely lose my freedom. The Supreme Court didn’t decide that I have a right to live freely in the community until 1999. If that is taken away again so soon, how many generations do you think it’ll take to get it back?
With it so unsafe to be Muslim in America, freedom of religion is little more than lip service. The irony being that religious freedom is most intensely threatened by the religious. Our least religious president in history has tapped into the most bigoted and intolerant of Christians’ hearts, and is fueling their hate and fear to attack another religion… All eastern religions, to some extent. These aren’t people who can tell the difference between a Muslim, a Hindu, and a Sikh.
Remember the lies told about how we aren’t targeting all immigrants for deportation, just serious criminals? Tell that to the families that are being ripped apart over the crime of driving a car, the crime of being a student, or the crime of dropping a child off at school. Here in the United States, they remain “huddled masses yearning to breathe free.”
The same surveillance technology that is being used to target immigrants, is being used to monitor all of us. Any sense of privacy we enjoy, is a delusion. There’s no freedom from Big Brother.
The administration’s tax plan will further widen the gap between those economically on top, and the rest of us. That limits all of our freedom as individuals, and threatens our nation as a whole.
Brutal attacks on our education system promote widespread ignorance in our people. It’s much easier to manipulate, control, and exploit an uneducated populace. When people can’t even see their freedom being taken away, they don’t fight back.
Who do we blame for this shameful failure to live our American values? Do we blame Trump? Do we blame the corrupt party leaders that are pulling his puppet strings? Do we blame Russia? Yes, of course, we blame them all. But if democracy is working at all, then we have to mostly blame ourselves. We did this. The one American value that I’ve never been able to get behind is the heavy focus on individualism. Maybe that’s what got us here. So busy focusing on ourselves, we forgot to take care of our country.
Happy birthday, America. I’m sorry we forgot to bring a present.
This week I wrapped up my tenth year teaching. As these things always do, those ten years feel like both ten minutes and ten lifetimes, all at once.
I think my ten-years-ago-self would be proud if she could see me now… I was so young and scared when I started teaching! My student teaching experience was mostly horrific. (Except for, tellingly, the ESL part… Thanks, Glori!) By the time I earned my teaching degree, I wasn’t sure I wanted it anymore. I really didn’t know if I had what it takes to be a teacher. I knew I lacked a lot of skills, and wasn’t sure my best efforts would be enough to pick them up. But what else do you do with a brand new teaching degree? Especially when the last two years of your education was paid for with a grant, contingent on your agreement to teach for at least four years? So I got myself a teaching job…
I thank God regularly that I landed at Whitford! I did have a LOT of growing to do as a teacher, but in its wacky way, Whitford gave me what I needed. I spent my first year in the cave we call C15, lacking both windows and walls, and I can’t imagine a better place for my first year. I shared very tight quarters with Betsy and Jake, and spent my time soaking up as much mentoring and wisdom as I could squeeze out of them. I made a shameless nuisance of myself by asking a million questions a day, but probably learned the most from just watching them teach and interact with kids. We also managed to have SO MUCH FUN all of the time. I don’t think there’s ever been a team of teachers at Whitford that has more FUN at work than we did! Thank goodness I learned quickly that teaching is supposed to be fun. It’s one of the easiest barometers to measure how my classes are going. As long as I’m having fun, something must be going right. 🙂
The other best possible thing for my professional development happened that year–the equity team was born. I didn’t know why I was going to that very first meeting of the equity team; I mostly just went because Betsy told me to. (And truly, “because Betsy said so” is reason enough to do things.:)) Then I kept going because I realized how much I had to learn. I talked as little as possible during those first few years of meetings. I was just soaking it in and thinking deeply. I learned to see and hear more clearly. I found the courage to engage in hard conversations. I became the teacher that my kids needed me to be–one who doesn’t pretend to have all the answers, but can help them navigate the complexities of race, culture, marginalization, etc. I learned how to make my classroom a safe space, and myself a safe person. I’ll forever be refining those traits and skills, but I’m so grateful that I started my career in that ideal learning space. And with all the things that have come and gone in ten years, I’m grateful the equity team still stands! I’ve needed that group of people more than ever this year.
That first year, the 6th grade classes were the highlight to my day. They were new and lost and scared and hopeful, just like me! We grew up at Whitford together. By the time they were in 8th grade, our third year together, they’d claimed such a gigantic place in my heart! It wasn’t the exact same group of kids of course–plenty had moved in and out during those three years. But it still felt like a sweet little ELD family, and I truly enjoyed being with them every day. I remember that last day of school, year three, crying my eyes out. It’s always hard to say goodbye at the end of the year, particularly to the 8th graders. But that year, I wondered if I would ever love another class as much as that one. They were my first group that I’d spent three years with. Did that make them irreplaceably special? Were they just a uniquely amazing group of kids? How often would I get a group of kids I enjoyed that much? Would I be disappointed in future years? Would it make me a bad teacher if I had favorite classes? The questions all seem silly, but I was legitimately (and secretly) concerned!
I don’t worry about those things anymore. It turns out that learning how to teach, meant learning how to love. I don’t remember that being covered in teacher school! But I’ve found that the kind of love required to do what I do, isn’t simple, easy, rainbows-and-butterflies. Instead, it requires me to stretch in ways younger-me couldn’t have dreamed of. I know that I’ve been described before with words like tender-hearted, soft, sensitive… and those words usually seem to carry a connotation of weakness. But now I know that I’m all of those things, and I’m strong. Because stretching my heart to all the places my kids take it, requires incredible strength. I’ve found that my own capacity to love is much bigger than I imagined.
I’ve learned to love kids who come from completely different worlds than me.
I’ve learned to read the most challenging behaviors as a kid asking to be loved, even if they don’t know that’s what they’re asking for.
I’ve learned to be generous with my love–if there are strings attached, then it isn’t love, it’s something else.
I’ve learned that love demands vulnerability.
I’ve learned to try a million different ways of sharing love, until I hit on the one that a particular kid is able to receive.
I’ve learned that love usually requires investing some time. And there’s no better investment.
I’ve learned that love can be transformative.
I’ve learned that love doesn’t always lead to the hoped for transformation. But I think that even then, it still matters. I hope it does.
I’ve learned to love loudly. Sometimes I have to get in someone’s face.
I’ve learned to love quietly. Sometimes physical presence is the only gift I can offer.
I’ve learned to let God tell me how to love. He knows what the kids need better than I do.
I’ve learned that kids test your love. They test boundaries, they test rules, and they test love. I’m getting better at recognizing those tests when they’re put in front of me.
I’ve learned that kids will usually let me retake the test if I don’t pass it the first time. It’s ok to revisit a situation and admit that I didn’t handle it the way I should have.
I’ve learned to love with laughter.
I’ve learned to love fiercely.
I’ve learned to love stubbornly.
I’ve learned to love patiently.
I’ve learned that discipline and love work a hundred times better together.
Looking back, my first ten years of learning to teach more effectively, were all about learning how to love better. It was right there under the surface all along, but this year got me thinking more intentionally and deeply about this love stuff. A student who survived a great deal of childhood trauma and missed out on attaching to a parent when he was young, straight up asked me “What is love?” I feel like we both learned a lot as we explored that question through the rest of the year…. At first, I felt so inadequate to help him navigate something so profound and so fundamental. I still feel inadequate. But we don’t take on these challenges because we’re ready for them. We take them on because we’re there. And because love.
I can (and will!) spend days telling you about the problems in my profession. Mostly, it would fall under three umbrellas–the lack of time, money, and respect. And I don’t want to downplay any of those issues, because they’re real, they’re driving away incredibly talented teachers, and they’re hurting our kids.
I badly want to see improvement in all of those areas, because the truth is, I wouldn’t rather be doing anything but teaching. It’s pretty uniquely wonderful that when I go to work every day, I get to spend time with people I love. Plenty of people work with people they like, people they enjoy, people they appreciate. But I wonder how common it is to spend your workday surrounded by people you love? I’m lucky to have amazing colleagues that I count among my nearest and dearest. But even if every one of them went away and were replaced by a horrible monster, I’d still have my kids. And after ten years, I’m confident that there’s no such thing as a class I can’t love.
This is where I’d like to stop writing. I’d like to wrap up year ten with a neat little bow of warm fuzzies. But, unfortunately, I started teaching in 2007, which means I hit year ten in 2017. And nothing is simple or sweet in 2017. As I closed out my teaching year, Republicans revealed their latest plan to get rid of Medicaid. They’ve been coming up with these schemes since before I was born, of course. But they’ve never been more set up to succeed than they are right now. In preparation for federal cuts, plenty of states are already cutting off people like me from services. If that happens to me, I literally don’t have a way to get out of bed and into my wheelchair in the morning. My greatest fear–being locked up in some care facility–could easily become my reality. It could be coming sooner than later. And then I won’t get to teach anymore.
I know a lot of incredible educators who are finishing a very rough year and asking themselves, “Can I keep teaching? Can I really keep doing this?” And a part of me is wondering the same. But, unfortunately, I’m more worried about, “What if I don’t get to keep teaching? What if I’m not allowed? Then what?”
“Kristine, you were in my dream last night! And it was the craziest thing, you’ll never guess…..”
I silently finish their sentence, “You were walking!” But maybe just this once, it’ll be anything else..?
“…You were walking!”
As predictable as the sunrise. I can’t tell you how many times I’ve had this conversation.
I know people can’t really control what they dream about. But why does everyone seem to have these Kristine walking dreams? And does it surprise people that I never have that dream? That everyone has it but me? I have frequent anxiety dreams about my chair breaking down. But unless the chair plays a key role in the dream, I’m not actually aware of whether or not it’s there. I assume it is, because why wouldn’t it be? (I also assume my elbows and all ten toes are there, although I never stop to check.) Just like in real life, if the focus of my dream is interacting with the people and things around me, I’m not paying much attention to how I’m getting around. Who puts that much conscious thought into how their body is moving through space?
A well-meaning man came up to me at church this weekend, put his hand on my shoulder, and asked, “When are you getting out of that wheelchair?”
I was taken aback. “Not any time soon….” I sputtered.
“Well we sure would like to see you get out of it.”
Speechless. I was completely speechless. (Also–who was this “we”??) My instinct from childhood was to smile and pretend that was a kind, thoughtful thing to say. But I’m done with rewarding people’s ignorance, so I didn’t do that. My worn-out-teacher-in-May instinct was to snark and snap and tell him exactly what I thought. But I don’t want to be rude to a well-meaning old man at church, so I didn’t do that either. Instead I just looked confused and didn’t say anything. Eventually he walked away.
(If I’d let the snappy voice talk, it would have said, “Are you wishing me dead?? Because I’m not leaving this chair until I die. And I have a lot more living I’d like to do first. Leave me alone.”)
And one more story…
A couple months ago, I might have had a minor emotional meltdown at church… It was the same weekend that I wrote this post, so there’s a kinda-sorta idea of what was going on in my head at the time. Then the third hour lesson just hit all my buttons, and once I started crying, the floodgates were open and I couldn’t stop. I pretty much bawled my eyes out for 45 solid minutes in a room full of women. And I’m not a cute crier, so by the time the class ended, I was a red, puffy, snotty mess, thanking the heavens for waterproof mascara.
That day again confirmed my suspicions that I have a prickly, defensive, off-putting aura, because as I sat there after church, sniffling and trying to get it together, the room of ladies all filed out without saying a word to me. Nobody asked me if I was ok. Nobody offered to listen if I wanted to talk. No hugs or pats on the back. Nada. (Not the first time this has happened to me. There are some people who can cry, and the whole world falls over themselves to offer comfort and love. But for some reason, when I cry, people tend to back away and just give me space. Whether or not I want it.)
Except for one person. When the room was nearly empty, one very nice, older lady came and sat next to me. For a while she just sat there with that “I want to say something, but I don’t know what to say” look on her face. (We’ve all been there.) That was fine–very much appreciated, actually. Then she started talking, and stumbled through some comment like, “I just wish you didn’t have to be in that chair…” I don’t remember her exact words, but it was something like that. To her credit, she immediately recognized how awkward her comment was, apologized for not knowing what to say, patted me on the back, and went on her way. I didn’t even resent her weird comment, because hey, at least she tried. I appreciated one person caring enough to try.
It was revealing, though. Is that why people back away when they see me being emotional? Do they just assume I’m crying about being in a wheelchair? And they don’t know how to deal with that, so they’d rather not? That’s such a weird thing to assume! I was upset about a lot of different things that weekend, but none of them were related to my disability. As if I were a one-dimensional person, and that was the only thing I thought about?
Can we all please accept that Kristine uses a wheelchair, and just be ok with it? Stop trying to wish it away. If I want to wish it away myself, I can–I’ve earned that right. I usually don’t, though. There are so many bigger and better things to spend my wishes on. But nobody else gets to make that wish. It’s everyone else’s job to just love and accept me for who I am. I’m sorry that’s apparently so hard to do, but keep trying. If I can learn to be ok with me, then you can too.
Here, I’ll even help you get started. Think of something you like about me. Anything at all. You’re here, reading my blog, so I’m going to assume there’s at least one thing you find mildly likable about me…. Whatever that thing is, if I weren’t disabled, that thing wouldn’t be the same. I’d be an entirely different person. My disability has influenced every single experience, every relationship, every opportunity, every challenge, every everything, since the day I was born. Directly or indirectly, it’s woven into the fabric of everything that I am. And I don’t want to be someone else. I have my flaws and my “opportunities for growth,” but that’s ok. I’m good with me.
I’m really tired, though, of having to work so hard to help other people be good with me. Yes, I know you grew up in an ableist world, not even aware that ableist was a word, and my disability makes you more uncomfortable than you’re willing to admit. I get it, but that’s not my fault. It’s not my job to take your hand and be your disability acceptance coach. I’m busy living my own life, which both does and doesn’t revolve around my disability. If you want to be part of my life, you need to be ok with that. All of it. You need to be ok with talking about disability, and with talking about things other than my disability. One without the other is weird.
Ask questions. I have answers, stories, and opinions, and I’ll probably tell them to you. But don’t project your feelings and assumptions onto me. Nobody benefits from that.