The heartwarming love story of this woman and her quadriplegic husband is a must-read.

"How do you bear it? That must be devastating," a colleague said. I'd mentioned that my husband is quadriplegic.

With a familiar tightness in my chest, I answer the same tired question: "It's not. We do just fine." "He lived alone long before I met him," I wanted to say, "and he's a theater professor" — and lots of things that I knew would only sound defensive.

The coworker read my near silence as an admission (of what, I'm never sure. Sexlessness? Solitude? Nights spent gripping a bottle of gin?) and said earnestly, "I'm so sorry you have to go through that every day. I can't even imagine."


I watched the nightmare in his eyes retreat, replaced by a glaze of pity, a softness that I suppose he felt was earned by my hard life. "It's honestly no big deal," I tried again. Too late. The glaze had acquired a sheen.

The politics of disclosure are tricky, and once again I felt I'd done my partner a disservice, however slight.

Though my now former coworker likely no longer thinks of me, he might think of my husband occasionally, his token access point to the homogenized community that is wheelchair users and the pity he thinks he should feel for them and those who love them. From now on, he'll view us and people like us as tragedies — all because I didn't work hard enough to convince him otherwise.

All photos via Laura Dorwart, used with permission.

I didn't tell him about the day my husband and I met to study together at 10 a.m. for grad school exams.

I didn't tell him how coffee turned to whiskey, which turned to singing in a round as he drove me home, or about his first gift to me after two weeks of dating. I'd told him jumping eased my anxiety; he showed up to my door the next week with an indoor trampoline.

Now that I've disclosed his quadriplegia to yet another stranger, my husband is no longer afforded idiosyncrasies or individual traits, all of which he has. He's someone who writes me love letters and teaches improv and is very Virgo about our towel situation and who, unlike me, is quiet and unassuming in grad seminars. Without knowing all this, would my colleague go home and express gratitude to his wife with a "thank God we're not them" subtext?

I knew something of what my colleague assumed because it's what many assume.

I must be up nights, washing the last of the dishes alone, filled with longing that my husband's spinal cord will awaken from its tragic slumber. Or maybe they imagine I'm his "caretaker," a loaded word.

The truth? I haven't cooked one meal this month (too many deadlines), and my husband usually stays up with the baby (I'm a morning person).

He's spent far more time serving as my lay psychiatrist and priest-behind-confessional-screen than I've spent on any of his medical care. He sings me to sleep. I am usually a nervous wreck about everything except his paralysis. Unlike my symptoms of anxiety and depression, his disability is a constant, the only thing that isn't a what-if.

Still, being the ostensibly able-bodied partner to a physically disabled person comes with its fair share of emotional labor.

Emotional labor, in many cases, involves the management of feelings, both your own and others'. At restaurants, hostesses' eyes fly open, anxious, before they whisper to each other — where are they supposed to go? Folks trapping us in the wheelchair van by parking in a loading zone look sheepish at best or sometimes defiant: "What's so special about you?"

Is the usher going to know where to seat us? Will we be turned away? Will the doctor actually speak to him or will she look over his head and into my eyes instead? It's watching someone else be hurt and disappointed — not by an internal source, like my depression, but by others, by buildings even — over and over again and being powerless to do anything about it, unable to unwind the tension that coils in someone's back when they are expected, day after day, to prove they are not a burden.

It's keeping the strained smile on your face when he plans an anniversary dinner at a restaurant that advertises itself as accessible, a claim that proves false.

You find out that "accessible" means that some people get helped up the steps to the only entrance. The manager offers to have a busboy carry him. "My chair weighs 300 pounds," he says, incredulous. The manager shrugs, as if to say, "So? What did you expect?"

He's now supposed to spend the night apologizing for taking up space, and you are supposed to pretend you don't notice. He defends himself well, as always, but his shoulders slump and his eyes shine with hurt, even over cocktails elsewhere after you leave. You want to scream at someone or at least write a strongly worded letter, but there is no one to write to.

It's being afraid not of a disability itself but of everyone else's fear and discomfort, which is displaced onto you as the assumed caregiver. "Don't look at me like that," I want to say to the pitier. "Just build a damn ramp."

Our reality is so far from the assumptions of others. The wheelchair has been integral to so many of my memories of care I have taken rather than given.

Rides on his wheelchair put our daughter to sleep, and when I was pregnant, I rode on his lap to work. During a depressive episode or a panic attack, I've heard the whir of wheels (footsteps, really) in the hallway and felt my breathing slow because he was home.

This is not part of the wheelchair story that strangers and Hollywood and breathless romances want to tell.

I wrote a story about my depression and post-traumatic stress disorder against the backdrop of a ghost town in a desert we'd visited, and I shared it with a creative writing workshop. I included one line about his paralysis. "Is his body supposed to be the desert?" one of the other students asked. "Because it's empty now, since the injury?" Another says, "It's a ghost town. Is he the real ghost?"

Being in love with someone who's quadriplegic is something like loving a ghost, but not in the way people might think. He is often invisible, and if seen, there is just one thing about him that most people seem to notice.

A story with a ghost in it is a ghost story first and foremost, not a story about sports or romance or a family conflict. Similarly, the wheelchair functions as the focus of every story we can construct. Even though you don't want it to, the wheelchair becomes the protagonist, the antagonist, and everything in between.

When I lie awake at night, the honest-to-god truth is that I don't fantasize about miracle cures and redemption songs. I dream of ramps.

Ramps leading up to showers and houses and waterfalls, to haunted hayrides and carriages and job interviews and Capitol Hill. And level ground that fulfills its rhetorical purpose by keeping everyone on the same plane. In my dreams, words become divorced from their meanings; "rustic" and "quaint" become extricable from "tiny" and "crowded," and "winding" and "exclusive" no longer mean a narrow stairway to an underground speakeasy. Restaurant hostesses and flight attendants are not afraid. Doctors listen.

In my dreams, I don't watch him walk. I watch him stop being hurt.

This story originally appeared on Catapult and is reprinted here with permission.

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There's a lot to be said for paving your own path, and Tyler Perry said it all when he accepted the Ultimate Icon Award at the BET Awards. Perry received his award for making movies that were, Perry feels, subconsciously about "wanting her [his mother] to know that she was worthy—wanting black women to know you're worthy, you're special, you're powerful, you're amazing." Perry's inspirational acceptance speech has enough motivation to get you going for years. He spoke to the power of helping others while simultaneously carving out your own destiny.

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Inclusivity

Anyone who's done yard work on a hot day can tell you that it can be just as good of a workout as playing a team sport.

You're down on your knees pulling weeds, up on a ladder lopping off errant tree branches, and pushing a heavy lawnmower that never seems to start on the first try.

Unfortunately, because lawn work is so physically intense and not everyone can afford a gardner, the elderly and disabled sometimes have to let their lawns and backyards grow wild.

An alternative learning center in Dubuque, Iowa is helping its kids stay physically fit while helping out their community with a new program that gives them high school PE credit for doing yard work for the elderly and disabled.

The Alternative Learning Center is for high school juniors and seniors who are at risk of dropping out of school.
As part of the program, the teens visit homes of the elderly and disabled and help out by raking leaves, pulling weeds, cutting grass, and cleaning gutters.



Teacher Tim Hitzler created the program because it helps the students get involved in the community while helping those who need it most.

"The students aren't typically too excited at the beginning but once they get involved and start doing the yard work they become more motivated," Hitzler told KWWL. "What they really like is A: helping people. They really like giving back to people and meeting the person."

Nick Colsn, a 17-year-old student at the learning center, told NPR that the program allows him to meet people he wouldn't have otherwise. "I'm more of like go-to-school-go-to-work-home-repeat kind of guy," he said. "So to me, I probably would not have met any of these people."

The end-of-year program has been so successful, Hitzler hopes to expand it next year. "You know, in education, a lot of times, there's so many different gimmicks and curriculum packages you can buy and things like that," he told NPR. "And something like this all you need is a few garden tools. You know, I mean, it just makes sense. It's so simple. And it works."

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If you're a white supremacist, I imagine drinking beer (or any other alcoholic beverage) is a nice way to relax and tune out the fact that you're a terrible person who's helping set human progress back at a rate the bubonic plague would be proud of. But for some self-professed white supremacists, it wasn't quite so easy on a June weekend in Germany.

According to Newsweek, the hundreds of neo-nazis who flocked to the "Shield and Sword Festival" in Ostritz found themselves uncomfortably dry when a court imposed a liquor ban at their gathering of hateful bigots who also like to listen to awful music together. The ban's aim was to prevent any violence that might erupt (you know it would...) and the police confiscated more than a thousand gallons of alcohol from those attending the weekend-long event. They even posted pictures on Twitter of the alcohol they'd removed from participants.



But that's only half the story.

Residents of the town of Ostritz, who've had to deal with the bigots before (they threw the same festival last year on Hitler's birthday), knew that the ban wouldn't stop the festival-goers from trying to obtain more alcohol while in town. So the townspeople got together a week before the festival and devised a plan which would truly make the white supremacists focus on how terrible neo-nazi music is: They bought up the entire town's beer supply.

"We wanted to dry the Nazis out," Georg Salditt, a local activist, told reporters. "We thought, if an alcohol ban is coming, we'll empty the shelves at the Penny [supermarket]."

"For us it's important to send the message from Ostritz that there are people here who won't tolerate this, who say 'we have different values here, we're setting an example..." an unidentified local woman told ZDF Television.

At the same time the festival was going on, residents also staged two counter-protests and put on a "Peace Festival" to drive home the point that bigotry wasn't welcome. If the festival is held in the same town again next year, ticket-buyers should be aware that Ostritz isn't playing around when it says that white supremacists aren't welcome.

There's some good news, too: Aside from the fact that residents aren't afraid to send the message that they're intolerant of intolerance, attendance to the far-right music festival has drastically decreased in the past year. In 2018, 1,200 people attended, according to the BBC. This year? Approximately 500-600. Here's hoping the festival won't have a return engagement next year.

Culture

I sent both of my children on a bus on Tuesday. I knew where they were going.

The morning started rainy, buggy, and too early. To be fair, it always feels too early.

My husband and I waved from across the street as the buses pulled away, our kids, along with a hundred or so others, behind tinted glass. We waved like we were excited. Our son was likely not looking. Our daughter may have been, but she also could have not been paying attention until the bus started into motion. We won't know for sure if she saw us waving until she returns.

Returns.

Every day when I leave the house, I expect to return.

That's the default.

It's so much the default that realizing it is actually stunning. We run our lives as though anything else other than what's in our head, our routine, our privilege, is what will take place. There's that little truism that a worrier shines like a pebble in the hand: you're more likely to die in a car crash than a plane crash. Yet we are much more likely to be worried about flying because it is out of our routine. Being out of your routine awakens you to the precariousness we completely shut out in our day-to-day lives.

I put my children on a bus. My oldest will be gone four weeks, my youngest, two.

What should be normal: sending your kids to sleep away camp. What feels wholly unnatural: sending your Jewish kids to a Jewish sleep away camp in the world we're living in now. Even writing those words: JEWISH SLEEP AWAY CAMP make my fingers seize at the knuckles. I don't want you to know there are such things as Jewish sleep away camps. Even having others know that they exist feels like a danger.

I'm used to my feelings and my instincts seeming like hyperbole to others. I'm emotional. I'm tuned in. I'm hyperreactive. I have a hair trigger. I have anxiety and depression.

I also come from a genetic and cultural history of people who ended up in this country because we were hunted and pursued and needed to escape. Over and over and over again. The cells that have come to build the tissues and structures of my body and my brain have been organized by UNSAFETY.

In "normal" suburban upper-class life, this can be a huge detriment. A handicap. It can manifest in the most unhelpful and frankly, startlingly blind ways. I've spent so much of my life reacting and feeling and then trying to understand what makes me tick. I've spent so much time learning to train and control and ignore and channel.

I wasn't made for easy times. I was made for survival. I was made, like an animal, to intuit danger and get the hell out, fast. I was made in the image of fight or flight. I do both better than most people. It's not something I brag about, because it doesn't feel like a good thing most of the time.

I put my kids on a bus to Jewish sleep away camp. Because when my husband and I got married (I'm Jewish, he's not), our pact was this: if our children live in a world where historically they could be targeted and threatened because of their Jewishness (regardless of their actual observance of religion or customs), they deserved to know that being a Jew is not negative. We should give them every opportunity to be proud and happy about their Jewishness. Their belonging should help them to feel good about themselves and the world. It should help them seek connection and understanding of the human condition. They should know songs. They should sing full-throated. They should feel comfort in our traditions when they are useful to them, but never feel threatened or unnecessarily constrained by them.

Research funded by Jewish institutions and communities suggests that the number one way to help ground kids in their Jewish identity is to send them to Jewish sleep away camp. It's the glue.

And yet.

I put my kids on a bus to Jewish sleep away camp at a time when our government is putting migrant children into concentration camps.

I bought all the supplies on the list. I washed and labeled and sorted and packed. I zipped up those bags to accompany my children. And then I dropped my children off and couldn't see if they were waving back as the buses drove away.

Of course, the camp I'm sending them to has a stellar reputation. Every day they post updates on a special web site, along with hundreds of pictures of the kids in action. I send emails to the kids which are printed out and given to them. I send packages with stickers and trading cards and all sorts of goofiness so that they know they are loved.

Migrants from central America have made their way to our border with just what they could carry. (My children's bags were so heavy that neither of them could carry them. Likely at least 1/4 of what I sent will come back unused or untouched.) Migrants are following the rules of asylum seeking. They are fleeing violence and intimidation and abuse far greater than I will allow myself to imagine. They are separated from their children by a government that has no business doing so.

I, an upper-class white woman, expect my voice to be heard. I expect to be able to vote and call and hold my elected officials accountable. I know what to say to get my point across. I've given money to candidates and I know how to threaten that support in the future. I also have the privilege of time and energy with which to do it. My underlying expectation is that there are very few problems that I don't have some redress for.

Asylum-seekers, in good faith, and following the rules, have nothing left to lose. They are coming here seeking something less life-threatening than what they're fleeing. They're seeking some good will. Or, at the very least, safety. Or relative safety.

I put my children on a bus to Jewish sleep away camp knowing that in my daughter's cabin of 8 girls, there are 4 young adult counselors who are there to make sure that she's safe, happy, and her needs are being met.

I also know that last year, an asshole white supremacist antisemite decided to go to a synagogue on shabbat, the Jewish sabbath, and turn it into a bloodbath. Well before that ever happened, well before the era of mass shootings and Columbine, Jewish institutions like synagogues and preschools and JCCs have needed extra surveillance. We've had police guard our religious services and social gatherings. Even (and perhaps especially) seeking out Jewish belonging, Jewish joy, has always been a reckoning with danger and threat.

After I sent my children on that bus—the one I knew where it was going—the one where I'd shoveled their overpacked duffle bags into the bowels of the bus—I came home to a house strewn with the remnants from packing. Laundry bins with unneeded t-shirts and shorts and single socks. The cat—he normally comes to greet me when he hears the garage door open—was nowhere to be seen. I called for him. He still did not come. I came upstairs and looked in my son's room. No cat. I looked in my daughter's room—with its orange and pink somewhat darkened by the rainy skies—and there he was, tucked into a furry circle in an eddy of her duvet. I laid down next to him and lost control. The control I never really had.

Twitter this week has erupted in a jagged back-and-forth between politicians and pundits and opinion-havers about whether or not it is appropriate to call the migrant detention centers run by ICE and our government "concentration camps." I, and most other Jews I follow and know, agree they should be called exactly what they are.

Non-Jews (and, to be fair, some Jews as well), like to tiptoe around the Holocaust and any words or imagery which may in any way encroach upon the historical accuracy or singular legacy of that horrible period. To a degree, I might agree when the comparisons are used flippantly or improperly.

But the legacy of the Holocaust, we are all reminded, is NEVER AGAIN. And NEVER AGAIN means that we don't wait until something worse happens. What's happening RIGHT NOW in the United States shares that DNA.

In the same way I understood or had an inkling in my bones that the election might go a way I didn't want it to, I know this same thing: we are not ok. This is not just the start. This is halfway down the road to the place where we lose not just perceived control, but real control. For all the current administration's lies and purposeful incapabilities, know this: the cruelty that comes out of the mouth of our president and those who continue to support him in the government and in the populace is not a lie. It is predictive. They're telling us in advance what they intend to do. And then they are doing it.

In a world where I still have the ability to put my daughter and son on a bus with all their toiletries and know that they will likely arrive at their destination, I also know that our government argued for the legal right to deny soap and toothbrushes to migrant children. When anyone's children are denied such basics—human basics—no one is safe.

I know it will sound like hyperbole. I know that those who so easily dismissed my concerns early on—before this administration even took office—will still attempt to dismiss my warnings now. But do so at your own peril.

I was not built for normal times. I was built for times like these. And I haven't been wrong yet.

This post originally appeared on Outside Voice. You can read it here.

Inclusivity