Stories I Never Heard

We're talking about disability again.

I love a good a coming-of-age story. So do many of you, given how our novelists and screenwriters tell them over and over.

Why do we love them? The coming face-to-face with things as they are, recognizing that we didn’t know so much about real life before, finding that things loom bigger and scarier and more complex than we imagined, that life looks more like a wilderness than a game of hopscotch? Maybe it all feels familiar and validating, I don’t know.

Perhaps we like them because they prepare us. Our lives and crises and romances may not fall out like our fictional heroes’ and heroines’ do, but at least we’ve rehearsed some options. Here’s how it could go, stories tell us. Our imaginations eat this up; our mental and emotional storehouses catalog all the stories we’ve heard to give shape and meaning to our lives and the lives playing out around us. 

But we haven’t rehearsed every story. Occasionally, some things seem new under the sun. 

Untold stories come to light when they happen to us. Life wraps us up in hair shirts of confusion and we stare into space thinking, this happens? How does it work? What does a person do here? What does it mean?

Then we have to live and move and have our being without guides, with nothing in our mental storehouses to help us see how it could or should go. That isn’t all bad, but it is hard. 

We love stories because we receive them as gifts for helping us navigate life and find delight or consolation or just survival. Without stories, we must find these on our own, and just maybe, we can offer them to someone else later.

Navigating life with a disability gives me many unfamiliar stories. I see few, very few, tales told where I could be the main character, where the drama fits how my life could be. As I’ve become an adult, I look back and see how pieces of life left me bewildered, and I slowly, surely, figured out survival, consolation, and delight.

I want to tell you five stories that I forged and that forged me back. I do not tell them to get them off my chest: I have done that already with people close to me. I tell them even less to make you feel bad for me or bad about yourself. I offer these as gifts, so you can understand, so you can see the world and the people around you more clearly, and if you live a similar story, so that you will have something more in your storehouse. 

Healthcare

Lots of lives start and end in hospitals, and disabled people also spend much time in the middle interacting with healthcare. Our health needs care in ways specific to us, and we and the people near us can feel like medicine puts a lens over our whole view of the world.

Because of this focus on the medical aspect of disability, disabled people face a strong pull to default into an adversarial relationship with our bodies. We wait for doctors to speak and mediate between us, our world, and our recalcitrant physicality. They tell us what is and isn’t possible, what we should and shouldn’t do, as if the doctor is the authority, the Wiseman, the guide.

In reality, healthcare workers practice medicine on bodies, but I inhabit my life. I inhabit this body. The doctor does not know or hold the task of my life; I do. I actually know and trust my body more than I know and trust this person. It isn’t me and my doctor against my body, it’s me and my body against the world, hopefully with the doctor’s help. He or she has expertise in physical health, and physical health makes up one aspect of whole humanity, and I get to treat our interactions accordingly. 

Garrett’s time in PA school has helped me see this. He is just a person; his classmates are just people. We’ve all shared baskets of rolls at Texas Road House and watched Rihanna’s Superbowl halftime show together. Yet their patients see them the way we all see healthcare providers: as little divinities with life and death in their hands. (Laugh nervous laughter.)

He and all his friends practice competent medicine and value their patients genuinely, from what I can tell. My point is, fallible people doing their best share their expertise and experience with you in a doctor’s office. They are just people who eat rolls, watch TV, and make a business of caring for bodies. Find good, trustworthy, knowledgeable people, and remember they are just people. If they aren’t, or they seem not to remember their humanity or yours, you can leave.

Dating & Marriage

Now I’ve read quite a lot on the topic of disabled dating, romance, sex, and marriage. Then, I knew absolutely nothing. I had seen and heard nothing; I imagined mainly the worst. I knew I had the same feelings and hopes and desires as other teenage and twenty-something women, but I knew I wasn’t other teenage and twenty-something women. I feared that others, men especially, saw an oddity, an object of pity, or at best, a friend. How could I expect otherwise when I had never—not once—seen a visibly disabled young person begin a romantic relationship in real life or books or TV? 

The only disabled romances I’d seen lived or described were of elderly couples loving each other through aging and of couples who fell in love non-disabled, and then one member becomes disabled through illness or accident. The accident constitutes a severe tragedy—the end of a life even though the person survived. If the non-disabled member leaves, it’s cruel, but ultimately understandable. They didn’t sign up for this. If they stay, they become a hero, an inspiration. 

For the longest time, imagining myself as an object of pity, I imagined any man who could love me as a sort of hero, a knight on a white horse.

Consider for a moment the vulnerable position into which that story puts disabled women: to regard attention from a man with gratitude verging on disbelief, to believe she needs saving borne of self-sacrifice on his part.

Hear me, disabled woman. You are not a burden, an object, a sacrifice, or a tragic twist of fate. You deserve love when no one’s looking, to seek what you want, to be valued and admired and respected. Never settle; don’t believe he is settling; notice the ones who think you should or he is.

I began an inter-abled relationship, and two and half years later, an inter-abled marriage. We were young and naive and it took much learning, mistake-making, and growing up, as all young marriages do. We encountered specifics unique to us, though—specifics I had not imagined and for which I was unprepared. There would be no hiking dates. I could not take random food service or retail jobs to make ends meet. I felt clueless and helpless in the face of many household chores. New friends met us with curiosity and sometimes confusion. He worked not to feel like the white knight, not to worry for me when I am alone. He had a young wife who often looked like a deer in the headlights. 

Yet, six years in, we have created an imperfect, sometimes glitchy, rather patchwork, always evolving, thing of beauty. 

Me & Him

In-Laws

We all know you marry your spouse’s family, and ideally, they also adopt you. I found my internalized ableism strong in meeting and joining my husband’s family. I was so eager to please and so concerned I wouldn’t. I could not imagine what it should look like to present myself to a family as a prospective spouse in all my disabled glory. In retrospect, I could’ve asked, but I was far too self-conscious. Were they prepared to meet me or blindsided? Would they be disappointed, worried, confused? Did I need to talk about it? A little or a lot? I resolved none of these questions. Failing to choose, I chose to wing it.

Once Garrett and I became serious, we encountered the matter of integrating into the family. I met extended family and re-experienced all of the above questions. I started participating in family traditions and favorite pastimes and routines. Oftentimes, I learned to sit on the sidelines with my feelings and watch while my in-laws played copious sportlike competition games and wrestled each other in their grandparents’ living room in search of a Christmas tree ornament shaped like a pickle. 

I balanced the desire to join in and belong with my need to make room for myself among a group of active, competitive, loud, adoring best friends. I admired so much about them, yet I felt a lot of stress sorting out how to fit in. I was very unused to—well, trying. I had often defaulted to protecting myself from discomfort rather than working through it, and I needed time to learn to open up about my needs and feelings. They could not have been more welcoming. It was rather like two partners who really want to make it work dancing a totally unfamiliar dance, and we probably stepped on each other’s toes. 

Six years in, my comfort and confidence have grown. I haven’t stress-cried on a holiday weekend in a while. Our understanding of each other has multiplied. It’s imperfect, and it’s possible to love and be loved and care and be cared for with a good amount of patience and conversation and hope. 

Employment

I always knew I couldn’t take just any job, so I focussed on academics. Books, I can do. But even for jobs I could reasonably perform, the process of applying, interviewing, and beginning felt so daunting. 

Where to even begin? Should I acknowledge disability on the application? Employers all claim not to discriminate, but can I be sure? What will they think seeing me approach an interview? What do I tell them up front? How do I balance confidence and self-protection? Does everyone assume I’m a pity hire? Am I a pity hire? Just how much help can I request?

There’s nothing like entering a job interview needing to sell yourself and also needing to convince the employer you’re worth caring for. Job seeking carries a strong sentiment that you need to offer to, provide for, and never need from. 

For a long time, I strategized to convince employers I would need no accommodation. I was quite self-sufficient. When that became unrealistic, I settled for convincing employers I am worth it. I am good enough at what I can do that you should adjust to what I can’t do or what I need. Reader, this is stressful and fuels perfectionism and imposter syndrome like nothing else. It does not make one better at one’s job; it gives one anxiety and depression. 

We subtly forget that human employers employ human employees, and to be human is to give and take, to need and provide. Perhaps society even incentivizes the forgetting. What better employee than a cog in a perfectly efficient machine, able to be swapped out at the first sign of weakness, actively suppressing their own needs to keep working?

But forget late-stage capitalism. Even apart from that, we resist acknowledging interdependence and likely haven’t even considered the benefit of a diversely-abled workforce. It takes creativity and determination and a high stress tolerance on a disabled person’s part to believe in our contribution to a workplace, despite prima facie inability, despite stereotypes about our capabilities.

When I began teaching on my college campus, six different people—students, professors, and administrators—assumed I was a student, not a professor, even though I dressed professionally, arrived early, and had classroom keys. Because I had sought out disabled voices in books and on social media and knew what to expect, it amused more than offended me. I know society doesn’t see a young woman in a wheelchair as the professor, and I rather liked shattering that assumption.

I also began seeking for the first time what I brought to the table because of being disabled, not what I needed. I intentionally noticed how approachable I was, how empowering having a disabled professor would be for disabled students, how patient I could be, and how I expected my students to be humans too. I knew the ins and outs of the accommodations office and got to help a student interact with them. 

Employers may not know these things, but you can. You can tell them, or you can just look forward to discovering them yourself and not feel the need to make up for anything.

Friendship

A line in my journal from before I began using mobility aids full-time reads, “Damn the human tendency to congregate while standing.” I didn’t look that up, I’ve just remembered it regularly since I wrote it and given myself mental high-fives. 

That entry chronicles how I struggled to get to know people because I literally felt stuck in one place so often; namely, wherever I found a chair. I couldn’t go stand with people to talk, and I feared I looked standoffish because I didn’t. 

But that problem assumes I went somewhere with people in the first place, which is itself a triumph. Going places requires much of me and/or whoever’s with me. It turns out, to make friends you must go somewhere to find people. That’s problem one. Problem two is moving past insecurities and the damned human tendency to congregate while standing. Problem three is if you do make friends, they may invite you to their house. 

Invitations seems like a win, and they are, but then you must contend with the inaccessibility of about 83% of houses. What do you do when you’re the only person in the room remembering your limits? How do you get to the place where you aren’t without making friends? How do you make friends when you’re the only person in the room remembering your limits?

I offer you the best I’ve found: You shake hands with exhaustion and awkwardness and remember it isn’t you. You let other people share the exhaustion and awkwardness. You get really good at looking up people’s front porches on Google Maps. You pretend it isn’t a problem a few times and show up at someone’s house only to run into four concrete steps. You learn that feeling safe gets to be important. You find a few accessible third spaces. You offer your house instead. You hope you get better at it in the future.

I found one bathroom at school where the mirror showed more than the top of my head. The sink didn’t work all semester.

Now for a speed round:

• Taking pictures sitting/using mobility aids with standing people

• Finding clothes that fit (Could clothing models sit, please?)

• Ordering food and drink, then taking it to tables at restaurants

• Finding and using bathrooms

• Interacting with kids

• Interacting with middle-aged men and their arsenals of insulting jokes

• Interacting with people who want to heal you with prayer

• Interacting with people who want to heal you with a special diet or supplement

• Exercise

• Travel

• Cooking

Want more?

That’s all for now. But say you wanted to come across more disability stories. Here are some favorite books and people I’ve found, a few years into looking. (Do I endorse them all whole heartedly? No, so don’t blame me when Nina gets sweary.) :

1. Don’t miss my first and second disability-related posts, and

2. The article I published with Plough a while back.

3. Plough’s entire quarterly covering disability.

4. A Disability History of the United States - Kim E. Nielsen

   1. It is what it sounds like.

5. Sitting Pretty - Rebekah Taussig

   1. Nonfiction, memoir-style stories from Rebekah’s life.

6. Places I’ve Taken My Body - Molly McCully Brown

   1. Essays Molly wrote about her work and travel. This is my most favorite, but not for the faint of heart.

7. Where You See Yourself - Claire Forrest

   1. The cutest YA novel with a wheelchair user as main character. I discovered this book serendipitously, just this week as I finished this post.

8. Everything Happens for a Reason (And Other Lies I’ve Loved) - Kate Bowler

   1. A bit different from the others as it centers Kate’s life amid a cancer diagnosis, but I found it relatable.

9. Instagrammers Nina Tame (@nina_tame), Rebekah Taussig (@sitting_pretty), Anna Sarol (@annasarol), and Jimmy Jan (@jimmy.jan)

10. I wish I could recommend good movies or TV but I have literally never encountered a disabled character/subplot in television that I would recommend. Please tell me if you think you have.