Call and (You Must) Respond: Disability and Sought-After Silence

Disabled people commonly report feeling silenced and marginalized within mainstream U.S. culture, in the media, education, and medicine. Disability activism is premised upon the notion of speaking up for ourselves about how we live and how often we are excluded, silenced, and placed outside of the largely unstated but consistently reinforced norms for bodily appearance and function.

Nancy Mairs, a poet and essayist who lived for many years with multiple sclerosis, claimed in her amazing essay, “Carnal Acts,” that “speaking out loud [about her body] is an antidote to shame.” I believe this with my whole heart and embrace it, even down to my vanity license plate.


But I also get weary of speaking to account for my embodied being. Sometimes I would rather embrace silence when it comes to my disability. Maybe folks could just talk about the weather instead of engaging in a running commentary about my bodily differences? But just typing that  makes me feel anxious; it’s just not nice to refuse to answer other people’s questions.

On reflection, I came up with four types of interactions in which my body prompts others to behave in ways that seem to necessitate a meaningful response from me, even if I do not wish to perform “disabled activist” in that moment.

First, I respond to satisfy others’ curiosity. I’m in Starbucks waiting for a friend. It’s a lovely morning, and I’m wearing khaki walking shorts and a lavender cotton shirt. A dark-haired man walks in with two little boys, probably about four and six years old. The boys stand in line wriggling and bouncing impatiently. One of them catches sight of my shiny titanium prosthesis and grabs the other boy by the hand, dragging him toward me.

“Hi!” I say brightly when they arrive at my table. The boys smile back but say nothing, staring openly with avid curiosity at my prosthetic leg. “Pretty cool, isn’t it?” I say. “My leg has a computer in it and sensors and lots of metal parts.” I lift my prosthesis up and point to the computerized knee joint. “This is the computer. It has a battery. I have to plug in and charge up every night, just like your iPad.”

The boys’ continue to stare silently. “Want to touch it?” I offer, using my hand to extend the lower portion of the prosthesis toward them. The older one looks me in the eye hopefully. “Go ahead,” I urge. He reaches one finger out to stroke the smooth, cool surface, then smiles. He gently pokes the hydraulic mechanism and I giggle. Their adult finally shows up with two large go cups. I smile at the man, and he smiles back, nodding in acknowledgment before herding the kids outside.

I wasn’t upset at the boys, nor I could I remain silent in response to their genuine interest. But their curiosity signaled (albeit unintentionally) the novelty of my cyborg body, reinforcing just how far outside of normal the kids considered me.

Second, I respond to others’ concerns that I have failed to appear sufficiently feminine. Often these sorts of comments are in the guise of benevolent attempts to “help” me. For example, early on after I returned to work following the amputation, one of my students, overcome by the appearance of my prosthesis, tearfully offered to have her sorority host a fundraising event to purchase me a new prosthesis that looked “like a real leg” (clearly lack of funds was the only scenario she could imagine). Similarly, at a holiday party, an acquaintance asked me why my insurance wouldn’t pay for a “full leg prosthesis.” I assured her that my prosthesis reflected state of the art technology. She pointed to my narrow metal ankle and insisted, “But it looks like that, not like skin.” I end up explaining that the flesh-colored foam stuff looks like a mannequin limb to me (especially on an above-knee prosthesis), and I prefer the sporty, mechanical look to the plastic-y one.

My inability to participate in some social customs also seems to prompt frequent explanation. At a friend’s dinner party, I twice declined wine before responding to the third offer by stating, “I can’t have any alcohol.” This led to a zillion questions about the medications I take for managing phantom limb pain, which don’t combine well with alcohol.

Finally, I find it difficult to maintain my silence rather than explaining when I have briefly and unwittingly passed as more able-bodied than I am by wearing long pants and controlling my limp, before then outing myself. One day I was walking and talking to a university colleague, with whom I am only slightly acquainted, when we approached a set of stairs. Still talking, he didn’t pause before bounding up the stairs while I tried to interrupt him, gesturing toward the elevator.

Of course, I don’t have to respond in any of these situations; I could refuse to answer. I know my reluctance to remain silent when questioned is socialized and influenced by my identity as a white, middle-class woman, for whom responsiveness to others’ requests is often a deeply ingrained behavior. The thought of being deliberately rude when questioned troubles me most of the time.

I want to claim silence as another form of potentially powerful disabled speech, to embrace the freedom to choose not to speak out loud as an antidote to shame but instead (sometimes) to allow my cyborg body to speak eloquently for itself, without shame or obligation to explain.



When the Universe Stops Bothering with Subtlety


I’ve had messages sent directly to me from Universe Headquarters before, but it’s been a long time since the Universe abandoned all subtlety and just whacked me upside the head to get me to listen.

Within the last few days, I had three things happen to me that reinforced the message that I need to slow down NOW. It wasn’t until I was trying to breathe through the third one that it occurred to me that perhaps I needed to pay more attention to the wisdom that was trying desperately to reach me.

Message #1: First the air pump on the socket of my prosthetic leg—which creates a suction to keep my prosthesis attached to the rest of me—stopped working properly. It declined slightly in efficiency and then rapidly, refusing to form a solid seal. Thankfully, my awesome prosthetist—shout out to the outstanding Charlie and fabulous Jen at Anchor Prosthetics by the Bay—was able to squeeze me in for an urgent appointment and loan me a spare pump until such time as Venus is in retrograde, the moon is full, and my insurance decides it has all 37 signatures required to buy me a new one.

Message #2: I rode my Ninebot (like a smaller, lighter Segway) over to a meeting across campus. I noticed that it had only 3 (of 8) bars of battery power left, but I figured that it would get me there and back, and then I could recharge it. Wrong. Two bars remained when I hopped aboard. About a quarter of the way back to my office, it went from two bars to none in about ten seconds. The Ninebot started beeping wildly at me and then  shut itself off while I was still riding it. I went flying off and landed flat on my back. My pride was hurt worse than my back, as a kind student stopped to help me stand up. A call to the Communication Department office secured further help, in the form of my awesome admin/goddess Helen, who sent a student running over with the Ninebot plug from my office, so I could recharge my battery in the nearest building until I could safely ride.

Message #3: Hurrying to my car to make an off-campus lunch meeting, I arrived to find that an unbelievably thoughtless, selfish person had parked his car behind mine—with the engine still running and hazard lights on—at the end of the lot, in between two rows of parked cars, effectively blocking four cars from being able to move, presumably because there were no empty spaces nearby. I was incredulous. After testing my capacity for creative constructions of profanity, I started muttering the “serenity prayer” through clenched teeth, demanding divine serenity to accept the things I cannot change. “Yeah, like accepting selfish jerks who park behind my car—who does that?!” I yelled uselessly into my windshield. After laying on the horn intermittently to no avail, I was dialing campus security to request a tow truck when a young man in a suit walked casually out of a building.

“Is this your car?” I screeched at him after he noticed me glaring out my window and made eye contact.

“I only had to run in quickly. Sorry,” he said, not sounding nearly as sorry I wanted to make him be.

So to recap, as I tried to race through my hectic, end-of-the-quarter madhouse of grading, meetings, and numerous deadlines, I found myself unable to pump enough air, out of battery power, and completely unable to move my car.

Hmmmmmmm, I finally thought. Could there be a lesson for me here?!

Slowing down and limiting the number and rate of projects I commit to isn’t my biggest strength, to put it mildly. But even I have limits, and the Universe let me know for sure that this week, I have reached mine.

Time for deep breaths, dark chocolate, gratitude, and, if not serenity, at least some prioritizing of my to-do list.

The Upside of Denial

1425_1“She’s in denial,” my friend said, referring to another woman we were both worried about as she navigated a difficult personal situation. “She’s buried her head in the sand.”

Certainly, indulging in too much denial can be harmful. But denial also has an upside for those of us with late effects or other chronic illnesses. It offers us a break, a time out, a temporary escape from painful realities. Denial enables us to rest and regroup before facing challenges.

I have had 17 surgeries—first to treat the cancer and then to cope with a cascading series of late effects—and it wasn’t until the eighth surgery that I began to have difficulty really deluding myself.

Oh, I’d tell myself. It won’t be that bad. The surgery isn’t fun, of course, but all would be well almost immediately afterward. No worries, as my Aussie friend would say.

This has never been the case for me. Most of the time, after surgery I felt like I had been run over by a truck. The pain, constipation, nausea, limited mobility, and depressive effects of painkillers left me in rough shape for weeks or months.

Even a minor surgery, like having the central line port removed from my chest, left me with such sore pectoral muscles that I could barely dress myself for days. And the surgeon who did the fairly simple, outpatient procedure didn’t bother to read my chart, or at least not carefully. Before I could stop him, he quickly used acetate wipes (to which I have the same allergic reaction as to alcohol) instead of betadine to sterilized my skin, leaving me with a severe, itchy rash blanketing not only the incision, but also my breasts and most of chest for several days.

Despite several terrible experiences, I remained stubbornly optimistic that each time I had surgery I would recover quickly and smoothly, and that the degree of discomfort, pain, and embarrassment would be relatively minor.

I have clear memories of when this changed. It was surgery number eight when my ability to muster pre-surgical denial faded. I wanted badly to have the functional leg that my surgeon promised would be mine after a second bone graft. But the tight ball of dread in my stomach and the tension in my shoulders reflected my body’s keen awareness that before I received any increase in function, I was going to suffer. A lot.

And I did. Since then, I have struggled to pretend that my next surgical experience or other unpleasant medical procedures would be fine.

Over the years, I’ve had a number of mothers tell me that after their babies were born, they forgot about the pain of labor, that somehow the magic of one’s own infant removed memories of pain from their brains and made them unafraid to go through it all again. This sounds like a functional form of denial to me, in the same way that my stubborn optimism let me assume the best prior to my first several surgeries.

If you have to go through something painful, what purpose does fully appreciating how awful it will likely be serve? How does that visceral awareness improve you outcomes? I don’t think it does.

Consider the ostrich. It’s a myth that ostriches stick their heads in the sand when threatened, despite the common expression. Instead, when ostriches sense danger, they lower their heads close to the ground, making themselves less vulnerable and less visible. They don’t stop paying attention to the world; they just assume a more defensible position from which to scan the surrounding terrain.

And that’s how I think we should understand it when those of us with serious illnesses or conditions deny some of the harshness of our medical realities for a little while.

Of course it is not okay to become so delusional that you can’t manage your health and your life. But tucking our heads protectively for a while when we cope with painful health challenges seems to me like a fine thing to do.




Disability + Aging = ???


I just returned from a trip with my mom to visit my aunts and uncles, as well as a dear friend from graduate school, in Florida. We were having a great time chatting and catching up at a restaurant when I decided to share a story about taking my mom to lunch after an appointment at my prosthetist’s office.

“So I had a hydraulic leak in my ankle,” I began. “And–”

My aunt choked on her drink, mid-swallow. There was a brief pause, and then everyone at the table began laughing. I looked around in confusion.

Still chuckling, my aunt said, “That’s just not something you expect to hear anyone say.”

I smiled. “True enough. It sounds like a car repair or something.”

Surrounded by family and friends, all of whom were retired or near retirement, I stopped to think about how my continual need for prosthetic repairs and adjustments and for managing phantom pain would continue to happen in the context of aging.

I’m 49 years old, a generation younger than my mom, aunts and uncles, and friend. I thought about the health problems that my loved ones face as they age–some serious, some less so–and it occurred to me that my process of aging will (or already does) include aging in the body I actually have, not in a hypothetical body.

This insight may seem obvious, but it points to the difficulty in imagining our bodies in states and contexts that we have not experienced. We can try to imagine ourselves 20 or 30 years from now, but it is difficult to feel what it will be like to inhabit that future, “old” body.

Disabilities and chronic illnesses never remain constant; we have good days and bad days, some symptoms resolve and new ones appear, pain ebbs and flows. And one of the factors that intersects with our current health is our bodies’ aging processes. The damage done to my body by chemotherapy, medications, anesthesia, and surgery isn’t over–it changes and evolves as my body ages.

Proponents of a positive approach to aging advocate for “an appreciation of the aging process. Challenging the longstanding view of aging as decline… [the Taos Institute] provides resources for understanding aging as an unprecedented period of human development.”

I embrace the ideal of appreciating our development throughout the life course, and I see many exciting possibilities for living a good life for however long I have. I admire my older friends and family who cope with their health challenges while also continuing to engage in activities they enjoy.

Yet I can’t help but think about dozens of little things I cope with now that may become really big challenges in the future. How many steps do I have to go up to enter my house?  What will I do if I can no longer take the pain medications I use now? What if I need to have knee replacement surgery or surgery for the painful neuroma in my one remaining foot? What if my spouse needs care that I cannot provide? Will the chemotherapy make me more likely to have kidney failure?

I am searching for the balance between thoughtful planning and needless worry for the likely needs of my future body. As I think about retirement in another 16 years or so, I remain positive but cautious.

I am deeply grateful to be alive and aging, and at the same time, I know that aging in my disabled body will include particular unwelcome challenges, like hydraulic leaks. As long as I am able to keep laughing with loved ones, I think I can handle whatever comes next.