Laura Hershey: Writer, Poet, Activist, Consultant Rotating Header Image

Daily Life

Poem: “Adopting a Fourteen-Year-Old in the 21st Century”

Adopting a Fourteen-Year-Old in the 21st Century

Teenage girls hate difference, and their mothers.
They want concave bellies, current fashion,
and to fit in. That was my fear, and her other
mom’s: that she might despise our dyke passion,
our wheelchairs, Robin’s speech, my respirator,
or her own awkward tender girl body.
Would the pride we’d model vaccinate her
against surface standards? But she came ready.
She wears mismatched florals, ignores trends,
has bold prints and slogans in her wardrobes.
She brags and introduces us to friends,
oblivious to ableists and homophobes.
She’s nonconformist, even more than us.
“There’s my moms!” she tells the kid beside her on the bus.

Copyright 2010 by Laura Hershey

More Thoughts about Public Space

A couple of months ago, I wrote a blog post about intolerance toward the presence of certain bodies and behaviors in public space. I probed the experiences of those of us who enter public space with non-conforming bodies, bringing along a distinct and, to some, disturbing set of sounds, images, and ways of moving.

Recently, I’ve been thinking about the flip side of encounters in public space. Rather than thinking about the impact on public space of people with marginalized bodies and behaviors, I’m noticing how people with privileged bodies use and affect public spaces. By privileged bodies, I mean those that are considered normal, acceptable, powerful. Examples include bodies which move easily without any mobility aid or device; bodies which need no personal assistance to navigate or inhabit public space; bodies which pay full admission or are otherwise “invited in”; bodies whose lived experiences up to that point have included comfort, security, education, financial success, health, and the esteem of others; bodies of standard size, shape, attire, gender presentation, age, and mannerisms; and bodies without any visible illnesses, injuries, disabilities, or other deviations. Most public spaces are designed for these privileged bodies, and so they “fit” easily in those spaces.

In settings ranging from streets to airports, from meeting halls to botanic gardens, from movie theaters to buses, I have observed some of the interesting ways that privileged bodies conduct themselves in public space. These are generalizations of course, and only meant to illuminate some differences in expectations and experiences of privileged people, as compared with marginalized people.

Privileged bodies move through public spaces comfortably and assertively. They encounter few obstructions in the built environment. Rarely are they challenged, either physically or verbally, when going through a doorway into a bathroom, a mass transit vehicle, an exhibit area, a store, a restaurant, or an office building. They do not have to duck, scrunch, squeeze; they do not have to use a back door or a side door, waiting while someone opens it for them. They do not have to scan the ground in front of them for bumps or ruts, nor do they have to search for the one ramp on a long sidewalk or into a large building. They easily operate controls such as door openers, elevator buttons, turnstiles, kiosks, phones, intercoms, change slots, etc., and so these things do not slow them down. They do not attract negative or unwanted attention.

Given these privileges, taking them for granted, people with privileged bodies have a propensity for certain behaviors. Consciously or unconsciously, they choose their actions based on their assumptions about belonging, access, comfort, power, and acceptance. Here are a few of my specific observations of the behavior of privileged bodies in public space:

  • Privileged bodies tend to move through public spaces with limited consideration of the presence of other bodies.
  • Here is a typical scene: A pair or group of people stand off to one side, next to a flow of pedestrian traffic. One member of the pair or group is departing from the group, talking animatedly while walking backwards directly into the flow of pedestrian traffic. All her attention is directed to her conversation, yet she does not slow or stop her backwards walking, nor turn to look behind or around her. People going with the flow of traffic are forced to slow, stop, or go around her in order to avoid a collision. Privileged bodies within the flow find it relatively easy to do so, unencumbered as they are with impairments, mobility devices, children, etc. But someone unable to see well or walk quickly, or someone maneuvering a wheelchair through the human labyrinth, or someone pushing a stroller, is much more vulnerable to that hazard. If a collision were to occur, the privileged person might be injured, might be indignant, but the less privileged person is likely to suffer greater harm. As a result, people with less privileged bodies (i.e. marginalized bodies) tend to adopt the opposite behaviors: They/we pay constant, close attention to other bodies moving through and near our space, staying always aware of obstacles, sudden moves, and unexpected alterations in the human environment.

  • Privileged bodies tend to appropriate the most desirable spots in public spaces, based not on need but on comfort and convenience, undergirded with a sense of entitlement.
  • For example, sometimes I have gone into a lecture hall or movie theater — any type of environment furnished with auditorium-style seating, i.e., rows of chairs with a few aisles running at intervals between the rows. I am often accompanied by my personal assistant, who walks, and who will need a place to sit. I need to sit in my wheelchair, adjacent to my assistant’s chair so that she can help me when needed. So for me, getting a seat at the end of a row is a necessity. Similarly, people whose disabilities make it difficult to squeeze through the row to a middle seat, or who need to park a wheelchair or a walker in the aisle and transfer into a seat, or who expect to need to get up frequently in order to take care of chronic pain or bathroom needs — these people and others have a strong, legitimate claim on the end (aisle) seats. Yet when I go into a hall which is, say, one-third to half full, I almost always find that the aisle seats have been the first ones taken — mostly, I believe, by people who want them, not by people who need them. In general, these are not malicious acts; in fact, they are not even conscious acts. They are simply the unconscious choices of people who have become accustomed to their bodies being privileged by the designs and practices of public space.

    In fact, when certain more accessible, and therefore more desirable, seats or other spots are formally reserved for people with visibly aged or impaired bodies — such as the front seats on public buses — most (though not all) people with privileged bodies will respect those rules and conventions, if reminded by signage or by verbal request from someone in authority. But in the absence of such reminders, they automatically choose the best spots for themselves.

  • Privileged bodies in public space tend to express themselves fully and unabashedly — but also with a sense of propriety and restraint that is more instinctual than calculated.
  • They do not make vocal sounds that might be regarded by others as “weird” (as an autistic person might), because they feel no urge to do so. But many appear to have no qualms about speaking loudly enough to dominate a conversation, and even the area around it. Similarly, privileged bodies tend to dress, gesture, laugh, hug, kiss, touch people, touch things, activate mechanical devices (cell phones, watches, etc.) with complete ease and aplomb — but also within strict parameters that they have learned so well that they need not think about them. They expect no rebuke, blatant or subtle, because they are highly skilled in censoring themselves as a cost of maintaining their privilege. They do not, like many people with marginalized bodies, expend much mental energy worrying about audible or visible bodily manifestations that might result in banishment, ostracization, disapproval, or other penalties — because they have the ability to “control themselves,” i.e., to present and conduct themselves in socially sanctioned ways.

    I would be very interested to hear the reactions of various people to what I have written here. Do you move through public space in a marginalized body, or in a privileged body? Do your observations correspond with what I’ve noticed in my forays through public spaces? What about your behavior? Do you make the kinds of choices I described above, based on your bodily status? Or do you deliberately buck those conventions? Do you experience privilege in some settings, and marginalization in others? What do you think?

    Some Thoughts about Public Space

    Today, completely by accident, I ran across this blog post by a blogger at “Student Activism,” about whom I previously knew nothing. In fact, I still don’t know anything about this writer. (Unlike me, a lot of bloggers seem not to want to disclose their identities too soon.)

    This thoughtful post, entitled “Childhood, Disability, and Public Space,” discusses the negative judgments made by some nondisabled adults about behaviors sometimes exhibited by children, and/or by adults with developmental disabilities. The writer is careful to emphasize that she does not mean to imply that adults with DD are childish or childlike. Rather, she is concerned about the different and related prejudices that both groups face when venturing into public places.

    This piece resonates with me on several levels. I have a daughter, just on the cusp between childhood and adulthood, who carries several labels including DD. She is gregarious and fun-loving, and loves to go to museums, plays, sporting events, and other activities that take place in shared public venues. Most of the time, when we’re out and about, she is courteous and perfectly appropriate… sometimes, not so much. At these times, she talks too loudly during a performance, or eats messily while her napkin remains pristine, or yells at her parents for trying to correct her. Her other mom and I work with her to learn good social skills, and she’s making real progress, but I’m aware that there are people out there who think kids like her should just stay home.

    I’ve read news stories about families getting kicked out of movie theaters because of sounds made by their autistic children. I’ve heard of restaurant patrons requesting a different table because they didn’t want to watch a disabled person eat. I’ve seen signs posted in stores, making supposedly funny threats against children who misbehave.

    I know that we all have certain expectations when we go shopping, or buy a ticket to a performance. In any society that aspires to freedom and equality, those expectations need to include the variations in atmosphere introduced by people of different ages, abilities, cultures, and so on.

    I myself am a very noticeable presence in any public venue. I use a power wheelchair which I operate by blowing into a tube. I have more tubes going into my nose, connected to a mechanical ventilator, which pumps air into my lungs as I breathe. At symphony orchestra concerts, during pianissimo passages, I’ve become acutely aware of the mechanical sounds emanating from my respiratory equipment. My self-consciousness has sometimes veered close to embarrassment, but I’ve reminded myself that I have as much right as anyone to be in the presence of that great music.

    I go so far as to believe that I make an important contribution to those public gatherings, even when I am merely a customer, a passerby, or an audience member. I help to demonstrate, without fanfare, that all kinds of people get around in the world in all kinds of ways. Everyone is not the same. Some people make unusual noises. Some look, move, or act a bit differently. Some people even breathe differently. That’s one of the things I want my daughter to learn when we go out — though it’s clear to me that she already knows that, more comfortably and more generously than most people.

    The blogger at Student Activism, who is nondisabled and a parent, makes the following important point:

    Public space is not our space. Children, the elderly, and people with disabilities don’t use parks, restaurants, stores, museums, and theaters at our indulgence, because it’s not our space. It’s everyone’s space, and everyone has an equal claim on it.” (Emphasis in the original.)

    That’s why we need accessible buildings and buses. That’s why we need welcoming businesses and cultural facilities. That’s why we need to re-commit to the idea of real community.


    I woke up with this thought today, and decided to write it down, illustrate it, and put it out there in cyberspace.

    I'd rather have a machine breathe for me...

    A Writer’s Resolutions

    It’s 2010, which sounds weirdly futuristic, but nevertheless here we are. The imagined future has once again surprised us by becoming the lived present. Time to embrace the calendar by making short-term promises to ourselves.

    In no particular order, here are a few of my resolutions:

    *I resolve to write down poetic lines when they come to me, rather than thinking I can hold them in my head until I “have time” to turn them into a real poem.

    *I resolve to write at least a little bit each day — poem, blog, journal, essay, whatever — even when I don’t “have time.”

    *I resolve to complete my almost-completed collection of essays, think of a better title for it, and actively try to get it published.

    *I resolve to communicate more with fellow writers, sharing critiques with generosity and gratitude. (If this applies to you, feel free to hold me to it!)

    *I resolve to complete oral history interviews with both of my parents.

    *I resolve to submit more work to literary magazines.

    *I resolve to keep living a life rich in material for writing, even if it leaves me less time for writing.

    I surely recognize that the above resolutions are ambitious and partly contradictory. Maybe posting them here in cyberspace will help me fulfill them.

    What are your writerly resolutions? Feel free to post a comment.

    The Meaning of Christmas (according to me)

    I’m no preacher, no sage, no Linus Van Pelt; but like most westerners enduring the commercialized chaos of Christmas, I occasionally find myself thinking about what the season might really mean. When I do think about it, here’s where my thinking leads: The meaning of Christmas, like the meaning of life, has to be invented, not discovered, by each seeker after truth. It’s not sitting there blinking at us like a Christmas tree. It’s not sitting there at all. It’s whatever we decide.

    I’ve decided that for me, the multifarious meanings of Christmas include some or all of the following:

    Giving and receiving can be equally pleasurable, but only if both acts are committed in good faith, without any expectations of gain or loss.

    Certain color and light combinations are very therapeutic, in small doses. (Holiday decorations lasting more than a month are contraindicated.)

    Something about this time of year makes us think even more about peace, and its terrible absence in our world today. Thinking about it is, and should be, beautiful and uncomfortable. John and Yoko said that better than I ever could.

    Especially for children, presence is more valuable than presents. (I stole this from someone’s Facebook status.)

    If you eliminate all the noise and clutter (malls, stress, drunken office parties, etc.), Christmas can be a time of quiet joy. Or it can be a day like any other, which might also be good.

    Most people over the age of 12 seriously underestimate the element of surprise.

    Some Christmas symbols that we consider timeless icons were actually concocted by individual human brains, and in some cases revised after one or more false starts. For example, Tiny Tim was originally named Tiny Fred until Dickens changed it. Therefore, we should be skeptical about sanctifying any yuletide trope, and willing to come up with something better when necessary. For example, we could transform Tiny Tim again, from a pathetic, sugarcoated little wretch into a rebellious tyke who grows up to become a pioneer disability-rights advocate. (Maybe he could reclaim his original name. We’ll call him Fierce Fred.)

    Speaking of Christmas and cripples, what’s up with Mr. Potter? Really, capitalism has not done that much for disabled people, so why make a wheelchair user into the ultimate evil capitalist? On the other hand, good ol’ George Bailey’s hearing loss is a result of his selfless nature, and a symbol of the positive impact he’s had on the world. When he regains the hearing in one ear, it’s an anti-miracle of his never having existed, never saving his brother from drowning, who in turn wasn’t around to save a boatload of sailors. Sure, it’s cornball stuff, but who doesn’t love thinking that we all matter?

    Whether ultimately we do matter or not, here we are. We might as well light candles, sing songs, feast together, stuff some stockings, have some fun, be nice to each other.

    And that, Charlie Brown, is what Christmas is all about.

    The End of an Era

    van_byebye-004Today I said goodbye to an old friend: my 1994 Ford Econoline van, in all its Tobago green glory. I called last week to arrange to donate it to my local public radio station, and it was picked up this morning by tow truck. Once it’s sold at auction, I’ll get a tax deduction. I’ll also avoid sinking any more money into hopeless repairs.

    The engine was shot, but I might have kept it if not for the latest problem it developed. A cable essential to the operation of the wheelchair lift snapped in two, and it’s an old brand (Ricon) for which replacement parts are no longer available. Since the end of the tax year was fast approaching, I made the decision to let the van go.

    That van was important to me for several reasons. It was the first vehicle I bought with my own hard-earned money — as well as the hard-earned knowledge about how to do so, using a Social Security “work incentive” program called Plan to Achieve Self-Support (PASS). Under my PASS, I was able to keep my SSI and Medicaid benefits while working. By spending some of my earned income on car payments, I was able to “set aside” that income, so it was not counted in determining my eligibility for benefits. By purchasing the van, I not only got a vehicle I needed — I also launched what would become a fairly successful consulting career, without losing essential health care coverage. I was able to use the van to get to meetings, presentations, and other professional destinations.

    In addition, during the past decade and a half, the van also carried me, my partner, attendants and friends on some weird and wonderful journeys. We drove it to Jefferson City, Missouri, in 1998, to teach self-advocacy skills and independent living history to a Partners in Policymaking group. In 1999, we drove all the way to Louisville, Kentucky, to meet with disability movement leaders for a strategic discussion of media messages and images.

    In 2004, Robin and I took a carefree vacation on the coast of Oregon, along with my family and several friends. Unexpectedly and very sadly, we learned that a dear friend of ours, Tanis Doe, had died at her home in Victoria, BC. We traveled up through the northwestern US and into Canada, and spent a week helping to organize Tanis’ memorial service and some of her other affairs. Although I was grieving, I also felt very fortunate that we had both the mobility — in the form of my trusty Ford van — and the support of a team of attendants, to be able to go bid farewell to Tanis in such a meaningful way.

    Now, for a while, Robin and I will be a one-car family. That should work, as long as her Dodge Caravan can carry on. I’ll miss my van, but will honor the role it played in my life of work, mobility, friendship, independence, and adventure.

    The Halloween Costume Dilemma

    When I was a kid, I coveted the presents that came on Christmas and birthdays, and I stuffed myself on Thanksgiving. I felt like a real sleuth searching for Easter eggs. I took a pyromaniac joy in the Fourth of July festivities.

    But of all the holidays traditionally celebrated by American Protestants, my favorite was Halloween.

    That’s a little surprising to me now, because when I try to come up with costumes to wear to Halloween parties, or just to answer the door to trick-or-treaters, I usually come up empty. I don’t have a lot of self-adornment skills or creativity. I also puzzle over how any given costume idea might interact with my various highly visible disability accouterments. During this campaign season, I have thought of trying to be a scary Sarah Palin, or a Democratic donkey, or a persistent pollster. But any such persona/anima would, I fear, clash with my wheelchair, ventilator, and other devices.

    Of course, I could try to blend my equipment into a more technologically-themed costume. I could be Star Trek: Voyager‘s Seven of Nine (minus the spectacular physique), or Darth Vader (without the light saber — but my nephews would never let me get away with that).

    I could emulate the appearance of a famous disabled person; I’m just not sure I have the panache to pull off Franklin D. Roosevelt. I know I don’t have the dashing masculine charm of Christopher Reeve. (Celebrity women in wheelchairs seem to be few and far between. Annette Funicello, Barbara Jordan, and most others departed the public eye after becoming disabled, so they lack the easy recognizability of a good costume.)

    Things were much simpler when I was young. As a child, I never (that I can remember) worried about my disability’s effect on my costume. That’s probably because my Mom didn’t worry about it. She had a creative imagination, and the craft and sewing skills to carry out her ideas.

    One Halloween I was Snoopy, with beagle ears and a black button nose. With a few pieces of painted cardboard, my wheelchair became a rough approximation of a dog house.

    Another year I was a football player, with big shoulder pads, and a Denver Broncos helmet and jersey. I guess people just drew their own conclusions about how the wheelchair fit in with that.

    My favorite, most memorable costume was part of a family ensemble: Playing on our last name, my mother used brown and white felt to transform my brother into a walking Hershey chocolate bar. And around my wheelchair, she sculpted chickenwire and a large quantity of tinfoil into a Hershey kiss costume.

    Parents convey their attitudes toward their children through simple acts like these. (Okay, my mother would probably take issue with the term “simple” here. Some of those costumes probably took hours, and several false starts, to achieve the desired effect.) The point is, I had the same Halloween expectations as every other kid in my neighborhood: to dress up, to take on a new identity, and to present myself at each door demanding candy.

    Now I’m on the other side of that transaction, getting ready to answer my own door to trick-or-treaters. I’m still not sure what I’ll be wearing when I do that.

    I wonder if we have any foil around here?