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From Phyllida's Desk

Help is not a dirty word

Last year, explaining to a coworker why I didn't want to volunteer at the children's Halloween party, I said what I thought was obvious: "I don't feel like having the 'What happened to your hands' conversation a gazillion times."

She apologized, saying, "People just don't see it after a while."

That's nice for people. Because it’s the deformities they stop seeing, not the disabilities.

Recently another coworker (who has known me for all eighteen years that I've been at the library of the American Museum of Natural History) saw me walking toward her while carrying a coffee mug and, reacting to the angle of my elbow and non-functional wrist, began swinging her own arm in a roll-out-the-barrel, Oktoberfest sort of way. It didn’t occur to her that she was making fun of me, that however awkward or clumsy or graceless I look when performing manual tasks, it's an adaptation to disability, not deliberately ugly or funny.

The truth is, I have visible deformities of both hands and forearms, but my disabilities are much harder to see. And because I was born over sixty years ago, at a time when disability was just beginning to be a concept that had been wordless, or had only cruel words like gimp or cripple, later handicapped, I have only recently begun "seeing" my disabilities myself.

As a child growing up in the late 1950s and early 1960s, I often felt that failure meant not finding a way to do--everything--that people do with their hands, and as quickly and efficiently. To hold up the group or be left out. To need help. And although total success in this effort was impossible, I did manage to ... manage. That is, I figured out how to accomplish most of the essential manual tasks of life, if not as quickly and efficiently as with hands, at least well enough not to call attention to myself. This struggle was not entirely wrongheaded: young children need to feel that they can do things and that they can be independent.

The problems came as I got older. The more I seemed to prove that I was not disabled, the more embarrassment I felt when it turned out I was. Letting everyone believe I'm a superhero leads to shame whenever I'm exposed as merely human. The worst humiliation in my forty years of working life occurred as a result of my never having clearly and unapologetically identified myself to my employer and coworkers as disabled. Not just deformed, but disabled in ways that are not obvious.

People don't see my deformities after a while because they see, instead--as I prefer--my wit, my intelligence and, when I was younger, my physical beauty, my pretty face and slender figure.

But my coworkers rarely see the disabilities. It's hard for people to extend their imagination beyond the narrow and unrepresentative slice of activities that occur at work: typing on a computer keyboard and eating a simple lunch I bring from home. To type, I use the only two protuberances, both surgically created, that, without functioning wrists to change the angle, point down: a "finger" of one "hand" and a sort of bent knuckle of the other. I couldn't be a speed typist or a stenographer, but this "two-finger" method of typing works well enough for database management, the job of cataloging library books. As some of you know, I also write fiction, and it works well enough for that too.

Nobody sees the effort it takes to show up at work, having showered and dressed and performed all the other acts politely called "personal hygiene," and having made and eaten breakfast. People don't see the disabilities because they can't imagine the many small actions that are made difficult or impossible by not having opposable thumbs and fingers with two joints, by not being able to grasp or to grip, by not having forearms that turn over or wrists that swivel so that one's palms can face up (as for lifting a window sash)--everything that hands do. Many of these tasks are so minor, so infinitesimal in effort, that we don't think of them at all, don't think they require any work, or cost us anything in energy or patience, or give us satisfaction. Unless we can't do them easily, or at all.

I'm reminded of all this by our recent traumatic election, of a man who thinks that mocking the disabled is acceptable behavior. And while nobody I know believes that, there are aspects to Trump's mean-spirited outlook that we all share (and I include myself in that "we.") We all have moments of feeling that needing help is somehow shameful.

When I first started talking about my disabilities to friends, what I heard was, "But you do so much," and, "You're not really that disabled." Most of this is, I think, meant kindly. However we deny it, there is still a deep shame attached to being "disabled," to being "not able"--the reason that many people with disabilities prefer not to use the word "disabled" at all.

Only in the last dozen years, with talk therapy, have I begun to climb out of the deep, dark cellar of shame: at needing two hours to get ready for work; at living with my mother, saving my money, getting by on a part-time job, so that I have physical and emotional energy to spare for writing, exploring my passions, showing my true self--so that my entire existence isn't consumed in managing and coping, in flossing teeth and cutting toenails.

The truth is, every person with a disability needs help, but so does everybody who is disadvantaged in any way. Everybody not white, male, cisgender, heterosexual, and with an adequate income needs some kind of help to live a life of equal opportunity and dignity.

Help can sometimes be tangible: a guide dog or a wheelchair. But sometimes help simply means recognizing that another person needs assistance; that, even if you can't imagine their situation, it is not shameful, not the result of not trying hard enough.

My situation is unusual. The help I need can't be achieved with a single tool or procedure. Sometimes I wish I had a lady's maid so that I could grow my hair long and have a French braid or a pony tail, wear clothes that zip up the back and have someone to hook my bra. I wish I could afford assisted living, where all the housework, laundry and meal preparation would be done for me. As it is, I simply "manage" task by task, day by day, and sometimes I find enough energy to create, to write fiction, to offset the deprivation of never gripping, never grasping. I can't get no satisfaction, but sometimes, if I'm lucky, I can create some, by writing it.

In countries with a social safety net, it's understood that people need help: old people (as we will all become if we are lucky); children (as we all have been); people with injuries or illnesses (as we all have experienced); as well as people of limited income and people of minority groups (as we should acknowledge are all human, the same species).

Trump's supporters have said that they resent helping others because that help will come at their own expense, that by helping someone else they are taking away from their own portion. Even if that were true, how is that an acceptable point of view in a society?

We are social animals, and we live in a society. All the libertarian rhetoric in the world can't change that fact. Human beings are not tigers or bears or amoebas. We live in groups. When we were hunter-gatherers, those groups were small and egalitarian. Agriculture brought civilization, a population explosion, and hierarchy. We can't go back to living in nomadic groups (there are about eight and a half billion too many of us for that), but we must work every day, all of us, to minimize the divisions that separate us; to help each other. It's called socialism and it is not a dirty word, any more than "help" is.
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