Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

Thursday, May 28, 2015

Identity talk


Recently, my partner recommended an article about a topic we discuss a lot: identity language—the words we use to name ourselves and our groups. Specifically, this article challenged long-standing professional standards for talking about people with disabilities. I’ll come back to this specific question in a minute, but first, I want to talk about a broader issue that underlies this article: the power of language to prescribe, as well as describe, our experience. This issue is especially important in the area of identity language because it turns out that how we name people—ourselves and others—says a lot about how we view those people. And that, in turn, shapes how those people—we or others—experience the world.

For example, consider the now-discredited term “imbecile.” For a time, it was regarded not only as appropriate but as a precise scientific term for an individual who scored in a particular range on tests that supposedly measured mental capacity. The description/diagnosis was then invoked to confine people to institutions. But it also did more. The word seeped into everyday language as a label for people who were thought to have no place in society, people who were beneath the rest of us. Eventually, it became a term for anyone who behaved in a way that we thought was less than intelligent (which often meant simply that we didn’t like something they did): “What an imbecile!” Over the years, the experience of people who were given this label, the experience of those who used the term, and institutions around the nation were shaped by this word. Of course the same is true of words like “genius” or “gifted.” People given these labels expect themselves, and are expected by others, to achieve at superior levels. Our experience, their experience, and the society we all inhabit are shaped by those expectations.

I would argue that this is true of virtually all language: language creates reality, so it’s never trivial. But it may be especially true of identity language. I think about the shifts that happened when Stonewall protesters dared to scrawl “gay pride” on walls in Greenwich Village, when 1970s feminists  insisted on being called “women” rather than “girls,” and when protests against systemic mistreatment were led by chants of “Black lives matter.” It makes a difference when groups insist on taking control of the language that describes—and also shapes—their lives.

But the power of words can be insidious. Sometimes words have more power than we realize, and we may be taken aback when something we say has an impact we didn’t anticipate. This can easily happen with identity words. Anyone who’s paid much attention to identity language has likely had this experience: We recognize that it’s important for people to be able to name themselves, and we try to use language that’s sensitive to that conviction. We really want to say the right thing, but the “right” words keep changing. We make mistakes, we feel guilty, frustrated, regretful, maybe put-upon by the constantly shifting nature of identity language. We may be embarrassed at the almost inevitable “slips” that occur as language changes faster than our own habits—or even faster than we can track it.

This is a tricky issue. On the one hand, it makes total sense that folks’ sense of how they prefer to be named will change and that new terms for marginalized groups will emerge. Language is nothing if not dynamic, and given that identity-related experiences change all the time, of course the language surrounding identities will change. And to make things even more lively, identity terms may vary not only historically but also geographically, by age group, by race/ethnicity … and on and on. In this ever-morphing morass of identity language, well-meaning people may feel like it’s easier, safer to just avoid conversations where identity language might come up—depriving everyone of opportunities to learn more about this thorny thicket.

There’s no easy answer to this dilemma. The bottom line seems clear to me: people have the right to name themselves; doing so is crucial to their empowerment and their self-esteem. We know from history that depriving people of that right is one of the first steps toward disempowering them, insisting that they be who someone else wants them to be. But it remains a challenge—a healthy one, but still a challenge—to negotiate the terrain of identity language. It requires patience with one another and expansive willingness to stay in conversation about who we all are, how we each name ourselves, and why it matters.

So, how does this apply to the article that triggered this blog?

The article raised exactly this dilemma, but in a professional/academic context. By way of background, the publication manual of my own professional field, psychology, has specific guidelines about identity language, and adherence to those guidelines is required whenever we publish in the field. The instructions are straightforward: (1) Use “person-first” language where possible—first say that you are talking about a person, then describe the characteristic that makes them salient to this setting. So we use “individuals with autism” in preference to “autistic individuals.” The point is that the characteristic described is only one aspect of those persons; everyone is an individual first, and can only secondarily be identified by particular characteristics. (2) Never use an adjective that describes a group as if it were a noun that defines them. For instance, use “people with disabilities” rather than “the disabled.” The rationale: there is always more to a person than any single adjective can convey. Using a term like “the elderly” implies that this single adjective defines everyone in the group uniformly and tells us everything that’s important to know about them.

But wait! Not so fast! The article in question challenged this long-standing, confident analysis of the identity language question. The challenge came from listening to the language of the disability movement and attending to the preferences of that group—letting them name themselves rather than assuming that “we” (in this case, professional psychology) have it “right” on their behalf. That perspective led the article’s authors to question the universal use of “person-first.” Instead, they argued, we should, at minimum, intersperse disability-first language.

In concrete terms, this would mean saying “persons with disabilities” some of the time and “disabled persons” some of the time. In reference to particular disabilities, it would mean using “amputees” and “people with amputations” interchangeably. The origin of this suggested change is a movement among disabled people based, as I understand it, on two key critiques of person-first language:

(1) Always putting the person first and the disability later implies that the disability is somehow shameful, so it should always be secondary. The contemporary disability rights movement is based, in part, on the principle that so-called disabilities are a form of human variation that should be respected in the same way that other forms of variation are—not ignored, not dismissed, not devalued. From this perspective, a disability is only a problem if the physical and/or social environment makes it a problem. Using a wheelchair to get around is not a limitation unless physical structures and social attitudes make it difficult. So, if a disability isn’t shameful but is just a form of human variation, why would we hide it behind “person with”? We don’t do that with neutral variations. We don’t say “a person with tallness” or “an individual with English language.” This is a great example of the shaping power of language: by placing the disability second, we risk colluding, if inadvertently, in the notion that it’s shameful.

(2) The use of “with” in person-first language implies that the characteristic is sort of attached to and separable from the individual—like we might say “the kid with the bike.” But in fact, disabilities are not separable; they are present in every moment of the individual’s life. By using person-first language, we risk denying this, implying that the person can (and maybe should) live as if the disability could be set aside, like a child’s bike.

Now, some might suggest that these arguments are stretching the point. No one really means to trivialize disabilities by their language. But neither did we mean to damage lives, develop unacceptable biases, or create destructive institutions when we coined the term “imbecile.” Only down the road, after we had test-driven it a while, did we realize the problems that were created by this presumably descriptive word. Language is a living thing, and we can’t know today what it will grow into tomorrow. So our job is twofold: to pay attention to the impact, not just the intent, of our language (a lesson I learned from my partner’s work in diversity domains) and to be open to challenging and changing it.

This article was a great reminder that none of us has this nailed down. Like the field of psychology, we may have a perfectly good rationale for how we do language—and until that rationale is challenged in a persuasive way, we’ll continue to see it as perfectly sensible. But language is alive, and it will change—despite our sensible rationale. Only when we adopt the new language will we see our old linguistic habits as problematic. And then the new ones will assume the stamp of “correctness.”

Until they don’t.




© Janis Bohan, 2010-2015. Use of this content is welcome with attribution and a link to the post. 

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Monday, November 4, 2013

Why we need the people mover



I haven’t written for a while—too busy—so I’m hoping that grants me license for a long-ish post this time. I hope, because this qualifies as long-ish. Here's a colorful photo to entice you to read on.


I’ve written before about this idea of life as a “people mover.” We all get on at birth, and the contraption moves us inexorably forward, sprinkling us with experiences along the way, until we rotate off the end, to be replaced by the next wave of people. This seems absolutely right and appropriate, as well as inevitable. At some point, it’s our turn to get out of the way … as it will be everyone’s turn, with time.

I’ve recently had another—and different—encounter with that sense of how life moves. It’s been made up of many and diverse pieces. But they all have, to my mind, a common message: the people mover is essential for us all. 

Here’s a smattering of the experiences that got me thinking about this:
  • The quarterly newsletter for the LGBTQ section of my professional association just published its last edition. Henceforth, folks will rely on the website to keep in touch with what’s happening in the organization. Certain long-standing features will be lost, and the news will no longer reach folks who don’t use the Internet. To be honest, I’m sort of sorry for the change. I like the newsletter and read it regularly. Besides, the editor is a friend who has spent a lot of time and love on this. Still, this is the direction of news media of all sorts. And the folks who are now in leadership positions come from the Internet generation … and that will remain the case in the foreseeable future. Those of us who would cling to (or cherish, pick you own word) the old format need to let go. We need to let the folks behind us take charge.
  • There was a column in the New York Times this morning about the drastic changes that are occurring in higher education. (The title, “Innovation Imperative: Change Everything” sort of summarizes everything I’m trying to say here.) The emergence of MOOCs (massive online open courses) that allow anyone, anywhere to log into a college course and take it–for free!—combined with the rapid growth of online courses run by individual universities (for credit and for a fee) as regular parts of their curriculum are already changing what “education” means. Sure, you lose some things, as some of us are quick to point out—the camaraderie of fellow students, the invaluable person-to-person interactions between students and faculty, the sheer joy of out-of-class conversations that bring knowledge alive, libraries with real books, and more. But look at how many people are able to have access to education who otherwise could not. And consider the breadth of courses anyone can take—courses on any topic, taught by people from around the world, at any time of day or night. Those of us who insist that just one form of education counts as Real Education need to let go. We need to let the meaning of education grow and morph with the aims and passions of the folks behind us.
  • I recently read a Time magazine column by Randi Zuckerberg, sister of the founder of Facebook. Her point is more complicated than this, but basically, she argues that her generation—i.e., the folks behind us on the people mover—has grown up with a much different understanding of privacy than that held by previous generations. Specifically, she suggests that the line between our private and our public lives has blurred in this social media-soaked generation. More than blurred; she thinks the division has basically vanished. And she’s fine with that. She argues that people will be “three-dimensional personalities whose lives, interests, hobbies, and passions are documented and on display.” Many of us who grew up in the era before such public display of our lives was so prominent may resist this shift (as I do. Certain friends continue to prod me to get on facebook). Yet, we need to realize that our vision of “privacy” is different, is passé, is (I hate to use the word about myself) old-fashioned—not a value judgment; just an observation. Personally, I still insist that sharing my personal life with friends is not the same as sharing it with thousands, and I still prefer the former. But, resist though we may, our harrumphing has had no effect in stopping this shift thus far. And it won’t. Time to get out of the way.

There have been others encounters, but I’ll stop there. In each case, I was struck with the sense that this game is passing me by, and it's right for me to let someone else play.



Now, I’m not saying that I no longer want to be engaged in “the game.” Nor am I saying that its passing me by is a bad thing. On the contrary. My daily aim is to do what I can to stay engaged, to learn at least some of the skills that the new game asks of me—enough to have fun, even if I don't master it. Enough to avoid sinking into a curmudgeonly critique of everything that represents “kids these days.” But my daily aim is also to welcome life as it is, not as I’d like to bludgeon it into being. The simple truth is that I am nearing the end of the people mover, and the folks coming along behind me don’t look, think, act, or dream in just the way I have. And they are, surely for better and for worse, the ones who get to choose the game these days. 

It’s a difference in perspective. I view these changes as a shift away from how I’ve known the world. The people behind me view them as a shift toward the world they will define and inhabit. I figure it’s their turn. Besides, in some sense, the task of absorbing change over a lifetime becomes daunting. There comes a point when I, for one, am happy to let them take my place. Some might call this giving up, giving in. I call it reality testing. Acceptance, in the Buddhist sense.   

But here is one shift that I genuinely wish I could be around foralthough I am quite aware that some folks (perhaps many in my generation) have the opposite reaction to this change. It’s the demographic shift that is happening in this country, the political and psychological shifts that this change invites, and the promise of more to come.

I grew up in southeast Denver in a very white, very middle to lower-middle class neighborhood. I knew nothing about race or ethnicity (other than some blatant stereotypes that floated around my family and my social circle), was oblivious to class (ditto), and to religious diversity (ditto again)—and the same can be said for ability status, gender identity, sexual orientation, ageism, you name it. Gradually, thanks to a decent education and encounters with thoughtful and socially conscious folks, I began to get a clue about these issues—the many prejudices we/I carry, the dynamics that underlie them, and their human costs.



And now—just when I’m starting to “get it,” just when what we’re currently calling diversity is becoming the norm rather than the exception (“minority” will soon refer to white folks in this country)—I’m approaching the end of the ride. And behind me are all these folks I never knew, all the learning I won’t be exposed to. Now, I don’t want to sound Pollyanna about this massive social change. I am very aware that many struggles lie ahead. Many folks in this country remain wed to old notions about who is worthy and who is not. But opportunities abound for us, as individuals, to begin the process of undoing some of that, at least in ourselves.

For example, in recent weeks, I have attended the following events, each of which gave me a glimpse of a world that I don’t know well. Glimpses, it’s true. But every piece adds to the puzzle I never saw earlier in my life.



  • We went to the Longmont museum to see their Day of the Dead exhibit. (Pictures of some of the altars in that exhibit are scattered through this blog.) I’ve vaguely known about this celebration (and it is a celebration) for years, but very little. This display consisted largely of alters created by local folks—individuals and groups—to honor particular individuals they knew, historical figures, the ancestors of group members, just a whole range of people. I learned about some of the traditional elements that go into an altar and the meanings they carry. Since then, this holiday has been highlighted in the New York Times and is the basis of a feature event at the Denver Botanic Gardens. Who knew …
  • We saw the play “Just Like Us,” which is about a group of Latina girls, friends from childhood, who face very different options when they reach college age. Those who are not documented encounter a whole range of limitations—college admission, scholarships, jobs—and other people in their lives face even more dire consequences—deportation and likely permanent separation from their families, persistent fear of the police. I was somewhat aware of this issue because this is a topic I’ve explored some at conferences and such. But still, some of this, I never knew …
  • We went to a play called “G.I.M.P. Nation,” put on by a small theater company (Phamly Theater Company) in The Laundry, a small theater in an out-of-the way corner of Denver. The actors all had a disability of some sort (visual impairment, early-onset Parkinson’s, Crohn’s disease, hearing impairment, radial club hand, and others). The play was an in-your-face challenge to temporarily able-bodied people to recognize their biases based on ability status and the human costs it exacts. Again, I have thought and learned some about this due to experiences in my own life, but this play brought new insights—e.g., how easily we patronize people with disabilities, when, that is, we’re not outright dismissing them.
  • We saw the play “Book of Mormon.” My partner and I have done some research that involved becoming quite familiar with the LDS (Mormon) faith, so the content of the play was mostly familiar. What fascinated me about it was the play’s effort (successful, in my estimation) to be witty about Mormonism without its feeling hostile or denigrating. I realize that people who are themselves Mormon might feel differently. But I feel pretty protective of the LDS Church because of my close connection with it over years and my sense that the church is an easy target for derision in our culture. But despite this defensiveness, I found the play surprisingly respectful. The key message was that the packaging of beliefs is less important than the beliefs—and the core values of the LDS Church are like those of other faiths. It turns out that maybe people can be educated through comedy to recognize that. Who knew …
  • And then, there was CU’s all-day symposium on LGBTQ issues, followed a week later by the annual student-led drag show. Now LGBTQ topics are an area where I feel quite in touch. It’s harder to surprise me in this domain because my partner and I think and talk about this stuff a lot, and we’re both quite involved in various aspects of the LGBTQ community. Still, several parts of the symposium were eye-opening moments for me. First, there was a panel of administrators from each of the three CU campuses, all trying to convince everyone how wonderful their work in this area is and how much more wonderful it will soon be. The surprising part of this was their very presence at the symposium and their clear determination to persuade us that they genuinely love LGBTQ folks. Imagine that happening a decade ago! The next enlightening moment was the student panel. Historically, panels of queer folks (especially youths) involve a string of people taking turns telling their coming out stories—usually focusing on how bad it was. But in this group, not one of the five panelists did a coming out story. Instead, they conveyed a great deal of comfort with their own identities—and a willingness to challenge individuals and systems that failed to honor those identities. Imagine that a decade ago! And then, a drag show that draws scores (maybe hundreds) of people to watch, a show laced with trans youth joining the LGBQ performers—all in a major university performance space and with the university’s blessing. Who’d have thought …

So, as you can no doubt tell, I’m of two minds about this whole topic of moving off the end of the people mover, about feeling like it’s time to get out of the way. I do feel that the case in many areas, and then there are the things I want to hang out for. Out of the way, of course, but still engaged.

Let me finish with this one other observation. It makes good sense that we resist our rotation off the end. It makes sense for us personally—who wants to become “irrelevant,” “old fashioned”? Who wants to disappear from the scene? (I really do get it, on a gut level. Notice the sub-title of this blog: “Resisting Gone.”). And it makes sense on a larger scale. The people behind us really do have the right/obligation to shape the world they will inhabit. And yet, there are some things that each of us won’t easily let go. For me, it’s the richness of what this society will be in a few decades.

But there’s more to this resistance. Most of us really, honestly believe that we (still!) have something important to contribute. Surely the experience of a lifetime brings some knowledge, some wisdom that could be helpful. But personally, when I invest too much certainty in the belief that I am indispensable, I try to remember that every generation has surely felt that way. Every generation has warned of the loss of their wisdom and experience … of themselves, actually. And yet, the world moves on without them. And it will without us.

This weekend, we went to piano/flute recital at an art museum in Denver. One of the pieces they played was “Oblivion” by Astor Piazolla. As they played, I closed my eyes and found myself drifting in a canoe down a wide, slow-moving river, lined here and there with dark trees shrouded in mist. Probably because of the title of the piece, my sense was that I was drifting toward oblivion. It was a peaceful feeling, and I carried it away from the recital.

I think I’ll save the image for moments when I forget that the people mover is a good thing.



  

Thursday, April 12, 2012

Conference on World Affairs






I’ve been spending a good bit of time this week at the Conference on World Affairs (or CWA) at CU-Boulder. I go as much as I can every year. If you live near Boulder, you really should check it out. What a great way to rev up your brain after the winter doldrums! Besides, I always think that spending time on a college campus is good for anyone. It reminds us that the conveyor belt of life is in working order. There are folks coming along behind us, eager to start their adult lives. But about CWA …


Since 1948, the CU-Boulder campus has hosted the annual Conference on World Affairs. It began as a conference on international affairs (which makes great sense: it was shortly after the end of WW II). But it has since expanded to include sessions on the arts, the media, science, technology, ethics, the environment, politics, business, human rights, etc., etc. To quote Roger Ebert, who participated in CWA for decades, it’s the “conference on everything conceivable.”  Conference planners bring in about 100 scholars, performers, academics, business and government people, and assorted folks with something to say. These folks come at their own expense and without getting paid. All day, every day, for a whole week they gather in auditoriums and rooms around campus to explore every conceivable topic in plenary sessions, panels, and performances—more than 200 sessions in all.


The really astonishing thing about this conference is that all of these events are free and open to the public. Imagine that! A week of free mind-expanding continuing education with some brilliant thinkers, artists, politicians, and wannabes, all without needing to register for anything or pay a cent! Not surprisingly, a huge proportion of the audience is made up of community folks, many with gray or white hair. This is another of the gifts of retirement: the freedom to hang out with ideas in the middle of the day for a whole week!

CWA folks are easy to spot. We're the ones clogging the walkways between sessions, wearing walking shoes for our day on campus. We're carrying a satchel with an umbrella and the conference program peeking out, or we're sitting on a bench and perusing the schedule while we down a snack or some water. We pretty much fill the cafeteria at lunch time. I keep thinking that the cafeteria staff must be warned in advance about this because they are so easy going about all these folks who don’t know quite know how the food court works or where to pay.

The other main group of folks attending CWA sessions is made up of college students. Of course, the location is handy for them, and they also are often encouraged (or required) to attend. The result is a great cross-generational learning opportunity. Think about it. In how many settings do we sit side by side with people 50 or 60 or 70 years our junior (or senior) and share a moment of intellectual challenge?  How often do we get to listen to the questions that college students ask about politics, morality, technological change … and how often do they get to hear ours? There’s just so much to be learned from this.

So that’s how the world looks to a 22 year-old majoring in political science!

Wow! There are actually college students who have never heard of McCarthyism.

Do they really think that the 1960s were “a long time ago”? (answer: yes.) 


Am I hearing this right? The social construction of race, a "fringe" idea in my day, is now taken for granted. Wow. 

Ah! She didn’t understand the point because “before the pill” doesn’t mean anything to her. She never knew a time when contraception wasn’t available.

I can only imagine what thoughts the students have as folks of my generation rise to speak. I hope they find it equally intriguing.

So, I’ve attended about half a dozen sessions so far this week. Of these, I found one (a plenary) pretty boring. But still, I came away with some murmuring thoughts despite not being too enthralled. Another session (also a plenary), I found entertaining, informative, and thought provoking. However, I can’t recall being moved to think about it much. Maybe that’s because I agreed with the speaker so much I just nodded at his points and laughed at this jokes. Both of these were basically on the current crisis of national political polarization. 

The rest of the sessions I’ve attended have been panels: ethics and the new genetics, disability pride, same-sex marriage, and parallels/differences between the Tea Party and the Occupy movements. Three of these four were great! I learned a lot and got stretched a bunch in each of them. But one (same-sex marriage) was extremely frustrating. Probably because I know a fair amount about this (my partner knows a ton, and I absorb a lot from her), and the self-described “experts” on the panel didn’t. But they thought they did.

This is one of the challenging (sometimes fun, sometimes frustrating) things about CWA. The panelists are given only a title for their session—no description, no guidance about what they should say. The titles are pretty vague, sometimes provocative, sometimes obscure. Some panelists take their role really seriously; they think about the topic a lot in advance, read up on the issues, prepare remarks. Others just wing it, sometimes saying something like, “I don’t really know anything about this, but here’s what I think.” It’s sort of pot luck, so I count my experience of three excellent panels out of four as a very tasty outcome. And I haven't had many chances recently to share a tasty potluck with college students.