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Judi Chamberlain (1944-2010), Activist, Author, Global Traveler — In (Some of) Her Own Words

Judi Chamberlin passed away a few days ago, leaving a legacy of activism, truth-telling, and leadership. She was a highly respected founder of the movement for civil rights for people with psychiatric labels, and for all people with disabilities and chronic illnesses. She had recently kept a regular blog called “Life As a Hospice Patient.”

I didn’t know Judi well, but I was fortunate to be able to interview her for my 2005 book, Survival Strategies for Going Abroad: A Guide for People with Disabilities. She shared the wisdom she had gained from her own international travel experiences, journeying throughout Eastern and Western Europe, Australia, New Zealand, Japan, and other destinations. She gave speeches, and consulted with grassroots psychiatric survivors’ projects, and carried out advocacy activities related to her role as a board member for Mental Disability Rights International.

Her close friends and colleagues are posting many moving remembrances and tributes in honor of Judi’s life and work. Even the national media has taken notice, with stories on National Public Radio and in the Boston Globe. I would just like to share some of her own statements, from my interview with her, about traveling and working with the worldwide disability rights community.

During the interview, Judi recalled one of her earliest global traveling experiences — a long, miserable flight to Australia. “There was a point, about halfway through the trip, when I thought, ‘I just can’t stand this.'” When she finally arrived, she remembers being “just totally exhausted, totally wiped out, nonfunctional.” But her ride from the airport, with fellow human rights activists, turned her mood around completely. “We got in the car and started driving toward Melbourne. Within five minutes, it was like we had known each other all our lives, because we had such an intense common frame of reference.”

Since then, Judi told me, her own mental health issues never really posed a barrier to her globetrotting. “I’ve never gotten depressed while I traveled,” she said, adding with a laugh, “I’ve gotten depressed when I came home!” In contrast, her chronic lung disease sometimes created problems for her, such as when traveling to high altitudes or polluted environments.

In her travels, Judi always met with other psychiatric survivor advocates, where she always found a very supportive environment. “It’s really important to know that there are psychiatric survivor organizations in every country and to try to make contacts with them,” she said.

I asked what advice she would give to others planning to go overseas. She answered:

“The biggest thing for people with a psych disability who think that they might have some sort of stress-related episode or whatever, would be to learn in advance as much as you can about what kinds of support systems you can set up. If people are not familiar with psych disability and you say to them, ‘I’m just terribly depressed, or in having an anxiety attack, or I’m beginning to hear voices,’ if people are naive about it, they might send you to a hospital — not where you want to be in another country.

“I’m not sure the U.S. Embassy would be terribly helpful, because they have the same ideas as anybody else — that if you’re in the psychiatric system, you probably need to be there. That’s why I think it’s really important, there’s an ex-patient group or an advocacy group — or in the absence of that, just some sort of disability group — that you know about in advance. If you deal with these things on a repeated basis, and and are afraid it might happen to you when you’re abroad, you probably have some kind of self-care plan. And if you’re staying with a host family, you should be able to discuss it with them, preferably before you get there rather than after — ‘ Look, sometimes what happens to me is this. And what helps me at these times is this.’ Set up your support systems in advance, even if you’re never going to need them.”

I asked Judi whether she would recommend disclosing mental health diagnoses or other invisible disabilities when applying to travel abroad programs. She commented:

“Some people have a psychiatric history, but they’re not frequently dealing with any psychiatric symptomology. So they have to weigh the stigma factor against any benefit. If a person thinks it’s likely that while I’m abroad I might get anxious or get depressed, and might act in some ways that people might not understand, then it might be a good idea to set something up in advance.”

I asked her to talk about the similarities and differences among the different places she had visited, with regard to psychiatric survivors’ issues. She said:

“It’s interesting — wherever I go, people say to me, ‘In this particular country’ — wherever we happen to be — ‘the problems of stigma are much greater than they are anywhere else.’ It always makes me laugh. The problem of stigma, the perceptions of people with psychiatric disability, are the biggest obstacle that we face. It may vary in its cultural context a little bit, but it really doesn’t differ all that much from one country to another. People with psychiatric disabilities are very widely perceived as being unable to care for themselves, and being fundamentally different from other people; and legally they are disadvantaged in that they can’t control their own lives in the ways that other people can. This is very, very cross-cultural.”

While the stigma and oppression exist all around the world, so does the solidarity. Judi said:

“I really feel that there’s a unity among psychiatric survivors that just transcends language and culture, so if somebody wants to feel grounded they should definitely try to find some of those folks, in advance, before they go. Get some names, get some contacts.”

Three Haiku from My Recent Camping Trip

I’m not sure whether the plural of haiku is “haiku” or “haikus.” Poetry experts, let me know what you think.

I do know, however, that supposedly “minor” language questions can actually be significant in terms of conveying information. For example, when I was planning our camping trip last week, I checked the web page for Golden Gate Canyon State Park, where we had reserved a yurt for our party of six, including three wheelchair users. The description read, “The yurts accommodate a maximum of six people. They have two bunk beds, one twin-size and one double-size…” I took that to mean that there were six beds total, but in fact there are four, and they are ALL bunk beds — which are, to say the least, quite a challenge for people who need assistance to get into bed, change clothes, etc. A lot of heads got bumped.

Well, I guess there are two ways to read the sentence above, but I think that changing the comma ( ,) after “bunk beds” to a colon ( : ) would have been a big help.

Nevertheless, we had a wonderful time in that beautiful, partly accessible, occasionally peaceful environment. We were a group of family members both related and chosen, and friends who are essentially family too.

My time there inspired a few short poems, the haiku(s?) below.

Tall pines loom over
loving thoughtless laughter,
lean into gray dusk.

Campfire eats logs, air,
matches, and thoughts. It feeds us
heat for meat and words.

Late night, our yurt yawns
us into its round belly,
to rest for travel.

GoldenGateStateParkAug2009 048

On Airports and Personhood

Realizing it’s been too long since my last blog post, I was going to comment on the fact that for some reason, the White House has apparently given two different jobs, two pretty important jobs, to one person. I’ll still try to write about that, probably this weekend. (Remind me, okay?)

But first, I have to react to a well-written and infuriating blog post by Canadian activist Dave Hingsburger. Seems Dave was sitting in his wheelchair in an airport, minding his own business, when an overzealous security guard came along and commandeered Dave’s luggage. When Dave objected, the guard explained that luggage could not be left unattended. Dave pointed out that he was right there, attending his own luggage. As the exchange escalated, it became painfully clear that, based on disability, the guard regarded Dave as essentially a non-person, unqualified to supervise his own suitcases.

I’ve spent a few thousand hours in airports myself over the years. For some reason, when I think about disempowering environments, airports rank right up there with hospitals and Social Security offices.

About a year ago, I wrote a poem about the kind of dehumanization I frequently experience in airports. So far I’ve had no luck getting it accepted for publication, so I’ve decided to post it here — as a gesture of solidarity with Dave.

    [NOTE: I’ve taken down this poem because it is under consideration for possible publication in a literary journal.]

Roxborough Park Hike, October 8, 2008

One footstep at a time I trudge the trail, only my steps are not footsteps but just as frequent decisions about where to place a wheel, at what angle; small changes of direction, planning ahead how best to keep moving, keep from going wrong. I think, Is this how other hikers hike? Maybe not regular walkers; their accustomed movements, one in front of another, come so naturally that they become unconscious. But when they take on tougher trails, trails involving variable terrain, or climbing, or winding, then they have to think about it. They examine the earth in front of them, assess its angles, guess at its texture — solid, ready to take weight, or sandy and prone to give way; slick, or rough enough to welcome foothold.

My own scrutiny of the trail involves different factors. I strategize how I might maximize the power reeling from my rear wheels, while keeping my front wheels from catching a rut or a rock that may jerk me off course. I compare the approaching waves, dips, slopes, and ridges with the shape of my wheelchair, plan how to steer around or over the hazards. My tactical considerations may be different from a nondisabled hiker’s, but I think we are both looking for the same kinds of challenges, the same pleasures.

The pleasures abound. All around me on this land that is part high desert, part lush creekbed, the miracles of autumn blaze like a newly-opened vein of gold. Walls of scrub oak, transitioning from green, through yellow, to brown, border my hike for a while. Then a view suddenly opens: broad weedy meadow, rust-red rock formations jutting skyward in parallel angles. Beyond that, mountains of granite and pine catch the bending sun.

And around one corner, an unexpected treasure: A clump of rabbit brush, heavy with yellow blossoms, each flower hosting butterflies who land, suck, clench and then spread their lovely black and orange wings. At least a dozen butterflies have chosen this bush for their banquet. Bees share the feast, tumbling and climbing over the blooms. It’s like a living, breathing crown of jewels.

I start moving forward again, after stopping to revel for a while in front of that burst of color and movement. I take in all the rich scenery, near and far, from the tiniest purple wildflower to the Rocky Mountain range miles away. The pleasures of this lake are not simply visual, however. I’m enjoying a physical rush which, again, I wonder if able-bodied hikers also experience. On this unpaved, bumpy dirt trail, my wheelchair and my body both navigate and absorb the earth’s curves. Even as I plan the best approach to an upcoming swale, the right speed and angle, when it arrives I must give myself over to it, feel it rise and fall me. Every pebble, every patch of gravel, every ridged and slanting stretch of trail brings its own vibrational tune, and these I take into my body as if learning a sacred song by heart.

sports betting philippinesAlong Asphalt Trails (the rest of the story)

My essay, entitled “Along Asphalt Trails,” appears in the Fall 2008 issue of National Parks magazine, published by the National Parks Conservation Association. My piece describes and reflects upon a few of my experiences with people and animals at Yosemite National Park and at Grand Canyon National Park. You can read the published essay online here.

There is a bit more to the story. The editor of National Parks magazine declined to publish one section of my essay, because of concern that it would encourage Park visitors to ignore posted warning signs! So I’m posting that section below. Enjoy.

falls.
Lower Yosemite Fall Trail, Yosemite National Park

Before we even see it, we can hear fresh water crashing, thousands of gallons at a time, down skyscrapers of rock. It’s an intense, hissing sound, yet also inviting, like a chaotic and joyous village song. We’re making our way steadily toward it, up a gently sloping asphalt trail. Other people pass us, going both directions. Most smile and nod or say hello.

As we reach a certain elevation, we see the falls — a lacy white deluge, carving a huge notch in the mountaintop, hurtling downward, thundering against granite. We’ve arrived at a wide, flat area with a wood-fence railing facing the falls. It’s an official viewpoint, so designated by the National Park Service. This spot provides a vista both beautiful and grand, and strangely old-fashioned, with the quality of a Bierstadt painting.

But other hikers are still passing us by, headed for even sweeter views. They trudge right by the carved sign that has stopped us — a red circle and bar canceling out the universal wheelchair access symbol. We’re tempted to defy this wooden warning, to follow the other hikers up the hill. It looks a bit steep, but do-able, as far as we can see — yet who knows what’s up around that shrub-obscured bend?

We started planning this day of hiking yesterday, using a small stack of brochures we picked up at the visitors’ center. Now we check our map again. Sure enough, the solid blue line indicating access dissolves into a dotted line, meaning inaccessible.

Robin doesn’t typically follow rules without questioning them, demanding justification for them, and then investigating the data for herself. “Let’s try it,” she says.

“Wait!” I call after her. But she’s already sped ahead. I watch as she navigates around a huge rock, turns a corner, and disappears behind some bushes.

Our attendant, Carrie, rolls her eyes and says, “There she goes!”

An older man walking downhill from that direction keeps casting his eyes back in Robin’s direction. As he passes me he says, “You shouldn’t try that.”

A couple of minutes later Robin reappears. When she sees us she stops, and with her index finger she motions for us to come. “Oh my god,” Carrie says. “She’s crazy.”

“Let’s go,” I say. Robin’s rarely led me wrong before.

Carrie sighs, but gets behind my chair to help push and steady it when the trail gets steep. “It’s your decision,” she says skeptically.

The first section of trail climbs gently, and mostly smoothly, except where it narrows and slants to curve around that enormous rock. With Carrie’s help, though, I get over that patch pretty easily. Then we see the next part of the path, pitching upward crazily for the next 25 feet or so. Above that, Robin sits waiting on a level spot. “No way!” I yell at her.

“Come on!” she yells back. “It’s fine after this part.”

“I’ll wait here!”

“You can get right up near the lower falls! It’s easy!” Then she runs out of patience, and turns back up the path, leaving me to decide.

I wait a few minutes. The trail here is narrow, and more crowded. People keep having to maneuver around me. Some squeeze past me with a look of annoyance; I’m just another obstacle on their way to the next scenic point. Others smile at me sympathetically, or murmur things like, “Not very wheelchair-friendly here, is it?”

The whole situation is getting on my nerves, so I say, “Carrie, I think we can do it, don’t you?”

“No,” she replies. “But whatever.”

“Seriously, if you just hold on to my handlebars to make sure I don’t tip backwards, I think I’ve got enough power to make it.” By that I mean that my chair has enough power.

“Seriously, I think you’re nuts. But it’s up to you.”

I look up the hill again. “Yeah,” I say, “we can do it. Ready?”

I rev my motor, and Carrie grunts as she launches her strength into the effort. We actually gain some elevation fairly rapidly, but complicating the challenge of the steep grade are the people. On a grade like this, I have to move steadily forward; if I stop, I risk slipping back. But occasionally someone in front of me will stop, either to wait for a straggling family member, or to look at a wildflower or a squirrel, and I have to shout, “Excuse me, please!” at point-blank range, loud enough to alarm them into moving quickly to one side so I can keep going.

Triumphantly we reach the top of the hill. The rest of the way to the lower falls alternates between level ground and slight inclines.

Soon, I’m pulling up next to Robin on a raw plank bridge over the river. My mouth opens wide, as I take in this view of both the upper and lower falls. We’re close enough to the latter for the spray to cool my hot skin, and to dampen my hair and clothes. Robin extends her left arm and hand toward the spectacle, as if introducing a special guest performer. “I know,” I say, smiling appreciatively. “It’s amazing.”

Then I add, “I’m glad we didn’t believe that sign.”