Braille Monitor                                                                                                           October 2004

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Progress in Hawai'i

From the Editor: The following article appeared in the June 29, 2004, edition of the Honolulu Advertiser. It reports on a five-day camp for teenagers and young adults conducted by the state agency for the blind in Hawai'i, Camp Ho'pono. According to NFB leader Curtis Chong, who grew up in Hawai'i, it demonstrates the impact active participation by Federationists can have on a state program. Lea Gruben and Katie Keim work for the state agency, and Katie's husband Virgil Stinette volunteered alongside them during the camp session. Their infusion of Federation philosophy and commitment to their campers clearly elevated this program to an unforgettable experience for campers and counselors alike. In passing the article along, Curtis commented that in his day--long before the New Visions Program--the agency would never have urged and encouraged kids to make such strides. Here is the story:

Boot Camp for the Blind

by Michael Tsai

"If you're blind, you're invisible to the rest of the world. ... I'm usually a loner. Here, I feel like I'm with people that I can trust." -- Karl Pangilinan, camper and Ho'opono employee

He makes it up the steps. With just the vaguest suggestion of shape and light registering through his eyes, he even makes it to the lip of the diving board.

But on this take‑it‑easy first day at Camp Ho'opono--a five‑day retreat designed to help blind teens and young adults make the transition to higher education and the working world‑-diving into the deep end of the pool is a belly‑flop of faith twenty‑year‑old Brandon Young just isn't ready to take. He freezes.

At the opposite end of the pool Young's fellow campers silently wait, eager to hear the great splash that will set the tone for the days to come.

Young's struggle for composure shows in the deliberate breaths he draws through his pursed lips and in the almost imperceptible twitch of his fingers. A long minute passes.

The tension is too much for counselor Katie Keim. "Grab your fear by the throat," she hollers from across the shallows.

Young breathes deeply as if finally ready to make the dive, but then his shoulders slump, and he reaches back for counselor Jon Koki's hand. He steps off the board.

Koki and the rest of the staff and volunteers expect as much, especially this early on. The nine campers assembled here range in age from fourteen to twenty-five. Some come from homes where old ideas on the limitations of the blind are still strong. All have been through a state public school system many say is ill‑equipped to provide the intensive, day‑by‑day training and instruction blind students need to live and function independently.

Like many of his fellow campers, Young comes to the camp with a resum´┐Ż of hard‑earned accomplishments. Diagnosed with retinitis pigmentosa at age ten, he struggled to keep up in academic and social environments where people meant well but "really didn't know how to help me."

With the support of a strong, vocal mother, Young made his way up the scouting ranks, becoming an Eagle Scout four years ago. A graduate of Kalaheo High School, Young now attends Windward Community College, where he takes liberal arts courses to prepare him for the jump to the University of Hawai'i at Manoa. From there Young hopes to go to law school.

"I want to be as independent as possible," Young says. "I want to be treated like everyone else." For that to happen, Young knows he'll need to push himself even harder. He can't just make it to the end of the board; he has to dive.

"A lot of activities that are geared toward the blind involve leading them around and doing it all for them," says Lea Grupen, a supervisor with camp sponsor Ho'opono, Hawai'i's Rehabilitation Center for the Blind and Visually Impaired Persons. "They aren't challenged. This camp is about pushing them, about challenging them to ... "

An enormous splash interrupts Grupen mid‑thought. Campers turn their ears in time to hear the bloop and sizzle of bubbles rising to the surface just in front of the diving board.

" ... challenging them to do more," Grupen continues.

After some reassurance from Koki, Young had returned to the board and, swallowing hard, executed a textbook cannonball. A chorus of cheers rises as Young's hands, arms, shoulders, and head break the surface. He sputters and spits, coughs and laughs, then dog‑paddles toward Koki's voice at the edge of the pool. Grupen smiles broadly. It's going to be a good camp.

According to the state's registry of blind people, there are roughly 3,000 people in Hawai'i whose vision qualifies as legal blindness or worse. Keim, a rehabilitation teacher at Ho'opono who has been blind for nearly ten years, says the actual number is likely double that. The precise figure is particularly hard to determine in a state with large Asian and Pacific islander communities, where people with visual impairments may be reluctant to seek help, choosing instead to get by with the aid of family and friends.

Ho'opono operates as part of the state Department of Human Services' Vocational and Rehabilitation Services for the Blind Division. Its New Visions program is dedicated to helping its clients build the skills and confidence to find employment and live independently.

As Keim notes, advocates for the blind make up the longest‑standing movement among disabled communities, and as such often benefit from separately designated programs. "But," Keim says, "blind [people] are also the least employed because of the misconception that they are less capable than people with ambulatory or hearing impairments."

By learning Braille, walking with canes, and learning other compensatory skills, staffers say, people who are blind also can work through their own prejudices, accepting the tools of self‑sufficiency as positives rather than markers of their disability.

This first‑ever Camp Ho'opono is designed to provide, among other things, a shock to the system of young adults unsure of their capabilities and hesitant about finding out. "We'll push them, but we'll also take time to reflect on how they each relate to blindness," Grupen says. "We want them to get not just their skills but their attitudes right."

Attitude is hardly a problem for Keao Wright. Blind since birth, the Castle High School sophomore‑to‑be is among the most advanced students at the camp. She's proficient with her cane and ranks in the top five nationally in reading Braille. Last summer she read nearly 6,000 Braille pages.

Wright likes novels best. Her favorite is The Count of Monte Cristo. But like other teens she's also passionate about music and surfing the Internet. Her dream is to work alongside Steve Bauer, a blind DJ on ACB Radio Interactive, an Internet station.

Wright chats regularly with online friends via MSN Messenger and the "Our Place" chat room. At school her friends tend to be other students with special needs. "It's kind of hard because I'm the only one in my school who's blind."

Wright says her school "is not really equipped, and a lot of people don't understand about visually impaired people." That's why, despite spending much of the first day at camp by herself, Wright is quickly warming to the idea of sharing time with peers who understand what she goes through each day. "I've never been away from home this long before," she says. "I think it's going to be fun."

Still there are bridges to cross. However politely, several of the partially sighted campers are making clear distinctions between themselves and those who are totally blind. A few say they're here just to have fun, that the skills training doesn't apply to them. "A lot of people are taught to cling to that teeny amount of vision they have," Keim says. "But by doing so they limit themselves."

The nine campers have come from around O'ahu, the Big Island, and Kaua`i to Camp Erdman, located off a remote stretch of highway in Waialua. Though a few have met before, their interactions in the early going are tentative at best.

To build a sense of trust and connection among the campers, organizers require each to wear sleepshades during the exercises. This puts the campers, who range from borderline legally blind to completely blind, on equal footing--even if that footing is less than stable.

"What?" Gilmore Guirao, seventeen, from Kaua`i, can't believe his ears. Guirao was willing to use the cane when asked and willing to put on the sleepshades for the first activity, even if, as he says, "I don't see the point in all of this."

But no one told him that the activity would involve holding hands with his fellow campers, stepping in unison onto a horizontal telephone pole, and balancing long enough to sing a chorus or two of "Row, Row, Row Your Boat." He scowls.

Guirao is reluctant to talk about the condition that has rendered him legally blind. He's even more reluctant to use his cane in front of sighted people. Walking among a group of campers at the pool the day before, Guirao misjudged a step and fell on his rump, drawing a concerned look but no sympathy from Grupen.

"I hate to say it, but that's what happens when they don't use their canes," Grupen says. "It's hard for them when they're around other teenagers, but it's something they have to learn to do. They have to get over that stigma."

Actually, what Guirao and the rest have to do right now is find a way to get on that telephone pole. "What?" Guirao grumbles again as the instructions are repeated a second and third time. His lips mouth the word over and over, even after he's stopped talking.

The exercise gets off to a rocky start. Some campers don't want to hold hands. Some step before the others are ready. A couple of partially sighted campers cheat with the blinders, wearing them at an angle over their sunglasses so they can see their feet.

Finally, Karl Pangilinan, a new employee of Ho'opono invited to the camp as sort of an older role model, speaks up. "Let's step up on the count of three and call out when we're on," he says.

The idea sounds good but isn't easy to execute, balance being ever an issue for the blind. But Pangilinan has broken the silence, and a flurry of fine‑tuning suggestions has the group standing long enough to get through the first "gently down the stream."

"Merrily, merrily" ... "Aargh!" Guirao loses his balance and steps off the pole, followed by fourteen‑year‑old Bradon Espiritu. Both hop back on without missing a beat.

Merrily, merrily ... Young wobbles on one leg before falling off, triggering a domino effect from eighteen‑year‑old Hilo resident Roxanne Ramones to nineteen‑year‑old Kaua`i guy Crescenzio Lagazo.

Life is but a dream.

The next drill calls for campers and counselors to balance on a set of one-and-a-half‑foot‑tall stumps arranged in a circle. From there they'll make a full rotation, carefully stepping from stump to stump in time with each other.

The exercise is usually run for sighted people, with only half the group wearing blindfolds and the others guiding. But the Ho'opono philosophy calls for everyone to be equal, so all of the campers and counselors don sleepshades as a gesture of mutual trust.

The stumps themselves are just cleanly cut sections of tree, about eighteen inches in diameter, rooted to nothing. As the campers step, the stumps shift and wobble on the soft, weed‑strewn ground.

The participants make glacial progress at first as they link hands and take their first probing stabs into the dark void around them. Once foot finds stump, the off‑balance campers must carefully coordinate their movements with the people in front and in back of them. Jolene Mariano‑Hardy of Kaua`i, the other fourteen‑year‑old in the group, emerges as a surprise leader in the exercise, calling out stops and starts and doing her best to encourage her increasingly anxious peers.

The tension is high, to be sure. Young, the most physically imposing of the campers, struggles to balance on one leg as he feels for the next stump. Espiritu, the soft‑spoken kid from Kona, clings to volunteer Virgil Stinnett (Keim's husband), his face frozen in barely restrained terror.

Espiritu's fingers have dug into Stinnett's forearms by the time the campers complete their fourth step. The crashing sounds of the nearby ocean fill the long silences that follow each hard‑fought advance.

Before the next step can be made, the undersized stump beneath Young's feet topples beneath his shifting weight. Young tries to stop himself with one leg, but the ankle buckles, and he lands flat on his back, dragging Wright down with him.

Tension broken. The other campers and counselors remain standing on their stumps, but Young's fall has rattled them. A vote is taken, and the group elects to continue for at least a few more steps. "Whoa!" Guirao yells as he lurches onto a low stump.

Nearby Espiritu has gone rigid with fear. His lips move, but the words are inaudible. Stinnett leans in close. "Bradon's coming down," Stinnett tells the group.

Tears of relief stream down Espiritu's face as soon as his feet touch the ground. He takes a seat next to Young on a wooden platform. The two of them sit there silently, heads lowered in undeserved embarrassment and disappointment, as Stinnett tries to console them.

"Today they did something they've never done before," Grupen says. "That's enough. That's a lot."

In the wrap‑up huddle afterward, the group talks through the issues brought up by the exercises-‑the collective fear, the power of communication, the need to trust and to be trustworthy. Pangilinan is taking Young's accident hard. He feels he should have done something to prevent it or at least to soothe the sense of distress that rippled afterward.

Away from the group the twenty-five‑year‑old says he's having difficulty being the positive role model he's expected to be. "My problem is ... I don't know how to express what I'm thinking," he says. "I'm not really a role model. I'm just doing what I'm doing."

Counselors and fellow campers disagree. Through the first two days Pangilinan's opinions have commanded the most attention during group talks. As the oldest of the campers, Pangilinan is keenly attuned to the anxieties and insecurities of his younger peers. While he tries to demonstrate the self‑confidence and self‑sufficiency Ho'opono preaches, he knows why many of the sighted campers refuse to use their canes in front of other people and why most are reluctant to admit the extent of their blindness.

"We're raised in a society where it's embarrassing to be blind," he says. "If you're blind, you're invisible to the rest of the world. People see what they want to see in you." Pangilinan, who was born blind, says he's learned the hard way to be independent, living on his own off and on for the past six years.

His experiences have made him wary of other people. He'd love to see more talking ATMs installed at banks so that he wouldn't have to ask other people for help. "You never know who you can trust," he says. "I've been jumped on the street twice. Once someone took my cell phone. The other time was for my cigarettes."

But the camp has been something of a revelation, he says. "I'm usually a loner," he says. "Here, I feel like I'm with people that I can trust."

Day 3 of Camp Ho'opono promises to be the most challenging, with campers taking on a twenty‑foot climbing wall and a high‑wire rope traverse. No one is sure what to expect after the traumas of the previous day, but a night of "socializing, flirting, and teenage stuff" seems to have repaired the group's spirits, Grupen says.

Sure enough, while only one camper makes it all the way to the top of the wall, everyone-‑including bashful Ramones, who started the day absolutely refusing to get roped up-‑has given it his or her best shot.

The rope course is more daunting. The blindfolded campers must first climb an aluminum ladder some twenty feet to a tiny platform anchored against a tree. Two by two and facing each other, they must then walk sideways along parallel suspension wires high above the ground, grasping each others' hands for balance. The climbers are secured by belay systems, which will keep them suspended should they slip.

Wright and Pangilinan, the only two totally blind campers, are paired together. Trim and athletic, they both scale the ladder with relative ease, pausing only at the treacherous juncture where the top of the ladder overlaps the platform.

Once on the wires, however, they soon lose their balance. A few steps in, Pangilinan finds himself leaning too far back, his body bowed from head to toe. Wright hangs on, her own body bent forward at the waist. She bends her elbows and tries to straighten herself, but it's no use. For two of the most empathetic campers here, it's a problem of over‑protectiveness: Each believes they're holding the other up.

Young is the next in line, but his journey lasts just five rungs of the ladder before a rising fear overflows. He had been dreading the exercise all morning. He choked down his fear just to put on the harness, held it tight in his chest as he took his first steps up the ladder. Still it's too much to contain. He wills himself up one more rung before stopping.

With the same fortitude he showed on the diving board two days earlier, Young refuses to take off his blindfold and descends the ladder unassisted. Back on the ground, however, Young is disconsolate.

"He thinks he failed," says Koki, the Ho'opono manager. "I told him that people put expectations on others and on themselves. He pushed himself to do the most he could, so for him it was a success."

Three days into the camp that's just the way the now close‑knit group of campers feel, too. One by one they make their way over to congratulate him.

It's just past twilight on the last full day of camp when Koki, an accomplished musician, unpacks his acoustic guitar for a round of singalongs. The campers are strewn around a campfire tended by Ho'opono administrator Dave Eveland.

"You are my sunshine, my only sunshine ..."

It was another challenging day for the campers-‑a kayaking trip off of Mokule'ia in the morning and a one‑mile hike over rock fields and thick California grass in the afternoon-‑but all finished well, demonstrating the sort of confidence in themselves and trust in each other needed as they enter the next phase of their lives.

"You make me happy when skies are gray ..."

If this last night together is sweet sorrow for the Ho'opono staffers, the campers themselves are unwilling to part without a proper party. Keao, a past winner of the Hawai'i Stars karaoke competition, joins Koki for a go at "What a Wonderful World." Mariano‑Hardy, the fourteen‑year‑old from Kaua`i, dances hula to "Beautiful Kaua`i."

And all the campers and counselors display questionable acting talents in a trio of laugh‑out‑loud skits. Even the curmudgeonly Guirao gets into the act, hamming it up in old‑lady drag.

"You'll never know, dear, how much I love you."

The party wraps up with a series of heartfelt thank‑yous from the staff that has Grupen and Keim, the self‑proclaimed "queens of mean," bawling buckets. "I can't tell you how proud I am for what each of you has accomplished," says Keim at the start of a speech that has campers laughing, crying, and crying some more.

Keim thanks the campers for reaching out to each other and for stepping so far beyond their comfort zones. She urges them to keep in touch with each other and reach out when they need support. "Don't let this go," she says.

"Please don't take my sunshine away ..."

Then, with the last of the fire flickering to darkness, Pangilinan, the reluctant role model, finally finds those words he's been looking for. "You know what?" he says to the group. "You guys are cool. You may be blind but ... but screw it. You're going to do what you're going to do, and no matter what people think, it's okay. You guys are cool."

Tips for Parents of the Blind and Visually Impaired

Since the first organized advocacy movement for the blind some 80 years ago, the philosophy behind raising children who are blind or visually impaired has changed dramatically. Ho'opono rehabilitation teacher Katie Keim shares a few tips for helping children succeed with their disability.

Stay positive: "The physical obstacles are easy to take care of. It's harder, and more important, to help your child understand that they are normal despite their blindness. They can do whatever they want to do. They can achieve whatever goals they set for themselves, even if they need to approach them differently. I can't overstate how important it is for parents and their children to understand this."

Make them read: "Yeah, it takes effort to learn to read Braille, and it can be tough fighting for your child to get timely transcriptions in school, but it's important that they be able to read and write and keep up with the rest of the class. Some teachers will say they don't need to read because they can follow along with the class, but that leaves your child illiterate."

Cultivate social skills: "Blind people don't have the visual references that the sighted world has, so they don't always realize that certain things they do are inappropriate or distracting in public, and these kinds of things will set them apart from other people. Be tactful and supportive, but don't let them hide behind their disability. Find constructive ways to teach them proper behavior so that they will be accepted in the world they will have to make a living in."

Let them fail: "Part of helping them to develop like other children is letting them do things other kids do. Every kid who rides a bike will fall down at some point, so why is it not all right for a blind child to fall? You don't want to be reckless or negligent, but you have to allow them to learn from their failures and mistakes just like anybody else."

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