Dona:

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What time is the June 12^th webinar on risk assessment (that one perked my ears as an emergency management professional—so curious how it works within the realm of O&M—risk management/assessment is/has been expanding widely into other professions, which is great to see).

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Thanks!

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Jen

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Dear everyone! John here:

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Some friends were recalling dear Leslie Peterson, so I went into the MS Word version of my book “Touch the Future” to copy and paste the first essay, which is a tribute to him.? I thought I’d paste it a few more times, here and there.? It’s pasted below.

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For those who may want to read the book, it’s available via all the major bookstores, audiobook venues, ebook options, including Bookshare.? I will just include the Amazon link here:

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https://www.amazon.com/Touch-Future-John-Lee-Clark/dp/1324035366

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Enjoy!

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John

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By Way of a Dedication

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The spider’s touch, how exquisitely fine!

Feels at each thread, and lives along the line . . .

—Alexander Pope, “An Essay on Man”

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Welcome, welcome. Steady, friend. Here’s a nice textured wall. I know, I know. You’ve stumbled into a new world. DeafBlind people have been here all along, but now everything is spinning faster than before. Everything you touch is alive with brave and precious pasts, which have now accrued and are opening up futures. This is the power of Protactile. We want to share it with you.

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What is Protactile all about? It’s hard to explain and easy to show. To say it’s a movement DeafBlind people are leading isn’t wrong. To say it’s a new language enlisting tactile properties never used before in human communication is to state a fact. To say it’s reinventing everything isn’t hyperbole. The following pages will reveal the truth of these statements, but how to introduce such an epic event? It is said that an epic poem must open in the midst, in medias res. A revolution has many origins, too many threads to trace toward the center. Perhaps that’s why the first book to emerge from the Protactile generation, the book you have in your hands, is a tangle of essays, any one of which can be the first to slide under your arm up to your hand and show you around.

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And the exhilaration of this moment! Not a day passes without my whole body exclaiming: Yes! And: Why didn’t we think of that before? And: I must tell everyone. A sense of jumping-up-and-down urgency overwhelms me. My joy, however, is tempered now and then by a pang, a lump in the throat. I think of my friends who have gone before me, who missed this moment, some of them dying just days before Protactile arrived. I like to think that deep down they knew. They were the beginnings, and my book is dedicated to them. Let me tell you about one of them.

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I must have been eleven or twelve years old when our family friend Leslie Peterson came to stay with us in Minnesota. He had marital problems, the nature of which was kept a mystery to me, and he was shortly to move on to Seattle for a fruitful chapter of his life. He later returned to Minnesota, where I, now an adult, received him as a fellow tactile person and comrade in our local DeafBlind community. Back when my parents offered Leslie the use of our unfinished basement, my father was involved with Minnesota DeafBlind Association, but he hadn’t yet gone tactile, as Leslie had. This meant that Leslie served as a role model for my father, me, and my younger brother. We all knew we would become quite blind like Leslie. We shared the same progressive-blindness condition that a certain percentage of Deaf people have called Usher syndrome. It is considered the leading etiology among DeafBlind people and is hereditary, though as a recessive gene it usually leapfrogs multiple generations. I am one of the fortunate few to be second-generation DeafBlind.

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Soon after his arrival and after my parents had shown him the hotel-style accommodations they had set up in the basement, I crept downstairs to watch Leslie. I found him pushing the pull-out sofa bed and rearranging the rug. He had moved the table. Then he stopped and turned toward me, reaching out with a hand. Fully expecting someone else’s hand to slip underneath it.

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Startled, I stepped back. Finding no hand to greet his, Leslie resumed his labors for a moment but stopped again. That’s when I fled upstairs.

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He would have known it hadn’t been my father or mother who had been there. My mother, who is Deaf, and my father, a member of the DeafBlind community, would have automatically let Leslie know of their presence. My failure to render the courtesy remains one of my life regrets.

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My sense of guilt notwithstanding, I loved hanging out with Leslie and doing chores with him. I soaked up countless details of DeafBlind ways. Talking with him filled me with what I later understood as intellectual pleasure. He was a born poet, a storyteller. His charisma was such that it cast a spell even when he wrote in English, a language in which he did not feel at home. Here is a passage from an email message he sent to our local community listserv many years later, recalling how he had first started to suspect that he had “eye problems”:

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We lived in the wilderness or plain on the southeast corner of the Montana where my father was minister. We visited the large family of the farm. The young children of us went outdoor during the night with a strong light in the midst of the farmland. We played touch and run. At the time I did not know that my vision were limited in the dark because I thought we all have the same . . . I saw the shadow chase after me and I know she is coming to touch me. So I astray and ran from the shadow. I was surprised she ran faster than I. So I ran hardly zoom. She chased closer and closer to me. I hit the tractor so bad. I had bad injury and glasses broke. There is no doctor or hospital because we lived in the wilderness. My mother was the best doctor as the mother nature to cure my sores and new pair of glasses.

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Leslie was ten times more compelling in American Sign Language. Every night during his stay, we eagerly gathered around him for a story. I believe it was that first night when he told us about the king and the spider.

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Once upon a time, Leslie told us, there was a king at war. His armies had struggled and lost, struggled and lost, struggled and lost. So the king was pondering what to do. When the sun roused him from his troubled slumbers, he saw a web. He tore it down and sat to ponder.

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The spider crawled up and swung here and there, building another web. When the king noticed this, he was annoyed and tore the new web down. He went back to resting his forehead on his fist. The spider swung here and there, once more building a web. The king was about to tear it down when he paused.

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The king realized that the spider would never stop. He was inspired by its perseverance, and rallied his armies. They went to battle again, and this time victory was theirs.

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Years later, I learned that this was the legend of Robert the Bruce, who was king of revolutionary and then independent Scotland from 1306 to 1329. After losing to the English in the Battle of Methven, Robert had become an outlaw, with his followers scattered and his wife held hostage. Some versions of the story have him hiding in a cave. Other versions have him in a hut. In the cave versions, the spider is trying to swing itself or throw a line to the opposite cave wall. In the hut versions, the spider is trying to connect with another beam of the roof. In some tellings, the spider makes this attempt two times before succeeding with the third, while most versions have it failing six times, with Robert the Bruce counting and remarking that he himself had lost to the English six times. If the spider failed a seventh time, Robert had decided, he would surrender to the English. If the spider succeeded, he would fight once more.

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Leslie must have picked up the story and many others during his time at the Montana School for the Deaf and the Blind. It is easy to imagine how the story had morphed once it left the pages of an illustrated children’s book, dancing away in the hands of ASL speakers. In no English version does the spider construct a web before the outlaw king observes it. It is always trying to make its first connection. There is never a web, to tear down or to leave be.

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For many reasons, it is fitting that Leslie’s version features extant webs being casually destroyed, only to have the spider weave another one. Leslie had spent much of his life as a DeafBlind person inexorably building a world, one unlike anything sanctioned by mainstream society. When I crept downstairs to watch Leslie get settled in, he was creating a particular kind of space. While he was able to maintain that space in our basement for the duration of his stay, his efforts elsewhere had been routinely and senselessly obliterated.

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For as long as I knew him as an adult, Leslie wanted to work. “But,” he told me, “I always fail.” He explained how the pernicious local vocational rehabilitation agency would set up a new job goal and proceed to play the game of “job placement,” where multiple hearing and sighted professionals got paid for helping Leslie secure a job that never materialized. This process was repeated many times over decades. Leslie made a little ditty out of the whole ordeal, which can be transliterated thus: “Goal, goal, goal, strive, strive, strive—fail! Goal, goal, goal, strive, strive, strive—fail!”

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One of his talents was carpentry. His original creations vibrated with excellence. Tables, chairs, bureaus, chests. He also built, virtually single-handed, the garage adjacent to his house. Yet no factory or furniture manufacturer would hire him. On the factory floor, how would he know to stay within the yellow lines? In the furniture workshop, how would he read the penciled numbers on pre-cut pieces of wood? He had his ways of doing anything. The factories and workshops weren’t interested in building a world with him; they preferred to keep the old one intact.

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Leslie’s efforts to find meaningful employment reached their nadir when he found himself doing light assembly at a workshop for mostly hearing and sighted disabled folks that paid below minimum wage. At least, he thought, he could just work, never mind the pay. At his work station, he developed his own logical, tactile world—just as he had in my parents’ basement. When he picked up each fresh box of parts to assemble, he placed it on the counter, opened it, and worked with the parts with his arms still inside the box. He took only completed work out of the box. A lady came up to his counter and shook the parts out of the box onto a tray. Everyone else was using those trays. Leslie tried to explain that it was much easier to find the parts inside the box than to chase parts rolling around on the tray. He had it figured out and was completing pieces faster than anyone. Yet supervisors kept on intervening and pouring the boxes’ contents onto the tray. At last Leslie gathered his things, put on his coat, took up his white cane, and left.

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After this experience, Leslie sent a quietly seething piece of formal writing to our community email group. “Who Is Disabled?” is an outstanding example of Protactile thought before the movement had even begun. Leslie’s profound challenge is worth quoting in its entirety:

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HE looks at HER.

HE learns SHE is the DeafBlind.

HIS mind SHE is the disabled.

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Really? Which is the disabled person? HE or SHE?

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Yes, SHE is disabled.

SHE can not hear any voice.

She can not read any text messages.

But HE is disabled, too.

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You might say, “No!”

Because HE is the hearing-sighted.

Of course, HE is DISABLED, too.

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HE can not talk to HER.

HE can not write a note to HER.

HE is not able to talk with HER.

So HE is the disabled!

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SHE can write her note to HIM.

She can figure how to talk with HIM.

SHE knows how to teach HIM to talk.

So SHE is ABLED or ENABLED.

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HE passes HER many times.

HE neglects HER so easy.

HE can not think what will HE say to HER.

So HE is disabled.

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HE see HER able to write HER note.

HE can read HER writing.

HE learns from HER how to Print On Palm.

So HE is abled to talk with HER.

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Then both disabled are gone, gone.

No more “disabled.”

Both are enabled!

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To this document Leslie had appended a footnote, a single sentence. “Many non-DeafBlind people are true disabled to the DeafBlind worlds,” it read, “unless they are willing to learn how to work with them.”

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At home, Leslie constructed a fantastic hive of an office, planned it in such a way as to place a thousand things within easy reach of his chair. From his command center, he hammered out emails bearing witness to injustices, advocating for change, and sharing jokes, poems, and stories; he co-moderated DeafBlind Minnesota, a vital email listserv resource; he organized weekly DeafBlind Club gatherings, where he loved to play chess, with chessboards he designed; and he carried out his duties as off-again and on-again president of Minnesota DeafBlind Association, an organization he helped to establish in 1977. A God-loving man, he attended Sunday meetings and poured out his soul, often in the form of ASL poetry. He knew the Twin Cities bus system like the back of his hand, and he carried a binder full of printed notes for the drivers instructing them as to where he wanted to get off. He couldn’t resist tinkering with everything, including the universally accepted and unquestioned white cane. The unique padded cane he designed brought him notoriety. And he wrote a poem, in English, in which the speaker turns out to be his cane complaining about its owner. “The True Story: The DeafBlind Man Abuses Me” opens with these lines:

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The DeafBlind man (aka DB) adopted me and use me for no reasons.

I really shock he abuses me all times.

Even he hang me on the hook.

Even he leaves me lone on anywhere.

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Midway through the poem, a hilarious passage:

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I wish I have 2 arms and 2 feets.

Then I could run away from him.

I could have some help.

I have no way to do.

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In the poem’s brilliant closing lines, before the speaker’s identity is spelled out, there is a beautiful gesture of reconciliation, of resignation. The cane-speaker and the DeafBlind man blend together:

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It seems DB can not

kill or destroy me.

He keeps me live and strong.

I learned to accept what DB does to me.

He labels me, “THE WHITE CANE.”

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During one DeafBlind Club gathering, Leslie turned to me and asked how I said “mother” and “father” in ASL. To say both together is clear enough to read tactilely, but in isolation, just “mother” here and “father” there, it’s impossible to tell the difference. The ASL

speaker places those words at their chin for “mother” and at their temple for “father,” which is visually distinct but ambiguous when felt by hand. After some discussion, we hit upon a possible solution, saying “mommy” and “father” or, alternatively, “mother” and “daddy.” We had similar conversations to puzzle out the problems ASL presented to us as tactile people. Protactile hadn’t arrived yet, but those discussions were a harbinger.

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At the age of sixty-six, Leslie learned he had stage-four cancer. He took the news in stride, and declined any treatment. He said he was grateful to God for giving him time to prepare. He continued attending DeafBlind Club and visiting me to play chess until it was time for him to go to a terminal care facility. The first time I entered his room there, I had to smile. Leslie immediately showed me around the world he had built there, not unlike the one in our basement all those years ago. He had hammered and screwed together shelving, set up tables just so, and put down strategic rugs. It was a cozy place in the middle of an otherwise sterile environment.

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We continued playing chess, our knees snugly interlocked under a narrow table. I noted the increasing tremors in his legs and hands. He told me that all his life it had been imperative to have some struggle, a challenge. Chess provided one source of the friction he craved. It was no contradiction but part of Leslie’s gambit, his art of life, that he greeted death with a sanguine calm.

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His funeral was jarring. I wasn’t the only one upset by how hearing and sighted people were orchestrating the service. Speakers stood in front of rows of people, and the DeafBlind attendees were separated from each other, each one sitting next to an interpreter who relayed the proceedings. Leslie was so amazing, the speakers all said. Which was true, but not in the way that he was. They had no idea. Afterward, at the luncheon, a friend turned to me, stricken. “Promise me,” she said, “you won’t let them do that for my funeral.”

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I hesitated to make such a promise. After all, we hadn’t been in a position to give our beloved outlaw king a proper funeral. The world wasn’t ours enough. But something told me that I could afford to make that promise. “Yes,” I said. “We’ll do it right for you.”

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This is a new device and works well.?

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This may not be a very encouraging response, but I feel it is appropriate to describe my experience attempting to train a gentleman who had a similar set of disabilities with one of the neckless devices manufactured years ago by Neurion Industries. . He was able to wear the device, and he indicated that he understood what the signals from the device meant, but he was unable to react appropriately. He would acknowledge that the device told him he was going to run into a wall. He would then run into the wall and seemed pleased that the device knew it ahead of him, but he was completely unable to change his behavior to avoid the collision, or in any way to improve safety in independent travel, Also, the Neurion device was supposed to detect drop-offs. While the warning would have probably done this guy no good even if it was dependable, testing with the device showed only about an 80% accuracy rate. There were very few drop-offs or downward stair flights in the facility where he lived, but with this degree of accuracy, it would not have been safe to let him use the device independently even if he was able to react appropriately to the signals he was receiving. ?I have tried to track progress of such signaling devices over the years, and I am still not convinced that a device is out there that is sufficiently dependable in terms of drop-off detection. As far as I am concerned, the accuracy of such a device would need to be around 100% and I simply do not believe that this has been achieved.

Michael Byington, Certified Orientation and Mobility Specialist

President of Kansas Association for the Blind and Visually Impaired, Inc.

> Membership Coordinator for Friends In Art of the American Council of the Blind

> 712 S. Kansas Avenue

> Suite 414D-F

> Topeka, Kansas 66603

> (785) 221-7111

> ByingtonCOMS@...??

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