He's Not Disabled In Cyberspace

Paula Bock

He's Not Disabled In Cyberspace by Paula Bock The question is beamed from Seattle, over the Cascades, across the Columbia River and along 150 miles of sage and rock, a horizon empty of almost everything except telephone poles.

How has the Internet changed your life?

In less than eight seconds, the question zooms into a teenager's bedroom, where the only sounds are the whir of a computer fan, raw static from a modem, a gratifying "beep, beep, beeeeeeeeep." Connection.

Thu, 20 Jan 1994 21:14:24 -0800 (PST)
From: Mark Bessett - Bessett@u.washington.edu
It has made my world seem a little bigger, and a little more within my grasp. I think bigger with my life goals. Before I didn't share my thoughts at all; now there are many people with whom I can discuss them...I am opened up to the world of people of the like I have never been around before.

Mark Bessett, the 17-year-old who typed that reply on a hand-held mini-keyboard, was born in 1976, the year after the Altair company introduced the world's first personal computer.

In Bessett's lifetime, personal computers have become infinitely better: faster, more powerful, cheaper. During the same period, Bessett's body has deteriorated.

At 6, he began involuntarily walking on his toes, arching his back, falling - early stages of Duchenne muscular dystrophy, a harsh genetic disease that gradually erodes muscles.

It has slowly taken away his ability to walk, dress himself, manipulate a fork and knife. Holding a pencil is getting harder, another quiet loss for Bessett, an award-winning artist.

Eventually the disease will devastate his hands and, finally, his lungs.

A few years ago, Bessett's parents, John and Dorris, built a special addition to their small home to accommodate their son's wheelchair and hospital bed. It is the biggest room in the house.

Bessett's dream is to move out. He wants to go to college like his 18-year old brother, Eric. He wants to be independent. The disease has not swallowed his dignity. for his parents, the balance is between love and letting go.

For now, with a deep, confident voice, hair the color of winter wheat and blue eyes as clear as an active-matrix screen, Bessett appears to have transcended his ravaged muscles.

In certain ways, he is the antithesis of Microsoft computer wizard Bill Gates: Bessett is a teenager with the bearing of a man.

"I don't see myself as disabled," Bessett says. "I see myself as playing football and baseball even though I don't. ...Sometimes when I'm e-mailing somebody, I think of myself as being normal. It kind of puts you on equal footing."

Almost every afternoon when the yellow school bus drops him off, Bessett goes into him room and taps the phone lines, exploring what comes next.

"They say it's an incurable disease and I'm in the advanced stages. A lot of the damage has been done, so even if they found a cure I'd be screwed," Bessett says. "But I like to say I believe in God and not doctors. It's not just the fact that I'm going to die soon, so I better pray to God. Being faced with your own mortality, it can't help but make you look toward the deeper things instead of only superficial. If I'm going to die, I want to make sure there is something afterward."

And for a child of the computer age, what better place to look than the information superhighway?

On the Internet, where all existence is ethereal, Bessett has the world in his head. He is not disabled; he is wired.

Without rolling his wheelchair even a millimeter, Bessett can quickly reach millions of people.

An astronomy buff and philosopher, he can get access to all of Shakespeare and Dante, the King James Bible, the Koran, encyclopedias, the latest medical journals, updates from NASA about worlds in outer space.

He can cruise bulletin boards and virtual villages where folks discuss everything from hot rods to health-care reform to foot fetishes.

"I suppose I want to ask the questions everyone wants answered: What's the meaning of life? What's the afterlife?" Bessett says, "I guess I'd telnet infinity or something to find out. I don't know."

Date: Thu, 13 Jan 1994 17:08:54 -0800 (PST)
From: Mark Bessett - Bessett@u.washington.edu
Subject: Re: Bad Editor
I meant to send this a long time ago - Randy, Explain your religion to me. Is there a god or gods? Is there an afterlife? How about reincarnation? Who originated this theology? And why shouldn't I get you started? Are you afraid I won't be enough of a match for you, you intellectual stud...

Most important to Bessett these days is chatting with friends he met through Project DO-IT (Disabilities, Opportunities, Internetworking and Technology), a National Science Foundation program that recruits students with disabilities for careers in science.

During a two-week camp last summer at the University of Washington, 17 students learned, among other things, how to cruise the Internet and use computer equipment adapted for people with disabilities. They took the technology back to their homes, which are scattered across the state.

Friendships continue, albeit electronically.

"It's kind of like going to summer camp, but to a certain extent I don't ever have to go home," Bessett says.

That's fortunate, because Bessett, like many other DO-IT kids, lives in a rural town.

In addition, he spends most of his day in high school surrounded by teenagers, who, as is natural for teenagers, believe themselves immortal. Bessett knows otherwise.

"It's like I'm in a glass jail. I can see out and they can see in, but I can't touch anybody," he says. "I don't do the normal things most teenagers do: go out and get drunk, hang out and cruise. They can just get up and go whenever they feel like it. It's a more complicated situation for me."

So while his classmates drag Main Street looking for excitement, Bessett navigates the Internet searching for answers, connecting with friends who understand, such as DO-IT pal Marysheila Guichon.

Date: Sat, 8 Jan 1994 14:55:16 -0800 (PST)
From: Mark Bessett - Bessett@u.washington.edu
To: Marysheila Guichon - guichon@u.washington.edu
Subject: Re: Hi! How are you?
Hello, again. How are things going? I am somehow even more tired than the last time I wrote. Things here are going well compared to a lot of places in the world, at least. I'm having a pretty nice day. I took home a few college applications from school a couple of days ago, as well as a financial aid form; I want to go away to college, hopefully I will be able to afford it though. I'm afraid an aide will be awful expensive. I wouldn't mind going to the local community college and staying at home, if my parents didn't drive me so insane. I resent being treated like a small child all of the time, or like a plant that needs to be watered. And I don't like asking them to do as much as they do for me. Talk later, I better go - Mark

Guichon's reply: 
Hey, How are ya? Your e-mail made my day yesterday! :) (Note: the symbol for a computer smile) Thanks. Try not to let the pressure mount. If my sister say this message she would say please take your own advice! and then she'd add a nickname that I should not write. 
I have the same life. OK but not exciting. Relationships are causing more stress than anything and there are few of them. Poor Serena has had to listen until her ears are no more. As long as you keep fighting, negativity is not a bad thing. When I (was sick) ... I lost all my hair, anyway - don't give up. I won't let ya!
I don't know what you deal with every day, I can guess it is not even close to being a thrill. Christmas was great because my brothers came home and my sister and brother-in-law were home.
The things I always wish for are pretty much up to God though so who knows? We all went to look at lights too and then to midnight mass!!:)
Anyway, this year is an even year so it should be even all the way around!! I hop you have a great year, better health all the time and happiness...sorry, am in a sappy mood!!
Write when you can!
See ya

When Bessett responds, he'll likely type a printed page of text into the computer, roughly 2,000 bytes of information.

His computer will translate each byte into binary code, a combination of zeros and ones.

The thousands of zeros and ones will whiz out over the telephone line from Bessett's bedroom to a computer 30 miles down the road in Quincy, then to Wenatchee, to Edmonds, and finally to a computer at the University of Washington named after Steven Hawking, the renowned physicist who is physically disabled. From there, the data will be relayed to a computer in Marysheila Guichon's home.

This will all take a matter of seconds.

It is mind-boggling: The speed; the oodles of zeros and ones rushing through swaying telephone lines strung across the desert; the rate at which technology is expanding and physical distance is contracting.

It becomes a leap of faith to simply log on.

Beeeeeep. Connection. You have new mail. Bessett wrote:

Is our behavior determined by some sort of soul, or is it determined mainly by environment or a genetic code. Personally, I believe that our "soul" is what we are to become when the final bell chimes; who we are at our last breath. It's like Michelangelo said. He said he didn't create sculptures, he just unlocked the soul that was already there. 

You virtually die each time you experience something new, Bessett says, because each new experience changes you, makes you think differently.

The Internet has been that kind of experience for Bessett, molding a chunk of clay that was always there but never before sculpted.

I believe that God is everything that is possible. Everything is good, everything is God, except for the stuff that doesn't exist. There are two sides of existence. It's like binary computer language. It's like I exist here, and then you flip the switch, and you are there. I can't philosophically accept the option that I just exist - and then I don't. I don't think that's possible. I think of dying as a change, that's all... But tomorrow I will probably disagree with myself.

Tomorrow, Bessett will continue the search, his soul soaring through cyberspace, reaching for infinity.