I'm sharing this article with the author's permission.
----------
What kind of place is cyberspace for people with disabilities?
By Marie Deatherage
Let's get one thing straight right away. For people with disabilities, cyberspace is pretty much the same kind of place it is for people without disabilities. There is no such thing as a separate "special" lane on the information superhighway, no designated "disabled" parking zone in cyberspace. People with disabilities use the Internet pretty much the same way people without disabilities use it. To be sure, some disabilities require adaptive technologies of one kind or another, but more and more adaptive tools are becoming available.
The most appealing feature of cyberspace for people with disabilities might well be its accessibility. The net can be an essentially barrier-free place for someone accustomed to encountering one obstacle after another in the regular world. In fact, in the virtual world, nobody even knows you have a disability unless you tell them. Even if others can't make out your spoken words, your cyberspace communication can be fluent. If you can't see, but your computer converts text to voice or Braille, your cybervision is as acute as someone with 20-20 eyesight. Even if you can't use your fingers for typing and need a rod in your mouth to hit the keys, your Internet interactions can appear effortless.
In many ways, the Internet is the great equalizer. The all-time granddaddy leveler of the playing field. A place where you are judged, not by the color of your skin or the performance of your various body parts, but by the content of your contributions.
In cyberspace you are the content of your contributions.
The information revolution
The Internet is a revolutionary advance in immediate and nearly effortless access to almost unimaginable amounts of information. The ordinary citizen has never had this kind of power before.
Information is free, easy to find and seemingly limitless. I have yet to ask the net for something that it couldn't provide at least a partial answer.
For example, when my son was gnashing his teeth in frustration over a tough new computer game that didn't come with instructions, we thought about loading him and his wheelchair into the car, driving several miles to a computer store to see if any manuals had been published, and buying one. Instead, we searched for "Return to Zork" on the World Wide Web and found not one, not two, but three step-by-step manuals that amateur Zork freaks had written and contributed to the universe. Within two minutes we had downloaded and printed them, and Blaine abandoned his plans to throw the game and computer out the window.
When a friend wondered if a relative's young son might have Fragile X syndrome, we found a Web site that described its characteristics and included photographs of several children who had been diagnosed.
When Blaine wanted to know what resources exist to help a student with disabilities plan for college, we asked for and got advice and information from many students, parents and professionals across the country via newsgroups and e-mail, and found an article, "Access to higher education for students with disabilities: what is reasonable? what is fundamental? and who is qualified?"
When I heard a segment on National Public Radio about Java, a new computer programming language that promises to revolutionize the Web, I found an entire book, and a lot of other web resources, about Java.
When Blaine wanted to follow the Kasporov-Anand World Chess Championship match recently, he found he could follow it live or get a list of moves from each day's game on the Internet.
When I wanted to locate Internet disability resources, within a few seconds an annotated index of 100 different entries appeared on my screen. Citizens as publishers
It's not only the power to get information that's new, it's the power to give out the information you have. Anyone can cast his or her line into the net and leave behind something for all the world to see. You don't need a printing press - or anyone's permission or approval - to create a publication that becomes available to millions.
You can say absolutely anything you want, and trust me, a lot of people do. Because the information usually isn't screened, some of it is wrong. You could get in some trouble indiscriminately following all the advice handed out in cyberspace. Just like you would if you heedlessly followed advice given by the person standing ahead of you in line at the supermarket.
If you have a computer, modem and an economical provider available in your area, access requires very little money. I worry that people who don't have a computer and can't afford one may well be left behind in this new information age. And since many people with disabilities are economically disenfranchised because they are unemployed or underemployed, they are at risk of missing out.
Insofar as it is possible, I think many people with disabilities would do well to make access to the Internet a very high priority in their budget. I have seen it change my son's life. As a netizen, he is tuned into the virtual world to an extent he could never be in the physical one, because most of the real world was not designed and built with wheelchairs in mind. After more than six months on the net, there has never been a single moment, not one solitary circumstance, in which Blaine was at any disadvantage because he is paralyzed from the armpits down and shows some effects of hydrocephalus. And the Internet is the only place in his life where that is true. The only one.
But it occurs to me that much of his success is due to the fact that his disability does not affect his intellect. And the Internet does take a fair amount of intellectual sophistication. It's not like operating a television. You don't just take it out of the box, plug it in and push the power button. Many people with multiple years of higher education find the Internet an intimidating place. Intimidation in cyberspace
Cyberspace is a free-for-all, no-holds-barred, damn-the torpedoes kind of space, which is part of its charm. But it can be a bit hard on the faint of heart, and even those on the rising side of the learning curve.
When I unwittingly posted the same brief message twice on a bulletin board, I got a very nasty cyberlecture from a user (whose signature line included the description "gimp. flameproof. bites back") who flamed me for "sucking up" his bandwidth, and went on to warn me not to "clutter" the newsgroup again with my "newbie bafflement" until I had acquired proper training.
Apparently there is something about the Internet that releases people from social conventions that inhibit rude and uncivilized behavior in the in-person world. When you're in this part of cyberspace, it can feel like your ship wrecked and you landed on the island in Lord of the Flies. Maybe the quick and easy nature of net communication encourages a lack of reflection. There's no putting the letter in an envelope and resting it on the hall table while you sleep on what you wrote before it goes in the mailbox next morning. Or maybe it's the anonymity of the place. Perhaps the mere act of having to look someone in the eye while you say or do something does indeed keep a lid on things.
Not that the Internet is entirely lidless. Some newsgroups have moderators who weed out unwelcome input. Sometimes that reduces profanity and obscenity and inanity, but sometimes it just reserves the space for those deemed worthy. When my son posted a message asking for participation in a survey he was conducting on the net for a school project, he got a stern reply from one doctor who told him his posting had been deleted from that bulletin board because "it is a breach of netiquette to ask for help with one's homework."
Netizens are expected to possess a fair amount of knowledge and user savvy in order to participate in this information revolution. Which got me to worrying about people whose disability affects their cognitive abilities so they have trouble reading, reasoning, remembering, and so forth. Will the information age make them more disenfranchised in our society than they already are? How do people with cognitive disabilities use the Internet?
I really didn't know if people with cognitive disabilities use the net, and if so, how. So I posted the question on several newsgroups, and sent e-mail inquiries to people across the country I thought might have some answers.
[As with most anything you do in cyberspace, my search took on a life of its own. I was afraid that if I used the term "developmental disabilities" in the subject heading, there would be a lot of confusion because the definition varies from state to state. When I used "cognitive disabilities" I got replies from people with learning disabilities who said they simply reread more technical materials. Consequently, on some groups I referred to "people with mental retardation." That set off a flame war about my using the "r" word that was still going on after more than three weeks, with nearly 100 insults exchanged in a number of different threads on several groups. Then one person criticized me for not saying "mentally retarded people." Go figure.]
Presently, it looks like few people with "mental retardation" are using the Internet, although that may change as the quality and access speed of graphics and audio on the WWW improve. Especially with Java/HotJava - in which mini-applications are downloaded as part of the site - the Web is becoming more interactive and varied, and more friendly to those who prefer a format other than text.
"We have discussed a 'cognitively accessible' web site, as we already produce print materials in an easy-to-read, more cognitively accessible format, but to my knowledge, a truly cognitively accessible site does not yet exist," reported Rick Berkobien of The Arc of the U.S. in Arlington TX (http://www.metronet.com/~thearc/welcome.html).
A leading center on creating cyberspace accessibility is the University of Wisconsin's Trace Research and Development Center. Through the Center's site (http://www.trace.wisc.edu/), I found information about audiotactile snapshots (access to graphic images for people who are blind), the Info Curbcuts and Universal Access programs (to build accessibility into the National Information Infrastructure), and a project that would supply an amazing-sounding hand-held artificially intelligent "companion aid" to persons with cognitive impairments. There were on-line papers about cross-disability and specific disability net access issues, including cognitive and language disabilities. A related paper described the particular access problems faced by deaf people who are functionally illiterate in English, the current language of the Internet.
Dick Sobsey at the University of Alberta's Developmental Disabilities Center (http://gpu.srv.ualberta.ca/~ddc/INDEX.html) said its On-Campus program integrates a small number of people with moderate to severe intellectual disabilities into the university environment. "We've only just now got the program hooked up to the Net, but I'm convinced that we will be putting up information for them to use soon," Sobsey said. "There isn't much evidence of anyone else doing similar things yet, but I'm sure they will."
One program that is developing resources for users with disabilities is the Archimedes Project, part of Stanford University's Center for the Study for Language and Information (http://kanpai.stanford.edu/arch/arch.html). The project does research and education to provide "leverage for individuals with disabilities through information technology." The project already offers an accessor that enables users to fully access the Internet and any applications that run on its terminals purely by voice.
Associate Director Betsy Macken said use of the net by people with mental retardation "is a very difficult problem and one we haven't tackled as yet." She predicted that adding voice as another output modality and generating descriptions of graphics will be a first step. "One of our graduate students is working on delivering HTML documents with a series of different voices, for example, that will indicate the structure of the document as well as the content," Macken said. "She has in mind delivery to blind computer users, but I think it could be useful to the population you have in mind as well."
I found other useful access resources listed at Sun Microsystems' Enabling Technologies site (http://www.sun.com/smli/projects/enabling-tech/index.html) and at EASI's (Equal Access to Software and Information) home page (http://www.rit.edu/~easi/easidata/easidata.html). Each of the home pages listed here have links to other sites.
Besides examples of users who are blind or have mobility impairments, most of the reports about successful use of the Internet by people with developmental disabilities were of people with autism. According to Dr. Ami Klin, assistant professor of child psychology at Yale University, "many individuals with autism and related disorders appear to enjoy the Internet as a medium to establish relationships, maintain contact with people, obtain information related to their areas of special interest, about services, etc."
One father said that his son with Asperger's Syndrome relies heavily on the Internet to do his college assignments and design computer graphics. "Since he is able to do all these activities over the Internet," Wendel Simpson said, "the social deficits of Asperger's Syndrome are effectively 'screened out' so that he and his work are evaluated for content." Gavin Simpson also does neurocognitive rehabilitation therapy over the net, using therapeutic software programs specifically designed for people with strokes, traumatic brain injury, and so forth (see some examples at http://www.inetdirect.net/pss/). Others are working to deliver music therapy through cyberspace.
Jim Sinclair, who coordinates the Autism Network International (http://www. students.uiuc.edu/~bordner/ani.html) says "the Internet has played a major part in the development of autistic culture in general and of ANI in particular." According to Sinclair, "interpersonal communication becomes much less complicated when there is only one aspect of communication (words) to pay attention to." He said that "even highly verbal autistic people almost universally have difficulty interpreting nonverbal communication. On the Internet, neurotypical people don't expect us to be able to see their faces or to hear their tone of voice, so they tend to be more careful to clarify their meaning.
"They can't see us, so they don't know if we're displaying abnormal eye contact or bizarre prosody or rocking or hand-flapping or otherwise looking 'weird' when we're typing to them," Sinclair said. Even so, he said that "we still have thought processes, response styles and communication characteristics that are different from most people's. We still don't fit in. This can be a source of major disappointment and discouragement if a person has had expectations of being able to 'pass for normal' on the Internet."
But, Sinclair continued, "there are other autistic people to meet on the Internet! High-functioning autistic people are not very numerous, and we tend to be quite socially isolated. Most of us haven't had the opportunity to meet other people who are like us living in our own neighborhoods. The Internet expands social horizons so that scattered and isolated autistic people living in all parts of the world can meet each other, providing a much larger pool of potential friends."
Sinclair said that some go on to travel great distances to meet and spend time together face-to-face.
Another on-line presence that establishes links among people with disabilities is the Disability Solutions Page (http://www.albany.net/~dsw) that features bulletin boards, information sources, links and a multi-user dimension that enables participants to simultaneously converse and collaborate on disability issues and design needs (telnet to ViKaR MUD at 131.46.89.7 port 9999 or vikar.unix-ag.uni-kl.de 9999). David Whalen, one of Disability Solution's co-founders, was excited about including people with cognitive disabilities in the project.
"I suggest modifying a telnet client program which could have simple buttons to display or communicate programmed texts or symbols or sounds," Whalen said. "Other persons could sign on into the multi-user dimension and respond or mentor. I'm thinking of a ton of possibilities. We could have schedules set up for mentors."
There are a few discussion groups that already include people with cognitive disabilities. One mother reported that her son with Down Syndrome (DS) participates in the DS chat room on America On-Line (AOL) and has several cyberpenpals. "He dictates to me or selects prewritten sentences or phrases to write most of his notes," Pam Wilson said.
Susan Crites reported that her bulletin board system, Colorado Meeting Place, includes "users with cognitive challenges from time to time, and occasionally children with developmental delays whose parents type and read for them."
"I have noticed that members of this group always jump in with replies and encouragement," Crites said. "Often, though, the person only stays involved for a few interchanges. I wonder if this is due to disinterest, or a lack of someone to help them log on. If the latter is the case, a 'hot-booting' program might be a useful thing for someone to develop. If it's the former, then I would have to make a guess that net interaction is not as satisfying to them as live personal ones."
Richard Jacobs, director of Valley Mountain Regional Center in Stockton CA echoed the sentiment. "The Internet would be an additional but not primary mode of communication for people with developmental disabilities, with community integration much more important," he said. "AOL has a People First forum in its Disability section, but it doesn't get used much. It would be nice to see People First chapters connected via the Internet, but access to equipment and on-line time may be a problem." What does it all mean?
I collected information for this article over the course of a month. In the midst of my searching, collecting, and analyzing, I began to question my question. When I asked if and how people with mental retardation use the Internet, was I merely reflecting my innate knee jerk tendency to assume that everybody with every disability always be included in everything? Should I have begun by asking myself how much good the Internet would do people with mental retardation?
As I explained in the beginning, the Internet has opened my son's universe. The information he gathers is very useful to him, and sometimes he wouldn't be able to get it any other way. Cyberspace gives him access to a world that his disability otherwise closes off. But am I generalizing too much from his experience?
I spend a fair amount of time socializing with adults with "cognitive disabilities" or "mental retardation." I wouldn't presume to speak for them, and their preferences and needs are as varied as they are. But if you pressed me, I would have to say that I'm not sure that what is missing in these friends' lives is information. I think what they're missing most is human beings. Someone wanting to spend time with them without getting paid to do it. Someone to enjoy their company. Someone to accompany them to professional wrestling matches, for instance. Someone to drive them to the beach. Someone to have them over for dinner.
My particular friends may want increased touch more than they want increased technology. I still worry about people with certain disabilities becoming more disenfranchised in the information age. But as I reflected on the information I was collecting, I started to wonder. As I saw creative minds begin to generate excitement about the issue, I began to picture new grant programs being developed to study the use of cyberspace by people with mental retardation, more programs being piloted, more meetings convened, more staff trained, more data collected, more reports published, more evaluations performed, more funding sought.
And I asked myself, what if , instead, this money and energy went toward finding them friends. What would be the best and wisest use of limited resources? Do the powers that be in the disability field begin endeavors by asking that question? When we consider whether something can be done, do we also ask whether it should be done?
It would be nice if we could do all things for all people, but when I look at the trends emerging in the present political climate, I think we're looking at fewer resources in the days and years to come, not more. For people with some disabilities (like mobility and sensory impairments, autism, for example), access to the Internet might be among the most important priorities in their lives. For others, it might be way down the list. With a lot of creative effort, it may well be possible to develop tools and create support structures to enable people with mental retardation to use part of the Internet.
But in the meantime, who will have them over for dinner?
Marie & Blaine
webehere@teleport.com
Portland OR