Assistive Technologies; Awareness and Opportunity

In Russia, children with disabilities can be denied an education. In America, we have IDEA. In Brazil, it is acceptable to deny employment to a person with a disability, specifically because he or she is disabled. In the United States we have the Ticket to Work program. In Italy, there are buildings with steps but no wheelchair ramps. In the U.S., we have the Americans with Disabilities Act (ADA).

Even though we do not accept discrimination as inevitable and have made strides to assist the more than 52 million Americans¹ with disabilities by passing legislation including the ADA and the Tech Act, why, then, are there so many people who are not getting the technology that will enable them to succeed in school, in the workplace, and in everyday life?

''Losing It'' is a documentary that examines the experiences of people with disabilities around the world. Sharon Greytak, the New York resident who conceived of and directed, ''Losing It,'' did so because she wanted to know if people in other countries had similar experiences to her own.

Greytak introduces viewers to six people in five countries. In Russia, Hong Kong, Brazil, and Italy, the assistive technology presented was comprised of crutches, an old wheelchair, and a wheelchair ramp. In the United States the technology consisted of a mouthstick and speech-recognition software that had not been upgraded in at least two years.

While the documentary was in no way a scientific study on how people with disabilities are treated, it allows us a glimpse into how these people with disabilities see themselves and how they are perceived by others. The lack of equality and accessibility in these countries is accepted as a way of life. As one of the people with whom Greytak visited said, ''This is the way things are.''

One person who refused to accept this discrimination was Carol. Struck with Polio when she was five years old she was determined to follow her own vision, which did not include the restrictive parameters of the 1950s and '60s mainstream culture. A quadriplegic, she had to fight to get an education, and actually wrote President Kennedy a letter, telling him he could pay for her schooling now or he could pay for her disability forever.

Even after earning a Masters Degree in Social Work, Carol, a mother of two who holds a prestigious job in a government agency, remembers that people were skeptical she would be able to work. More than 20 years later, not only is she working, she is helping others do the same.

Overseeing training programs and compliance at her organization, Carol's position involves her assisting employees with regard to reasonable accommodation, civil rights issues, and the Americans With Disabilities Act, among other laws. She supervises programs to help her employer and employees understand the consequences of non-compliance with the laws.

Carol uses some assistive technology (AT) at the office. She was able to work before she had access to this technology so she does not think it has afforded her more opportunity in the workplace. But she does believe technology is opening doors for those entering the working world.

''Today people do not have the ability to say, 'you can't' as much (as they did in the past) because there is so much you can do with technology,'' says Carol. She uses the example that she cannot be a ballerina. ''That's reality,'' she says. ''But, today if you are disabled and you want to dance, you could do choreography using a computer.''

In her own life, Carol looks at technology as an energy-saving device, allowing her to work longer with more ease and to accomplish more in less time. As she ages, she gets tired more quickly and she finds technology helps minimize the fatigue.

Carol's typical workday begins by reading newspapers online (she is unable to read a hard copy unassisted). She uses speech-recognition for a significant number of tasks, including corresponding via e-mail and traditional mail, editing documents, and dictating telephone and meeting notes.

Remembering the first time she used speech-recognition, she recalls, ''I sounded like a Russian spy,'' and she wondered if the technology would ever be viable. Using more recent versions of speech-recognition software, however, ''changed the world'' for her. She now can write five and seven page reports without difficulty.

Carol uses a desktop microphone with the software because it allows her more independence. She marvels when she reflects on the difference between writing a 2000 word report with speech-recognition versus a mouthstick.

One of the biggest issues Carol faces while facilitating compliance is that not enough is done to let others know what is available. While technology allows people to do more, it is useless unless individuals know what exists and how it can be implemented.

She gives the example of an employee who began having vision problems. The only accommodation this employee needed was an enlarged computer screen. Apparently, no one was aware the technology existed to enable this person to continue working. Had Carol not had a friend with similar needs who used the same type of technology this employee needed, the employee would have been out of work.

While Carol's personal experience facilitated accommodating this employee, it demonstrates the reality that we have a long way to go when it comes to increasing awareness.

In my practice, I often meet with people who become overwhelmed with emotion when they learn how assistive technology can help them. I also speak with counselors and therapists who are unaware that appropriate technology exists for their clients. These experiences are echoed by others in the industry.

Rod McMichael, Director of Marketing Distribution at the Prentke Romich Company (PRC), a manufacturer of assistive devices including augmentative communication devices for people with severe disabilities, is always surprised when he meets people who work in augmentative communication fields but have never heard of PRC, a company that has been in existence for 35 years. McMichael believes that knowledge, or lack thereof, is the biggest factor preventing people from getting assistive technology.

Silvio Cianfrone, president of Nanopac, has had similar experiences of people needing technology and not knowing where to find it, or if it exists at all. ''They come through our doors and ask, 'Where have you been?''' He tells them Nanopac has been in the same building for 14 years.

Individuals often believe ''there must be something out there'' that can help them but they do not know what it is or where to find it. And if there is something available the presumption is that the technology is beyond their reach. Even technology that enjoys widespread awareness is not always implemented in the volume we might imagine. Consider that there are approximately 28 million hearing impaired people in the U.S. but only one in five people who could benefit from a hearing aid use one.²

One of the strengths, and conversely, one of the weaknesses, of assistive technology is that it is constantly changing. Speech-language pathologists, audiologists, occupational and physical therapists, orthopedists, and counselors do not always have the knowledge or the resources to provide information to clients about AT.

While conferences on assistive technology are a valuable resource in finding assistive technology, one manufacturer, pointing out that conferences attract the same crowd every year, compares these gatherings to Old Home Week. Going to AT conventions, one can expect to find the same manufacturers displaying new versions of their products. The booths are in the same location each year and the people staffing the booths are the same.

Even the visitors walking the floor have familiar faces and name badges. These counselors, doctors, and therapists already know about the technology and the clientele who will most benefit from them. What is missing from the equation are the people who do not know what is out there.

One vendor of assistive technology summed up the situation by saying, ''there is too much technology and not enough publicity.''

This certainly was the case for Billy, a key grip in the entertainment industry, a general contractor, licensed electrician, and a martial arts instructor, who communicates with people all day long.

Hard of hearing since childhood, Billy learned to read lips out of necessity (he liked to sit in the back of the classroom but was unable to hear his teachers). In his mid 30's when his hearing went ''completely bad'' and he found that volume boosters and amps did not work for him any more, Billy enrolled in sign language classes.

Nearly nine years ago Billy was introduced to a hand-held, personal communication device. Designed for people who are deaf or hard of hearing, the product provides two-way wireless service, enabling users to communicate wirelessly via email, TTY, fax, chat, one-touch relay, or text-to-speech message delivery. The device, completely portable, is Billy's main tool to communicate. It is on 24 hours a day, seven days a week. When he goes to sleep he puts it on his pillow so he can feel the vibration that alerts him when there is a message. He can make, schedule, and confirm appointments using this device.

It would not be possible for Billy to do all of his jobs without this communication tool. ''I don't need the pager to do the work,'' he says. ''I need it to be notified of the work.'' Once on the job he reads lips and uses sign language to communicate with clients and colleagues. With plans starting at $14.95 a month, the product is a viable option for people with and without disabilities.

One day while at my office I sent an email to Billy. Almost immediately, I received an email back from him in which he stated he was in front of my house at that moment. On another occasion I called the relay service, asking Billy if it was okay if we modified our plans. Within minutes, my phone rang. Upon answering the call I was greeted with a speech-generated message stating the change was fine.

Manufacturer representatives say their product ''enables...private communication.'' It minimizes the need for third party involvement in the transmission of the message, but the issue of message interception exists.

The product uses radio waves, described as ''packet radio.'' The message, broken into packets, is dispersed across the network in a series of non-linear packets, which, upon reaching its destination, are reassembled in the form of a complete message. This, a company representative says, makes it difficult or impossible for a hacker to intercept. However, they liken it to intercepting cell phone conversations, which does occur.

The service is available in the U.S. and Canada but, because no global standard exists, it does not allow users to roam across borders. This ''Technological Darwinism'' can be likened to the competition experienced between VHS and Beta video recorders in the 1970's and '80s. Eventually the Betamax was phased out and VHS became the industry standard.

The product allows hearing-impaired individuals to more efficiently communicate. As Billy says, ''I have TC. Total Communication.''

It is possible for all of us, like Billy, to take advantage of Total Communication - provided we can find it. As new technologies are introduced into the mainstream market it should theoretically become easier to acquire products that assist users in becoming more independent. However, because this integration is accelerating at a rapid pace without a corresponding increase in the dissemination of new information to people with disabilities and their caregivers, the end result may ultimately be an increase in difficulty and frustration.

While it is not necessary, or realistic, for practitioners to personally have knowledge of every product on the market and the benefits each provides for consumers, it is crucial that we maintain a current and comprehensive ''Resource Rolodex.'' This protocol enables us to contact the specialist who is most knowledgeable about the specific products that may be best suited to a particular disability, the nuances of similar items, and how to incorporate them into a well thought out, smoothly integrated assistive technology plan.

We are fortunate that we have curb cuts and wheelchair ramps on many sidewalks and in many streets. We do live in a society in which it is illegal to tell people they will not be hired because they have a disability, and in which able-bodied employees cannot openly get paid more than their disabled counterparts to do the same job.

As we increase awareness by informing people with disabilities about the products and services that can increase their independence, and by educating able-bodied people that people with disabilities can be contributing members of society, we can continue to bridge the gap between the ''front office image'' and mainstreaming people with disabilities into society.

In this way people with and without disabilities, who may appear different on the surface, can understand each other and learn about each other, allowing us to appreciate our similarities instead of focusing on our differences.

------------------------------------------------------
¹As per Census Bureau 1997 information, there are 52.6 million Americans 15-64 years old who are classified as disabled

² Based on statistics from the National Institute on Deafness and Other Communication Disorders

© 2003 Robin Springer