Assistive Technology
Exceeding All Expectations

By Robert R. Williams, Commissioner
Administration On Developmental Disabilities, Administration For Children and Families
U.S. Department of Health and Human Services

This article is reprinted from the A.T. Quarterly, Volume 5, Number 2 & 3, (1994)

Editor's Note: Mr. Williams was appointed by President Clinton to his present position in August 1993. Prior to his appointment, he worked as a policy associate with the United Cerebral Palsy Association's Governmental Activities Department. The following speech was delivered as a keynote address at the opening ceremony of RESNA's Annual Conference in Nashville, Tennessee on June 18, 1994.

I want to begin by saying how personally proud and pleased I am to be back at the RESNA Conference - and to have been selected to address you tonight.

My father is a fine craftsman whose craft is wood-making. I, too, like to think of myself as a craftsperson of sorts. I consider my primary craft neither politics nor policy but that of writing. And I spent some of the most enjoyable and productive years practicing and fine tuning that cherished craft by writing and editing RESNA's A.T. Quarterly newsletter as well as chumming around with the likes of Nell Bailey, Karen Franklin, Judy Brewer and Dianne Coleman, among others, in the Tech Act states and with families like the Guzzos of Indiana. This includes an increasing number of assistive technology advocates who come out of the developmental disabilities network, like Marv Fifield, Dianne Bryen, and Joan Bergman. So it is good to see so many old friends and to have this chance to meet many new ones.

It is great to be back in Nashville as well. I seem to make my way back to this city every couple of years. And, almost by accident, each time I come here I end up learning a great deal more about assistive technology. About its power! About its potential! And, perhaps most of all, about its dreams deferred: about how much work you and I still have left to do to close the gap between its promise and everyday reality.

As most of you know, the device I use is aptly called a Liberator (see box at the end of this article for a description). However, it was not until I gave the keynote at the national People First Conference in Nashville in 1991 that I realized how truly liberating such assistive technology can be - not just for individuals with disabilities, but in a political sense and for our nation as a whole. For once I had a roomful of 900 people, all chanting in unison, with me and my device: WE HAVE POWER! WE HAVE POWER IN OUR HEARTS! WE HAVE POWER IN OUR VOICES! It was only then that I came to really understand the deep transformational properties of this thing we call assistive technology!

It was here in Nashville a year later, ironically following an assistive technology systems change conference, that I learned an equally critical, yet bittersweet lesson about assistive technology - its potential and its dreams deferred. I met a woman, a contemporary of mine named Kathy, who has cerebral palsy and who at the time was living in Clover Bottom, an institution a short way from here.

As soon as my wife Helen and I met her, Kathy pointed to the symbols for "I want to go" on her communication board. Not wanting to jump to conclusions, we asked staff what she meant by this, and they replied that Kathy wanted out - out of Clover Bottom - forever.

When we first met, I talked to Kathy using my manual communication board, and she took a keen interest in it. Later, as we were leaving, I spoke to her using my Liberator. It was then we learned of her interest in obtaining a similar device. When I told her that the law said she should get what she needs, Kathy cried inconsolably - and with good reason.

For Kathy is very much like many others we all know: The greatest crippler she faces is not her disabilities, but others■ severe ignorance and profound underestimation of her abilities. Having access to supports like personal assistance and assistive technology is critical. In fact, for individuals like Kathy and myself, it's often the only thing that can begin to tear down the age-old walls of myths and stereotypes regarding people with disabilities.

The good news for Kathy is that she moved out of Clover Bottom and into a group home, which, while not perfect, is a beginning. Kathy, the last I heard though, still has not gotten the communication device, nor any of the ongoing support and training she would need to learn how to use it. Like millions of other Americans with significant disabilities, Kathy has a strange attraction to proverbial monkey wrenches and, what I call, plain inertia. The inertia is not hers but is systems inertia ■ the lack of urgency and sustained efforts on the rest of our parts.

We all talk a good game about the power and the potential of assistive technology. And it is all very true. But I am increasingly seeing, both as an individual and as a federal executive responsible for leading a national network committed to systems change, that where the real rubber meets the information highway is in transforming that power and potential into everyday realities in people's lives!

Creating true access to assistive technology means much more than creating access to devices - to hardware and software. Much more significantly, it means building in training; building in ongoing support; and building in opportunities for self-instruction and troubleshooting, both for the individual relying on the device and his or her partners or assistants. This is especially true for the kind of technologies I rely on most but it is also true for a great many other assistive devices and technology solutions being used in school and work situations in particular.

Now that I run a $109 million dollar federal agency, I have a great many more challenges to address in this regard. However, unlike the vast majority of Americans with significant disabilities and their families, I also have a great many more resources and accommodations to organize and deploy as I see fit. Just two weeks ago, for instance, I got a new custom-made desk. It can be raised and lowered with the push of a button and is designed to enable me to stand part of the day while working, thus reducing my chances for both fatigue and other possible secondary disabilities. Some might see this as a luxury. I think not. My staff reports that the only down side to it is that as my lung capacity increases, my bark will be louder than ever. I hope that will make my occasional bite pale in comparison.

Increasingly, I am also relying on this Liberator, not just for communication but as my principal management tool. With it, I am able to access my computer, e-mail, and Internet. The reason I am able to do this is the ongoing support I can draw on. I have a staff person, Ron Filewich. Usually, Ron doesn■t travel with me. But, as luck would have it, Helen could not come with me on this trip, so I drafted Ron to come in her place, and it is good that he did. It is good that he is being exposed to everything this conference has to offer. One of the best management decisions I made early on at the Administration on Developmental Disabilities was to have Ron be my troubleshooter on technology. And, on average, he now spends over a third of his time troubleshooting, developing macros, and making sure everything is backed up, not just with respect to the Liberator but with regard to the LAN and Internet as well. He, in turn, has an entire network, inside and outside of government, backing him up as well. He is there to anticipate problems and solve glitches as soon as they occur because, frankly, I cannot afford slow downs or to be non-productive ■ not for five minutes, a half hour, nor, certainly, an entire day.

More important, America can no longer afford it either. America can no longer afford to have a few exceptions to the rules, like myself, hanging around. Right now there is really just a relatively small number of us who are exceptions to some extremely important rules - exceptions in that we have had access not simply to assistive technology but to the training and, most important, to the ongoing support we need to make it work, not just to improve our own lives but to make a critical difference in the lives of our families, communities, and our nation.

The challenge that you and I face, therefore, is not to come up with a few more exceptions but to change the rules of the game entirely. As President Clinton says, America cannot afford to waste any of its citizens.

What does this mean in practice? It means figuring out the best ways to get ongoing technology training, assistance, and support to individuals. It means educating individuals and their families of their rights under IDEA and the most recent rehabilitation amendments - and making these laws work for people.

It also means a great deal more: doing a great deal differently from what we typically have done in the past ■ reaching out and reaching beyond the traditional ways of thinking about and responding to the challenges and opportunities presented by disability in the twenty-first century.

The disability community must work with those of us in the Clinton Administration to infuse universal access as a pivotal element in the National Information Infrastructure. We must work to infuse access to assistive devices and technology solutions and the ongoing training and support it takes to master their power as a central practicing tenet in each and every one of President Clinton's major new investment initiatives - in Head Start, in Health Reform and Personal Assistance, in National Service, in Goals 2000, in the School to Work initiative, in Welfare Reform, and in the Empowerment Zones. By seizing on and influencing these ventures, you and I have an opportunity, and the obligation, of a lifetime.

Our nation simply can no longer afford, either in the rawest human or economic terms, to continue to spend between two and three hundred billion dollars a year keeping Americans with disabilities economically disenfranchised and, for the most part, needlessly dependent.

There is a better way, and that way begins with working with young Americans, both those with and without disabilities, and especially with those who are left out and left behind - those at the very margins of the American community. It begins with preparing an increasing number of these young men and women to come together to form what might be called a National Human Support Infrastructure - a Human Support Infrastructure which would offer individuals with significant disabilities of every age and background ready access to the same kind of ongoing training, technology support, and troubleshooting which I now take full advantage of myself.

As President Clinton, Labor Secretary Robert Reich, and others point out, access to communication and telecommunications technology will increasingly become a necessary prerequisite. A prerequisite for learning, for working, and simply, for living, in twenty-first century America. This will be true for all Americans. But, I think, it will be particularly true for two groups above all else: those with disabilities and other young Americans on the margins. There is a powerful connection to be made here. You can be certain that we in the Administration on Developmental Disabilities and elsewhere throughout the Administration will be working to make that vital link occur! I challenge you to work with us to do the same!

The A.T. Quarterly was a newsletter developed by the RESNA TA Project under a contract with the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education (ED). The content, however, does not necessarily reflect the position or policy of NIDRR/ED and no official endorsement of the material should be inferred.

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