Keynote Address:
Inclusion through Technology, Policy, and Conversation

This good, common-sense advice has not always been applied in the disability field. In earlier decades we found many ways to marginalize, to dominate, and to exclude persons with various types of disabilities from the panorama of American life. . . .

We excluded them from our schools, barred others from immigrating here, and segregated many in institutions. We now have the technologies and laws, such as the ADA, to reach voices and talents that might otherwise be lost. But we need the wisdom and the will to include all Americans with disabilities.

A fellow named Larry McAfee, now 39 years old, illustrates the pitfalls and potentials of our rehabilitation system. In 1985 Larry was riding his motorcycle on a fine day. He had an accident and wound up as a quadriplegic. After years of being shuttled between hospitals and nursing homes, with little or no activity, Larry said, "I feel like a sack of potatoes. . . . It is very heartbreaking. Every day when I wake up, there is nothing to look forward to. . . . I want to die." He petitioned the Georgia Supreme Court to turn off his respirator, and won the right to die.

Then, with the media attention that the case drew, offers of help began to flow in. The United Cerebral Palsy Association, bless their hearts, came to his rescue. They found him a home where he could live with personal care and dignity and technology that would allow him to resume his work as a draftsman. In 1992 he began using voice-activated equipment called "Headmaster" that, just with his voice and the movements of his head, enabled him to use a computer and do the work of a draftsman. So he rescinded his wish to die. Could anything be more dramatic? . . .

But for all the glamour and the appeal of the new technologies, we still need the old virtues of listening, of remedying the injustices that we encounter, or, as Martha Minow reminds us, of communicating with those we hope to help.

Miles Santamour was one of those individuals who reached out, hoping to help others. Miles was a program specialist in the federal government back in the 1970s, working with the President's Committee on Mental Retardation. He went out to Forest Haven, an institution of the District of Columbia for more than 1,300 people with mental retardation. As one of the experts, he made his investigation and report on the plight of people who had been isolated and segregated there for decades.

Here is part of the affidavit he filed with the court: "Late one evening, I visited the residence of a group of older women, all of whom were gathered in a large dayroom, idly watching television or working on some piece of embroidery or knitting. As I circled the group, asking questions and explaining who I was and why I was there, I began to sense the dominance of a large, matronly woman who had positioned herself on a couch in the center of the room.

"She watched my every move. As I began to leave, she summoned me back. So that all could hear, she began a series of questions, to which she answered yes without waiting for me to respond: `Are you from downtown? Are you a big shot? Are you here to see how bad we live? Are you here to make the place better? Are you going to get us out of here?'

"At that point, she turned to her assembly and began to laugh uproariously, almost hysterically, along with many of the other residents. My usefulness had been fulfilled and, without responding, I left. Their laughter continued as I made my way out of the room and did not subside for some time.

"These women had spent a lifetime observing the likes of me, evaluating their situation and then disappearing with no meaningful aftereffects upon their lives. One wonders how many times the likes of me had carried out similar investigations, how many `big shots' from downtown had been responsible for raising the hopes of these individuals, how many times they had waited for such visits to change their lives, and for how many people had the changes never come."

There was information galore about what was needed to change all the Forest Havens in this country. But, too often, there was no sustained and active conversation among the people with disabilities, their helpers, the judges, and the larger communities.

To achieve the promises of inclusion, new technologies, and the ADA, we will need more than an ocean of information. We will need more than the wonder gadgets to become cheaper and more accessible. We will need the political and moral will to let the Forest Haven residents in. Let's begin that conversation of inclusion now.

Stanley S. Herr,
Kennedy Public Policy
Fellow, White House Domestic Policy Staff
(on public service leave from the University of Maryland School of Law)