published May 8, 2014

Scientific Progress and the Rights of Persons with Disabilities

Wm. David Burns
david.burns@sencer.net


On April 7, the Board of Directors for the American Association for the Advancement of Science (AAAS) adopted a statement urging the United States to ratify the Convention on the Rights of Persons with Disabilities. Modeled on the Americans with Disabilities Act, the Convention is explicit in connecting science and technology with the rights of persons with disabilities, including calling on countries to support research and development (R&D) on adaptive goods and services as well as new assistive technologies. NCSCE is an invited member of the Human Rights Coalition. You can read the statement here.

I suspect that many of you subscribe, as I do, to "National Science Foundation Update." This online service provides a daily dose of news on innovations in science and technology—and occasionally STEM education—that have been fostered through NSF support. (If you don't get this service from NSF, it is easy to subscribe.

On April 28, the NSF Update announced: "Carnegie Mellon system lets iPad users explore data with their fingers."[1] The release went on to say:
Spreadsheets may have been the original killer app for personal computers, but data tables don't play to the strengths of multi-touch devices such as tablets. So researchers at Carnegie Mellon University have developed a visualization approach that allows people to explore complex data with their fingers. Called Kinetica, the proof-of-concept system for the Apple iPad converts tabular data, such as Excel spreadsheets, into colored spheres that respond to touch.

"Colored spheres that respond to touch" sounds like good news, but not so fast.

The same day, I received this e-mail from our old friend Jessica Wyndham of the American Association for the Advancement of Science. She wrote:
On January 28 you participated in the Executive Directors' Circle chaired by Alan Leshner as part of the meeting of the Human Rights Coalition. As a direct consequence of that meeting, AAAS staff developed a draft statement on ratification of the Convention on the Rights of Persons with Disabilities for consideration by the AAAS Board of Directors. On April 7, the Board adopted the statement, urging US ratification of the Convention. A link to the AAAS statement was provided in the preface, above.

This is, of course, good news too. I will have more to say about it in a moment. Before I do so, however, I want to suggest what the two items I have just referenced may have to do with one another. And it is to Jessica and her colleagues at AAAS that I owe this insight.

Last January's Human Rights Coalition meeting had as its theme: "Disability Rights and Accessing the Benefits of Scientific Progress and Its Applications." One of the many engaging speakers we heard was Marco Midon, acting NASA Stations Manager for the Near Earth Network Project at the NASA Goddard Space Flight Center.

Mr. Midon is an engineer who, along with his twin brother, became blind shortly after being born. Speaking via a telephone hookup to his office, Midon told the folks gathered at the meeting in Washington that, up until a certain point, advances in technology seemed to have contributed to an opening up of his world. That encouraging trend ended, rather abruptly, however, for Marco and his work with the introduction and rapid widespread use of the Smart phone touch screen and its successors and progeny. The touch screen offered a smooth surface. In doing so, it failed to offer places you could find if you were without sight.

The surface representing an advance for many of us (even those of us with big hands and clumsy fingers), ushered in a setback for others, at least initially. This particular "benefit of scientific progress and its applications"—like many others—wasn't shared equally.

From this and other examples, Midon and his fellow panelists helped the meeting participants see how different abilities and disabilities demand different technologies. Think about that most basic element of "barrier-free" design: curb cuts. For the person using a wheelchair, the curb is one more barrier not easily overcome. With a curb, however, a person who is visually impaired can use a cane to feel where the sidewalk ends and the street begins. Where the curb cut serves the interests of a person using "wheels" to get around, it exposes a person using "feels" to new risks.

I don't know enough about Carnegie Mellon's Kinetica to know if it will help or hinder Marco Midon or any others for whom the touch screen represented a step backward. What I do know is that I agree with Marco that we need to think hard about the interface between humans and the world we build, be it an "app" or a classroom practice. It is in these interfaces that our abilities and our disabilities emerge.

About this human/constructed environment interface, I remember a question a dean asked me many, many years ago when one of my duties at Rutgers was to be the compliance officer for "Section 504 of the Rehabilitation Act of 1973." He asked, "Is a 300 pound woman handicapped?" I thought a moment (pausing a while, perhaps because I was obese myself and I felt a bit personally implicated in his question) and then I said to him, "I don't know. What's she trying to do?" It was the interface I wanted to know about: if the University was asking her to sit on a reasonably sturdy chair, then the answer was probably "no." If we were requiring her to hike up Half Dome on a class trip, then "perhaps" might be the best immediate answer.[2]

At the AAAS meeting, the phrase uttered by several of the speakers, "not about us, without us," served for me as a pretty simple, easy-to-understand, and powerful maxim about that human built-world interface. It seems like a handy tool to add to one's public policy kit in a democracy and to one's "pedagogy kit" (to coin an unattractive phrase), as well. The phrase offers another way of prepare us for, and prompt us to, enact the implications that follow from the conviction that "people learn differently."

Back to the AAAS Board of Directors resolution on the rights of persons with disabilities: In her cover e-mail, Jessica invited the readers "work with your organization governance bodies to also adopt a statement in support of ratification of the Convention. The Coalition Secretariat can offer you support and advice in preparing a draft statement and relevant background materials. Alternatively, you may directly endorse the AAAS Board statement. Timing is key. We anticipate the U.S. Senate will consider ratification of the Convention during the upcoming summer months..."

The United States leads the world in several areas, one of them is in the treatment of persons with disabilities. Indeed, some have said that the Convention is modeled to a large extent on the US experience. Former Senator Robert Dole called the Convention, "a landmark document that commits countries around the world to affirm what are essentially core American values of equality, justice, and dignity."

Testifying before the Senate Foreign Relations Committee last Winter, Mr. Dole noted [3]:
When Congress passed the Americans with Disabilities Act (ADA) in 1990, it was not only one of the proudest moments of my career, it was a remarkable bipartisan achievement that made an impact on millions of Americans. The simple goal was to foster independence and dignity, and its reasonable accommodations enabled Americans with disabilities to contribute more readily to this great country.

Mr. Dole concluded his testimony with a claim whose eloquence we all can admire:
Years ago, in dedicating the National World War II Memorial, I tried to capture what makes America worth fighting for, indeed, dying for. "This is the golden thread that runs throughout the tapestry of our nationhood," I said, "the dignity of every life, the possibility of every mind, the divinity of every soul." I know many of you share this sentiment and hope you will consider this treaty through that lens. In ratifying this treaty, we can affirm these goals for Americans with disabilities.

If you would like to add your voice to this discussion, Ms. Wyndham suggests that you can express your views to your U.S. Senators and she invites you to cite the AAAS Statement. You can contact Ms. Wyndham at jwyndham@aaas.org.

At the local level and in our own lives, let's think about Marco Midon and all of us who are our own versions of Marco as we design technologies—be they teaching strategies or apps—to assure we are doing what we can to reduce the disabilities we create in the part of the world we are making and for those we hope will join us in our endeavors.

[1] The NSF also announced: "Mantis shrimp stronger than airplanes." We won't go there right now.
[2] It turned out that she was asking to have a class moved from a high floor on a building that had a hopelessly unreliable elevator to a lower floor. Upon determining that there was a perfectly adequate available room on the ground floor, the issue was resolved to nearly everyone's benefit.
[3]
http://www.foreign.senate.gov/imo/media/doc/Senator_Dole_Testimony.pdf