“Narrative” – who owns it, who controls it, who disrupts it – was the holy grail of almost every argument at Media in Transition 7. After Marina Levina’s talk on Citizen Bioscience in the Age of New Media, I plunged passionately into a debate that seemed to be a reduction of individual vs. institutional narratives. I was alarmed by the notion that “citizen bioscientists” could conduct genetic research without the human protections oversight of the informed consent and institutional review board (IRB) process. To my surprise, I was defending Institutional Science, at least as far as it embraces the protection of human subjects in research. Even as I took on this role, I remembered something I wrote in the role of a disability rights activist in Not This Pig:

At the intersection of law, medicine, and science, institutions wield great power to shape both the information and the decisions we make in the informed consent process. According to Bruce Jennings, “We must not underestimate the power of science and technology to colonize and dominate the contemporary imagination” [13]. In other words, when we make decisions based on informed consent, especially in circumstances when our autonomy is most vulnerable, the marketplace of ideas may not be as free as it should be. Read more

Since MiT7 I’ve continued to wrestle with conflicting perspectives about human subjects research. I do not think that the reductionist schema of individual vs. institutional science is sufficient for understanding the potential risks of genetic screening and recombinant DNA technology. The schema needs to be expanded to include population perspectives, or what Karla F.C. Holloway calls cultural bioethics. And it needs to be grounded in a historical context that does not ignore the 20th-century legacy of eugenics, the Holocaust, and secret Cold War radiation experiments.

Maybe it’s cognitive dissonance. Maybe I’m working my way toward the process Bruno Latour calls mapping controversies.

Mapping Controversies (Wikipedia) | About MACOSPOL – Mapping Controversies on Science for Politics

By fortressdayton

The original author of the ADA, a man confined to a wheelchair, lamented what the ADA has become. He said that, had he known what abuses of personal and property rights would take place in the name of the act, he would never have written the Act. How’s that for a commentary on the ADA? Society had a responsibility to TRY to accomodate its less-gifted citizens, but it is not obliged to do so. The ADA is a legal boondoggle used by attorneys to generate lucrative lawsuits. It needs to go away. Look around Dayton and see how this works out: every corner nearly has a sight-impaired plastic plate. How many sight impaired folks walk around Dayton? The cost is criminal. Braille buttons on drive-thru (!) ATMs. Gimme a break. Thye ADA has put more small restaurants out of business than the Mafia and the economy combined. Why does a mom and pop restaurant need a ramp and a handicapped accessible bathroom for EACH sex? Nonsense. Every welfare recipient seems to have a power chair now, so the problem is epidemic. I say, stop over-regulating in the private sector. If I don’t want to spend 200,000 to make my restaurant handicap-accessible, then that should be my decision. If you accomodate one, then you must, by rights accomodate all. Why do we get to bring assistance animals in food service establishments? What happened to hygiene? Oh, that’s right…the blind have more of a right to bring Fido in than I have a right to maintain food safety. BS!

After reading that, I was ready to reply in kind – but didn’t. Other commenters jumped into the fray, renewing my conviction in Justice Oliver Wendell Holmes’s assertion that the best remedy for speech that we hate is not its proscription, but more speech. Read what they wrote.

The libertarian argument (I’ve got mine, and I’ll step on your neck to keep it) advanced by “fortressdayton” reminded me of Rand Paul’s remarks about the Americans with Disabilities Act after his primary election victory last May in Kentucky. His language sounded reasonable compared to “fortressdayton”, but it conveyed the same sense of paternalism and noblesse oblige: the disabled  don’t need burdensome laws to help them, we know what is best for them. Here is what Rand Paul said on NPR:

I think a lot of things could be handled locally. For example, I think that we should try to do everything we can to allow for people with disabilities and handicaps. You know, we do it in our office with wheelchair ramps and things like that. I think if you have a two-story office and you hire someone who’s handicapped, it might be reasonable to let him have an office on the first floor rather than the government saying you have to have a $100,000 elevator. And I think when you get to solutions like that, the more local the better, and the more common sense the decisions are, rather than having a federal government make those decisions.

President Obama and others speak at an event commemorating the 20th anniversary of the Americans with Disabilities Act. [Source: whitehose.gov].  This video is in the public domain. Read the transcript.

Andrew Rasiej:  Public should be redefined as being searchable and readable on-line. In a connected society we need to redefine “public” in an open framework. We have a right to be re-defined in the content in the technologies we have today.

About the context:

Over 1,000 people earlier this week descended upon the Lincoln Center’s Rose Hall in the Time Warner building in Midtown Manhattan for the annual Personal Democracy Forum. A who’s who in the fields of government, technology, and media, the conference focused on how technology and the Internet can create a stronger democracy.

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