Disablism Summit
by Paul Miller
Perfection revisited?
Paul Miller, 15 July 2004, Scope Disablism Summit, London
About this time last year I sat down to lunch at a conference about future technologies that was being held at Stanford University on the west coast of America. And, as you do, I got talking to the guy opposite me about the previous session which had been a fairly mindblowing talk about some new wiz-bang widget or other.
Anyway, we chatted for a while then I asked this guy what he did for a job.
It turned out he was in the �head freezing business�. He worked for a company that specialises in cryogenics � the freezing of human heads, and sometimes whole bodies, in the belief (advocates would say sure-fire knowledge) that one day we�ll develop technology so advanced that we�ll be able to restore those bodies and bring our frozen friends and family back to life again. If you�ve seen the cartoon Futurama, you�ll know what I mean. He reckoned this was a $300 million industry.
I tell you this story because I think it is important to realise that innovation isn�t just about better versions of products that we are familiar with. Scientists are, as we speak, developing processes and products which we haven�t even imagined. And I think disabled people should be as much a part of those development processes as they should in other areas of �inclusive design�.
What I want to do this afternoon is briefly focus on one class of emerging technologies that I think is particularly relevant � human enhancements. These are technologies that are not just therapeutic or medical applications of technology but actually enhance our physical or mental abilities. These might eventually include computer chips that let you upgrade your brain, technologies that allow genetic choices� enabling parents to choose almost every detail of their offspring. They are as one influential report written for the US Government calls them, technologies for �improving human performance�. They are also technologies that call into question what is biological and what is technological.
Just think for a moment about what this might mean. Think about memory enhancers � something that pharmaceutical companies are working on today. The obvious market is for those who suffer from Alzheimer�s or other memory disorders. Imagine if they were readily, cheaply and safely available to all of us. If it was as easy to improve your memory as it is to buy a book from Amazon, what would happen to our society? What would be the implications? And if we were able to change and improve our bodies in the same way as our memories, what would be the implications for disabled people and their identity?
One of the most thought provoking articles on this subject is �The Case Against Perfection� by Michael Sandel which appeared in the Atlantic Monthly earlier this year.
In it he writes:
�When science moves faster than moral understanding, as it does today, men and women struggle to articulate their unease�
Sandel points out our lack of language to even talk about, let alone make progress on these issues and talks about a �moral vertigo� about these technologies. He wonders about two classes of citizens the �enhanced� and the �unenhanced� but then asks the more fundamental question as to whether we should aspire to enhancement in the first place.
Sandel is asking the question but how should we, as a society, go about answering it?
It was at another conference about technology (this time in New York) that I was sitting doing something I probably shouldn�t have been doing. I was only half listening to the speakers� which some of you might be doing now, I�m not sure. It was there that I heard this phrase �trading zone� and my ears pricked up.
What had been perplexing me about disability was why disabled people were getting such a raw deal. There was an immensely strong movement of incredibly passionate people. There was, at least in rhetoric, a commitment on the part of policy makers and companies but still what we were seeing through the interviews with disabled people we were doing was that the lived experience of disabled people was much worse than their non-disabled fellow citizens.
There was something here about the characteristics of the way that new policies and products and services were designed. There seemed to be a general exclusion of disabled people � if they were included it was through some sort of consultation that didn�t take place on an equal basis.
It was then I saw the parallel with science and with the idea of trading zones developed by historian of science Peter Galison.
Galison�s focus on the spaces between cultures and institutions seemed like a fruitful area for us to look at for the Disablism pamphlet. Rather than thinking about specific policies or reforms of existing institutions it seemed that we should look at the way the big institutions and groups took decisions that affected disabled people. What was important was that when these institutions met disabled people, they should be able to contribute � to �trade� their skills, perspectives and insights � on an equal basis if society as a whole was to get the best outcome.
Bringing it back to the emerging technologies that I talked about earlier what I�d suggest is the need for a trading zone between the forefront of science and disabled people. What�s important is that the trading zone is at the point in the development where it can have the greatest influence � in technology that means going back to the drawing board� and then some. This is what Demos calls upstream engagement.
Our �moral vertigo� as Michael Sandel calls it is getting worse as we understand the negative impacts of technologies developed in the last century� the list of unintended consequences gets longer year by year: nuclear fusion, pesticides, the combustion engine.
Gordon Brown announced on Monday a ten year strategy for science and innovation which includes a massive increase in funding of the UK research budget. So it�s all the more important that at the same time as we�re trying to influence the design of planes, trains and kitchen appliances, we should be creating space for dialogue between the people developing the absolute cutting edge of technology and disabled people.
Notes:
Michael Sandel's article is here
More about Peter Galison and his work is here