American athlete Aimee Mullins has been a guest editor over at Gizmodo recently, and her “Racing on Carbon Fibre Legs” is worth a read on Cheetah legs, Pistorius, an ableism. Amongst the things of interest are:
As of yet, the best prosthetic available is not as efficient and not as capable as what Mother Nature gives us — or, what she was supposed to give me and South African sprinter Oscar Pistorius. The revolutionary design of the woven carbon-fibre Cheetah Leg, nicknamed for its design inspiration, has been in existence for nearly 15 years — and after my initial triumphs with them in the mid 1990s, it has been the leg of choice for nearly all elite amputee sprinters. But in one instant, after Pistorius entered a summer 2007 track meet in Rome and placed second in a field of runners possessing flesh and bone legs, he and I were deemed too abled.
There is now a nice pair of videos, running for just under 12 minutes, on Oscar Pistorius, made shortly before the Beijing Olympics, up on Youtube. They take the story up to the point where the Court for Arbitration in Sport overruled the initial IAFF decision banning him from competing with non-disabled athletes. For that decision, see Gregor Wolbring’s thoughts and related discussion in earlier posts here and here.
Here are five What Sorts posts that I had particular fun writing–from mid-2008 to early 2009–that can serve as a kind of bon voyage for 2009 … despite the fact that only two of them were written in 2009, and pretty early on, at that. Farewell 2009, farewell! May 2010 bring more sunshine and fewer clouds.
There’s a recent interview with Barb Farlow up at Bloom–Parenting Kids with Disabilities–by Louise Kinross. It starts with the following background information:
When Barb Farlow learned the baby she was carrying had Trisomy 13, her decision to continue the pregnancy “was immediate and innate, and in complete contrast to what I thought I might do,” says the Toronto mother and engineer. She was told the syndrome was lethal, but through online support groups met families whose children were living with Trisomy 13. “It was very important to us that she not suffer unnecessarily, but we wanted to consider any surgical treatments and make ‘best-interest’ decisions for her, like any parent.”
Barb’s daughter Annie (above) was born without the brain and heart defects common in Trisomy 13, but died at 80 days in 2005 after being rushed to a children’s hospital in respiratory distress. Following her death, Barb acquired Annie’s medical records and learned a “not for intubation” order had been written without consent. “This discovery was like the first domino in a long line of questionable events that left us unclear as to whether our daughter’s death was preventable.” Determined to change what she believes is systemic discrimination against treating children with certain genetic conditions, Barb shares Annie’s story at health-care conferences and ethics talks, with medical and law students, in medical journals and through her work with Patients for Patient Safety Canada.
To read the interview itself, which is informative about how Barb and Annie were treated within the medical establishment, including by medical staff at one of Canada’s leading hospitals for sick children, click here.
I’ll be teaching a fairly large, mixed grad / undergrad seminar this coming semester as an ethics course with the working title that coincides with the blog: what sorts of people should there be?. Below is an initial draft of the core part of the syllabus. Feedback and suggestions welcome. One feature of the course will be to integrate some of the posts, videos, and commentaries from the What Sorts blog, using them as a basis for further discussion and readings. If any of you are also making use of some of the resources here or at www.whatsorts.net, let me know by reply here or privately.
Phil 450 / 550
Topics in Ethics
What sorts of people should there be?
Themes, readings, etc.
Course guide description:
This course will be organized around the question “What sorts of people should there be?” and will focus on philosophical issues that arise in several areas at the interface of ethics, science, and technology. Topics that I would imagine covering including most, if not all, of the following: autonomy and personal choice concerning one’s appearance, health, and well-being; choices and responsibilities for one’s own possible and actual children; social policies and common practices regarding future generations, including genetic testing and screening; philosophical and medical views of disability and disablement; bioenhancement and transhumanism; the moral value of human and non-human lives; the nature of persons and the philosophical focus on questions about persons. Continue reading →
I’m re-posting this May 15th post, since Disrespect has just re-run an interview with Sam Sansalone about his daughter Katya from earlier this year. The directions below will allow you to get to Sam’s interview, which was re-run on 22nd October; the podcast should be up there for the next few weeks. The two are related not only in that the children have the same genetic condition, but were also treated in similar ways by the same hospital.
Below is the original blog post on the interview that DisRespect did in May 2009 with Barb Farlow and me on Barb’s daughter, Annie Farlow; it includes a transcript of the interview. If you want to see the footage of the talk that Sam gave, referred to in his interview, you can go to the post The Modern Pursuit of Human Perfection: The Full Story and then click on the two Living with Trisomy 13 posts within it. These videos are all now closed captioned and also include transcripts, thanks to Jackie Ostrem
Many of you have likely been following the case of Annie Farlow (Here is a listing of all our Annie Farlow posts) and were looking forward to listening to yesterday’s radio interview of Barb Farlow and Rob Wilson by Geoff Langhorne. If you are unfamiliar with the case then this interview should provide a succinct introduction to the details of the case in an accessible form. The one thing perhaps unclear in the interview is that Annie was NOT a newborn, but 80 days old, and went in to the hospital 24 hours before her unexpected death. You can also get more from the recently-formed Justice for Annie Facebook group, which you’re welcome to join (it’s a closed group, which means you have to apply to join it), and the Annie Farlow website linked there.
The wrap-up of Ed Stein’s talk at the Human Kinds symposium. Here Ed talks a little about whether there are natural human kinds, whether male and female, or gay and straight, might be such kinds, and the relationship between such questions and issues of gay rights.
Here Nick moves on to uploading proper, starting with ideas about cochlear implants and the incremental move on to full uploading. Turning minds to technology, the celebration of the arrival of The Singularity in 2045, and then uploading … and why this is a bad idea!
In part 2, we get as far as the outline of Nick’s main argument, taking seriously the possibility that uploading = death. In part 3, we get the deal finished. For both, you might want to have the following handy, using your extended mind:
A = You live; benefit from bioenhancements, but forego other, significant enhancements asociated with uploading
B =You live; benefit from bioenhancements, and avoid death or replacement by a non-conscious Upload
C =You live; benefit from electronic enhancements, disease free, intellectual surge
D = You die; replaced by a machine incapable of conscious thought.
Nick Agar‘s talk at the Human Kinds Symposium focuses on Kurzweil on uploading, and gives his ideas a critical combing. Here Nick starts off with some of the basic, background ideas that Kurzweil draws on before getting ready for the view of uploading, in Part 2.
Nick’s Wikipedia page stub is here and his homepage at Victoria, Wellington, is over here.
Gregor Wolbring in full swing on ableism and its relationship to sexism, racism, caste bias, anti-environmentalism, consumerism. It all goes by very fast, so be prepared! Part 3 will have some panel interchange on this.
Here Gregor argues that ableism lies at the root of these other “isms”, and so is in that sense the most fundamental form of discrimination. In the audience discussion following the talk–which, unfortunately, we did not have permission to film–there was quite a bit of discussion of, and resistance to, this idea. Gregor also writes a regular column, The Choice is Yours, and you can find more information about him there. On this issue, as Gregor says about most things, the choice is yours. Is ableism the most fundamental form of discrimination out there?
Here is Gregor Wolbring‘s talk at the Human Kinds Symposium, including my introduction of Gregor and almost the first half of his talk. Gregor’s focus in this part is on enhancement, “techno-doping”, and ableism. Stay tuned for Parts 2 and 3!
Gregor also writes a regular column, The Choice is Yours, and you can find more information about him there.
As with other videos in this series, apologies for no captioning yet, but we hope to have that finished in the next few weeks, and will let you know when captioning is up.
Over the next few weeks, we will run videocasts from in invited symposium panel that I organized at the Pacific Division meeting of American Philosophical Association in April, 2009, held in Vancouver. The panel was on human kinds, and topics that we discussed ranged from transhumanism through to disability and sub-normalcy and gay rights and gay marriage. The speakers, in the order in which they spoke, were:
The talks are relatively short, and we’ll run about 1 per week before linking them all up together. No captioning yet, but we hope to have captioning done by the time the series has run.
The introduction talks a little bit more generally about the panel and the What Sorts Network. You can also watch the videos directly on Youtube, by searching for videos by Rapunzelish. Really.
Thank you for your wake up call, Spirit of our time, and thank you also for inviting me to write here.
I share the concerns about the new growth attenuation paper that Spirit of our time expressed in his latest post. I also find his advice to read carefully and slowly totally relevant not only when you read his version of the abstract but when you read the original abstract as well.
There are some particular expressions that worry me a great deal, such as “the scientificrationale,” “informed responses to key clinically relevant questions,” and “potential clinically meaningful benefits of growth-attenuation therapy.” The implication here seems to me to be that this is a medical issue for doctors to consider scientifically, not for the court or the disability rights advocates to interfere with. That reminds me of Norman Fost’s pet theory that the court should have no say in medicine.
I also wonder if they are trying to ward off criticisms from disability studies or disability rights activists by confining the issue within medical argument. But then it also makes me wonder, as Spirit of our time has pointed out, what the working group discussion was all about . The WG had their first meeting in April 2008 and had revised draft (of whatever it might be) circulated for comments in December 2008. I wonder if the WG members were aware, while working as a group, of the fact that three of them were writing a paper independently to maintain that it is a safe and beneficial therapy to be recommended as one of the future choices for profoundly disabled children when they are around 3.