Reflections on World Down Syndrome Day 2014

March 21st is World Down Syndrome Day, and 2014 is the ninth year in which it has been held, and the third in which it has been recognized by the United Nations. I want to start this post with an already-widely viewed video from CoorDown that has been up for less than a week, and step back from there.  The video is called “DEAR FUTURE MOM”:

At the time of writing, this video had been viewed over 1.6 million times in 6 days, with over 500 comments on it.  It’s clearly designed to be emotional and to directly send a number of messages, including at least these: anxieties about having a child with Down syndrome are understandable but overblown; children with Down syndrome will likely bring much joy and richness to the lives of any family they are in, and particularly to mothers; and Down syndrome does not obliterate or subhumanize the person who has it.

The need for those messages, and perhaps others, to be sent, loud and clear, is grounded in the sad fact that parental fears associated with potentially having a child who will have Down syndrome are amongst the highest risk factors for people with Down syndrome.  This is because

A reply to Allen Buchanan on Cognitive Enhancement

The interview with Allen Buchanan has spawned numerous discussions throughout the web, including Brendan Foht’s response. In it, Foht looks to address Buchanan’s claim that the nature of our evolution in some sense justifies cognitive enhancement, and the existence of other technologies.

It is strange that Buchanan thinks that opponents of genetic engineering who find something worth preserving in our nature must believe that evolution is analogous to some sort of “master engineer.” Considering that evolution is a slow process by which biological order spontaneously emerges from highly complex networks of highly conserved genes, there would seem to be an obvious analogy for it in the conservative view of society.

Another article on the topic by Allen Buchanan can be found here. And you can watch a lecture by Buchanan through Youtube, titled “Using Biotechnology to enhance normal humans: Why nature isn’t good enough.” 

‘Newgenics’ still rampant in Alberta, conference told

Front page, Edmonton Journal, by Andrea Sands:

 

‘Newgenics’ still rampant in Alberta, conference told.

Templeton Positive Neuroscience Awards

Apparently, I’m an “honorary distinguished senior advisor” to this project, where I assume that “honorary” means “unpaid”, “distinguished” is a typo, “dis” for “ex”, and “senior” means “old”.  The complete information on the award recipient projects may be of interest to some readers of the blog. Congratulations to Laurie Santos especially for her grant on the origins of altruism!

Positive Neuroscience / Psychology

Award-winning researchers to explore human flourishing
from neural networks to social networks

The Positive Psychology Center of the University of Pennsylvania and the John Templeton Foundation (www.templeton.org) have announced the recipients of the Templeton Positive Neuroscience Awards. The project will grant $2.9 million in award funding to 15 new research projects at the intersection of Neuroscience and Positive Psychology.

The winning projects will help us understand how the brain enables human flourishing. They explore a range of topics, from the biological bases of altruism to the effects of positive interventions on the brain.

The Positive Neuroscience Project (www.posneuroscience.org) was established in 2008 by Professor Martin E.P. Seligman, Director of the Penn Positive Psychology Center, with a $5.8 million grant from the John Templeton Foundation. In 2009, the project announced the Templeton Positive Neuroscience Awards competition to bring the tools of neuroscience to bear on advances in Positive Psychology. Seligman founded the quickly-growing field of Positive Psychology in 1998 based on the simple yet radical notion that what is good in life is as worthy of scientific study as what is disabling in life.  Read the full press release from the PNP website.

What Sorts course

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.

Does anyone remember “lobotomy”?

Picture of brain surgery

The New York Times recent Surgery for Mental Ills Offers Both Hope and Risk raises, for me, one big question: why the enthusiasm for bringing experimental brain-fu*king to the public’s attention right now? As the article reports but does not underscore in the name of balance, the history of psychosurgery is one of moral and medical failure, though failures recognized only in retrospect. What could be so different now? That we’re not considering lobotomies (which sever the frontal lobes) but cingulotomies (which sever into the anterior cingulate) and capsulotomies (which sever the connections between the cortex and the medulla that make up the internal capsule)?

h/t to ARPH’s Psychosurgery promoted by the NYT: Here we go, again; for a more optimistic take on this, see also Mind Hack’s Psychosurgery : new cutting edge or short, sharp shock (the only comment up there gives some pause, however).

Protected: Faking it

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On reasonable accommodation

Here’s the beginning of a recent autobiographical post from AbnormalDiversity, where you can go if you want to read the whole thing. It tells us a lot about how universities are organized, and what our social priorities are.

OK, so I’ve found out that the midterm in my women and gender studies class requires that I write three essays during the course of the exam, and I know that it’ll be really painful to write that much by hand in a short time, especially when I’m anxious. Well, since difficulty with writing can be a feature of autistic people, and I’m registered at the university as an autistic student, shouldn’t I be able to use a computer to write my exam?

Not so fast! They can’t just take my word for it! They need a doctor’s note, which means I need to bug my Dad about making an appointment with the doctor, so that I can go and tell her what I need and she can write it down. Why is this necessary, again? My doctor doesn’t actually know what accommodations I need, she’s literally just writing down whatever I tell her, so why can’t I just tell them directly?

But anyway, we get the doctor’s appointment, a couple of weeks after I first figured out that I needed it. Then I miss it. We reschedule, and finally I’ve got a doctor’s note saying I need to use a computer for essay exams.

Cognitive Disability and its Challenge to Moral Philosophy

Readers of the blog who followed our Thinking in Action series of blog posts on the above-named conference, held in New York in September 2008, as well as others, might be interested in having a look at the finished papers from that conference. They have now been published in a special issue of the journal Metaphilosophy (which strikes me, at least, as a strange venue). The table of contents is below and from here you can link to the abstracts for each of the papers; for the full versions, you need an individual or institutional subscription, it seems. To see some videoclips from the conference, together with critical commentary, check out the Thinking in Action posts themselves; nearly all of these directly discuss the talks at the conference corresponding to some of the papers listed below. The videos are both closed captioned and have transcripts with them to enhance accessibility.

thanks to shortintro for the blog comment that drew this to our attention.

**********

ARTICLES

INTRODUCTION: RETHINKING PHILOSOPHICAL PRESUMPTIONS IN LIGHT OF COGNITIVE DISABILITY (p 307-330)
LICIA CARLSON, EVA FEDER KITTAY
Published Online: Sep 18 2009 11:37AM
DOI: 10.1111/j.1467-9973.2009.01609.x

Abstract | References | Full Text: HTML, PDF (Size: 161K)
Save Article

Mental Illness

There is a lively debate around it. I find it strange that such article can appear in a student newspaper
here the article
but when one looks at other pieces it seems this column is mend to provoke

some reflection on it here

The underground world of “neuroenhancing” drugs.

by Margaret Talbot April 27, 2009

Every era has its defining drug. Neuroenhancers are perfectly suited for our
efficiency-obsessed, BlackBerry-equipped office culture.

Keywords Neuroenhancing Drugs; Neuroenhancers; Students; Adderall;
Stimulants; Smart Drugs; Underground
more here

Chromosomal microarray analysis, newgenics, and Annie Farlow

A recent news item in the Canadian Medical Association Journal by Roger Collier, Prenatal DNA test raises both hope and worries, discusses the relatively new prenatal diagnostic technique of chromosomal microarray analysis, contextualized by the case of Annie Farlow, which we have discussed in the posts What Sort of Death for Annie? and Deathmaking by medical neglect. Some think that Annie’s fate was sealed by her diagnosis of trisomy 13, not so much because of the nature of the condition itself but because of the downstream effects that labeling had on the medical treatment she received (or not). As the article says,

In August 2005, Annie, not yet 3 months old, suffered a respiratory attack and was admitted to hospital. She died within 24 hours. The official cause was “complications of trisomy 13,” but Farlow and her husband still don’t know the details, despite years of inquiry. They do know, however, that someone issued a do-not-resuscitate order without their consent. “I feel that the genetic testing ultimately determined her fate,” says Farlow, who lives in Mississauga, Ontario. “She was treated as a syndrome. She wasn’t treated as a child.”

Think Differently About Autism

From the National Autistic Society, in the UK, a short video on bullying, Asperger Syndrome, and what it’s like; h/t to Asperger Square 8. The video forms part of the NAS’s I Exist and Think Differently about Autism campaigns, which have been ongoing for the past year or so.

Description of video, partial transcript, and further information and links beneath the fold.

We stand for …

This is a great video created by DeedeeMom, and shown on his YouTube channel. It was created for the YouTube “What do you stand for?” competition in 2007.

The video is short; it has music in the background but no talking and all the text is fully displayed. The text in the video reads:

CFP, Brain Matters: New Directions in Neuroethics

When: September 24 – 26, 2009
Where: Lord Nelson Hotel, Halifax ♦ Nova Scotia ♦ Canada

Abstract Deadline: March 1, 2009

See the full call for papers here; summary of plenary speakers and topics beneath the fold. Note the following:

“Trainee Award Abstract Competition – Up to 15 monetary awards will be given to trainees whose abstracts for an Oral Presentation or Poster Presentation have been accepted by the Abstracts Committee. Awards will be made on the basis of merit.”

Go trainees!

Living with Trisomy 13, Part 1: Stereotype Propagation and the Illusion of Choice

[This is the third post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here; we’ll string together all posts in this series when we have most / all of them up.]

In the following video clip (with transcript) Sam Sansalone begins to share his experiences fighting to save his daughter, Katya, who was born with Full Trisomy 13 (a condition where the child has an extra chromosome 13, for more information see www.livingwithtrisomy13.org). I think you will find this story interesting for two points that Sam shares. First, there is the issue of medical personnel intentionally withholding information about the quality of life that children with Trisomy 13 can expect; an act of deliberately propagating a stereotype. The exact reason for sharing this behaviour is unclear but it is likely at best a form of misplaced paternalism and at worst a set-up for point two.

Point two is Sam’s experience with the illusion of choice that can so often exist in our society, whether inside the medical community or not. In such situations people are initially presented with the opportunity to make their own choice about a difficult decision (and typically information to sway them to a particular side, the tie-in to point one). If the choice falls inline with what is expected then all is well, there may be a few tears and some whispered “I know it’s hard, but you’ve done the right thing”s, but life goes on. BUT if the choice falls outside of what is expected, then you are clearly not in your right mind, your response is rejected, and authority for the decision is assumed by whomever gave you the illusion of choice in the first place.

When the bioethics community steps in

Article in St Louis Post-Dispatch (Missouri): Down syndrome advocates praise new law

CHESTERFIELD, Mo.— When Missouri Sen. John Loudon and his wife, Gina, decided to adopt their third child, they knew three things: They wanted a little boy, they would name him Samuel and he would have Down syndrome.

“This was always part of the plan,” said Gina Loudon as their now 3-year-old Sammy darted in and out of the living room in his slippers, giggling loudly.”We didn’t know much about how it was going to happen, but we just knew.”

The politically active couple with deep roots in the anti-abortion movement said their passion for Sammy spurred them to take legislative action on behalf of children with Down syndrome. It also put them in the center of an ongoing national discussion about genetic testing, the acceptance of people with disabilities and the type of information about Down syndrome that new or expecting parents were getting from their doctors.

Various studies estimate that 80 to 90 percent of parents who receive a prenatal diagnosis of Down syndrome through genetic testing choose to abort the fetus. Researchers believe this is the cause behind an 8 percent decline in people with Down syndrome in the United States in the past two decades.

NY Times article: This Journey Began Before Starting Line

Photo of Nadine McNeil embracing her 18-year-old son, Tyler.  Nadine McNeil will compete in her fourth marathon, but it will be the first for Tyler.  Photo by Rob Bennett for the New York Times

By CHARLES WILSON

Published: October 31, 2008

Nadine McNeil will reach the crest of the Verrazano-Narrows Bridge on her handcycle soon after 7:30 Sunday morning. Moments later, she will roll swiftly past her 18-year-old son, Tyler, who is autistic. This will be her fourth marathon, and Tyler’s first. She has grown uneasy this week thinking of the moment when she will leave him behind.  “I can’t look back,” she said. “For 18 years, I’ve always known every moment where Tyler is. On Sunday, I won’t.”

Though joint parent-child appearances in the New York City Marathon are not uncommon — Rod Dixon, the race’s 1983 champion, is returning this year to run the race with his daughter — the path that brought Nadine, 42, and Tyler to the marathon is an unlikely one. Nadine had a stroke when she was 8 and lost the use of her right arm and her right leg. Tyler, her only child, is severely speech-delayed. Even now at 6 feet 4 inches, he communicates verbally by using one or two words at a time.

Nadine has poured her life into her son. Tyler, in turn, is what she calls “my right arm.” He compensates for her disabilities by tying her shoes. He does her buttons and zippers. If she tries to put on her coat, he will immediately rush to her side and gently lift her right arm into the sleeve.  Neither would have ever made it to this year’s starting line without the other.  Read the entire article here: http://www.nytimes.com/2008/11/01/sports/othersports/01marathon.html?th&emc=th

Positively Autistic

Autism Awareness icon

CBC News has just run a special, Postively Autistic, that many will find of interest–the link to the site is beneath the fold below as well as a transcript. The video runs 19 minutes, and features Amanda Baggs, Ari Ne’eman, and Michelle Dawson, amongst others. The site for the special also contains a lot of other information. General drift: representation of autism as a positive human variation that stands in need of social acceptance, and links this view to the disability rights movement and the idea of neurodiversity. It’s a bit more choppy than I would have liked, and has very articulate autistics (like Baggs and Ne’eman) speaking for auties as a whole. Maybe this is a good way to start with introducing the idea of autism as a form of natural human variation, but we might push further and represent more of this variation, some of which folks will find more disturbing. (Here having Dawson in here is a bonus, since while she’s incredibly articulate, she also conveys a few more clues about the kind of variation one might find on the spectrum. Sadly, there’s not an extra piece on her, only on Laurent Mottron, whom she works with in Montreal, on the CBC website. I suspect that was a personal choice of Dawson’s.)

To be sure, this is not a way of saying

CFP: Special Issue of Disability Studies Quarterly on Autism

Submission deadline: Jan. 1 2009
Projected publication date: Summer 2010

Co-editors: Emily Thornton Savarese, University of Iowa, and Ralph James Savarese, Grinnell College

We are looking for completed articles, from a disability studies perspective, on what the medical community refers to as ASD (Autism Spectrum Disorder). We are especially interested in pieces that engage the so-called “low-functioning” end of the spectrum, where increasingly those presumed retarded and lacking social awareness are writing back to the empire of science. As the field of disability studies has theorized cognitive difference, it has had to refine its cherished social-constructionist approach, making sure to account for physiological distinctiveness in the organ of sensibility, a distinctiveness that has been interpreted in a myriad of ways, most quite prejudicial. We are interested in the burgeoning neurodiversity movement, which has self-consciously resisted such prejudicial interpretations, often revealing the “science” of autism to be anything but reliable and objective. How to talk about autistic difference? How to represent it? How to convey its gifts and challenges? Who can talk about it? What role should parents play in this representational arena? What role should teachers, doctors, researchers, therapists, media entities, and academics play? What kind of interdisciplinary approaches are needed to understand, respect, and even cherish autism?