Out from Under: Now a New Home

Great news that the awesome exhibit, Out From Under, will now be a permanent feature of the New Canadian Museum for Human Rights.  I visited the exhibit with the curators in 2008 at the ROM in Toronto, and it was a great experience.  Congratulations, Catherine, Melanie, and Kathryn.

Future Past: Disability, Eugenics, and Brave New Worlds

This is the first of three panel discussions at the Future Past: Disability, Eugenics, and Brave New Worlds symposium hosted by the Paul K. Longmore Institute on Disability at San Francisco State University. This panel covers the WHAT? giving an overview of the symposium’s focus: the history of eugenics movements in North America, and why they are disturbingly relevant today.

Presenters: Alexandra Minna Stern, Marcy Darnovsky, Glenn Sinclair, Nicola Fairbrother

If you are interested in watching more panels from this symposium, please visit:

http://youtu.be/duFgYsWxAlU

The Unhealthy Side Effects of Mixing Medicare with Big Business

Cancer drug shortages in the United States are putting lives at risk, especially when treatments require regular dosages over extended periods of time.  Alice Park of Time Magazine writes:

In late February, when Divers called the hospital to confirm Alyssa’s upcoming chemotherapy treatment, the nurse informed her that there was a drug shortage. The hospital couldn’t be sure that there would be enough methotrexate — the cornerstone of therapy for some childhood cancers, including leukemia and osteosarcoma — to treat Alyssa, now 10. Divers was told she might have to reschedule the session; the hospital would let her know. “It made me sick to my stomach to hear that,” says Divers, a former chaplain from Palmyra, Va. “Alyssa was in treatment for over a year already, and the last thing you want to do is add unnecessary delays in treatment, which gives the cancer a chance to catch up.” Divers explains that her daughter’s cancer doubles in tumor load every 34 days, “so you need to hit it again and again to eradicate it.” (See article)

And this is just one of the many cases.  But what is causing these shortages?  Although this is not the whole story (since the big picture is a bit more complicated, including procedural issues with FDA inspections), a substantial portion of the problem is caused by the economics of drug supply.  One thread of the economic story goes something like this: in order to make chemotherapy treatments easier for patients, doctors began offering infusions in their offices rather than in hospitals.  The 2005 reimbursement scheme, however, allowed doctors to be reimbursed at a 6% profit.  The problem was that the reimbursement price lagged behind the market prices by six months, which made the reimbursements lower than what the doctors paid for the drug, essentially pushing some physicians to prescribe pricier brand name drugs.  This, in turn, amounted in lower orders of generic drugs, which further shrank the market.

“In order to gain market share, companies underbid the market to get the business, and it’s a race to the bottom,” says Dr. Len Lichtenfeld, deputy chief medical officer for the American Cancer Society. “Whoever is the last company standing can’t charge enough to make a profit on the drug and to make needed investments to keep making the drug.” That’s what may have happened with the methotrexate that Alyssa Divers depends on. (See article)

To add to this incredible situation, once the drug shortages were publicized, doctors started receiving offers from distributors, with stockpiled stashes of the harder to get drugs, who were very happy to sell the medicines, charging “$800 to $900 per gram for a medication that normally costs $16” (see article).

I guess that one way to respond to this is to blame the government for its untimely reimbursement policy, which certainly makes me wonder (why is there a six month lag in the first place?).  What really puts a bad taste in my mouth, however, is how intimately the production of pharmaceuticals is linked to the administration of treatments that use certain drugs.  When a profession views itself as essentially helping humankind by caring for human well being and health and when the societal respect is accorded to this profession for such reasons, it is more than disheartening to find out how closely some such professionals can resemble mere pedlars of life when viewed in light of their business connections to pharmaceutical companies (which seem to have no moral qualms about charging 56 times the market worth of a life-saving medicine).

Questions about the growth attenuation working group article in HCR Part 3

The WG article makes the divide between proponents and opponents look far smaller than reality to make the controversy itself look far less grave than it actually is.

It notes at the beginning of the article that the group members share the views about profound disabilities as below.

1)    They are concerned that people with profound disabilities are devalued.

2)    They believe more investment in medical and social services is priority.

3)    They think societal attitudes toward people with profound disabilities should be improved.

4)    They also think that parents of profoundly disabled children should be “afforded respect and considerable deference in making the complex and difficult decisions unique to their child’s care.”

They can’t share the first three views, because opponents’ point is that the rationale of growth attenuation is incompatible with these concerns. Its rationale discriminates and devalues children with profound disabilities.

A UN case study in Muslim, African and communist homphobia by Jonathan Kay

Today is World AIDS Day and a good time to reflect on many advances, or is it? National Post Journalist, Jonathan Kay presents  interesting details  about International as well as Canadian homphobic politics in this article, dated November 22, 2010. Apparently “killing someone because they’re gay just isn’t that bad.”

No one expects Saudi Arabia, Cuba and Liberia to start printing gay-marriage licenses any time soon. But would it be too much to ask that these countries at least oppose the targeted murder of homosexuals?

CBC News – Edmonton – Alberta’s sex sterilizations re-examined

from CBC Edmonton, last night, with stacks of comments already.

CBC News – Edmonton – Alberta’s sex sterilizations re-examined.

“The Ashley Treatment” has been done to a dozen of children, Ashley’s father says, but who sent the email to him?

In his third anniversary update of January 13, Ashley’s father writes “About dozen parents all over the world who are successful at providing the treatment to their Pillow Angels (boys and girls) are in contact with us.” He also mentions an email from “an attending doctor of a panel on Growth Attenuation at the pediatric conference held in Hawaii in May 2008” that says “when we asked for a show of hands, about half of the room said they had been approached by a family seeking growth attenuation, and about a dozen raised their hands when asked if they had offered it to a family.”

Claire wrote a great post here about this shocking revelation, pointing out that the growth attenuation is being justified for children with far lighter disabilities than Ashley’s for caregivers’ convenience. I appreciate what she has been writing on this issue. I agree with her 100% and share her sorrow at this new information.

Here, I would like to raise a question. Who is “ an attending doctor” who sent the email and reported to Ashley’s father about how the conference had gone?

The American Academy of Pediatrics had an annual meeting in Hawaii May 3-6, 2008. I found the program of May 4 here. The program 4195 titled “The Pillow Baby: Growth and Puberty Attenuation in Children with Profound Developmental Disability” seems to be the panel mentioned by Ashley’s father.

A legal article says that courts should take new standards and approve the “Ashley Treatment” because the therapy can be more important than non-person’s fundamental rights

 I know Peter Singer’s assertion that children with profound mental disabilities are not entitled to “moral status”. I remember Dr. Diekema argued defending the Ashley case that Ashley is not entitled to the same dignity as others are because she is just like a baby. Now I’m shocked to read a paper written by a lawyer named Christine Ryan that says profoundly incompetent persons may not be entitled to the basic rights protected by the Constitution because they can be non-persons depending on the definitions of persons.

Revisiting the legal standards that govern requests to sterilize profoundly incompetent children: in light of the “Ashley Treatment,” is a new standard appropriate?

Christine Ryan, Fordham Law Review, September 26, 2008

This is a long article of about 40 pages. Starting with a detailed review of the Ashley case and its development, the first thing the author does is to point out that profoundly incompetent persons are not entitled to the basic individual rights acknowledged by the Constitution based on the definition of personhood. It also mentions the UN Convention on the Rights of Persons with Disabilities and states that constitutional protections attached to persons with disabilities by the Convention require consciousness as the minimum condition of personhood,

Social Cleansing in Columbia

In the years between 2000 and 2005, it is alleged that social cleansing was common in Columbia. No one seems to know how many people were killed, details have emerged from a small number of cases while some alleged that these murders were almost daily events. The alleged targets of these killings were people known or thought to be homosexual, addicted to drugs, or mentally disabled. The alleged perpetrators were members of paramilitary militias. And it is also alleged that government prosecutors simply ignored the killings and allowed them to continue.

Human Kinds–Species Typical, Sub-typical, Beyond Typical–Q@A

A couple of questions from our panel for Gregor Wolbring–one from Ed Stein on human rights, and one from Natasha Vita-More on environmentalism and uploading.

If the discussion interests you, drop back and hear Gregor’s talk in Parts 1 and 2, or drop us a line or a comment.

Obama to Sign Convention

This week U.S. President Barrack Obama announce plans to sign the United Nations Convention on the Rights of Persons with Disabilities. This  fulfill a campaign promise that President Obama made prior to his election.

The new growth attenuation paper by Dr. Diekema, Dr. Fost with others

I read the full text of the growth-attenuation paper written by Dr. Diekema and Dr. Fost with others in the June issue of the Pediatrics. So many questions and mysteries again. I will point out some of them here for now. Some of the questions and mysteries will be reviewed more closely in my future posts.

1. The authors’ definition of profound cognitive disability “for purpose of growth-attenuation therapy” is not totally about cognitive disabilities but mostly about physical disabilities. It disguises the fact that growth attenuation is in fact a therapy that addresses problems caused by severe physical disabilities, not by cognitive disabilities, which they have been using as a convenient excuse for justification. But maybe we should also note that the authors didn’t forget to add “for present time” when they wrote that it should be limited to children with profound cognitive disability.

2. Their justification for excluding hysterectomy and breast bud removal from discussion is something like this: Criticism was mostly targeted at hysterectomy and breast bud removal in the Ashley case controversy in 2007 (implying maybe that growth attenuation was not all that criticized and pretty much approved?), and in addition, growth attenuation does not necessarily accompany the other two interventions. But these are lame excuses.

Institutional Dehumanization

Sometimes, in our current discussions of human variation in the age of genetic manipulation, it is easy to forget the central role of the environment  in shaping human behaviour. This video from United Nations Television provides a powerful example of institutional dehumanization and of the power of families and communities to overcome dehumanization.

A transcript follows the cut.

Schrödinger’s Cat & Donation after Cardiac Death

Quantum Ethics: Schrödinger’s Cat & Donation after Cardiac Death

Recent discussions of transplanting hearts from so-called DCD (Donation after Cardiac Death) patients into others (for example the recent Baby Kaylee saga at Toronto’s Hospital for Sick Children) raise serious questions that seem to only have explainable answers in the field of quantum physics. I don’t know if physicist Erwin Schrödinger actually had a living, breathing cat but the hypothetical cat that he proposed to illustrate a paradox back in 1935 to illustrate a paradox has certainly achieved fame.

Saving the World with Viral Eugenics

Randall Gordon, a character from Paul Chadwick's Concrete series, points his finger at YOU, a la Uncle Sam, with the following speech bubble: "I'm completely serious, and I repeat my appeal. You, out there. Somewhere. Sexually transmitted; no undue harm; infertility. Go save the world."

And so a tale already fraught with controversy unleashes an ethical bombshell…

My doctor, my child: The response of the medical community to a mother who chooses to have a child who might be born with a disability

[This is the second post in a series highlighting a public dialogue heald 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.]

The story you are about to hear you may find surprising in a number of ways; I know that I certainly did when I heard it on the night it was recorded. The contrast between the adversity faced by Wendy MacDonald and her family from the medical community upon making the decision to keep her baby early in the pregnancy and the support they received once it was finally time for Kyle to be delivered struck me as a very unfortunate demonstration of the power of linguistic framing. The shift in language from “miscarriage” to “premature birth” is a small one (the addition of one word, one syllable, and three letters), but it made all the difference for this family and the ability of the medical personnel involved to support them. I also found the adamant stance of her family doctor a bit perplexing, the sort of chilling paternalism that so often arises out of a misplaced belief that we alone have access to the knowledge of what is best for others. Perhaps even more than this I was surprised that this story had, and continues to have, a happy ending. For every Wendy MacDonald I am sure that there are many, many women who would be mothers and men who would be fathers that are bullied into conforming with the system because the system “knows best.”

Perhaps this video will make you a little angry, but it should also give you a little hope. Enjoy. Transcript of the clip beneath the fold.

Peter Singer & Profound Intellectual Disability

[This post is the fifth in our new series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September.]

In a previous post, I questioned that Peter Singer’s position that moral status should be based on the demonstration of higher cognitive powers and not based on merely being human. In this post, I want to address his statement that the decision to keep children with profound mental retardation alive is acceptable as a parental choice but not an ethical obligation because such children have no moral status, since they lack the requisite higher cognitive powers. In making my case against this position, I intend to show that Singer’s arguments are based on a misunderstanding or misrepresentation of profound mental retardation or profound intellectual disability as it is more commonly called today. I doubt that Professor Singer has much personal experience with people with profound intellectual disabilities since his impression of them as a group seems very abstract and largely inaccurate. Although I would argue against the denial of moral status (and thereby of universal human rights) to people with profound intellectual disabilities, even if Singer’s assumptions about this group of people were true, I feel that it is important to correct the inaccurate assumptions presented about this group. Here is what Dr. Singer has to say about them:

Olympics/Paralympics, Beijing, and a wheelchair-accessible subway system

(This news story originally appeared on the Wired blog, with credit to be given to BA Haller over at the Media and Disability blog.)

 Snapshot of Beijing subway station with a train in the station.  In the foreground, the viewer sees a wheelchair symbol on the platform indicating an accessible entrance and exit. ST

In what may be the most significant improvement in human rights brought about by the 2008 Olympics and Paralympics, Beijing has become less of a Forbidden City for the disabled. Even though more than one million disabled people live within its city limits, Beijing’s crowded subway was practically inaccessible to anyone not able to rush to the front of the platform on their own two feet. Now, according to the official Chinese government information site china.org.cn, the improvements made in preparation for the Games will become permanent, allowing disabled riders to travel without barriers.

 “I can’t believe this is true. Three hours ago I was at home, and now I’m here with all these others watching Paralympic Games competitions,” randomly-selected wheelchair-bound Beijing citizen Wang Shufen said. “The volunteers and subway and bus workers were really helpful. Without them, I would never have made it.” Of course, China.org.cn made sure to note that the 70-year-old Wang was smiling all through her interview, and never mentioned whether she lived ten feet or ten miles from the stadium. Still, for a city that banned the country’s few guide dogs and disqualified the disabled from entrance to many schools, any effort to open the city’s transit infrastructure to the disabled is a welcome change.

Read the full story here: http://blog.wired.com/cars/2008/09/barrier-free-be.html

1930s Drama Exposes Horrors of Forced Sterilization

Tomorrow's Children

Tomorrow’s Children is a 1934 drama that intends to make a bold statements about everything that is wrong with forced sterilization.

Thanks to the magic of YouTube and the passage of time this film is both available for viewing and in the public domain.

Bloggers Unite

Bloggers Unite for Human Rights

Bloggers Unite is an initiative designed to harness the power of the blogosphere to make the world a better place. By challenging bloggers to blog about a particular social cause on a single day, a single voice can be joined with thousands of others to help make a real positive difference; from raising awareness for cancer, to an effort to better education systems or support 3rd world countries.

May marks the first anniversary of Bloggers Unite and BlogCatalog members are launching an awareness campaign chosen by . On May 15, we will unite for human rights and make a statement that all people are born with basic rights and freedoms – life, liberty, and justice!

On May 15th 2008, join us blog about Human Rights. There are dozens and dozens of human rights issues that you can write about. The one you choose is up to you.