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 Continue reading

Truth & Reconciliation Commission – Edmonton March 27 – 30, 2014

For 116 years, thousands of Aboriginal children in Alberta were sent to Indian Residential Schools funded by the federal government and run by the churches. They were taken from their families and communities in order to be stripped of language, cultural identity and traditions.

Canada’s attempt to wipe out Aboriginal cultures failed. But it left an urgent need for reconciliation between Aboriginal and non-Aboriginal peoples.

There were more Indian Residential Schools in Alberta than in any other province. The Truth & Reconciliation Commission of Canada (TRC) is holding its Alberta National Event in Edmonton this year.

Come and share your truth about the schools and their legacy. Witness and celebrate the resilience of Aboriginal cultures.
(excerpt from TRC.ca)

Alberta National Event – March 27 – 30, 2014 will be held in Edmonton at the Shaw Conference Centre 9797 Jasper Avenue. No registration needed to attend. Those wishing to provide a statement to the Commission may register onsite during the event.

You can download the program click here

On Thursday March 20 from 3:00 pm – 5:00 pm at the University of Alberta, Lister Centre, Maple Leaf Room
Understanding the TRC: Exploring Reconciliation, Intergenerational Trauma, and Indigenous Resistance featuring:

Commissioner Dr. Wilton Littlechild
Dr. Rebecca Sockbeson
Dr. Ian Mosby
James Daschuk
Dr. Keavy Martin
Tanya Kappo
Moderated by Jodi Stonehouse

Reception 5:00 pm – 6:00 pm – Tea, bannock and berries. Event is free.

Gala Reading featuring:
Marilyn Dumont
Daniel Heath Justice
Eden Robinson
Gregory Scofield
Anna Marie Sewell
Richard Van Camp

Friday, March 21 from 7:30 pm – 9:30 pm in Humanities Centre L-1 (111th Street and Saskatchewan Drive)
Giveaways. Books for sale. Free Admission

You find this information and links to campus maps here

What happens when your son tells you he’s really a girl? Inside the families embracing the new world of gender variance

Some medical professionals see gender variance as a natural characteristic of human diversity, similar to sexual preference, that should be accepted and even celebrated. An article in Macleans (Jan 6, 2014) explores the lives of supportive families and their trans and gender variant children..

The Public Health Agency of Canada published comprehensive recommendations in 2010 for schools to support gender-variant students and several provincial governments have added “gender expression” to the list of prohibited grounds for discrimination. The tides may be turning but the need for education is high. The negative judgement of trans individuals suggests there is a 17% higher risk for suicide and even higher risks for being bullied by others.

The Macleans article also has a short video embedded within and pictures throughout, providing a glimpse into the daily lives of trans and gender-variant children and their families. This is an excellent introduction and movement towards educating the public and advancing the needs of trans youth – which is a natural characteristic of human variation.

You can read the article here: http://www2.macleans.ca/2014/01/13/what-happens-when-your-son-tells-you-hes-really-a-girl/

 

In the United States the National Gay and Lesbian Task Forces and the National Center for Transgender Equality conducted a survey of 6,450 trans and gender non-conforming individuals from all 50 states. This study was the first of its kind and provides us with a clear picture of what needs to change in order to stop the injustice in their lives..

Discrimination against trans and gender variant individuals provides critical data for policymakers, community activists and legal advocates to confront the appalling realities. Respondents experience higher levels of poverty and a staggering 45% of those survey reported attempting suicide. Harassment and discrimination in education was reported at alarmingly high rates and include physical assault (35%) and sexual violence (12%). Harassment was so severe that it led to almost 15% to leave school in K-12 settings or in higher education..

Abuse by Police, discrimination in health care and public accommodations, employment discrimination and economic insecurity, as well as housing discrimination, barriers to receiving updated documents (identification and personal records). The 6,450 individuals all reported that family acceptance was of great importance, although the majority reported experiencing family rejection. Despite all of the harassment, mistreatment, discrimination and violence faced by trans individuals the study demonstrates their determination, resourcefulness and perseverance. This report is a call to action for all of us, especially for those who pass laws and write policies. Inaction is a form of violence that will negatively affect trans and gender variant people. Take up the call for human rights for transgender, transsexual, trans, and gender variant people and confront the patterns of abuse and injustice. Let’s learn (and teach) the values of human variation to our children, to each other and let’s learn more ourselves!.

You can access the full report titled “Injustice at every Turn” here: http://www.TheTaskForce.org or here: wwww.TransEquality.org. You can also get more information about the survey at: http://www.EndTransDiscrimination.org

Judge approves man’s sterilization

It is the first time in England and Wales a court has sanctioned a man’s sterilization. A High Court judge has sanctioned the sterilization of a man “in his best interests” in a landmark legal ruling.
The 36-year-old, from the Midlands, has learning difficulties and already has a son, born in 2010, with his girlfriend.
Justice Eleanor King ruled that a vasectomy could take place after hearing that another child could cause the man :psychological harm.”
Experts said he was capable of sexual consent but did not have the capacity to make decisions about contraception.

The entire story was released today in the BBC News and can be viewed here: http://www.bbc.co.uk/news/uk-23721893

Andrew Solomon: Far from the tree

Andrew Solomon’s book, Far From the Tree, provides a fresh perspective on families and disability culture with his notions of vertical and horizontal identities. Although it certainly connects with work in disability studies and notions of deviance. It provides something new. In this talk, Solomon talks about various kinds of differences in families.

Dick Sobsey on parenting and intensive needs

The Agony and the Ecstacy of Parenting a Child with Intensive Needs

by Dick Sobsey

This post is for parents of children or adults with MECP2 Duplication Syndrome but it is also for all parents of children or adults with intensive needs. It is about how having a child with intensive needs changes our lives so fundamentally… about how challenging and sometimes painful it makes our lives…. but also how it enriches our lives and makes our lives better in some ways.  To read more: http://networkedblogs.com/NMw4h

Nutritional Experiments on Aboriginal Peoples in the News

As a follow-up to the previous post, “Hungry aboriginal kids, adults were subject of nutritional experiments“, here is some coverage of the events through the Toronto Star and CBC.  Article highlights are as follows.

After World War II, the Canadian government subjected aboriginal children and adults to nutritional experiments without their consent.  Many of these experiments were conducted in order to gather information about what the human body needs in terms of vitamins and nutrition.  It resulted in lack of dental care for Aboriginal peoples as well, in order to use gum health as an undistorted measuring tool for scientists (Livingstone, Toronto Star).

Justice Murray Sinclair, chair of the Truth and Reconciliation Commission, states in the Toronto Star that

“This discovery, it’s indicative of the attitude toward aboriginals,” Sinclair said. “They thought aboriginals shouldn’t be consulted and their consent shouldn’t be asked for. They looked at it as a right to do what they wanted then.” (Sinclair, July 21 2013)

It is likely that even at the time, these experiments were seen as ethically dubious (perhaps especially after the atrocities of World War II), and therefore probably why Ian Mosby, the post-doctorate from the University of Guelph, whose research brought these policies to life, uncovered only “vague references to studies conducted on ‘Indians'” while researching the development of health policy for a different project (Livingstone, Toronto Star).

Mosby elaborates, again suggesting the classification of Aboriginals as less than other people,

“I think they really did think they were helping people. Whether they thought they were helping the people that were actually involved in the studies — that’s a different question.” (Mosby, July 21 2013)

The CBC provides archival material from via historian James Daschuk, of a 1946 report of the lives of First Nations in Northern Manitoba.

1946 Report: Medical survey of nutrition among the Northern Manitoba Indians

You can read the full articles through the links below:

Toronto Star: http://www.thestar.com/news/canada/2013/07/16/hungry_aboriginal_kids_used_unwittingly_in_nutrition_experiments_researcher_says.html

CBC: http://www.cbc.ca/thecurrent/episode/2013/07/18/starvation-politics-aboriginal-nutrition-experiments-in-canada/