An incredibly thought-provoking talk on identity, disability, love and parenting.
“what do we validate in our children and what do we cure in them?”
An incredibly thought-provoking talk on identity, disability, love and parenting.
“what do we validate in our children and what do we cure in them?”
2nd Annual INSPIRe Virtual Symposium September 8-21, 2013
International Network of Student Perspectives In Research
Illuminating the world through student research, networking and discussion
“Exploring ability expectations through diverse disciplines and topics”
Call for papers see here DEADLINE 30 JULY 2013
Conference organized by my students for students
On June 6th, 2013, the Living Archives presented the paper “Living Archives on Eugenics in Western Canada: Oral History & Technology as Public and Academic Resources.” This presentation was given at the 41st annual conference of the Canadian Association of Information Science (CAIS-ASCI), at the University of Victoria in British Columbia, as part of Congress 2013 for the Humanities and Social Sciences. The purpose of CAIS is to promote the advancement of information science in Canada, including the exchange of information relating to use, access, retrieval, organization, management, and dissemination of information. Members include information professionals such as archivists, librarians, compter scientists, psychologists, etc.
The theme for CAIS 2013 was “Tales from the Edge: Narrative Voices in Information Research and Practice,” and showcased leading edge research and practice revolving around narrative. The Living Archives Project deals strongly with methods of narrative, as the project involves capturing not only archival documents related to eugenics and its history in Western Canada, but the oral history of eugenics in Western Canada as well. Further, LAE seeks to bring the narrative of eugenics in Western Canada to the public and academic researchers alike, through initiatives such as the development of high school modules, and an interactive, multimedia website, which showcases these materials in new, accessible, and innovative ways.
Led by Moyra Lang, Project Co-ordinator, the talk covered a brief history of eugenics in Western Canada, some information about the formation of the project, and an overview of the research methods used in producing the project deliverables, described above. These methods include an interactive and phenomenological framework, with auto-ethnographical approaches, in the creation of oral history video interviews (which are edited by interviewees themselves); and grounded theory in the use of “memo-ing,” a process of recording thoughts and ideas immediately after conducting an interview, in order to help improve the process. Special attention was give to efforts on the part of the project to provide a safe environment for these oral interviews to take place, and of the development of accessible materials (both digitally and physically through physical spaces used for events). The talk was co-developed with technical team research assistant, Colette Leung.
For a full list of conference proceedings, including a short abstract, see the CAIS Programme here.
At the Alberta Literary Awards last night, the play The Invisible Child received the Gwen Pharis Ringwood Award for outstanding play. The play was written by David Cheoros, Lou Morin, and Leilani Muir (O’Malley), and was performed at last year’s Edmonton International Fringe Festival. A special reading of the play was given at the Living Archives team meeting in October 2012, and footage of both performances features in the Alberta Eugenics Awareness Week highlights video, which will be released later this week. Congratulations to the team that wrote and performed Invisible Child on this well-deserved honour!
Interesting article on the construction of disability in China by Yee-Fui Ng (Sessional Lecturer and PhD Candidate, Monash University Law School). The abstract: This article explores the tension between the Chinese government’s strong engagement in disability rights and simultaneous focus on ‘quality births’, which results in the abortion of disabled foetuses. At a broader level, the author examines the politicised and cultural construction of disability in China by scrutinising how the ‘disabled’ are defined, administered, policed and governed in postsocialist China.
Where are all the disabled people in body positivity campaigns? – a powerful article on beauty and disability.
Living Archives Team member Dr Heidi Janz has been recognized as a Woman with Vision. Heidi is a playwright, author, researcher, PhD scholar, adjunct professor and a woman with cerebral palsy. Lesley MacDonald from Global Television Edmonton calls Janz a “remarkable woman.” When I asked Heidi if I could share this article on the Living Archives blog she said “Sure. The headline kind of makes me sound like a 21st-century female Ironside!” I’s true I thought. All we need is a picture of Heidi with her side-kicks – cue the music!
The article by Lesley MacDonald can be found here: http://www.avenueedmonton.com/blogs/janz-crime-victim-is-an-advocate-for-the-disabled
The Right to Not to Work: Power and Disability by Sunny Taylor
“The disabled are viewed with sympathy as victims of “bad luck” who will simply have to accept disadvantage as their lot in life, not as an identity group that is systematically discriminated against. Unlike sexism and racism, which are perceived to be significant social problems, disability falls under the social radar and disablism is not recognized as a damaging or even particularly serious form of prejudice.” The public remains unconvinced that the struggle for disability rights is actually their sturrgle as well….
The entire article and self-portrait can be found here: http://monthlyreview.org/2004/03/01/the-right-not-to-work-power-and-disability
Canadians with disabilities are about one and a half times as likely to be victims of violence as other Canadians. People with disabilities in Canada have civil rights on paper but not in practice. Canadian citizens, everyday, have their civil rights ruthlessly violated by their government. This has to be stopped, because Hope is Not a Plan!
Recently, the Alberta government announced the future closure of the Michener Centre, an institution that houses people with developmental disabilities in Red Deer, Alberta. The centre is home to some 125 Albertans with developmental disabilities and has been in operation since the 1950′s.
Support for the closure of Michener Centre
Our family supports the closure of Michener Centre! Everyone can live in community!
Family members write about their support for closing Michener in the Red Deer Advocate. Many supportive comments follow the article. Follow the link at the bottom to view the letter online.
Special Issue of the International Journal of Disability, Community & Rehabilitation (IJDCR) with the theme What Sorts of People Should There Be?
Edited by Gregor Wolbring, Associate Professor Community, Rehabilitation and Disability Studies, Department of Community Health Sciences, Faculty of Medicine, University of Calgary, Canada is now available.
Professor Rob Sparrow will be giving two talks in Edmonton at the University of Alberta on Monday April 8 and Tuesday April 9, 2013. Both talks are open to the public and free! Talks are being held on campus in ETLC (Engineering Teaching & Learning Complex) located just off 116 Street between 92 Avenue and 91 Avenue. Public Parking can be found in Windsor Car Park. On Monday April 8th from 3:30 Pm – 5:00 pm ETLC room E1-003 (wheelchair accessible) Professor Sparrow’s lecture is called “In Vitro Eugenics” and on Tuesday April 9th from 3:30 pm – 5:00 pm his lecture is titled “The paradoxical ethics of PGD”. The abstracts for these talks are as follows:
Blogger Cassy Fiano writes about parents who try to force their surrogate to abort their disabled baby. Cassy is has two sons, one has Down Syndrome.
Crystal Kelley wanted to give the gift of a baby to a family who couldn’t have children. She also needed the money that surrogacy brings. And so, she ended up becoming a surrogate mother to a couple in her state of Connecticut who had three children but wanted more. The first half of the pregnancy was friendly and happy, with Kelley and the parents communicating regularly.
Then there was an irregular ultrasound. After several more ultrasounds, the picture was clear: this was a baby who would be born with some disabilities. She had a cleft lip and palate, a cyst on her brain, and a heart defect. The baby’s parents immediately began to pressure Kelley to have an abortion, claiming it was the more “humane” option. Now, most decent people wouldn’t consider it humane to rob a child of her life simply because she might have a disability. This was the way that Kelley felt, and she refused to have an abortion
From the Center for Genetics and Society blog, by Gina Maranto, Biopolitical Times guest editor, March 4, 2013
The unfortunate truth is that discredited ideas never do die, they just rise again in slightly altered forms—witness eugenics. Despite the horrors perpetuated in its name, including forced sterilization and the Holocaust, the eugenic impulse is with us still. One of the forms it takes is schemes for “improving” offspring through the selection and manipulation of embryos.
In the last year or so, one neo-eugenic advocate in particular has been garnering media attention. He’s Julian Savulescu, holder of an array of titles, including an endowed chair and directorship of a center at the University of Oxford funded by the Uehiro Foundation on Ethics and Education.
Wednesday March 20, 2013 at 3:00 pm – 4:00 pm in Education South Building at the University of Alberta the Living Archives on Eugenics is sponsoring a panel discussion featuring Professor Lise Gotell, Chair of Women’s and Gender Studies and Dr. Lane Mandlis, with Moyra Lang, and Professor Rob Wilson. ASL interpreting services will be offered at this event. Find us on Facebook http://www.facebook.com/#!/events/270019033131796/?fref=ts
April 7 – 11, 2013 Guest Scholar Rob Sparrow will be visiting Alberta, watch for details on talks and presentations. More information will be posted soon.
The following is another Canadian tragedy unfolding within our neighbouring Province of British Columbia, the case of Ayn van Dyk:
This incident is transpiring against my good friend, Derek Hoare and his family. Derek Hoare, the father of 3 children, has become the target of Ministry of Children & Family Development (MCFD.) Derek is a single father of a neurotypical child and 2 children with Autism. In guise of “helping” alleviate stress on the family, the youngest child, Ayn van Dyk, was captured by ministry representatives from her school when the father refused to surrender guardianship. Ayn was taken, restrained, placed on sedating drugs and sent to foster care where she has been languishing in the System for months awaiting the Court to hear circumstances.
No allegations of abuse or neglect are present in the case. Rather, Derek is lauded as a wonderful, extremely well-versed man whose love and concern for his children is evident to all, including the ministry themselves!
In the Spring of 2011, Ayn, while playing – supervised – with her siblings in the yard, manipulated a play structure and wandered into a neighbour’s yard. Concerned for Ayn’s safety, dad called upon police to assist in search; as any competent parent would do. Ayn was located safe and all seemed to be well. However, MCFD appeared shortly afterwards demanding Ayn receive psychiatric evaluation despite explanations that the behavior is in keeping with children on the Autism Spectrum. A hospital confirmed that the child was not psychotic, simply a little girl with ASD (Autism Spectrum Disorder.) However, officials have dug in their feet, refusing to return Ayn home to her loving family. It is not only Ayn who is suffering, but also her 2 brothers whom adore their young sister.
This case is a blatant example of the lack of understanding authorities have for persons with developmental diversity. Although Eugenic practice is said to have ceased in Canada, it remains a blemish on our nation. Individuals like Ayn, with developmental differences, used to be locked away and isolated in institutions and Society, when educated, said, no more! However, children with disabilities continue to be targeted with removal from loving families and instead of institutions, placed into government foster placements. Family units are being destroyed and children ripped from loving homes as experts pretend that they comprehend the unique needs of children who are not ever going to fit into “cookie-cutter” moulds. Supporting natural families with services and funding directly proves the most cost-effective, viable and humane solution.
This case sits very close to my heart because my child, too, was taken from our home into “care” – as directed by ministry representatives – the sole method of attaining required service supports that would offer “an opportunity at life” for anticipated severe needs. Only, our daughter was failed: Samantha Martin died at age 13 from a sudden heart attack. She had been subject to 7 broken limbs while in residence of a medical foster placement and denied intervention for a long-standing seizure disorder. I do not want what happened to my child to ever strike another little being. Having spent time with the Hoare – van Dyk family, I am particularly distressed that despite the lessons that Samantha’s life disclosed and should be impacting subsequent cases like Ayn’s, foreboding circumstances continue to transpire. Little Ayn has escaped her foster placement twice as she tries desperately to return to the only family she has ever known and loved. Somehow, officials fail to recognize this fact.
What will it take for authorities to remember that honouring the rights of the Child must be inclusive of all Children; those with disability too? Decisions are portrayed to be made in the best interests of the child and in a timely manner, yet in no uncertain terms have these premises been adhered to.
Canadians should be alarmed that this situation is taking place. Autism is the most common form of any neurological disorder on the rise, with “one in 54 boys” identified with it according to report from the National Epidemiologic Database for the Study of Autism in Canada. Thus, all of us will be impacted by diversity in some form – whether it is through the birth of one’s own child directly, a grandchild, friend or acquaintance – and the situation that is transpiring with Ayn van Dyk could easily be YOUR fate too unless we collectively say, “No more!”
☻♥☻ /█\./█\ .||….||. In Celebration of the Importance of Life & Loving Memory of: Samantha Lauren Martin, June 4, 1993 – December 3, 2006.
“The Family Support for Children with Disabilities Program to have separate legislation from that of child protection services.” http://www.child.alberta.ca/home/527.cfm
From today’s Ottawa Citizen.
In this country, Helen MacMurchy was in the forefront of this movement. “I think it’s fair to say she was the most prominent promoter of eugenics in Canada,” says Stephen Azzi, an associate professor at Carleton University. Read more
here’s a video posted by the justice for victims project, based in lynchburg, virginia, as part of a kick-starter pledge campaign.