Not so Obscure

This post was written by Sara Wardell. She graduated from the Disability Studies program at Ryerson University in 2010.

A woman with Down Syndrome holding a little girl in her arms
This image comes from the blog, Confessions of the Chromosomally Enhanced, http://www.confessionsofthechromosomallyenhanced.com/2013_09_01_archive.html

Everyone has heard that sometimes things in life choose you. For me I have found that the subject of parents with developmental disabilities has chosen me. For most people the topic of parents with developmental disabilities seems obscure. For me it is quite normal, ever since I got my first “real job” after college I have found myself supporting parents with developmental disabilities in various ways. Perhaps this is because my first job was working in a youth program. In this program it was (and is) quite normal that about 3 people who use services become parents each year. 

While it’s not surprising to find parents with disabilities in a youth program I was surprised to find myself providing supports to two women in their seventies who were both parents. Neither of these women were given the opportunity to raise their children due to their disability. Listening to their stories and witnessing the long lasting impact these experiences had on these women really got me thinking.  It quite clear to me although great changes had happened for people with developmental disabilities when it came to pregnancy and parenting nothing had changed.

By time I got to the end of the Disability Studies program I had met too many parents and heard the stories of too parents to not take on this topic for my final project. I knew that this would be a challenging topic, no one seemed to understand my project or see the relevance, even people with long histories of working in the developmental sector.

Once I got started on my project I soon found out what kind of challenge I was in for. No wonder people gave me odd looks and didn’t understand my project, parents with developmental disabilities was a basically an untouched topic with in Canadian academics.  The small amount of academic work that did exist was more focused on teaching and training programs for parenting skills, with a high value on numbers and measuring progress.  Qualitative research about parenting just didn’t exist in Canada. Fortunately this topic was taken up by a few researchers in the UK, Australia and even a bit in the United States or I really would have struggled.

While I worked on my project I experienced the topic in a whole new way. At work I was working closely with two women who were parents. One woman with her children at home and another who had experienced four children being apprehended by CAS at birth. At night I was reading everything I could about parents with developmental disabilities and trying to track down parents to interview about their lived experience. As I went through this process I experienced a wide range of emotions; frustration at the lack of acknowledgement of these parents in Canada, regret about how I had provided supports to people; turmoil about ethical decisions related to the supports of the two women I was working with and the interviews I was conducting and hope and excitement that one day things might be better.

By the end of my project I was completely depleted, too many sleepless nights, too many long days, and too many moments of my year living and breathing this important subject. I really did feel that it was time to “pack it in” when it came to parents with disabilities. I was just about toss in the towel but then I attended a Dual Diagnosis conference. On the agenda was not one but several presentations about parents with developmental disabilities. Hurrah! Whole rooms FULL of people who cared about the same “obscure” subject as me! I was so thankful to have attended this conference, it helped me put the topic of parents with developmental disabilities of the shelf for a bit instead of tossing it into the dumpster out of sheer exhaustion.

I have taken the topic off the shelf here and there since finishing my project. I pick it up think, contemplate and re position it back on its shelf not quite sure what to do with it next. Recently at work I stumbled across the Esther Ignagni’s project Reimagining parenting possibilities: Developmental disability and the lived experience and expectations of parenting. I felt such joy that Ryerson’s School of Disability Studies is taking on this project. I cannot wait to hear more about the project and read the study. I have no doubt that this project will be an important step in Canada towards recognition of parents with developmental disabilities. I also have a little more confidence that I will be able to the subject of parents with developmental disabilities completely off the shelf again and find it a place on my desk to work with every day.  

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One thought on “Not so Obscure

  1. Hi Sara!

    So sorry I didn’t read this blog earlier. Thanks for mentioning the RPP project. The co-lead investigator on the project is Dr. Ann Fudge Schormans from McMaster University. We also work with Springtide Resources and the ILCs across the province. Most significantly we are working with a Self-Advocate Parenting Working Group – six self-advocate co-researchers who are intimately involved with all aspects of the project design, implementation and dissemination. We also are working with 5 small co-researcher teams/circles located in various regions across the province.

    And I would be amiss if I did not acknowledge Tania Jivraj and Sarah Wren, the research associates on the project. They keep the whole thing going!

    Currently, we’re conducting lived experience interviews with labeled parents, prospective parents and people without children. It may seem strange that we’re interviewing people who are not parents, but these stories illuminate the tacit and dehumanizing strategies deployed to impede people’s intimate lives. While we’ve heard and witnessed tremendous heartbreak, the most poignant moments are when someone tells us that they had never thought of themselves as becoming a parent until they heard about the project. We anticipate having a report prepared by the end of the year. In the meantime, we’re conducting forum theatre workshops based on our analysis to community groups, academic audiences and of course – labeled people!

    Please don’t hesitate to contact Tania Jivraj (tania.jivraj@ryerson.ca) or myself (eignagni@ryerson.ca) for more information.

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