Visual impairment and science

When I began in science at the University of British Columbia way back in 2000 I had many academic challenges, some having to do with the adjustment from a small-town high-school to a big-city university, and many to do with being legally blind in Science. At the same time as I began university, I also started working with the Canadian National Institute for the Blind (CNIB) at summer programs, and then later as a speaker. The interplay of these things laid the foundation for many of the talks and projects listed here (see my CV for a more information on my non-academic work related to vision).

Canadian Retinoblastoma Research Advisory Board (CRAAB), board member: 2016 – present

Directly from the website

CRRABwebsite 

“The Canadian Retinoblastoma Research Advisory Board (CRRAB) was created December 2016 to respond to the need for inclusive, high-quality, and translatable research. The general membership includes people affected by retinoblastoma (e.g., survivors, the immediate family of someone diagnosed with retinoblastoma etc.), clinicians, allied healthcare providers, researchers, patient engagement experts and policymakers.

CRRAB’s aim is to create meaningful, co-directed retinoblastoma research that is relevant to patients and improves outcomes.”

CRRABonfacebook

Advisory group, for systematic review addressing the issues related to clinical genetic testing and counseling in low-and-middle-income countries. 2016

Accessibility guidelines for Post-Docs in Canada, ongoing: 

With collaborator Mahadeo Sukhai at the University of Toronto, and a team at the University of Calgary, we are aiming to create a fund for accessibility costs through the Canadian tricouncil funding agencies. You can read about the project here: http://www.ucalgary.ca/news/utoday/may9-2013/phd-candidate-seeks-funding-for-post-docs-with-disabilities More on this to come soon…..

Equity guidelines for persons who have disabilities at the University of Calgary, 2010 – 2011

When I got into the thick of graduate school during my MSc at UBC, it became clear that with changing experimental set-ups and research demands I would need to have access to funds for accessibility items that were beyond the firm application constraints and time-lines that were in place through Access and Diversity. I didn’t have time to sort out how to accomplish this in the time-frame of an MSc, but I set out to do so as soon as I started my PhD.

With the equity committee in my department, we developed equity guidelines for persons who have disabilities in the Department of Biological Sciences at the University of Calgary to address barriers to education that were not fulfilled by the university-wide disability resource center (DRC). Though these guidelines, I was able to get a special fund from the Faculty of Graduate Studies for students in BioSci whose needs are not being met by the DRC. This has allowed me to continue my studies.

You can find these guidelines here Accommodation of Disabilities Dept Report June11

Canadian National Retinoblastoma Strategy: 2004-2009, 2016 (five-year guideline review)

Spurred by my experiences as a patient, as a researcher and my fight with the BC government for appropriate care, between 2004-2008 I worked with a huge team of people across Canada to develop guielines to standardize care and treatment of retinoblastoma across Canada. Steering committee, National Retinoblastoma strategy

Mission: to develop and maintain best practice guidelines for care of people affected by retinoblastoma across Canada.

The guidelines can be found here Canadian Retinoblastoma Strategy Guidelines, with an update to be posted online in 2016 (pending review)

Roles that I played a couple of key meetings to develop this strategy:

2008     Chair, National Retinoblastoma Strategy meeting, Whistler BC

2006     National Retinoblastoma Strategy meeting: chair, subcommittee on retinoblastoma diagnosis, classification, consultation, referral and travel

Selected talks, all invited:

2007     Bowles E. Developed and led a vocational transition workshop for minimally sighted youth between the ages of 16 and 21 for the CNIB, Bowen Island BC. Program focused on the benefits of using senses other than vision for learning, on the power of using goals to overcome boundaries and about how to cope with some of the stresses of not having vision in society today.

2007     Bowles E. While employed at the Vancouver Aquarium as a naturalist I developed a program to introduce blind and visually impaired teenaged youth to marine biodiversity world-wide. For this program I employed and trained four of the Vancouver Aquarium volunteers.

2005     Bowles E, Bowles A. Challenging the norm: systemic barriers to education for people with visual impairments. Oral presentation. International Society for Genetic Eye Diseases/International Retinoblastoma Symposium, Whistler BC

A PDF our talk can be found here 2005_BarriersToEducation

 2003     Bowles E. Anything is possible. keynote speaker, second National Retinoblastoma Symposium, Toronto, ON. Spoke about the attitudes and boundaries affecting people with retinoblastoma, in particular those who are visually impaired. Talk subsequently made part of the Society’s educational DVD.

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