Chloë G. K. Atkins

Hello!

It has been a long time since I have updated this blog. My last posting was in 2018, announcing the initiation of The PROUD Project—now fully actualized! Below you will find a detailed breakdown on what I have been working on these past years with PROUD. 

PROUD is an anti-ableist, bilingual research and advocacy hub focused on social justice and health equity. 

Today, we have six team members: Aruna Mitra and I are both Executive Directors of PROUD; Isabelle Avakumovic-Pointon is our Research Associate while she completes her PhD in history at the University of British Columbia; Lark Huska is our Social Media and Communications Officer; Charlotte Flameng is our bilingual Research Assistant; and Zephyr Mitra generously serves as our Secretary of the Board. Our Board of Directors is currently composed of myself, Zephyr, Bonnie Severin as the Board’s Treasurer, and Board Member Negar Hashemi. We are currently looking for a new board member.

In its eight years of existence, PROUD has completed a wide array of research accomplishments. To learn about what me and my team have been up to, keep on reading. To stay up to date with what PROUD is up to, follow The PROUD Project on Instagram, Facebook, Youtube, LinkedIn, and Bluesky. To get in contact, reach out to [email protected]. 

Broadcastability

Firstly, we have a podcast! Broadcastability is a bilingual podcast by, for, and about persons with disabilities. We currently have three published seasons, with our most recent one focussing on researchers doing anti-ableist work. Find episodes at Broadcastability.ca, Apple, Spotify and YouTube, or on most major streaming platforms. We are planning the fourth season which will drop in the fall of 2026.

Five Nations Study

Our biggest research project to date has been our Phenomenological Analysis of Disability and Employment in Belgium, Canada, France, the UK, and the USA. In this study, we interviewed physically disabled employees; employers who hire people with physical disabilities; and co-workers who work with disabled colleagues so that we can more fully understand the conditions which foster the integration of qualified adults in the workplace. As researchers, we want to know how individuals and organizations successfully hire and integrate individuals with physical disabilities. 

The scope of this project covers five different countries: Canada, the United States, the United Kingdom, France, and Belgium. It was a multilingual effort. Taking a multi-country approach allowed us to understand the experiences of disabled employees under different liberal democracies and cultures. The research compares these experiences and has created a set of findings from the materials. Finally, the rich data that we gathered from many different participants will allow us to advise and contribute to government policy discussions regarding inclusiveness, equity, and diversity for persons with disabilities in the workforce. 

We are currently writing up the results of this study in both French and English. A large summary article of our research is currently under review at Disability and Society. We are producing smaller, more focused articles that highlight each of the 5 nations.  

We are planning research which evolves from this work. We are taking our findings and want to test them for reliability. We also want to expand our investigations to verify and augment what we learned from our work in Canada, the UK, the US, France, and Belgium.

Intersectional Accessibility Mapping Project with Occupational Therapy Students

In the fall of 2024, PROUD collaborated with the University of Toronto’s Department of Occupational Science and Occupational Therapy, offering a unique fieldwork placement for Masters of Occupational Therapy students. Fieldwork placements provide an opportunity for occupational therapy students to integrate theoretical and practical knowledge and develop professional behaviours and clinical skills as a requirement for professional qualification. PROUD’s Aruna Mitra (Co-Executive Director) and the Research Project Manager jointly supervised eight students over the seven-week LEAP placement: Leadership Emerging/Enhancing, Advocacy, Program Planning and Evaluation. The goal of LEAP was to identify and map daily accessibility barriers faced by disabled individuals. 

The MScOT students took to Toronto’s Church and Wellesley Queer Village as their area of interest. Using PROUD’s innovative intersectional approach to understanding accessibility, the students surveyed the neighbourhood’s external and internal spaces. They analyzed the physical, sensory, cognitive, social, features of an environment that influence disabled persons’ ability to live, work and socialize in the area. The MScOT students researched accessibility features in specific locations such as restaurants, bars, retail stores, a community centre, and the LGBTQ2S archives. The goal was to map each location’s features using a mapping software (ArcGIS) as a prototype for creating a map containing accurate and relevant information which would be useful with functional limitations. Through interacting with the physical space, the MScOT students developed detailed data collection surveys for each location, documenting external and internal  accessibility. Details included entrance doorway width, the number of steps, alternative accessible entrances, length, width, and elevation of ramps, interior layout, location of restrooms and features included. They also documented other accessibility features not commonly captured in accessibility surveys such as noise level, lighting features (e.g. strobing) and automatic external defibrillator (AED) locations.

These prototype maps provide a level of detail that is useful for people who face a variety of barriers. For example, someone wanting to celebrate a birthday who has a mobility impairment and who has a friend who uses a guide dog and hearing aids, needs to know about more than “level access.” PROUD’s maps indicate the layout of tables and chairs, the noise levels, and areas for the dog to relieve itself. Locations are rarely “fully accessible.” For example, a location may have an automatic door at the entrance but this does not necessarily mean that the location is fully barrier-free. By taking this granular approach to mapping the accessibility of spaces, PROUD hopes to demonstrate that accessibility is rarely a binary issue.

Interact with the Accessible Mapping Project here!

PROUD Fellowships

In 2024, we introduced the PROUD fellowship program. During the 2024-2025 round, we took on five fellows: 

• Ness Maloney: a PhD candidate in Socio-Cultural Anthropology at the University of Toronto, Maloney has conducted ethnographic research with disabled self-advocates and care services in the Cook Islands, as well as past projects in New Zealand and Tonga.
• Walter Rafael Villanueva: a Mad-identifying scholar, Villanueva is a PhD candidate in the Department of English and holds research positions at the Centre for Global Disability Studies and the Dalla Lana School of Public Health at the University of Toronto.
• Keegan James: a Master of Information Student with the Faculty of Information at the University of Toronto and holds a diploma in Indigenous Community and Social Development from Georgian College and a Bachelor of Social Work from Toronto Metropolitan University.
• Kayla Saunders: a student in the Master of Library and Information Science (MLIS) program at the University of Toronto, Kayla holds an Honours Bachelor of Arts in Gender and Women’s Studies from York University, where she was first introduced to critical disability studies.
• Matthew Palynchuk: a PhD candidate in Political Theory and works in contemporary, Anglo-American political philosophy. In particular, his work focuses on disability and what social movements for disability justice can contribute to philosophical debates around egalitarian justice.

This year, we have a new fellow, Jennifer Fane, PhD at Signal49 Research in Vancouver, B.C.
Currently, we are working to produce more episodes of Broadcastability, expand our Accessible Mapping Project, and publish our findings in journals. Please feel free to visit www.theproudproject.ca and get in contact!

I have recently initiated The PROUD (Phenomenological Research/Remedies On Unemployment and Disability) PROCHE [Phénoménologique (recherches et résolutions) aux chômage et handicapées] Project, which is a four year research effort, funded by the joint Social Sciences and Humanities Research Council and Department of National Defence Research Council Initiative.
The PROUD PROCHE Project is a bilingual study exploring the successful employment of adults with disabilities in Canada, the US, England, France and Belgium.
It will be interviewing employees with disabilities and, their employers, about the behaviours and conditions which allow them to subvert the obdurate trend against hiring disabled persons.
Currently, I will be working alongside a post-doctoral fellow, Andrea Whiteley, who recently received her PhD in Communications from the University of Calgary. Dr. Whiteley has long and robust experience in undertaking this type of phenomenological research. Whiteley’s PhD thesis examines the problem of “open access” of social science and humanities information and, she has an expertise in knowledge dissemination and translation.
We will be hiring other members of the project in the coming years as needed.
From interviews in multiple jurisdictions, we hope to glean “best practices” in terms of integrating qualified disabled adults into the workforces of liberal democracies. All of these countries have adopted laws aimed at encouraging the inclusion of disabled workers but ongoing data indicates that these statutory efforts have not yielded concrete results — the low rates of employment among qualified adult persons with disabilities remains unchanged or falling. Through our research, we intend to renew and renovate approaches to the substantive inclusion and integration of employees with disabilities in workplaces, as well as in broader socio-economic communities.
The PROUD PROCHE Project is located in the Department of Political Science, Highland Hall Rm: HH584, Scarborough College, University of Toronto.

Please feel free to contact me at: [email protected] if you have questions, information or, contributions to be made to The PROUD PROCHE Project.

We welcome input.

Best wishes for the spring!

Here is a link to my articles which are available on Chloë G. K. Atkins on ResearchGate.
This provides a way to access my articles on one site.

Warm weather has arrived at my location on this beautiful planet — It surely is spring!

For those interested in MUPS, I’ve just published an article in The American Journal of Bioethics (26 April 2018) in response to Dianne O’Leary’s featured article: “Why Bioethics Should Pay Attention to Patients Who Suffer Medically Unexplained Symptoms”
You can find my response to her piece here:
Why Bioethics Should pay Attention to Patients Who Suffer Medically Unexplained (Physical) Symptoms _ A Discussion of Uncertainty, Suffering and Risk.

I’d love to learn your thoughts and opinions about this piece and anything else I’ve researched or written.

I’m currently on leave from the University of Calgary.

And I’m preoccupied with a number of intense personal and professional projects — some of which have were unanticipated and fell into my lap and, others resulted from more planned activity.

Please feel free to contact me if you feel so inclined.

Wishing you well for the moment!

CGKAtkins

With the New Year upon me and the light returning to the northern hemisphere, I’ve embarked on two new projects during the past few months:

1. a project which employs the phenomenological approaches I used in my MUPS research and applies them to the problem of the under and unemployment of persons with disabilities in liberal democracies. It is well known that despite the renovation of constitutions, statutes and regulations, the rate of employment among adults with disabilities has remained unchanged. This project does not want to revisit this ongoing failure (e.g., 93% of ADA employment challenges for accommodation side with the defending employers) but rather seeks to discover what conditions actually assist with the hiring and retention of these individuals. I will interview employees with disabilities and employers who hire and oversee them to unearth what makes it possible to have disabled adults in the workplace. The outliers’ personal experience will provide the material for gleaning “best practices” in encouraging the participation of disabled adults in the workforce. As an interdisciplinary scholar it is apparent that the legal reforms and the invocation of formal human rights are not enough, we need to promote the appropriate conditions which allow adults with disabilities to fully participate in the workforces and economies of their countries. This project will interview employed individuals with disabilities and their employers in Canada, the US, the UK, France and Belgium.

2. a book length manuscript which examines the genetic, social and psychological origins of disease and kinship behaviour in one family over several generations. The family has connections to the “Quebec Founder Population,” which has recently been identified in epidemiological research. This exciting piece is a collage of interviews, first persona and second person narratives, visual images, archival sources and, medical, social science and scientific research.

If you’re interested in either of these efforts and or my work in the area of MUPS and patent advocacy and human rights for the vulnerable, please feel free to contact me.

Best wishes for 2018 – may it go well . . . .

While our CIHR study investigating MUPS is now long finished, we are still publishing results from our work.
Our latest article was recently published in the BMJ Open journal. Keith Brownell, MD, Professor Emeritus of Clinical Neurosciences & Medicine, (University of Calgary) is the primary author.
It is entitled “Clinical Practitioners Views on the Management of Patients with Medically Unexplained Physical Symptoms (MUPS): A Qualitative Study.” (Brownell AKW, et al. BMJ Open 2016;6:e012379. doi:10.1136/bmjopen-2016-012379)

While this article speaks to clinicians in particular, it can be accessed by anyone who wishes to read it by clicking on the above link.

As the new year emerges, I hope that further opportunities to discuss and explore the problem of MUPS will occur.

Please feel free to contact me or any of the article’s authors via the comments section on this website or more directly via email.

Best wishes for 2017.

We have completed our CIHR Ethics Catalyst project on MUPS (Medically Unexplained Physical Symptoms). All four members of the interdisciplinary research team are writing articles which capture their specific perspectives on the qualitative data (i.e., neurology, general practice, medical sociology and political thought).

We’ve had 2 successful publications so far:

– Kornelsen, Atkins, Brownell and Woollard. “The Meaning of Patient Experiences of Medically Unexplained Symptoms.” Qualitative Health Research 1-10. 1049732314566326, first published on January 12, 2015.

-Atkins, Brownell, Kornelsen, Woollard and Whitely. “Silos of Silence, Stress and Suffering: Patient And Physician Experiences of MUPS and Diagnostic Uncertainty.” Special issue of American Journal of Bioethics: Neurosciences 4:3 (July-Sept 2013).

A 3rd article is undergoing peer review:
– Brownell, Atkins, Kornelsen and Woollard.“Managing Patients With Medically Unexplained Physical Symptoms (MUPS): Lessons Learned From The Front Lines.” Under submission.

We are working on 2 other pieces: one on the ontology of MUPS and the other about undergraduate and clinical education and MUPS.

In addition to publishing our results, I am considering new directions for MUPS research. I am thinking, in particular, of examining pediatric cases of MUPS and the difficulties that physicians, children and substitute decision-makers (i.e., parents, guardians,etc.) face when confronted by uncertain diagnoses.

I hope that those individuals who took part in our study, will read the above mentioned papers and provide any feedback which might assist in framing future investigations into uncertainty in clinical diagnosis.

I will be presenting, on behalf of our research team based in Vancouver and Calgary, at the annual meeting of the Canadian Bioethics Society.

We have completed our the bulk of our pilot qualitative study on MUPS – Medically Unexplained Physical Symptoms. We have interviewed both patients and physicians about their experiences of MUPS. We have transcribed and collected data from the interviews. We then analyzed the material and and have published one preliminary article, submitted another for publication and, are in the midst of writing 3 more articles.

The Canadian Bioethics Society will be meeting in Vancouver 28 -31 May 2014 at the Renaissance Vancouver Harbourside Hotel. CBS will celebrate its 25th year of meeting and the theme is “Looking Back; Looking Forward.” Our session will take place in the 5F time slot on “Clinical Ethics- Workshop and Concurrent Session” on Friday 30 May 2014 at 4-5pm. I will present an overview of the work that both the Vancouver and Calgary sites have completed and, a broad summary of some of our findings and recommendations. Anyone who is interested in MUPS and the challenge of “uncertainty” in medical diagnoses and health care is welcome to attend. I’m looking forward to presenting and to hearing thoughts and responses from my colleagues and members of the audience.

The first year anniversary of our first publication will take in early July 2014. At that point, we will be allowed by our copyright agreement to post a link to the article on this website and thereby permit members of the public or participants of our study to have access to the paper: “Silos of Silence, Stress, and Suffering: Patient and Physician Experiences of MUPS and Diagnostic Uncertainty” in AJOB Neuroscience, 4(3): 3–8, 2013.

More generally, as each team member works on further analyses and publications, we are scheming about conducting further work in the area of MUPS. Ideally, we would like to establish or collaborate with clinics in Vancouver, Calgary and Toronto in which we could conduct further research into MUPS and probe its effective management. We intend to seek CIHR funding as well as other sources of research and healthcare funding for this effort. Of course, if anyone knows of individuals, institutions or granting agencies who might be interested in our work, please feel free to contact me by leaving a comment to this post or by emailing me at: [email protected]. I very much enjoy receiving your responses.

On a more personal note, I have moved departments within the University of Calgary and can now be found in the Department of Sociology. I continue to teach in the undergraduate Law and Society Program and teach and supervise students in the “Communication and Culture” graduate programs and will begin toe take on graduate students in Sociology as well. My supervisory and research interests are in the following areas: vulnerability and vulnerable populations; disability studies, human rights, bioethics, narrative and feminist scholarship. My email and telephone contacts remain the same.

I am grateful that the warm weather has finally arrived. I hope that we all have a temperate, healthy and prosperous spring!

Chloe G K Atkins

My apologies for not blogging in ages. . .all sorts of encumbrances occurred in the intervening period between my last post and this one. . .

Well, our CIHR funded research project on MUPS – medically unexplained physical symptoms — is winding up.  And, it has been a fascinating two years.  Overall, it has been an indelibly positive experience.   Our interdisciplinary team worked (and continues to work) very well together.  I’ve seldom encountered such hard-working, thoughtful, engaged and kind people.   Everyone brings  100% of effort to all aspects of the study; each person is perennially willing and happy to help another team member out.

As such, we all hope to be able to work together again.   Our intention is to expand our efforts in the future — perhaps to include pediatric patients and physicians and/or, to expand our participant cohort to include other clinical disciplines such as nursing, physical therapy, respiratory therapy, etc..

In terms of translating what we’ve found into action . . . we’d like to establish a clinic(s) which would address the needs of MUPS patients and provide support for the concerns of clinicians who look after them. We are also making efforts to influence undergraduate and clinical education so that they more consciously include uncertainty as a medical possibility.  For example, teaching case studies, seldom if ever, include narratives in which there is no diagnostic answer.  This needs to change.  In addition, we intend to make better and broader contact with the public and with consumers of health care, both about the limits of medical diagnostic models and capacities and, about what patients should nonetheless expect in terms of receiving respectful and competent care from physicians.

Finally, writing and publishing our analysis from the experiential data we gathered is imperative.  We recently published an article: “Silos of Silence, Stress and Suffering: Patient and Physician Experiences of MUPS and Diagnostic Uncertainty.” AJOB Neuroscience, 4(3):3-8, 2013.  We will be seeking publication for another 3-5 papers this coming winter.  These will discuss “best practices” for physicians; coalesce the experiential wisdom of the various participants in the study and draw socio-medical lessons from them; address medical education reforms; highlight communication models and practices in the MUPS clinical encounter and; for the more philosophically minded amongst us, critically assess the ontological challenge that MUPS poses to both patients and physicians.

Again, the work has been demanding  but incredibly fruitful and satisfying. Moreover, we seem to be part of a nascent awareness that not all symptoms are fathomable and that MUPS patients and their physicians need not suffer the stress of an unknown illness in isolation.

Best wishes,

Chloe

A quick update on our CIHR study on MUPS- medically unexplained physical symptoms:

We presented a poster of our preliminary findings at the BrainMatters3 Conference in Cleveland Ohio, 25-27 October 2012.  The meeting was an interdisciplinary array of neuro-scientists, ethicists, neurologists, psychiatrists, writers, social workers, etc..  Consequently the presentations were diverse and far-reaching.  A number of them will be posted on UTube in the coming months: http://www.youtube.com/user/ClevelandClinicCME.  Once they are online, I will highlight the sessions which I found to be the most interesting.

Out of this conference, we were fortunate to be asked to submit an article to the American Journal of Bioethics which will be published during the summer of 2013.  I look forward to reading the 5 other essays which have been submitted from other BrainMatters participants.  (Written prose can often hone arguments for the reader that remain elusive after a day of ongoing oral presentations.  Moreover, articles also present details of the author(s)’ discussions more subtlely and articulately.

Having written our short (3,000 word) piece outlining our preliminary investigations and anlayses, we’ve returned to transcribing interviews from our research project here in Calgary and Vancouver (Canada).  We will finalize our interviews by January 2013.

As for me personally, I am undergoing a flare of my own MUPS condition.  (The closest diagnosis that we can arrive at is that I seem to have an atypical form of myasthenia gravis.)  I am not enjoying the severity or timing of this exacerbation.  There are two positive observations that I can make: i) I am receiving excellent care from a multidisciplinary team in Calgary  and, ii)  the symptoms seem to be gradually abating. . .

McCaig Tower, FMC, University of Calgary, Calgary, Alberta.