Destigmatizing disability, one spoon at a time: Agnes d’Entremont

Agnes d’Entremont 
Associate Dean, Equity, Diversity and Inclusion pro tem, Faculty of Applied Science 
Professor of Teaching, Department of Mechanical Engineering 
picture of spoons.

Resized agnes headshot

Can you tell us a little bit about yourself and your role?  

As Associate Dean, EDI, I’m working with a great group of students, staff and faculty on education and action to improve inclusion and equity within APSC. This ranges from supporting events like 14 Not Forgotten to providing workshops and trainings like Weaving Relations to applying an equity lens to processes and policies.  

I’m also a cyclist (and cycle tourist) and a parent. I like to sing folk songs, try out historic recipes, and go canoeing. And I’m disabled.  

How would you describe your identity as a Disabled person? 

I have a chronic pain disorder. I have pain all the time, although the level of pain can vary. This impacts my life in pretty significant ways, although it’s an invisible disability so very few people I work with know about it. But many people have seen some of my tools for managing my disability, even if they haven’t realized that’s what they are—my office couch and my bicycle are two key tools that allow me to keep functioning.  

I’m also a spoonie. That is, I have a limited capacity (number of spoons representing how much energy I have to spend) every day, and I have to choose how I’ll spend it. I usually spend most of my spoons at work and then need to rest a lot outside of work. Typically, I need to spend one day each weekend and many weekday evenings resting (and not fun resting - I can’t usually read or watch videos). This means I don’t get to spend the time that I want to with my family or doing other activities like hobbies.  

What challenges have you encountered around accessibility and disability at UBC? 

My experience of disability is not universal—I don’t have physical mobility impairments, for example so I can’t speak to the range of experiences people with disabilities may have at UBC.  

For me, the biggest challenge is the sense that faculty need to be superhuman— working all the time, extremely productive, never having an off day, driving onward through illness, and so on. And, as a woman in a technical field, there’s an additional sense of needing to perform at the highest levels to be accepted. I’ve definitely pushed myself well beyond what is good for my wellbeing at times in aiming for this unrealistic ideal.  

What do you want people to know about disability that you think they need to hear?  

First, that disabled people can do excellent work. We often bring creativity and flexibility to the ways that we do our work, and our experiences and perspectives as disabled people can enhance our work.  

Second, that a non-disabled experience, like acute pain, isn’t really the same. If I was confident that I’d have pain for the next two weeks and that’s it, I could push through that to function relatively “normally,” or I could simply take a couple of weeks off. But I expect to have pain every day, forever. That takes a different approach, both in outlook and in management.  

Third, disabled people are experts in their own disability. Trust me, I’ve tried pretty much anything you could think up in terms of treatment. I am not going to be “fixed.” But, after decades of dealing with this, I have found the best ways to manage it.  

Agnes biking

How does your disability enhance your work?  

As a result of my disability, I think I have more empathy and awareness that I don’t know what someone else’s experience is. I often consider that someone might be dealing with a disability or life event that I don’t know about.  

Where I can, I also build into my courses the kind of flexibility I would want—for example, automatically dropping the lowest one or two assignments when calculating the final course grade, so any student can deal with a bad day or week without having to ask for an accommodation or concession.  

What are your dreams for disability representation and inclusion at UBC? 

There is a lot of stigmas around disability. There are prevalent ideas that disabled people are not valuable, not hard workers, not clear thinkers, and not leaders. For that reason, people who can pass as non-disabled often do so. But my disability is infused into all aspects of my life. It’s both isolating to keep quiet about and scary to be open about. I’d love to normalize talking about disability and celebrating all the disabled folks who contribute to UBC. And I’d love to see university leaders put time into understanding the disabled experience, and how to make a positive difference to that experience.  

This interview was conducted by Dr. Jennifer Gagnon, President of the UBC Disability Affinity Group and Lecturer, School of Journalism, Writing, and Media. 

The Disability Affinity Group is an independent volunteer-run group that creates a community of care, support, and advocacy for self-identified Disabled faculty, staff, faculty, postdoctoral fellows, students, alumni, past employees, consultants and others with a connection to either UBC campus. You can learn more about their work on the Disability Affinity Group’s website or join  their community of care and mailing list

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