Dismantling Ableism Survey: Experiences of those Identifying with Less Noticeable Disabilities and Chronic Health Conditions

Introduction

The Dismantling Ableism: Institutional Action and Accountability survey (DAS) was administered in November-December 2023 to University of Manitoba students, faculty, and staff who self-identified as disabled or as having chronic health conditions.1,2 

Disability is not a singular experience, nor are disabled people a homogeneous group. People encounter different barriers and forms of ableism. Moreover, two people with similar impairments will also experience disability differently as personality, circumstance, privilege, and intersectional identities contribute toward their complex identity. 

“Experiences of inequities are particular to the type of chronic health issues [or] disability. When paired with intersectional issues such as race, class, etc., these inequities become more pervasive.” 

This results report is one in a series highlighting student, staff, and faculty experiences of ableism and inaccessibility at UM. It is intended to diversify understandings of ableism in academia through the presentation of disaggregated results that indicate differences among those who may share one or more broad socio-demographic characteristics such as Indigenous, racialized, or disability identities, gender, or sexuality.3 We emphasize disaggregated data to acknowledge intersectional marginalization to decenter Whiteness, colonialism, patriarchy, heteronormativity, and cisnormativity within anti-ableism action. 

Comparing the experiences of intersectionally marginalized groups is not intended to set these groups in competition with one another or to focus only on barriers and the ways in which they are “disadvantaged”, rather than their agency and vast array of achievements and skills. Rather, disaggregated analysis emphasizes experiences and voices that are often overlooked to pinpoint the concrete actions that will have the most widespread positive impacts on the entire UM community.

Language

The DAS used identity-first language (disabled persons) rather than person-first language (persons with disabilities) to acknowledge the disabling effect of social, environmental, and institutional barriers which hinder disabled individuals’ full participation in society, including university life.4

Similarly, the survey also used the term “chronic health conditions”, broadly defined as any condition, including mental health conditions, that is continuing or that occurs again and again over a long period of time, which in interaction with various barriers, may hinder full and effective participation in society on an equal basis with others.5

Positionality

Researchers bring their experiences, identities, and biases to their work. The DAS team members identify with various systemically marginalized identities, including disability and chronic health-related identities. These lived experiences are assets, but we recognize that our personal intersections of privilege also influence our work. Our commitment to research quality includes an openness to concerns and criticisms. Please feel free to send feedback on the DAS results to the Office of Equity Transformation at Equity@umanitoba.ca.

Footnotes

1. The survey was funded by the Robbins-Ollivier Award for Excellence in Equity.
2. The final sample size for the DAS, after data cleaning, is 544.
3. For example, do those who identify with cognitive disabilities feel more or less safe at UM than those identifying with physical or sensory disabilities? Do those who identify as disabled and as either bisexual or pansexual encounter more ableist microaggressions than their heterosexual counterparts?
4. Language choices were explained in the survey introduction; nevertheless, the DAS project team respects that members of disability and chronic health communities have diverse language preferences, including person with a disability, chronically ill, and episodic disability, for example. The team is grateful for all of the feedback we received regarding language and it will inform our work going forward.
5. Adapted from Bernell, S., & Howard, S. W. (2016). Use your words carefully: What is a chronic disease? Frontiers in Public Health, 4, 159. https://doi.org/10.3389/fpubh.2016.00159 and the United Nations.

Report content

This summary explores experiences of ableism at UM related to differences in disability “noticeability”. 

Specifically, we emphasize the experiences of those DAS respondents who indicated their disabilities or chronic health conditions are either “not at all or rarely noticeable to others”, or “sometimes noticeable to others”, as compared to those whose disabilities and chronic health conditions are “often or always noticeable to others”. 

Methodological note

Much of the data that references the experiences of those who identify with less noticeable disabilities and chronic health conditions are qualitative. As such, this report presents numerous quotes to describe respondents’ experiences in their own words. Many of these quotes have been edited for the limited purposes of:

  • Redacting potentially identifying details; and 
  • Increasing accessibility and generally improving clarity for all readers (e.g., adding missing punctuation and removing forward slashes, etc.). 

Any additions or deletions to quotes are framed with square brackets.6 The content and intended message of each of the quotes remains intact.

Footnotes

6. For example, [or] or [and]. The symbol […] signifies that a relatively large portion of a sentence has been removed from the original quote.

Broaden understanding

Highlighting the experiences of DAS respondents identifying with less noticeable disabilities and chronic health conditions is especially important because one of the most frequently occurring themes observed during qualitative analysis was respondents’ assertion that UM’s understanding of disability is biased toward physical and more noticeable disabilities, overall. 

Respondents further explain that such bias marginalizes: 

  • Less noticeable disabilities and chronic health conditions, especially cognitive and mental or emotional health-related disabilities and conditions7
  • And all types of disabilities and chronic health conditions whose effects are episodic or intermittent, rather than continuous (e.g., flare-ups of chronic pain or intense periods of anxiety or depression, etc.)8 

“Invisible impairments and health conditions are often not given the same depth of understanding as those with visible impairments."

"There are measures put into place to help certain disabilities but not all disabilities, even when brought up as a concern. Disabled students seem to have to put in much more time, effort, and resources into advocating for themselves when in need than necessary. There isn't much talk about students with ‘invisible’ disabilities.“

"I find that unseen disabilities and chronic health conditions are treated differently than physical ones. My experience taking and returning from medical leave for mental health reasons was handled very differently to a colleague who went on medical leave for [physical health reasons]." 

Footnotes

7. This does not mean that less noticeable disabilities and chronic health conditions are limited to cognitive and mental or emotional health disabilities and conditions. Certain physical and sensory conditions may also be relatively less noticeable to others or become more noticeable episodically.
8. These quotes are in response to a question that asked respondents to comment on “how disabilities are thought of at UM”.

Descriptives

  • Nearly half (47%) of DAS respondents indicate their disabilities or chronic health conditions are rarely or not at all noticeable to others (47.5% students, 35% staff, and 17.5% faculty) 
  • Similarly, 47% indicate their disabilities or chronic health conditions are sometimes noticeable to others (52% students, 37% staff, and 12% faculty) 
  • Only 10.5% report their disabilities or chronic health conditions are often or always noticeable to others (54% students, 32% staff, and 14% faculty)9 
  • Overall, 70% of all DAS respondents identify as having a mental or emotional health-related disability or chronic health condition (77% students, 69% staff, 50% faculty) 
  • 47% of all DAS respondents identify as having a cognitive disability or chronic health condition (57% students, 35% staff, 41% faculty)10

Footnotes

9. Totals exceed 100% because respondents could select more than one response to the question, if they wished.
10. In comparison, 48% of all respondents identify as having a physical disability or chronic health condition (43% students, 51% staff, 55% faculty); and 19% identify as having a sensory disability or chronic health condition (17% students, 19% staff, 24% faculty)

Noticeability matters

The DAS results indicate that experiences of ableism can vary according to how noticeable individuals’ disabilities and chronic health conditions are to others, which reinforces the importance of disaggregated data analysis11. 

For example, compared to those whose disabilities and chronic health conditions are less noticeable to others, those whose disabilities are “often or always noticeable to others” report experiencing significantly more: 

  • Ableist microaggressions both in-person12 and virtually13; and 
  • In-person exclusion and harassment14. 

But those whose disabilities and chronic health conditions are more noticeable also report feeling significantly more comfortable sharing their disability identities at UM than their counterparts whose disabilities and chronic health conditions are less noticeable.15

DAS respondents with less noticeable disabilities and chronic health conditions describe some different experiences of ableism16 that involves

  • Not being believed when they say they are disabled or need accommodations; and 
  • Feeling like their disabilities and chronic health conditions are somehow “less legitimate" than other types of disabilities and chronic health conditions, which is also related to respondents’ perception of institutional bias toward more noticeable, physical, and continuous disabilities and chronic health conditions.

Footnotes

11. The DAS questions asked, “how noticeable is your disability or chronic health condition to others?”, which is why we use “noticeability” in this report. Respondents used a variety of terms to describe their personal experiences including “hidden” and “invisible”.
12. F (2, 511) = 10.8, p =<.001, η2 = 0.04.
13.  F (2, 467) = 4.8, p =<.01, η2 = 0.02.
14.  F (2, 509) = 7.4, p =<.001, η2 = 0.03. Post-hoc tests indicate respondents who identify as having “often or always noticeable” disabilities and chronic health conditions experience significantly more in-person exclusion and harassment than those whose disabilities are “not at all or rarely noticeable to others”, specifically.
15.  F (2, 524) = 5.4, p =<.01, η2 = 0.02.
16.  This does not mean that respondents with less noticeable disabilities and chronic health conditions do not experience any microaggressions, exclusion, or harassment. Unfortunately, they are still impacted by such behaviours, but the DAS data indicates they report these experiences significantly less often than respondents with more noticeable disabilities and chronic health conditions. Likewise, those with more noticeable disabilities and chronic health conditions can also be questioned about the “legitimacy” of their disabilities and conditions and feel like others do not believe them.

Impact on participation and identity sharing

DAS respondents indicate that having less noticeable, including episodic, disabilities and chronic health conditions affects how they participate at UM as students and employees, and how they share (or choose not to share) their identities with others.

Participation at UM

Sometimes [noticeable to others]. I have gone weeks at a time with a flare-up of my physical illness where I can't get out of bed, and I have to call in sick. However, during midterms [or] times of heavy workload, I had to manage the flare-up by going to school and dealing with it. This meant taking exams when I feel dizzy, disoriented, [or] out-of-it. 

Yes [noticeability of disability affects my participation at UM] in the sense that my chronic health conditions are considered "invisible" I feel as though it is often frowned upon when I am not able to output the same amount of work as my peers, it is assumed that I am just being lazy rather than struggling to function. In reality, it takes everything I have just to get here in the morning. 

In some instances, I have been more aggressively ‘pushed’ to participate in learning activities [or] specific situations despite my objections [and] concerns [regarding] triggering my mental health conditions, likely because my conditions are NOT particularly apparent or visible.

Identity sharing

The issue for me isn't so much sharing with instructors that I am disabled, but rather convincing them that my disability is valid because they seem to all think that ADHD just means I should be hyper and not that I have extreme sensory and task initiation issues […]. 

I feel because my disabilities are invisible to fairly invisible, that I need to "play up" my fatigue for it to be taken seriously. Overall, I expect that if I were more open, that I would receive a great deal of unconscious stigma as a result […]. 

I don't feel comfortable disclosing my mental health condition fearing negative judgment regarding my competence for my role. I think others may feel the same and this is the biggest challenge to build a supporting peer community.

Many individuals described: 

“Masking” their identities, the effort required to mask, and the impact masking can have on individuals’ well-being and participation, as a result: 

“Not noticeable [to others] because I’ve gotten good at masking. But masking itself takes a huge toll causing fatigue and contributing to multiple cases of burn out each year.” 

“I adapt to social situations through masking my autistic traits. I can maintain masking fairly effectively, and it does not largely limit me from engaging with learning activities in the first place. However, masking is draining and limits the amount of learning activities I can participate in each day.” 

The importance of having access to remote work and learning options, and appropriate absence and leave benefits: 

“Most often, my chronic health condition is not noticeable to others. I am less likely to participate or might change how I participate if [or] when my chronic health condition is noticeable to others. For example, I might take time off ‘sick’ or I might work from home or virtually.”

Impact on accommodations

Many DAS respondents who identify with less noticeable disabilities and chronic health conditions expressed uncertainty as to what their accommodations options are, and some are unsure if they can receive any accommodations at all17:

 “I am unsure what supports would be helpful for me, as my pain and symptoms are very unpredictable.” 

“[I] don’t think an eating disorder counts."

Statistical analyses further indicate that: 

  • Respondents who identify with “rarely or not at all noticeable” disabilities and chronic health conditions are less likely to feel comfortable applying for accommodations than respondents who identify with “sometimes noticeable” and “often or always noticeable” disabilities and chronic health conditions18 
  • Respondents who identify with “rarely or not at all noticeable” and “sometimes noticeable” disabilities and chronic health conditions are significantly more likely to agree that needing or applying for accommodations will hurt their studies or career than respondents who identify with “always or often noticeable” disabilities and chronic health conditions.19 
  • Students who identify with “rarely or not at all noticeable” disabilities and chronic health conditions perceive significantly more stigma around accommodations, as compared to their peers whose disabilities and chronic health conditions are “often or always noticeable to others”20
  • Students who identify with “rarely or not at all noticeable” disabilities and chronic health conditions are marginally21 more likely to say they have not registered with Student Accessibility Services (31.5%) than their peers who identify with “often or always noticeable” (21%) and “sometimes noticeable” disabilities and chronic health conditions (18%)

Footnotes

17. These quotes are in response to the question “why aren’t you receiving or applying for accommodations?”. It was asked only of those respondents who indicated they require (or are unsure if they require) accommodations to fully participate at UM.
18. More specifically, 48% of “rarely or not at all noticeable” respondents disagree that they are comfortable applying for accommodations, compared to 40% of “sometimes noticeable” respondents, and 32% of “often or always noticeable” respondents. X2 (4, 526) = 9.6, p =<.05, V = 0.10.
19. More specifically, 59% of “rarely or not at all noticeable” respondents agreed that applying for accommodations would be harmful, compared to 54% of “sometimes noticeable” respondents, and 31% of “often or always noticeable” respondents. X2 (4, 469) = 10.8, p =<.05, V = 0.11.
20. F (2, 528) = 4.1, p =<.05, η2 = 0.02
21. This result is only significant at the .10 alpha level, meaning there is a relatively greater chance (10%) that we have wrongly concluded there is a relationship between students’ degree of disability “noticeability” and whether or not they have registered with SAS, as compared to results that are significant at the .05 alpha level or less.

A more inclusive understanding

Thus, many DAS respondents call on UM to commit to a more inclusive understanding of what disability and chronic health conditions are and all the ways they are experienced by students, staff, and faculty members. Such a commitment must also include an understanding of how exactly disability and chronic health diversity can manifest across UM campuses (e.g., intermittent or extended absences from class or work, and seeking temporary accommodations rather than continuous ones, etc.). 

An insufficient understanding of disability and chronic health diversity may result in members of the UM community being denied needed accommodations and being subjected to ableist microaggressions and discriminatory behaviour (e.g., “you look too healthy to be disabled”):

"Sometimes I have asked professors for extensions as per my Student Accessibility Services accommodations and they have told me I don't seem like I need them. It feels as though my mental health experience has to be visible to them in order for them to grant them."

"Many of the faculty are warm, understanding, and well aware of how to help or at least how to listen, ask questions and provide support. Others are less aware of cognitive disabilities or have a narrow understanding of what they are and respond with denial and reassurance that you are fine and are more than capable."

"Yes, they aren't visible so when I tell people I struggle they don't believe there is an actual issue and that I'm making it up because they can't physically see something I struggle with."

Dismantling Ableism Survey (DAS) Keep reading

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