Dismantling Ableism Survey: Qualitative Results

Not every DAS respondent answered the open-ended questions featured in this brief summary. Still, the two featured questions generated hundreds of comments. Accordingly, while the thematic results are based on a portion of the DAS sample, they represent the experiences and opinions of at least half the DAS sample. This note is not intended to diminish the experiences and opinions of those who responded to the open-ended questions⁶, it is only intended to provide readers with necessary methodological context to interpret the results.

This summary also 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.⁷ The content and intended message of each of the quotes remains intact.

When asked how they believe “disabilities and chronic health conditions are thought of at UM”, those that responded to the question largely indicated that: 

Disabilities and chronic health conditions are, at best, an afterthought, institutional actions are largely performative and symbolic, and UM is generally resistant to structural change. 

• "Unless you're actively talking about the impact of a condition (which can easily get you labelled as a complainer or squeaky wheel), it will not be addressed (or it will be forgotten and expectations, workload, etc. will all slip back to standards for neurotypical and otherwise abled people). It appears that the University's assumption is that all staff are abled and otherwise conform to normative standards, and that exceptions may or may not be made on a case-by-case basis." 
• "Anytime I have gotten someone to listen to the concerns I have raised, I have been expected to take on the task of 'fixing' it myself off the side of my desk. This tells me everything I need to know about the UM's perspective on disabilities and chronic health conditions: they are an afterthought, and they are not a community issue." 
• "Persons with disabilities are an afterthought at the UM and policies are only followed to maintain the bare legal minimum. Disability is the least understood, respected, and supported issue at the UM and even then, it is not understood at an intersectional level." 
• "I really don't know how these topics are thought about by the university. It might be something that is talked about in passing in a UM Today article or an email from the President, but I don't see anything that stands out to me that UM is making changes and strides towards making acceptable and reasonable changes for those with disabilities and chronic mental health conditions." 
• "UM is so rigid and bureaucratic in the foundations of its structure, something as unique as the spectrum of disability and chronic health conditions doesn't feel like it’s really supported. At the end of the day UM is resistant to change and feels like students and staff are just student numbers and employee numbers." 

Too much hostility and stigma around disabilities, chronic health conditions, and accommodations remains, creating fear and uncertainty. 

• "My own peers have called people with mental health conditions "crazy" which discourages me from speaking about my own experiences. And note that making people attending ableism seminars doesn't do anything if they are not willing to recognize and change their own actions, it just makes them mad at disabled people [and] people with chronic conditions that they need to "learn about them" which is a "waste of time" [...]."
• "I’m sick of the consistent jokes and judgment or people joking about pretending to have a disability for it to be funny. It’s really, really difficult. Hearing students constantly joke about being autistic and laugh it off is really offensive."
• "I feel that everyone knows the proper talking points when push comes to shove, but there is absolutely still stigma against disabilities and chronic health conditions." 
• "I had to answer "I don't know" to many of these questions, because I have not disclosed my disabilities to my co-workers or management due to the extreme stigma surrounding neurodivergent disabilities [...]. I have no way of knowing for sure whether the U of M is a safe employer to disclose [...] to, so I choose not to take the risk of disclosing unless or until I require significant accommodations in order to do my job." 
• "I think the fear for me is that I will be punished if people were to really find out [about a cognitive disability identity]. I fear being found out."

Support and inclusion for people with disabilities and chronic health conditions are inconsistent, varying significantly from individual-to-individual and unit-to-unit. 

• "I feel as though as I had a majorly great experience in [unit] because of the essence of the work we do. [...] I do not believe this is true for all departments across the campuses. I see a lot of lived experiences in groups on social media that students may feel [that] profs are not accommodating or easily accessible or understanding. These are all parts of accessibility." 
• "I feel as though the campus administration and President and Deans do acknowledge the impact, however there are also experiences I have with certain professors that have made me feel extremely ostracized from the non-disabled students."
• "Like all nuanced topics, chronic health conditions are thought of very differently by individuals and the range of acceptance and accommodation varies by person, and unit, and while I think the University can make a meaningful shift, I don't know that full acceptance, understanding, and responsibility can be accomplished."

There is a relatively narrow institutional understanding of disability and chronic health conditions, marginalizing mental health and hidden or less noticeable disabilities and chronic health conditions, in particular.

• "The lack of understanding and awareness of the impact of mental and cognitive disabilities for students is atrocious! Too many decision-makers are in positions where they do not validate or believe the impact of these disabilities (whether chronic, permanent or temporary) have on students." 
• "For learning disabilities, I feel overall UM does a good job with accommodating and educating. For physical (or even mental health) is where UM lacks. Both in understanding and offer accommodations." 
• "Chronic health conditions are not highly recognized as a disability and seem to be dismissed."
• "I don't think UM thinks of body size accommodations at all-- there are many spaces on campus where I would not be able to find a seat that worked for me. I do think there is a desire to become more accessible in other ways."

The onus is on the individual - disabilities and chronic health conditions are treated as individual "problems".

• "The impression I receive is that my mental health is my own problem and a distant and subordinate consideration to even the whims of policy, let alone any cognizant need." 
• "I have not seen any evidence of any acknowledgement by UM and a lack of knowledge of where I could turn to for assistance. I am simply expected to deal with it on my own with an occasional nod of empathy from staff."
• "It is definitely seen as an individual's "problem" over the community's."

Given respondents’ overall perception of “how disabilities and chronic health conditions are thought of at UM", it's understandable that many are not comfortable sharing these identities with others at UM. Many of those that responded to the question asking how comfortable they are sharing disability and chronic health identities feel: 

It is necessary to share their identities to defend themselves, avoid or pre-empt negative consequences, or explain behaviour. 

• "Sharing is up to the person themselves, but in certain situations leaving the question of "well WHY aren't they doing X" open is more damaging than telling someone about the disability [or] chronic health condition." 
• "To avoid suspicion and judgment from instructors, I've often had to disclose my chronic health condition or learning disabilities. It's dehumanizing […]." 
• "Sometimes I feel like I want to share to explain or defend myself in a way. Since people do not understand autism or know that I am autistic, they may see how I can’t understand or interpret something properly as rude or selfish when, really, I’m just autistic. I feel like I want to share but I don’t want to feel like I’m using it as an excuse, and I don’t want to get unfairly judged by people." 
• "I have had to share it with my boss to help explain absences."
• "I didn't want to share some of my issues with HR, but it was that or look like a terrible employee. My HR rep was very professional about and has not made me feel negatively about it, but I'd rather not have gone through that at all."

It is necessary to share identities in order to receive accommodations, even when individuals would rather not share the details.

• "I have had to be open about certain issues in the course of applying for and using accommodations. I hesitate to say whether it is safe for people to disclose in general - it might depend on the disability and its impacts on the specific things others expect the person to do. These days, people realize they are supposed to be sensitive to disability issues, so most will not react negatively to the news; however, some might react negatively to the disability itself (e.g., "I know she has a health condition, but why can't she do XYZ?")."
• "Honestly the way you receive accommodations at the U of M requires you to prove your disability. For this reason, I've felt like I have to tell every professor or staff member I ask for help with the exact reason I need accommodations. I feel like I might not receive them if I don't convince them I'm disabled enough. This hasn't happened, but it is a worry."
• "I have had to share my diagnosis a few times when I would have preferred not to. During the acute part of my illness when I first started my treatments, and also in order to receive an [accommodations-related assessment] - a doctor's note was required which disclosed the clinic and the doctor indicated my diagnosis." 

Many also described a negative reaction upon sharing with others, including others downplaying the seriousness of respondents' disabilities or need for accommodations; and instances where the information was "used against" the individual later. 

• "As someone with hidden disabilities who otherwise occupies locations of privilege, I do not share. When I have shared, I get reactions that convey that folks think I am gaming the system. This, in turn, negatively affects people's perspectives of me. Better they think I have comments of low productivity than untrustworthy."
• "Some professors treat you differently [and] act like they’re annoyed with accommodations or make comments that people abuse them."
• "There is a lot of misunderstanding and misinformation regarding certain disabilities, so while trying to share my conditions to reduce stigmatization, I often hesitate and sometimes regret doing it."
• "This happened more than once, I shared it with higher management. It was used against me."

Worry about the impact of sharing, including career concerns and others "seeing me differently", for example.

• "If I share my disabilities with some people at the positions of power, I might not get jobs from them in the future. Because they might think that it will be difficult for them to accommodate my needs."
• "My colleagues would see me differently if they knew."
• "I do have concerns. [It] may not impact my current position to share my chronic health condition identity but could impact opportunities for advancing my career." 
• "Having an "invisible disability" has afforded me the privilege of not having to share this aspect of my identity when I don't want to, although I have had to around the process of accessing accommodations. I do fear that I would be treated differently if I was more open about my disability, mostly because I don't perceive a great deal of understanding about neurodiversity at the UM generally."
• "For a few of my courses, before I registered with [Student Accessibility Services], I had to disclose to my professors about my disability. I worried that even if I didn't need an accommodation for their class, it would impact my performance. I worried that they would think I was less capable and less intelligent as my peers simply because of my mental health conditions."

Yet, several respondents also describe positive experiences around identity sharing: 

• "I don't feel any stigma regarding talking about my disability with people." 
• "I think generally people are very accepting especially on campus." 
• "I have only every felt included, students are mindful of me as I wear [an assistive device] which is visible - my [additional disability is not noticeable] but I have not had any untoward aggression or rudeness directed to me." 
• "The UM is a great environment for me, my supervisor and co-workers are always doing their best and anything that comes up is either addressed or managed by assuming good intentions. If people look for problems, they'll find them, of course, but most staff and students don't want to be insulting, exclusionary or demeaning."
• "I often share my disabilities with my students as I have received positive feedback for doing so."

Positive feelings about identity sharing were often tied to individuals, individual teams, or individual units across UM that:

• Are supportive of their disabled peers and co-workers; 
• Have pursued education related to disability, chronic health, and ableism;
• Are engaged with anti-ableism efforts; or
• Include other individuals with disabilities and chronic health conditions⁸. 

Respondents shared:

• "I am very fortunate to have such an understanding supervisor and people on my team who deal with the same or similar [types of] disabilities. I truly don't know what I would do if my boss wasn't so understanding and ready to offer suggestions if I say I'm experiencing a challenge. I've never, ever been made to feel bad about the things I struggle with at this job. I have at previous jobs, so the support here is really amazing."
• "At the U of M I have shared (some of my conditions) with a few folks and they still treat me with respect and consideration. Again - I think I'm very fortunate to be in the team that I'm in. It's all-inclusive, non-judgmental and accepting."
• "It's very important for leaders to be proactive about educating themselves and explicitly stating their support for disabled staff and willingness to accommodate. In my years at the university, I have only made a disclosure to one supervisor, because they were upfront about creating a safe space[...] as well as willingness to learn."
• "Most of my experiences in talking to people about my disabilities has been fine - although this is likely because most of the people I’ve talked to in relation to this are also disabled in some way."

Overall, respondents' comments emphasize that individuals must have control over whether or not (and with whom) they share their identities across UM, including how much detail they provide:

• "[…] I also tend to only share certain aspects of my conditions, but that can sometimes spiral into giving more information than I would prefer, and in some ways, I feel like I've been designated an unofficial spokesperson for disabled folks of all kinds."