The ways in which having a disability in an ableist environment shape personal beliefs and experiences.
From the onset to progression of a disability, people gain newfound awareness about disability and ableism as they navigate emotional, mental, and physical changes in their personal, social and academic lives.
I can’t walk super well, and I’m in chronic pain all the time. I went from being very, very active and running half marathons to being unable to walk a few blocks. That got me interested in disability rights because I had never realized how inaccessible the world was before and suddenly it was very inaccessible.
My interest in disability studies is a result of my own experience being diagnosed with MS four years ago—and being confronted with new challenges. I experienced intermittent blindness and sensory and mobility issues. This made me return to my research and start asking different types of questions.
Individuals with disabilities are whole people with rich, dynamic identities but feel discriminated against when people make assumptions about them and reduce them to their conditions.
If I’m late for class, teachers will then apply my disability to my integrity as a student, my academic viability, and how invested I am in learning. I want to tell them, ‘No, you don’t understand, I was late because I could not walk up the stairs very fast.’
It’s a very bad feeling when people are literally just making us our disabilities. It’s not realistic. That’s why I didn’t put my disability on my application. Why is that the only thing you focus on? Don’t attribute everything that happens to my disability.
People with invisible disabilities are often questioned by others as to why they need accommodations, adding more stress to already challenging situations.
When I was using disability transportation services some drivers would make comments about whether I really needed to use the service. They would ask really invasive questions about my health, making a lot of ableist comments. I just use the CTA now because being questioned by them made me really uncomfortable.
Having PTSD is really challenging because when others see me, they think I look fine. They don’t think there’s anything wrong or that I could need accommodations for my condition. But dealing with PTSD is really hard and sometimes unpredictable, and on top of that, people are not believing what I say about my condition.
Because disclosure is deeply personal, often riddled with anxiety and feeling overexposed, it is important for individuals to have control over deciding if and when they disclose details about their disabilities.
I don’t like having to disclose my disability or details about my health because I don’t want to be judged by my colleagues. But there is a high turnover at my job, so I have to continuously disclose to new people or have them look at me and wonder what is wrong.
When a student is having a problem, the program will come to the Disability Liaison and ask why they didn’t know about the student’s condition. We have to explain to them that students have the right to disclose to whom they want, when they want to.
Managing one’s own disabilities and systems for support presents daily challenges and larger barriers; however, people with disabilities develop great strengths, workarounds and resilience in response.
I was still dealing with bureaucratic problems, and I still had health issues, but once I had my accommodations more in place, I got really good grades my second year of Law School. Even then there were things that interfered. I got really good grades despite everything that was happening.
Those of us with disabilities may have unusual strengths… The ability to generate a wide range of solutions, patience and perseverance, visual or auditory focus, a knack for three-dimensional design, intuition about physiology, or empathy in working with a wide range of people. These strengths can be just as striking as the challenges.
The local culture and climate that impacts how much individuals with disabilities feel included, valued and empowered.
Awareness about the importance of accessibility is more prevalent on campus today; however, community members still find proper consideration for accessibility is often absent in the academic experience, social life and broader culture.
Something new is that student organizations are concerned about accessibility and recruiting new students with disabilities. They are educating about mental health and medical services and encouraging fellow students to use them. This type of message may be heard better from a student they trust.
I feel that the University needs to incorporate disability more robustly into the curriculum. It would be great for the administrative side and the academic side to be reading and working together on the topic of disability so that there is a common touchstone from which to think about accessibility in the same way.
People with disabilities want to be accepted for who they are but often feel they don’t fit the conventional UChicago standard, which results in feelings of exclusion and invisibility.
There aren’t enough accommodations, and there’s not enough space where we feel like we can exist as we are. So we always have to change a little bit to be able to fit into a certain mold. UChicago is very much like you have certain shaped holes. Not everybody fits into these holes.
I do think there is a culture here that makes students who need accommodations feel inadequate—that they are not UChicago material. I think that persists. It’s deeply entrenched and it’s unfortunate.
Increasing participation in deliberate and widespread efforts to make the University more accessible has the potential to improve conditions and experiences not only for people with disabilities, but for everyone.
I had an experience where I advocated for a large social event to begin earlier and to include a quiet area. It worked. It was wildly successful because people with families wanted to attend earlier, and other students who did not drink enjoyed the quiet area. A lot of people who did not have any disabilities liked the new changes.
I can be a better advocate having lived life until the age of 29 without a disability because when people don’t think about accessibility, I understand that. I’d come to them and say ‘I understand that accessibility wasn’t on your radar and you have no blame, but here are some considerations.’
Individuals with disabilities need strong representation in decision-making roles on campus to effectively advocate for their best interests.
The University has an accessibility committee but no one disabled is on it. This University would not have a commission on feminism without women or a committee on racism with only white people. In planning for new buildings, for example, disabled people should be consulted about physical accessibility, but they are not. How can the University think about accessibility without disability representation?
Accessibility is both a top down and bottom up process. It would be powerful for University leadership to make a public commitment to diversity that is inclusive of disability, with opportunities for disabled people to take on leadership roles. Free speech is on everyone’s mind, but it’s harder to interest administration in speaking about disability and access.
Creating programming for the UChicago community that prioritizes the perspectives of people with disabilities and highlights their contributions can help dispel common misconceptions around disability.
There are many creative ways to engage the community in disability issues. I know that there is a faculty member that teaches disability studies, but I wish there were more faculty incorporating this topic. I also wish there were more art installations, conferences, and other innovative ways of talking about the uniqueness and value of disabled people’s lives.
I’d like to hear more disability voices here. You can bring speakers to the University whose life work is to specifically talk about their disability, identity and other programming like that. This is the only way people will understand disability without really living it.
The institutional policies and practices that people with disabilities must navigate in order to receive proper accommodations.
People in positions responsible for providing accommodations are not always aware of how to do so properly, which leads to incorrect responses and inconsistencies across campus.
Sometimes there are units that will get a request from a staff member and the unit doesn’t even realize that it’s actually an accommodation, which requires an accommodation process. They may just approve it without going through the proper channels.
When units don’t involve central HR in their accommodations, it goes undocumented. Sometimes this approach works for them, but other times there are issues and that’s when they involve central HR.
The accommodations process is intended to provide people with disabilities with the formal support they need, but challenges in getting approval can result in individuals feeling marginalized and underserved.
It’s a really expensive process for someone with my diagnosis to get a letter. I didn’t think I was going to be able to get it done for the first year that it was recommended to me. It was multiple thousands of dollars to be able to get the letter. That’s automatically exclusive in of itself.
I had to navigate a lot of bureaucracy, so I got a sense of how much anyone cared about my accommodations. I had two separate letters which was very confusing. It wasn’t clear to me why I had two letters. I was told I had to give my professors my accommodations letter, and I did not feel comfortable with that.
People who need accommodations may not know that institutional support exists, or how to find it, which leads to missing out on receiving accommodations and feeling lost in the system.
I think we need to figure out how everyone can work together and identify goals. For example, I had trouble with parking. I ended up forwarding an email chain to SDS, and SDS sent it to OAE. Then, someone from OAE got on the phone with Parking and resolved it in 15 minutes. But how was I supposed to know who to call?
Since this is not a centralized campus, some units do what works for them without contacting HR. But if they do, we can actually advise them on how to best implement accommodations, and we can provide resources that support the unit and the person receiving accommodations.
Accommodations made without a formal process may feel supportive for people with disabilities in the moment; however, they may prevent them from understanding their rights and fully accessing appropriate accommodations over time.
I think in some cases people want to be the nice guy. They want to be supportive. When somebody in their unit comes to them and says, ‘I need to work part time for awhile because I’m going through treatment for something.’ They’ll be like, ‘Oh, yeah, sure, whatever you need.’
There was an issue that arose with a unit, but through education, discussion, communication and documentation, we were able to raise awareness to all involved, including the staff member that needed accommodations. We reassessed the staff member’s situation and she’s in a new position that better suits her needs. It was a win for the unit and for the staff member.
While a leave of absence may be beneficial to students’ health, University policies, financial circumstances, and a strong desire to stay on track discourage them from prioritizing their mental health and physical well-being.
You can’t tell people just to drop a class when it costs money. With financial aid— you’ve only got so many quarters to finish your degree. And now you can’t be part-time anymore. It’s a big deal. If you get a temporary disability, that’s a lot of money lost.
It would be so nice to be able to take a quarter off and be able to focus solely on my mental health. Healing from something like PTSD is a lot of emotional labor. It’s very physically draining. That, coupled with school, it’s a lot of work.
The institutional infrastructure that individuals with disabilities interact with in order to participate in the life of the campus.
Policies, procedures and the availability of resources for mental health are often at odds with the needs and expectations of students looking for quick access to services and long term care.
The therapist told me that my issues were too severe for her to determine in the period of time that therapists spend with each student per quarter. For something as severe as PTSD you need at least two months of continuous therapy to confirm the condition. So then I had to go find another therapist and try to get longterm treatment somewhere else.
People get in the front door pretty quickly here. To see a psychiatric provider though, I like to call it a scarce resource.
For routine evaluations, that’s typically four weeks, which is still a lot faster than you’re going to see in the community. But students don’t always like having to wait a month… We also have a mechanism for more urgent needs.
Housing accommodations can be challenging as additional information about students may be needed to properly assign housing, which conflicts with the legal mandate to protect students’ medical privacy.
The most challenging part of our job is trying to make sure we adhere to housing policies, while still doing our best to accommodate students. However, we often need more clarity and context around the student’s condition to determine housing options.
I received ADA accessible housing, but it was an apartment for someone who uses a wheelchair. I wanted an apartment with an elevator because I can’t do stairs, but I’m not in a wheelchair. Everything was at waist level for me. I was given an apartment with someone else’s disability.
Tens of thousands of building repairs made by Facilities each year may cause longer than expected response times to new requests made by people who need immediate access.
We do just over 68,000 repairs per year in the Facilities operations side. Between 40% – 50% of those our own team finds and fixes before any of our end users find them.
I work in an older building with one elevator, and it was out of order. I had to take the stairs and go through a door that requires ID access, but I didn’t have access and that door closed at 5PM. It was difficult to get to my office, and it took me a long time to get there. It took months to fix the elevator.
Even existing ADA compliant pathways can be complicated to access or in need of repair, interrupting the everyday participation of people with disabilities.
I fell twice on campus while going up a set of stairs. I’m always planning how I’m going to get around campus or how I’m going to go up certain floors. There are parts of campus that you can only access with stairs, and sometimes it’s much more complicated to find and use the accessible route.
As an RA I’m required to eat most of my meals with my residents. I live in the most accessible dorm, but the corresponding dining hall isn’t very accessible. If the elevator is broken, there’s no way for someone in a wheelchair or someone who can’t take the stairs to get into the dining hall.
Transportation and Parking Services offers several accommodations; however, these services are often not flexible enough to support dynamic schedules and unexpected situations, leaving individuals with disabilities feeling stranded.
They offer a van service, but the issue with that is you have to set your pick-up and drop-off times, at least two weeks in advance. So you can get it for an entire quarter, saying every single Monday I need to be picked up at this time from this location, but you must be there at that time. If you want to stay back and talk to the professor, if you get out of your test early, you’re just kind of stuck waiting.
Now if we get a request 24 hours in advance, great. But we can’t do it five minutes in advance like Uber, and I think that’s something we might want to look at together to see how we can actually operationally improve service and provide a little more flexibility for students.
The interactions students with disabilities have with their peers and instructors that influence how supported they feel and how they perform academically.
For students, building positive relationships with peers creates important social networks that impact their academic performance.
I’m really open about having a disability, and I get so many messages from other students seeking support. Some students want support with being able to cope with their condition, and other students want advice on what to do if their professor won’t accommodate them.
I was having multiple anxiety attacks my first quarter and it affected my ability to make social connections. Social connections are important because they really have an impact on your academic performance. You can form study groups to share notes. If you miss class, you can call someone and find out what you missed that day. The effects are exponentially inflated.
Sharing accommodations with instructors early in a quarter is essential for students’ success; however, without a clear sense of how to advocate for themselves, students may be unsuccessful at getting their needs met in time.
My advice is always to talk to professors as soon as possible, once you have your accommodations. This will let you know if the professor is going to be accommodating or not. For me, telling my professor early on that I have a chronic condition, and that I will have to miss class sometimes, will help me figure out how I can best work with that particular professor that quarter.
Once I asked for a quiz makeup because I had to go to the ER, but my professor said he didn’t do makeups. I found out later that he was supposed to give me one. But the quarter keeps moving, and the emailing back and forth with SDS and professors takes energy and time. I ended up getting the makeup, but it was stressful, and it took longer than it needed to.
Just feeling like instructors are genuinely supportive of accommodating students can help reduce students’ anxiety and increase their engagement in their courses.
I emailed a professor because I was trying to switch into her class, and I wanted to get a sense of how accommodating she might be. She was very kind and welcoming throughout the interaction, telling me she was looking forward to having me in class. When we talked about accommodations, she told me that I could have extended time but to just let her know beforehand.
It’s most helpful when instructors explicitly communicate that you can reach out to them for help. Even just announcing it at the beginning of class and a few times throughout the quarter makes it so much easier to reach out and say something. When it’s not said, you don’t feel good about reaching out.
Due to instructors’ varying receptiveness to the needs of students with disabilities, students put in extra effort to gauge instructors’ willingness to accommodate and take necessary steps to set themselves up for success.
I was advised to contact professors before enrolling in a course to see if accommodations were going to be a challenge. I feel like there are classes that I’m intrinsically cut off from, and that just doesn’t feel fair. It doesn’t feel like an accommodation. It feels like I’m accommodating myself and trying to figure it out beforehand. I want to be able to sign up for classes normally, like everyone else.
You can’t switch HUM professors, but I brought it up to my advisor that I was having negative interactions with a professor. She asked me if I wanted to report my experiences, but I didn’t want to make a show out of it. So I just quietly switched sections to a more supportive professor.
To some instructors, accommodating students may feel unfair and less rigorous; however, not accommodating students prevents them from contributing to the eminence of the university, keeps the university from developing a truly diverse set of views and is out of compliance.
A friend of mine had a class in an inaccessible building. She was on a motorized wheelchair. She petitioned to get the class moved, but the TA told her that the class was too settled into that room— but she wouldn’t be marked down as absent if she couldn’t make it to class. My friend cared about taking that class and wanted to learn. She wanted to contribute, and she was being completely discounted because she was a disabled student.
Accommodation may end up no real inconvenience at all, in exchange for that person’s unique skills and perspective. Many people with disabilities are used to working very, very hard in daily life, and if they have made it this far there is a good chance they are something special.
How would you summarize the insights in your own words?
What are your first reactions to these findings?
How strongly do they resonate with your experience at UChicago?
What kinds of changes do you believe would make a difference?