“Be an Ally!” 

A Conversation about Inclusion and Activism at University 

Dorothee Marx, M.A., is a PhD-candidate and lecturer in American Studies at Kiel University, where she also serves as a diversity and equality counselor. In this Interview, DER ALBRECHT discusses with Dorothee Marx topics concerning inclusion, chronic illness and activism at university.

DER ALBRECHT: Why do you believe is it important to become active? 

First of all, I believe it’s important to understand that there is a lack of awareness about issues of disability and chronic illness when it comes to the university in general that not only pertains specifically to Kiel University, but to the university as an institution more broadly. Until very recently, people with disabilities and/or chronic illnesses primarily served as the objects of study, but there were very few disabled or chronically ill students and even fewer disabled lecturers or professors.  

According to a study called “The Economic and Social Situation of Students in Germany 2016” (21. Sozialerhebung des Deutschen Studentenwerks) 11 percent of students in Germany have a disability, that is, health problems that hindered them in their studies. I would assume that this figure is actually higher. Personally, I did not identify as disabled when I was still a student. It took most of my twenties to come to terms with the way my chronic illness impacted my life, and thus my studies and only when I was pursuing my Master’s degree did it occur to me that I could ask for accommodations. 

The latest data on students with disabilities that we have is from 2016/17 and comes from the study “best2” (“Beeinträchtigt Studieren” – Studying with impairments). This was a second study on students with disabilities done by the German National Association for Student Affairs (Studentenwerk). This study reports that of the 11% of disabled or chronically ill students, only 9 percent actually have a so-called disabled person’s pass (Schwerbehindertenausweis). Not having this kind of official recognition is, however, by no means connected to the severity of the difficulties in their studies that students experience. Rather, it shows that the need for an official ‘label’ when asking for accommodations does not reflect the reality of disabled students, 62 percent are strongly or very strongly impacted by their disability or chronic illness when it comes to their studies.  

Only 4 percent of students are visibly disabled which means that 96 percent of students with disabilities do not use mobility aids, such as wheelchairs (which are still predominantly seen as the icon of disability) or have any form of impairment that can be discerned from the outside. This means that it’s actually quite likely that there are people in the classes you are taking who have an invisible disability. The study above states that about 53 percent of students have psychological illnesses, such as depression, while about 20 percent report living with physical illnesses such as multiple sclerosis, chronic pain, or inflammatory bowel disease. 

Because so many of these chronic conditions are not only invisible but also, in many cases, linked to shame and kept secret, it can be hard for disabled students to get to know other disabled students. Personally, I told my lecturers, often at the end of the first session, that I had a chronic illness and would be coughing a lot, and I preemptively apologized for interrupting classes, because I had internalized that having a disability or chronic illness was a reason for pity and usually understood as a burden (both on me and on everyone else). For the same reason, I tried to pass as nondisabled in front of my fellow students.  

This invisibility and lack of awareness also means that students often don’t dare to ask for accommodations and that teachers do not make their classes inclusive, because they simply forget that there may be students in their classrooms who may need different forms of support or changes in the way the class is taught.  

So to come back to the initial question: I believe it is crucial for both students and university staff at different hierarchical levels to become active, in the sense of making chronic illnesses and disabilities more visible and creating more awareness around the topic. The university, on all levels, really, be it in terms of study, research, or teaching, is characterized by a demand for hyperproductivity in which there is no room for disabled, “not normal” bodyminds. Bodymind is a term by the scholar Margaret Price that is meant to reduce the emphasis on the Cartesian body-mind split and to highlight that “mental and physical processes [do] affect each other and give rise to each other” and to stress that “mental disability matters”. 

How can teaching (at the CAU and at universities in general) be made more inclusive? 

There is no general “fits all” approach to more inclusive teaching. One important part is to create an atmosphere in the classroom, in which students feel that they can approach their lecturers and ask for what they need.  At the beginning of the classes that I teach, I always include an access statement to signal my willingness to listen to students’ concerns and to make adjustments to my way of teaching or to the materials that I distribute:  

“I am completely committed to making our class a place where everyone can learn. Any student who may need an accommodation based on the impact of a disability, mental health concern, or other personal circumstances should feel they can reach out to me and we can discuss how best to meet your needs and facilitate your best work and learning in this course. If possible, please communicate with me about your accommodation needs during the first weeks of the semester. Of course, if concerns arise later, let me know as well. Our classroom is a safe space that will allow for respectful, free expression and exchange of ideas. Do not hesitate to approach me if you have any concerns.” 

This may look like lip-service at first glance, but I believe it is really important to show students explicitly that I am aware some of them may be dealing with chronic illnesses or disabilities and that I am willing to support them. Actually, since I have started sharing this statement, students have often approached me after class to disclose disabilities or chronic illnesses or asked for support in different ways.  

Creating a (more) accessible course can mean providing texts and power point slides in larger print or as accessible pdfs, giving deadline extensions, not banning the use of laptops, not commenting on students eating or drinking, encouraging students to move around in the classroom if they need to, not penalizing students for fidgeting (or using their hands during discussions, e.g. to knit) or giving content notes in my course description if my class discusses texts that deal with topics such as disordered eating or sexual violence. It also means disclosing my own disability. During this term, I offer students the possibility to attend classes via Zoom if they do not feel well.  

It is important to remember that accommodations are not ‘perks’ or ‘extras,’ they are reasonable adjustments regarding accessibility that disabled students need to be able to participate in class in a manner equal to their nondisabled peers. The CAU has ratified the UN Disability Rights Convention and can be held accountable to their promise to make studying for disabled or chronically ill students more inclusive. Dagny Streicher, the representative for disabled and chronically ill students, can support students looking for guidance and advice, for example when it comes to official requests for accommodations (so-called Nachteilsausgleich).  

As someone working in Disability Studies, I also try to teach classes that deal with the topic of disability or chronic illness in American literature. In doing so, I am also able to raise awareness around the topic more generally (and I also try to do that in my research).  

What can a single university student do to create a more inclusive environment? 

Single university students are not in positions of power, and it can be difficult to change a system from within, in particular, a hierarchical system such as the university. It is not my place to tell disabled students how, when, or to whom to disclose their disability. Making disability more visible at university should not come at the cost of making oneself vulnerable.  

If you don’t have a disability or chronic illness: Try to be an ally! Support your disabled or chronically ill peers when it comes to fighting for accommodations. Show solidarity. Do not park your e-scooter in the middle of the road (you’re creating a hazard for blind or visually impaired people). Don’t block the wheelchair ramp to LS8 and LS10 (or anywhere else, really) with your bikes. If the elevators are broken, tell your lecturers, or make a call to the facility manager yourself.  

Change the way your talk. Remove words like “idiot” or phrases like “this is so lame” from your vocabulary. Don’t give unsolicited advice to people with chronic illnesses (“Have you tried …?” – They probably have). 

Follow disabled people on social media. Have a look at the hashtags #AbleismTellsMe #ActuallyAutistic #PhDisabled #DisabilityTwitter #TheBarriersWeFace #DisabilityTooWhite or #ChronicIllness. Try to learn from them. Use alt-text when you post pictures.  

Read the work of disabled people. For example, a great place to start if you would like to learn more about disability at university are the books Mad at School by Margaret Price (2011) and Academic Ableism by Jay T. Dolmage (2017). Care Work by Leah Lakshmi Piepzna-Samarasinha (2018) is also a wonderful book about solidarity and the challenges that disabled queer or trans BIPoC face. Disabled people know what they need and what they want; they are experts when it comes to taking care of their bodyminds. Try to learn from them.  

Share your notes from class if your chronically ill friends can’t make it. Visit them if they are sick (and if they want to be visited). Bring them food if you can afford to. If you’re having a party, try to find out if people you invite have allergies or intolerances and see if you can provide something they can eat. Keep wearing your masks and get tested to protect the vulnerable students around you. Stay home when you feel sick.  

If you witness discrimination or ableism, say something. You can always approach the faculty diversity commissioners. I myself serve as a diversity and equality officer at the English Department together with my colleague, Dr. Melissa Schuh (who is also deputy diversity officer for the faculty of arts and humanities), but you can also approach Eddi Steinfeldt-Mehrtens, the university’s diversity commissioner.  All of these are acts of solidarity and they matter. 

How do you handle setbacks with regard to activism?  

I tell myself that ableism is deeply ingrained in our society. The pandemic has once again shown that the idea that people with disabilities or chronic illnesses are expendable and that their lives are less valuable than the lives of nondisabled people still exists. Activism is a long-term engagement, not a quick fix-it. Small steps, like the ones outlined above can already go a long way.  

Could you name one sentence or question which can be a beginning for reflecting upon one’s own actions? 

Two actually. The first is the motto of the disability rights movement “Nothing about us without us.” If you want to get engaged in disability activism, do something with, not for, disabled people. Initiatives should be disability-led, meaning that the people in charge of decision-making should be disabled themselves. This does not mean that you should not become active, but talk to disabled people and make sure you support their ideas. 

And two: Ask yourself “Who isn’t in the room” or “Whose voice isn’t being heard”? Disability is an intersectional category, which means that disabled people also experience other forms of discrimination, such as racism, sexism or transmisia. So if you organize something, or if you’re doing advocacy work, ask yourself who isn’t there. Is the venue for your LGBTQ+ event wheelchair accessible? Does the poster for your anti-racist event you posted on Instagram include alt-text? Disability is a category that is often forgotten when it comes to activism so remembering to ask yourself if disabled people have a chance to participate and if an event is accessible is an important step.  

Thank you for the interview!