I have learned what it’s like to be chronically ill on a college campus. This experience has made me more aware of the ableism that persists in every area of life. With March being Disability Awareness Month, this issue is on my mind and heart more than ever.

The atmosphere of higher education is not friendly to chronically ill and disabled people. Between tight deadlines, poor sleep schedules and full Google Calendars, the already-stressful atmosphere of college can be debilitating.

I cannot speak on behalf of all chronically ill and disabled people, nor would I ever pretend to. The experience of every individual in this community is different, and the community represents a range of opinions on how the world can become more accessible. 

However, speaking from my own experience, and from common claims I hear from the community, the world is far behind in achieving accessibility. Higher education represents just one institution that excludes chronically ill and disabled voices.

Higher education 

Higher education operates with able-bodied people in mind. Universities have traditionally been places of elitism, tailored for only the hyper-capable. When this is the case, chronically ill and disabled people have to work twice as hard to achieve the same standards.

The daily experience of higher education expends physical, mental and emotional energy to succeed in even the most basic tasks.

The most exhausting experience in college, beyond the chronic fatigue many people experience, is the mental energy spent advocating for ourselves. Chronically ill and disabled people have to justify their experiences, perspectives and existence to gain even a slight understanding from others.

This energy cycle can be explained by a concept known as “the spoon theory,” a term coined by blogger Christine Miserandino to describe her experience with lupus. 

In Miserandino’s analogy, people with chronic health conditions and disabilities begin their days with a certain and finite number of “spoons.” These spoons represent units of energy, and even the most mundane task, such as brushing teeth, can cost a spoon. Once you run out of spoons for the day, you don’t have the energy to continue. 

Higher education demands we go on anyway. 

The process of securing accommodations for one’s chronic illness or disability is often daunting, exhausting and even humiliating. Many students will be familiar with the section of their syllabus that instructs them to seek accommodations if they have a chronic illness or disability. 

This process, however, places the burden of proof on the disabled students themselves. From the initial step of seeking accommodations, to these accommodations actually being implemented, students are left with weeks of advocating to professors on their own. 

Seeking accommodations is so complicated and exhausting that as many as two-thirds of disabled students have not alerted their university of their condition. 

The process of securing the documentation necessary to receive these accommodations presents its own hurdle. It invokes a medical system that often ignores the claims of women and people of color.

This phenomenon is known as “medical gaslighting,” a recently popularized term that exposes the truth of the medical care system: People are not being trusted to recognize their own experiences. Medical gaslighting is dangerous; 250,000 Americans die each year due to medical errors. 

When facing this system, students may not have the concrete diagnosis that accommodation paperwork calls for. According to a report by Global Genes, it can take 7.6 years to receive a diagnosis for a rare disease. The timeline of a college experience does not accommodate this schedule. 

Misconceptions

The messages that people in this community receive are confusing and contradicting. If we take the time to rest and heal, we are lazy. If we persist through all-consuming pain and discomfort, we must not have been sick enough in the first place. We can only do too little or too much.  

Too often, society is caught up in the visibility of chronic illnesses or disabilities. We only accept the validity of disabilities that are obvious upon first glance. 

This phenomenon is known as “invisible disabilities,” conditions that, while greatly impacting one’s ability to perform daily tasks, do not exhibit external characteristics. Some examples of invisible disabilities include multiple sclerosis and chronic pain conditions. 

Speaking from my own experience, visibility is a poor way of determining someone’s health. If you have a conversation with me at any given moment, chances are I am probably fighting off at least one distracting and uncomfortable symptom.

This visibility problem extends to one’s physical appearance. A common misconception about chronically ill and disabled people is that they must appear disabled through an assessment of their clothing and hair choices. Many have the idea that if one is truly sick, they must appear disheveled at all times. 

While sweatsuits are a personal favorite “sick uniform” of mine, this expectation is not the experience of many chronically ill and disabled people.

Fashion is one of my favorite hobbies. I take pride in my clothing choices and select unique pieces, color combinations and accessories very meticulously. If someone judged me by my outfits alone, they might get the impression that I could not possibly be sick.

This attitude ignores the reality of living with a chronic illness or disability. If I wear makeup, or put together a cute outfit, it’s not because I’ve been faking it all along. It is because I want to enjoy the little things that make life fun. 

The alternative is to lay in bed all day. Some days, that may be all I am capable of. But on the days I can push through, I will. 

Solutions

The best thing that able-bodied people can do to support the disability community is educate themselves. Listen to those with chronic illnesses and disabilities. Since they speak from firsthand experiences, they are most likely experts on their condition. 

You can also support the disability community by following and supporting disabled creators, brands and platforms. The more you expose yourself to disability content, the more you will be able to recognize the ableism that pervades our university and our world. 

While students at The University of Alabama are privileged to have access to understanding faculty and staff, we can always do more. By consulting the voices of those affected by ableism on campus, we can begin to implement solutions that make our campus more accessible.  

I am not an expert on all chronic illnesses and disabilities. I offer only one perspective. If you are someone with a disability or chronic illness and you wish to contribute an opinion, please email me at [email protected].

March may be Disability Awareness Month, but we live with chronic illnesses and disabilities every day. When we better understand other perspectives, we will be able to create a more accessible world for all.

Questions? Email the opinions desk at [email protected].