I hate summer in New Haven. The weather is good, too good, sweltering hot and humid, so hot and humid, in fact, that wearing long pants seems like one of the most absurd things you could do. So I end up breaking out my fair share of dresses and skirts, revealing my perpetually pale legs and a red-blue scar that runs from the top of my hip, down my inner and outer thigh and curls around my knee. Usually, I am able to hide, but summer begs the question: What happened to you?
My name is Mafalda, and I was fifteen when I was diagnosed with Ewing Sarcoma, a rare form of pediatric bone cancer. So rare, in fact, that only two hundred people are diagnosed with it per year in the United States. With those kinds of odds, I thought, I could get into Yale. And four years later, after six surgeries, seventeen rounds of chemotherapy, two months of radiation and two full femur replacements, I did. But learning to navigate Yale’s campus and social environment with my physical limitations was more difficult than I could have imagined.
Thankfully, I had Disability Empowerment for Yale, otherwise known as DEFY, an undergraduate organization that works to raise awareness and advocate for people with disabilities on campus. Many people, including myself, hesitate to call themselves “disabled,” but legally, the Americans with Disabilities Act, or the ADA, defines disability as “a physical or mental impairment that substantially limits one or more major life activities of an individual.” This includes everything from learning disabilities to mobility issues to severe health related dietary restrictions. Through DEFY’s members, I learned about the diverse spectrum on which disability exists. Despite DEFY’s existence, however, disability as an identity hardly exists on campus.
During meetings, members of DEFY share their experiences at Yale. For example, Paige Lawrence ‘21, president of DEFY, has allergies to nuts, sesame, dairy, corn, watermelon, tomato and a host of other assorted foods from underlying illnesses. Paige often finds it difficult to get adequate nutrition at the dining halls due to frequent incidents of allergen mislabeling and cross-contamination. Other members have also mentioned being made late to classes or stranded by the van services, struggling to get to inaccessible classrooms, professors being uninformed about how to handle disabilities, elevators that are out of commission for months and automatic doors that jam and break or don’t exist at all. When Yale facilities was contacted to ask what this was about, the facilities customer service center supervisor replied that the gates were “ADA compliant.”
Student Accessibility Services, or SAS, tries its best to accomodate all of us given the resources they have. The Director and Associate Director of SAS, Sarah Scott Chang and Erin Braselmann, work regularly with DEFY to try and improve student experiences. But SAS is responsible for accommodations for undergraduate, graduate and professional school students. All of this is done by a grand total of four employees. For the record, Harvard has at least seven staff members dedicated to undergraduate accomodations alone. So while SAS tries its best and the people who work there care greatly, they lack the human and physical resources to make big changes.
Nevertheless, Yale does a good job of following regulations set by the ADA, which is better than most. But should we really be holding this university to a standard set forth by a law passed in the early 90’s? “Separate but equal” was a law and yet we can all agree that segregation was inhumane. The fact is, the law does not dictate what is irrefutably right, and that is the beauty of our legal system: that it can evolve and change alongside our culture and society. I do not want to compare issues of race and disability. Rather, I seek to put disability into a context of current activism, and thereby bring the issue onto a similar platform of civil rights.
I now know that even though disabilities can be difficult to define, they come in all shapes and sizes: temporary or chronic, and visible or invisible.But the lack of a universal definition does not make disability in all its forms any less of an identity worth representing. I was lucky to have DEFY to teach me this, but for the rest of the 11 percent of the student population registered with SAS, Yale’s resources are limited. That is why DEFY is working to create a community on campus for people with disabilities through a cultural center, where people with and without disabilities can connect and learn from one another.
If Yale truly prides itself on the principles of diversity and inclusivity, it should continue to show up for its students in sickness as well as in health. That means being more transparent about what is available to students with disabilities and an effort to educate faculty as well as students about the challenges that people with disabilities face. Finally, acknowledging disability as an identity on campus will help to meet students’ physical needs and provide holistic necessities like community that so many students with disabilities lack. And if Yale raises the standard, I have hope that other institutions, academic or otherwise, will take note and follow suit.
Mafalda Von Alvensleben is a sophomore in Benjamin Franklin College. Contact her at firstname.lastname@example.org .