On Academic Ableism
Wednesday, April 3, 2019
This update is overdue, but I have good news to report!
In February, I submitted an open letter to Dr. Becky Pettit, the Vice Chancellor of Equity, Diversity, and Inclusion (EDI) at UC San Diego.
In the letter, I describe my grueling ordeal: nine months of turning to one office after the other for assistance, from my home department (Ethnic Studies) to the Office for Students with Disabilities to Human Resources to the Dean of Social Sciences and beyond. The chronic stress and insecurity negatively impacted my health and even derailed my fundraising efforts.
I met with Dr. Pettit the very day the letter was published, and to her credit, she listened to my story and said she would investigate the matter.
A few weeks later, just as my comrades and I were considering more serious action, I received good news: UCSD’s upper administration agreed to fund a flexible, student researcher position for me through the summer!
In effect, this means I’ll have security and health insurance through September (the same month in which I've scheduled my bone marrow stem cell transplant, or #HSCT). After nine months of constant stress and insecurity, this has been an incredible relief!
To be sure, the researcher position is only a stop-gap solution. It only provides security through the fall, and does not address the larger issue of limited employment opportunities for students with severe medical conditions or disabilities.
While providing a temporary solution to my case, administrators have also been silent around the larger issue of #AcademicAbleism, which extends far beyond my individual case. It is our job to continue mounting pressure until we can ensure all students with disabilities have fair and equal #access to higher education.
Please feel free to contact me if you'd like to support such efforts or learn more! I can be reached at email@example.com.
All that said, this is a victory that WE, as a community, can claim. I’m incredibly honored to have received love from so many sources, and I'm forever indebted to the many individuals from all over the map who supported me this hectic year.
Many thanks to…
Dr. Becky Pettit and her staff at the office for Equity, Diversity, and Inclusion for taking decisive action and doing the right thing;
UAW Local 2865, UC Student-Workers Union for its ongoing support since this ordeal started last June. I'm especially grateful to Raul Herrera, Angela Berti, Lola Ruiz Spears, Celine Khoury, John Sarracino, Alex Bush, and Mike Miller.
Boké for the numerous conversations around strategy and disability justice;
Amrah for the sage advice and helpful connections;
My grad student colleagues Bayan, Aundrey, Hina, and Keva for coming to my rescue when I was too sick to fight, and for committing time and resources to fighting for this cause within our department;
Ale Xia, Mellisa, Liliana and Morgan for the helpful suggestions and work on the petition;
Bill for assistance combing through documents and speaking with lawyers;
A few professors who took a risk and stood for what's right;
The public support of a few disability rights and media organizations (Chronically Academic, Invisible Disability Project, Disability Visibility Project, and the National Coalition for Latinxs with Disabilities - NCLD);
And, as hard as it is to believe, the hundreds of people who signed the petition and sent messages of support on social media.
If you'd like to support me and my fight against aggressive #MultipleSclerosis, please donate here:
#HelpKrysBeatMS #KrysBeatsMS #MultipleSclerosis #MultipleSclerosisAwareness #HaltMS
#stemcelltransplant #HSCT #disability #invisibledisability #AbleismIsThrash #AcademicAbleism #AccessIsLove
Thursday, February 14, 2019
This morning I met with the Vice-Chancellor of Equity, Diversity, and Inclusion (EDI), Dr. Becky Pettit, to discuss my case and address issues impacting students with disabilities. I also delivered a signed copy of the following open letter (text copied below).
Please share with your contacts. I truly hope this results in a positive change for me and other students with disabilities.
PhD Candidate, Ethnic Studies
University of California, San Diego
Thursday, February 14, 2019
Dr. Becky Pettit
Vice-Chancellor for Equity, Diversity, and Inclusion
University of California, San Diego
Dear Dr. Becky Pettit,
I write this open letter in an attempt to open a dialogue around issues faced by students with disabilities and medical conditions on our campus, highlighting my own case (as described in The Triton’s article from February 4th, 2019, “Student Workers Stand Behind Graduate Student Facing Unemployment Due to Disability”) as an example of the consequences of administrative failure to address life-and-death issues impacting student employees.
For over a decade, I’ve lived with Multiple Sclerosis (MS), an incurable, autoimmune condition that causes damage to the brain and spinal cord. In fact, MS is one of the most common causes of disability among young adults, and in the absence of aggressive intervention, can lead to progressively worsened health over time.
Undoubtedly, while getting through five years of graduate school is a hard-won accomplishment in its own right, it is especially so when you embody intersecting marginalities as a disabled, queer, first-generation scholar of color. Yet, despite having faced obstacles and adversities unfamiliar to most in academia, I never anticipated a harrowing ordeal like my current situation—one in which I’ve been forced, for no fault of my own, to fight for income security and health benefits on a quarter-to-quarter basis.
Of course, no one goes to graduate school hoping to endanger one’s health. Yet, in failing to provide timely and reasonable accommodations, the university administration continues to play Russian roulette with my life, exacerbating an already-precarious situation while impeding on personal efforts to manage my medical condition. Despite having done my due diligence in researching funding options, I was still left with no choice but to advocate for myself month after month, in one academic office after the other, while fighting off neurological pain, fatigue, and other aggravated symptoms. To my disappointment, the administrative response to my predicament has consisted of much shoulder shrugging, finger pointing, and references to ‘legal responsibilities.’
It doesn’t take much to imagine what months of chronic stress and insecurity will do to you, particularly in a state of heightened vulnerability like mine. Consider, for instance, the impact of the abrupt cancellation of my TA appointment in September, in which I was left without an equivalent reassignment or comparable income and healthcare security. While last-minute advocacy by my union helped safeguard my medical insurance in September, I was still negatively impacted by the loss of over half my income while attending to my research and academic responsibilities. Months of living in the shadow of chronic stress and insecurity also led to new infections and symptoms that interacted poorly with my pre-existing condition, landing me in the Emergency Room four times in two and a half months.
It bears repeating: The university’s inadequate system for handling disability made me sicker and drove me to the ER.
It is difficult for me to understand and accept this situation. For one thing, I took several measures to avoid this crisis. Not only did I communicate my health needs and provide medical documentation in a timely manner, but I also provided administrators a number of options and strategies for accommodating me. I also have a fairly straightforward case of disability, with countless organizations, books, and websites devoted to the study of MS.
On the other hand, UCSD has demonstrated it not only has the resources to create jobs, but that it can also make work re-arrangements when necessary. Thanks to our family accommodations policy, many abled students and faculty at UCSD can access much-needed job modifications (such as temporary relief of teaching duties) as well as paid leaves of absence for childcare. Additionally, given my medical need for a self-paced job with a flexible workload—a standard accommodation for MS—I’m perplexed by how an internationally acclaimed university with over $1.2 billion in research funding could argue a scarcity of funds for a graduate researcher position.
While I understand that creating a new set of policies to deal with cases like mine may take time (to say nothing of creating a culture of inclusivity), please consider how my ordeal could have been prevented through previous decisive action. My 9-month-old case has already exceeded stipulations of timeliness set by the student union contract, as well as 30-day time frame suggested by the Equal Employment Opportunity Commission. It is also my understanding that this issue of accommodations for sick and disabled graduate students has been recognized and discussed by administrators for years. If your office is unable to take swift action, who can?
Last year, in an interview with the magazine, Women in Higher Education, you described a desired legacy of making UCSD a “more welcoming, more inclusive, more vibrant community” in which people are encouraged to take “accountability seriously.” While I believe we should all play a role in dismantling academic ableism at UCSD, as the Vice-Chancellor of Equity, Diversity, and Inclusion, your office will be particularly crucial to any short- or long-term term solutions that emerge.
Dr. Pettit, I would like to work with your office to help create a more welcome, inclusive, and vibrant community on our campus. Yet, if we are truly committed to tackling ableism, we must act now. Today, in the middle of Black History Month, it may behoove us to remember Martin Luther King Jr.’s classic refrain, that “justice too long delayed is justice denied.”
Krys Méndez is a fifth-year Ph.D. Candidate in Ethnic Studies. Krys’s research examines Central American migration, urban geography, and security politics. You can learn more about Krys in his fundraiser page for more aggressive MS treatment, or keep up with his Facebook page or website.
Wednesday, February 13, 2019
I've had to pull back from working on my high-stakes fundraiser to address the more immediate concerns of my day-to-day livelihood.
It is absolutely egregious that UC San Diego would threaten my health insurance, reduce my income by more than half, and leave me in a constant state of insecurity. All for the crime of having a neurodegenerative condition.
You can read press coverage about my case in the links below:
- Change.org petition (September 2018): "San Diego: Ensure Equal Access To Education for Disabled Students!"
- The Triton (February 4, 2019): "Graduate Student Disputes Termination from TA Position Over MS Accommodations"
- UCSD Guardian (February 4, 2019): "Student Workers Stand Behind Graduate Student Facing Unemployment Due to Disability"
Although #AcademicAbleism derailed my fundraising efforts, I'm more committed than ever to fighting for #DisabilityJustice.
Understandably, people keep asking how I'm able to maintain my sanity through this all this. If you ask me, it's the support of my community that's held me up.
With many forced into silence, I'm also driven to fight for the countless other students who are, or were, affected by ineffective disability procedures.
This is also for all of us, as any student could wind up ill or injured. No one should ever have to choose between job security and health preservation.
This is not a battle I would have chosen. But now that the seal of silence is broken, I believe my case could be used to highlight the unique challenges of living with a severe medical condition or disability, particularly in higher education.
There's another silver lining to all this. I know now who's in my corner. I've built community ties I couldn't have dreamed of. Is it at all surprising that other sick and disabled people are the ones who have defended me the most?
The cross-disability solidarity is powerful, in part because it gives me hope that we can build that world we need. A world that fits many worlds. A world that is truly, irrevocably, and radically #accessible.
Want to help? Here are some options:
- Donate to my fundraiser & share with friends (link below)
- Sign the Change.org petition above
- Share the articles above with your contacts, including individuals with a disability and/or connections to higher education