End-of-summer stress and the inaccessibility of reasonable accommodations

I went hiking recently and saw some tarantulas. They were not happy to see me, and I was not happy to see them….

After about a month of trying to make the university understand that yes, I have a rare immunological issue that affects my nerves; and no, I can’t have a COVID vaccine according to my doctor; and yes, I pay out of pocket to see the best specialist I can; and no, the doctor cannot sign the same paperwork multiple times on short notice; the administration has finally been so kind as to provide me with a medical exemption. This only took several weeks of work, the signatures of two medical professionals, many emails and calls to university hotlines, an expensive appointment fee that prompted me to take on an extra job this summer, and a four-page letter to the university in which I threatened legal action. I’ve pasted the full content of that letter to the bottom of this post, for those who want to know more about how my immune system problems affect my day-to-day life, or for those who want to know more about the extent to which the university administration’s medical exemption paperwork process has burdened disabled students and employees.

Many of my able-bodied friends who support the nationwide rollout of university vaccine mandates have been shocked at how difficult it has been for me to gain accommodations. “But you are an obvious exception to the rule,” they tell me. “If you just present paperwork signed by a doctor, that should be sufficient.” But when I presented the university with paperwork signed by my doctor, it was deemed insufficient. “The university should pay for the necessary appointments,” they say. “Anything less would be unjust.” But I’ve been paying $350 appointment fees out of pocket, after the doctor at the student health center denied me a referral because he thought my symptoms were “fake.” “Vaccine mandates will protect the disabled who can’t get vaccinated, by forcing able-bodied people to get vaccinated so that we reach herd immunity,” they’ve said. But with new variants spreading, and more and more data indicating that we can’t reach herd immunity solely through a vaccination campaign, this is looking more and more unrealistic by the day. Immunocompromised people still can’t leave their homes safely, because even vaccinated people can pass COVID to them. Meanwhile, people with other immune disabilities — like mine — are struggling to obtain exemptions to the mandates. At this point, it appears that there’s a large sector of society that doesn’t care whether disabled people live or die.

Of course, the justified complaints of disabled people are being lost amidst a hailstorm of righteous indignation coming from many vaccinated, able-bodied folks, who still appear to be in denial about the accumulating evidence regarding transmission from vaccinated people with breakthrough infections. I encountered yet another disastrous opinion piece today (link here: https://chornbe.medium.com/its-not-agree-to-disagree-when-you-re-killing-people-e0ab192cdecc) and wrote up a short response:

“Damn there’s a lot of crap to unpack here. I likewise had COVID in early 2020. I also can’t have any vaccines due to a rare immunological condition that affects my nerves. I work for a university and had to fight them for about a month  over their vaccine mandate — yes, even after my doctor signed the paperwork saying I can’t have the damn shot — all for the ‘privilege’ of not being simultaneously fired from my job and kicked out of my on-campus apartment during a pandemic. Still, some legislatures in my state have considered passing laws making it illegal for me to *grocery shop,* because I don’t have the shot. I’m a household of one and I have multiple disabilities requiring a highly specialized diet. I don’t have anyone else who can shop for me. And yet no one seems to consider whether such laws would violate the rights of disabled people.

“It’s been argued that getting the shots will get us to herd immunity, thereby protecting immunocompromised people who can’t receive a shot. But with recent data showing that the shots may only reduce symptoms in the vaccinated  — and do not prevent the vaccinated from spreading COVID  — it’s becoming apparent that we can’t reach herd immunity solely through a vaccination campaign, and so the ‘get vaxxed to save your disabled neighbor’ argument holds no water. Rather, some people with immunological disabilities now face a twofold dilemma: (1) they are at higher risk of contracting and dying of COVID as the virus continues to be spread by both the vaccinated and the unvaccinated, especially as employers force them back to work and are unwilling to provide the same accommodations that were provided last year; and (2) they are barred from certain parts of society simply because they can’t have the shot. In some cases, medical exemptions are allowed, and in some other cases, they are not. Even in situations where medical exemptions to the shot *are* permitted, my situation with my employer has shown that such exemptions are not easy to obtain, even if  — as in my case  — you have a rare and severe condition for which you pay out of pocket to see the best specialist you can.

“What’s even more bizarre is that I am a *previously infected* person with a significant level of immunity. I’ve been re-exposed multiple times recently without falling ill. While I have an immunological disability, I’m not immunocompromised and can make antibodies. I am working from home this fall and won’t be in a physical office with other people too frequently. I don’t go to bars or gyms or other crowded venues. So even though I am generally *immune,* don’t frequent risky places or interact with others in public places much at all, and can’t have the shot *according to my doctor who thinks it could cause me to suffer lasting brain damage,* I am, in the eyes of people making vaccine mandates, a dirty potential disease vector who deserves few to no rights. This attitude isn’t well based on the available scientific evidence, and the only reason I have to deal with this type of discrimination is because I have severe immune system problems.

“Tl; dr: There are more people with immunological disabilities than you’d think. Also, an immunological disability isn’t the only reason why a doctor might recommend against someone getting the shot. There are people who haven’t received the shot for logistical reasons, such as employers who won’t allow them to have time off in the case of side effects (and so getting the shot brings a risk of getting fired). Simplistic analyses like this one overlook the fact that middle-class able-bodied whites are not the only people with rights during a pandemic. Over and over throughout this whole ordeal, disabled people have been told that our lives don’t matter, and this is just more of the same.”

While the reactions I’ve received from friends and coworkers, regardless of political affiliation, have generally been compassionate and supportive, there’s one thing I wish more people would understand: When you implement public-health measures for an entire population, that population always always always includes people with rare disabilities. Although we might be a tiny minority, rules that are made without us in mind almost always affect us in horrible, negative ways that legislators and administrators fail to anticipate. While medical exemptions to rules *do* exist, the burden of proof for receiving a medical exemption is generally very high, the cost of the medical care necessary to access the accommodation or exemption very expensive, and the waiting lists to see the necessary specialists very long. As I explained in my letter to the university administration, it’s unreasonable to expect disabled people and their providers to produce additional paperwork on short notice, especially when there are only a few qualified specialists in the country who can treat specific medical conditions. So, without further ado, here is the full text of that letter:

______________________________________

“To Whom It May Concern:

“Due to recent difficulties, both bureaucratic and financial, regarding my application for a medical exemption to the university’s COVID-19 vaccination requirement, I am writing this letter as an explication of my needs and demands.

“Let me first briefly introduce myself. I am a second-year PhD student in the Logic and Philosophy of Science department, arguably the foremost department of its kind in the world. My current research involves mathematical evolutionary models. Previously I was at the University of Notre Dame, where I conducted both ecology and environmental-health research, while earning degrees in both philosophy and evolutionary biology. My contract at UCI requires me to teach/TA within the School of Social Sciences, and I live on university property, in a housing complex owned by American Campus Communities; in this way, I am both a student and an employee of the university, and simply residing in my housing unit constitutes a physical presence at UCI. My long-term goals are to become a full professor at a research institution, as well as a leader in my field. I am not currently in contact with my parents, who belong to a conservative religious sect; disapprove of the fact that I am gay, study evolution, vote Democrat, and do not attend church; have confiscated thousands of dollars’ worth of stipend money from me in the past; and refuse to seek mental-health treatment for themselves, despite the fact that I have diagnosed PTSD from them starving me, verbally abusing me, subjecting me to medical abuse in a notorious military hospital, and depriving me of sleep—all of which occurred when I was a teenager. As a teenager, I taught myself high school—including calculus, biology, and physics—at home, so that I could score well on the SAT and ACT and escape to college and a better life. I was far luckier than many of the other girls in my religious community, who were either forbidden from attending college, or left so permanently disabled from the abuse that they now struggle to work and support themselves. To summarize, I have come a long way despite numerous obstacles in my path; and I have no intention of allowing the university to render me homeless or unemployed, or otherwise destroy my budding career, by requiring me to be inoculated against a disease I already have immunity to, using a vaccine that my doctor believes would most likely cause me irreversible brain/neurological damage.

“My first encounter with COVID-19 occurred in late January 2020, while I was still a student at Notre Dame. My immune system was worn down from stress, given that one of my friends had just died in a horrific suicide that made national news; and I was infected by a classmate who told me that the disease was ‘just flu.’ I developed a nasty cough that would not permit me to speak, as well as breathing difficulties that continued for 3-4 weeks. Thankfully, the only ‘long COVID’ symptom I still have is a deep cough that arises whenever I laugh too hard. I was re-exposed to COVID in May 2021 during a routine nasal swab test at the relatively unventilated DCE Yosemite conference room, and developed mild symptoms (whole body aches, chills/hot flashes without an actual fever, headaches) for approx. 5-7 days that were observable to no one but myself. I could write an entire essay on the ableism, carelessness, and sheer stupidity of a policy that requires unvaccinated students with immunological disabilities to expose themselves to COVID in order to obtain a COVID test, on pain of losing their education, housing, and source of employment; but for the sake of space I will not write it here. Let it suffice to say that I established immunity to wild-type COVID by mid-February 2020, and that I was relatively asymptomatic upon reinfection 15 months later, when I was re-exposed to a newer variant through the university’s negligence.

“As I have already briefly noted, I was diagnosed with some disabilities after escaping my abusive childhood home. Among these are PTSD and panic disorder; chronic migraines/headaches; and a rare mast cell disorder. Given that the mast cell disorder is what prevents me from receiving any vaccines, not just vaccines against COVID-19; and that university bureaucrats seem eager to fight me over whether it is a ‘legitimate’ disability that they are legally required to accommodate; I will provide an overview of the disease, its symptoms, and its impacts on my life.

“Due to both scarcity of research funding, and a lack of collaboration between researchers from similar but nonetheless isolated research clusters, the disease goes by several names. In the mainstream medical literature, it is generally referred to as mast cell activation syndrome (MCAS) or mast cell activation disorder (MCAD), and the diagnosis may include anaphylactic-type reactions to certain allergens, fumes, and inactive drug ingredients, as well as neurological symptoms that arise after exposure to the same substances. It is generally recognized that the disorder is similar to mastocytosis, to the point that some researchers argue that MCAS and mastocytosis are simply two slightly different presentations of the same disease. Recognized risk factors for MCAS include birth by Caesarean section, history of Lyme disease, changing houses multiple times within a short space of time as a child, and PTSD—all of which I have. The only treatment options available consist in (1) taking antihistamines, as I do daily, and (2) avoiding substances that have been identified as actual or potential triggers. Within the environmental-health research community, the same disorder is referred to more informally as multiple chemical sensitivities (MCS), and it is emphasized that the symptoms may arise after either acute high-dose exposure, or chronic low-dose exposure, to certain environmental toxicants, including things as seemingly harmless as household mold contamination. Finally, a third research cluster within the medical community refers to the disease as multiple drug intolerance syndrome (MDIS), with diagnostic criteria requiring similar adverse reactions to several classes of seemingly unrelated drugs; the reason such seemingly unrelated reactions occur is, of course, because the patient develops an intolerance towards one or more inactive ingredients that are used across a wide spectrum of pharmaceutical products.

“Henceforth I will refer to the disorder as MCAS, as that is the dominant terminology used in the medical literature. Regardless of terminological differences, it is generally agreed upon that the disease is progressive, with patients developing intolerances to additional volatile substances and/or inactive pharmaceutical ingredients over time; so that even if the patient is able to develop a ‘safe list’ of drugs or ingredients that do not result in anaphylaxis or flare-ups, it is possible that they will develop an intolerance to items on that list in the future. Migraines, neurological problems, and digestive issues (given the presence of mast cells in the gut) are common complaints; and extreme/late-stage presentation of the disease often requires that patients remain home on disability. Such a lifestyle would be at odds with my goals of pursuing a career in academia, and this largely why I am so determined to prevent flare-ups, manage the disease, and prevent it from progressing. I already experience severe gastrointestinal issues that affect me daily and, should my condition progress, would likely require an ostomy; as of right now, I am required to eat an organic, high-fiber diet that is extremely expensive on a graduate-student budget. Because every serious flare-up causes the disease to progress further, preventing flare-ups is a must.

“In my case, I suffer from several interrelated types of flare-ups, and each type involves a distinct set of triggers. I experience allergy symptoms, including severe inflammation and sinus headaches, after inhaling certain types of pollen, petrochemical fumes, and scented perfumes and cleaning products; but these are the least severe type of reaction, and are held largely in check by the antihistamines I take daily. Slightly more severe are the endocrine-disruption symptoms I experience after exposure to certain petrochemical fumes and pesticides, which can leave me bedridden for days, or even weeks, at a time; but this second type of flare-up is generally preventable, as long as I adhere strictly to an organic diet. My third type of flare-up is the most serious, and involves lengthy episodes of nonstop brain fog, migraines, and other neurological symptoms that prevent me from teaching, studying, or working; these always arise shortly (generally, within 24 hours) after ingesting pharmaceuticals containing inactive ingredients to which my body has developed an intolerance. The duration and severity of the neurological symptoms is generally correlated with the dosage of the drug taken; however, even a single pill of a drug that my body ‘rejects’ is often enough to leave me with severe symptoms for 4-5 days, and more serious flare-ups resulting from higher dosages have lasted for weeks or months. I want to emphasize the fact that, in my case, these (3rd type) flare-ups are not anaphylactic-type allergic reactions that can be resolved with antihistamines or an EpiPen. The only cure is to ‘wait it out,’ and my body is always the ultimate arbiter of how long such a wait must be. There is no way to prevent these flare-ups except by avoiding pharmaceutical products that my doctor has not deemed 100% safe for me. As I mentioned previously, MCAS is progressive in the sense that I have developed intolerances to an increasingly large number of pharmaceutical ingredients over time; and each flare-up causes my immune system to become more overactive and disordered, thereby increasing the likelihood of future flare-ups. I can count on two hands the number of drugs that I can safely take. Everything else my doctor has deemed off-limits. Perhaps it is difficult for able-bodied bureaucrats in offices to imagine a world in which basic medical procedures, including vaccinations and general anesthesia, are inaccessible to them. Nevertheless, that is the world I live in. There is very little data available regarding the experience of MCAS patients after COVID vaccination. The only two cases I could find were (1) a patient who immediately went into anaphylactic shock and (2) a patient who developed long-term brain fog and other debilitating neurological issues.

“Because I will surely be given some sort of administrative grief about the fact that I received childhood vaccinations as a child, I will provide a brief version of my medical history to show that this objection has no merit. I finished my childhood vaccination schedule, including the meningitis vaccine, by the age of 17. A few months later, I began experiencing the chronic headaches that still plague me to this day. My first MCAS flare-up began around the same time; this involved approximately nine months of nonstop severe sinus headaches, fevers, and other allergy symptoms, which an allergist was unable to rectify, and which only resolved after I physically relocated from one part of the country to another (from Hawaii to the East Coast). The last vaccination I had was a flu vaccine received days before my 18th birthday, after which I had an adverse reaction; while this reaction is noted in my current medical files, I unfortunately do not have written proof that I received this particular vaccine, given that it was administered in a military hospital in Hawaii. The MCAS symptoms worsened during my first two years of college, during which I developed intolerances towards several over-the-counter allergy drugs and finally found one antihistamine (loratadine) that kept the inflammation to a minimum and that my body did not reject; I still have to take loratadine every day before I leave my apartment, or else I have allergic reactions upon inhaling generally benign substances (e.g., perfumes, cleaning products). Despite these horrific symptoms, I was not able to see a specialist for my condition while in undergrad, partly because I was still on my parents’ military insurance at the time (which does not reimburse providers well or in a timely manner, and so is not accepted by most providers), partly because there were no available specialists in my region of the country, and partly because I was already struggling to pay out-of-pocket medical costs (including $100 therapy sessions and a $5300 surgery) in order to treat my other disabilities and medical conditions.

“After moving to Irvine and enrolling in the Anthem Blue Cross plan offered through student health, I hoped to find treatment for the symptoms I had suffered for so long. I found the office of Dr. Kelly McCann in Costa Mesa (see attached paperwork), an internal medicine specialist with years of experience treating patients with conditions similar to mine. In September 2020, after speaking at length with Dr. McCann’s office, I made an appointment through the SHC in order to request a referral to Dr. McCann. No in-person appointments were offered at the SHC at the time, and I was given a phone appointment with someone by the name of Arguedas. This person spoke down to me in a very sexist and condescending manner, dismissed the symptoms I have had for years, and refused to give me the referral I needed; this was such a horrid and traumatizing experience that I have not tried making another appointment through the SHC, and I do not know if I ever will. As a result, I have been stuck paying out of pocket to see Dr. McCann. These costs over the past 12 months have totaled no less than $1250, which is merely the cost of the office’s annual membership fee ($550) plus the price of two appointments ($350 each). Dr. McCann wants me to undergo certain types of testing in order to pinpoint the underlying causes of my MCAS. However, without insurance to pay for this testing (which would cost me a couple thousand dollars out of pocket), I am currently unable to afford to do this. In the meantime, the best I can do is avoid things that trigger flare-ups.


“The University of California did not release its final COVID vaccination and exemption policies until Friday, July 16. I called Dr. McCann’s office to schedule an appointment regarding the vaccination paperwork on Monday, July 19. By that point in time, Dr. McCann’s office was already flooded with patients who had been putting off certain medical procedures due to COVID, and she was unable to meet with me in person before the paperwork deadline of September 6. As a result, I paid a $350 appointment fee to meet with her physician’s assistant, Matthew McGarvey, on August 2, with the agreement that he would pass off the necessary exemption forms to Dr. McCann. The forms that I gave to Matthew McGarvey (to give to Dr. McCann) on August 2 were the forms accessible under the link emailed to me by UCI on July 22; these forms are available on the UCI Human Resources Website on the ‘UCI COVID-19 Vaccination Policy’ page, and they are nearly identical to the mock/sample forms included in the final vaccination policy released by the University of California on July 16. These forms purported to be for both students and employees, and included both a student certification/signature and a doctor certification/signature. However, when I went to upload the forms (that Dr. McCann herself had signed) in the student health portal, the sample form available for download there appeared in a slightly different format. As a result, I called student health to verify that I was submitting—and that Dr. McCann had signed—the correct version of the forms. The person on the SHC helpline told me to submit the forms I had, and that they would be accepted. So I did.

“Seven business days later, I received a message from student health, saying that they were not in fact willing to accept the version of the form that Dr. McCann had signed, and that they wanted her to sign the alternate form available for download in the student health portal. I called yet another UCI COVID vaccination hotline, and explained that I had already taken on a summer job to cover the first $350 appointment fee and could not afford to pay another $350 fee just to have another, nearly identical, form signed. After about a week, student health responded yet again, insisting that the first set of forms I had submitted was insufficient, and that the second form was necessary. I called Dr. McCann’s office, and they agreed to sign the additional form without an appointment, and at no extra cost to myself; however, Dr. McCann was not physically present to sign the second form, and so the signature on that form is that of Matthew McGarvey, her physician’s assistant. According to the wording on the paperwork, the signature of a physician’s assistant should be sufficient. However, given the trouble that I have encountered throughout this blatantly discriminatory and burdensome bureaucratic paperwork process, I have little confidence that you will accept this second version of the form without giving me further hell about it. I have attached both the original form (signed by Dr. McCann) and the second version of the form (signed by McGarvey) to this document, so that anyone who looks at the paperwork can see that I am in fact Dr. McCann’s patient. If you object to the fact that McGarvey signed the second form, and not Dr. McCann, then I do not know what to tell you, except that specialists like Dr. McCann book appointments months in advance, and that it is inappropriate and infeasible to expect chronic illness patients and their providers to be able to complete multiple rounds of the same paperwork process within a seven-week period. If you are still unhappy with the way that Dr. McCann’s office completed the paperwork, you are welcome to try calling them at (949)-574-5800, but I highly doubt that they will be able to produce a third version of the same paperwork before your looming deadline. Please note that their office does not use medical record numbers, and that I have scribbled this at the top of the second form. Again, if you object to the fact that McGarvey has not given as detailed a description of my condition as I have given here, I do not know what to tell you, except that the best person to describe my body’s physical limitations would be Dr. McCann, and Dr. McCann does not have time to complete additional paperwork before September 6.

“To summarize, I am a grown woman with multiple significant disabilities and a strong background in the biological sciences, completing novel research at what is arguably the top institution in my field. I am not an appropriate target for a poorly orchestrated disinformation campaign that seeks to convince me that the symptoms I deal with every single day are ‘illegitimate’; or that I should be willing to sacrifice my education, my future, or the long-term health and functioning of my brain, just so that the university can justify raking in a few extra tuition dollars before another outbreak occurs and we move online again. I have already requested that my department allow me to complete my TA duties virtually this fall. I will be physically present in my on-campus office space two afternoons a week, at most. I do not drink or go to bars, gyms, or other crowded venues. I sit in a room alone and I study. I am one of the least likely persons on this campus to be a viral disease vector, and I am tired of having my brain and talents being regarded as disposable simply because certain parts of my body don’t work as well as yours do. I have lost countless hours of research time jumping through hoops in an attempt to comply with your paperwork process, and this has strained my relationships with multiple academic advisors. I want to make one thing very clear: If you reject this application for a disability exemption to the mandate, my next step will be a lawsuit. I have already spoken with a legal team affiliated with UC Berkeley, and they are ready and willing to take on my case, at no cost to myself. I hope that you all will be reasonable, and that things will not get to that point.

“I have uploaded this document, which includes both sets of paperwork, to the student health portal with the expectation that I will receive a timely response.

Emily A. Heydon
Graduate student in Logic and Philosophy of Science, UC Irvine”

______________________________________

What I hope people take away from this is not that I am a bitter disabled woman who likes to take swings at my employer on the internet, but rather that I am tired of watching disabled people like myself suffer at the hands of a system that wishes to place them in life-threatening situations based on flimsy evidence and a misunderstanding of the time, expense, and hassle experienced by disabled people seeking appropriate medical care. While there’s no way for me to get back the time and money I lost this summer while trying to “prove” to the university that I actually am disabled, I am honestly just relieved that I achieved the bare minimum: not being forced to take a shot that could hurt my brain, on pain of losing my education, my employment, my housing, and my future.

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