A different kind of fatigue.

Over a year into the COVID19 pandemic, I still notice the recurring theme of people discussing pandemic fatigue and about wanting life to be normal again. I think it goes without saying that everybody would appreciate it if life did go back to normal. But the focus on “normalcy” ignores the reality that millions of disabled and high risk people have had a very different objective since early pandemic times: safety. 

The past year has been difficult for many, and I do not want anybody to think I am downplaying the various difficulties that come with something like a pandemic. To have your life completely altered overnight is scary and traumatizing, no doubt. But as I continued to isolate, I watched people cling onto their own normalcy at the risk of themselves and others. Thankfully, nobody caught COVID. But what stood out to me was the fact that they simply had these opportunities to hang onto normalcy, whereas my only option — painful as it might be — was to stay inside and isolate from my closest loved ones for over a year. It’s not that I didn’t choose to attend certain events or get-togethers, because I quite literally did not have a choice. The risk of me attending anything, per my doctor’s advice, was and continues to be too high. So what does that mean for me? It means people continue to gather without me, risking themselves and others, allowing themselves to enjoy social comfort in the name of “pandemic fatigue.” And all I can do is watch from inside of my apartment.

The World Health Organization defines pandemic fatigue as “demotivation to follow recommended protective behaviors, emerging gradually over time and affected by a number of emotions.” Then, what is pandemic fatigue when one has no choice but to follow protective behaviors?

On March 29 I tweeted:

@kaylejh

And to be quite honest, it’s true. I and many other high risk people have had to sit back and listen as strangers freely do what they want. We watch loved ones cautiously do what they want, attempting to brainstorm justifications for their actions along the way. We are ostracized from the social get-togethers others use as an escape from their own pandemic fatigue, and we are further shunned for being deemed the fun suckers. We listen to government officials deem our safety as just “too complicated” to secure, and read twitter threads from the governor’s COO that strips us of our identities for the sake of their own propaganda.

And reader? I’m tired. I’m tired of pretending that watching people put others at risk for COVID isn’t draining, or that the apathy people show towards my concerns, whether it be loved ones or government officials, isn’t devastating. I’m exhausted.

I keep asking myself: where do we go from here? How do I reconcile the fact that society is indifferent about my life and lives like mine? How do I continue to care for myself in a world that watches me with antipathy? I’m not yet sure what the answer is. I have tried to keep hope that perhaps peoples’ experiences with the pandemic will create a shift in perspective, allowing others outside of the “disabled” experience to muster up some empathy.

Yet as the pandemic begins to taper down, it’s almost as if the empathy for high risk people has even further decreased. The pandemic is starting to become a non-issue in the eyes of many, creating the illusion that it is now also suddenly less of an issue for high risk people. The post-vaccine invitations begin, with people making plans mere weeks after they get vaccinated to go to the movies or travel across country. I’m not quite sure that I have the wherewithal to continue explaining to people that even with a vaccine, my doctor expressed that it is still unsafe for me to “return to normal” with my immune system. I’m not sure I have the energy to continue disappointing people by being the ‘fun sucker.’

I do have hope for a post-COVID world someday. But forgiving and moving past the societal disregard for the concerns of others’ health and safety is going to take even longer to accomplish.

Music, concerts, COVID & me

I really miss concerts.

Music has always been a significant factor in my life. Both of my parents grew up in the 70’s and 80’s listening to anything from The Kinks, The Beatles, Bob Dylan — to Cyndi Lauper, Depeche Mode, and Talking Heads. And when I was born in 1996, I was immersed into their melodic world. I especially took to The Beatles. There’s no memory in my conscious mind of ever deciding “Hey, I like this!” in regards to music by The Beatles. It was always just a part of my life, and at five years old, I begged my parents to take me to see Paul McCartney in concert for my sixth birthday.

They obliged. They weren’t about to complain about their small child wanting to see a musician that they both have listened to for their entire lives. It helped that their anniversary was three days before my birthday which gave an “excuse” to combine celebrations.

Paul McCartney stands in front of a stadium of people holding up his bass.

So at six years old in 2002, I attended my first concert, seeing Paul McCartney live. I continued to listen to The Beatles, my interest waning in and out depending on the mood I was in at the time. At various times, my parents would bring me to other concerts including Roger McGuinn from The Byrds, The Beach Boys, Ray Davies from The Kinks, and so much more. In middle school, my music taste expanded widely and I became a particular fan of Lady Gaga. I became obsessed, the way I was for years with McCartney. When I was destined to have back surgery the summer following middle school, my parents did everything in their power to have me see Lady Gaga. 17 days before my major back surgery, I saw Lady Gaga live in concert at the age of 13 years old. A baby.

This experience was nothing short of spiritual. Going to the concert, I felt my worries dissipate as I reveled in the music that boomed all around me, devouring my senses. For a whole night, I forgot about the fact that I was going to have surgery soon. It was probably the last night I had free from those worries, as the anxiety led up right until the surgery, and I have been coping with repercussions ever since. The way I knew how to cope with the repercussions of a traumatic medical experience? Going to concerts, taking in the experience completely, releasing myself to the awe and excitement of watching people that I admire so greatly perform in front of me.

The next time I saw Paul McCartney in concert wasn’t until 2011, nine years after the first time I saw him. I remember begging my parents trying to convince them to buy tickets again. I do wonder if he remembers this: I fretted over the fact that the 2002 concert was a memory that was slipping away, and without knowing how much longer Paul McCartney would tour (note: it would be for many more years), I wanted to see him every single time I could to refresh the memories in my mind.

Memory loss from post-traumatic stress disorder and declining cognitive function from a multitude of medications makes refreshing memories ever so important, because I rely on these memories to sustain me. But right now, I can’t attend concerts for reasons that everybody knows: COVID, the safety of others, the safety of myself. Just: there are a lot of things I miss, but wow, I really miss concerts.

Compassionate doctors are scarce. And I just said goodbye to mine.

Despite growing up with chronic pain my entire life, I didn’t go to my first pain management clinic until around 2015. I was in college at the time and heading into one of many flares. I wasn’t sure what I was going to get going in, and was quite apprehensive to begin with. I was met with the doctor whose practice it was, and was under his care for a few months. Things went alright, managing to find a pain management route that worked for me. But of course, as Murphy’s law demands of the surrounding universe, my health insurance suddenly denied the medications I had been on that kept my pain in control.

As my pain began to spiral, so did my life and time management skills. I found myself about a half hour late to a pain management appointment one day; my usual doctor was tied up by that point, so they squeezed me in with the nurse practitioner. And since that day, for the past four years, I have seen this same nurse practitioner, who I shall lovingly refer to as Dr. C.

I have probably cried more in Dr. C’s examination room than any other office. I would cry out of helplessness in regards to the pain, cry out of fear that no one would believe me, and cry out of shame that I was needing to resort to such extreme pain management measures at a young age. While I tried to save a lot of these intense and deep emotions for therapy, there would always be a part of me craving the assurance that I’m not making up the pain. Yes, you read that right. Years of what I now understand to be medical neglect caused me to continuously question the reality of my own pain. Hearing the words from a medical professional that they believe me — or better yet, that they see and know the source of the pain — does wonders. Every time. And every appointment, Dr. C would assure me that the pain wasn’t in my head.


One time, upon examining my back muscles, I asked, “can you feel the muscle knots, though?” Even though a muscle spasm is fairly straight forward, I of course, would question myself.

“Feel them?” Dr C said. “Girl, I can feel them, I can see them…you definitely win for the day.” It doesn’t feel good to ‘win’ in the category of muscle spasms. But it feels great to have my pain seen.


My biggest fear is finding a doctor that refuses to prescribe me the current medication regiment that I am on. In the past, doctors have refused me such pain management under the guise of worrying about my age or my liver (despite lab results never turning into anything significant). The day I walked into Dr. C’s exam room and cried when she asked how I was, she vowed to work to get my life to a functioning level.

She didn’t throw me to physical therapy like every other doctor had, despite it having no actual quantifiable impact on my quality of life and day to day pain. And she didn’t, even more-so absurd, suggest I take up basketball like one of my pediatric rheumatology fellows. She was wholistic in her approach of encouraging physical activity, communication with other doctors, and something other doctors are afraid of: pain medicine.

And that pain medicine changed my life. It allowed me to work a full time job for the first time in my life, and graduate college, and go to graduate school, and actually enjoy my life.

Life before, with the unmanageable pain, was miserable. Life before, with doctors who didn’t care about my self-reported quality of life, was miserable. And I’m terrified to be back in that position. Because as we do know, compassionate doctors are scarce.

I don’t know what will happen when I switch health insurance policies and ultimately find a new provider. It may work out, and I may find another Dr. C. But it also might not. And I just have to sit in this space for a little bit.

So here’s to Dr. C. And to the next doctor: hope you’re not an asshole.

Voting access for disabled folks (2019)

In the spirit of the election, I decided to post a paper I wrote for my Disability Law & Policy class. I’m most definitely not an expert, so please keep that in mind while reading. Enjoy!

Voting Accessibility & Policy

Kayle Hill

DSAB 626

22 May 2019

Professor Wyman

Introduction

    Under the minority model of disability, advocacy for disability legislation is quite large. In America, voting is the way any citizen can make their voices heard politically. However, access to this vote is fairly limited, making it difficult for certain demographics to have their voices effectively heard. Certain legislation has been passed to assist in increasing the voting rates of disabled adults such as the Voting Accessibility for the Elderly and Handicapped Act of 1984, and the Help America Vote Act of 2002.  Unfortunately however, the disparity between disabled voters and non-disabled voters is still quite large.

Disability community as a voting bloc

    The disability community is considered one of, if not the largest marginalized group in America, with 20% of Americans having some sort of disability. Other than the medical model, the “minority model” or “civil rights model” is the most prevalent model of disability today. This model of disability involves seeing disabled people as a disenfranchised group. As the disability movement strengthens and builds upon itself, advocacy tends to focus on awareness in the hopes of gaining more legislation that protect the rights of people with disabilities – to change the attitudes of the people in charge. To be in a demographic comprising as one fifth of the population, it goes without saying that the community forms an extensive voting bloc.

Key legislation

    There has been some important pieces of legislation that have made the attempt to make the voting process more accessible to citizens with disabilities. They are (Colker & Milani, 2005; US Department of Justice):

  • The Voting Rights Act of 1965 – VRA was passed to remove the “secret-ballot” requirement for voters with disabilities. This way if somebody cannot complete the ballot themselves, somebody of their choice can assist them .
  • Voting Accessibility for the Elderly and Handicapped Act of 1984 – VAEHA requires that people with disabilities have access to accessible polling places for federal elections, declaring voting as a fundamental right. The Act also requires that states allow disabled people to vote by absentee ballot.
  • Americans with Disabilities Act of 1990 – ADA was a large comprehensive Act for people with disabilities. When it came to voting however, it requires that polling places be accessible. The big difference between the ADA and VAEHA is that the former is applicable to state elections and federal elections, while VAEHA affects only federal elections. 
  • National Voter Registration Act of 1993 – NVRA attempted to increase the voting registration rates of people with disabilities by requiring that all offices that provide state-funded public assistance also allow the disabled person to register for federal elections.
  • Help America Vote Act of 2002 – HAVA requires that every polling place for federal elections have at least one accessible voting system for those with disabilities to vote. 

    HAVA was one of the more recent pieces of legislation to reform the voting process for people with disabilities. After the 2000 election, the statistics showed that 41% of adults with disabilities voted, while the statistic was 51% for the general population. Colker & Milani (2005) point out the issues with this disparity: 

    Estimates indicate that if individuals with disabilities had voted in 2000 with the same turnout as the rest of the adult population, Vice-President Gore would have won the popular vote by between 1 million and 2.5 million votes and, moreover, he would easily have won Florida and the electoral vote. Indeed, according to the American Association of People with Disabilities, 40.5 percent of Florida voters with disabilities voted in the 2000 presidential election, with an estimated 1.8 million disabled Floridians not voting.

    The point remains that the disability community continue to form a large voting bloc that has the potential to change the outcome of major federal elections. 

Important court cases

  • Nelson v. Miller, 170 F.3d 641 (6th Cir. 1999) – this case was a class action lawsuit brought on behalf of all voters with a visual impairment. There was (and continues to be) worries amongst voters with visual impairments that they did/do not have the right to a secret ballot due to the only available accommodation in many polling locations is to have a poll worker assist the voter in filling out the ballot. It was ultimately decided that the lack of access to a secret ballot was not considered discrimination.
  • People of New York ex rel. Spitzer v. County of Delaware, 82 F. Supp.2d 12 (N.D. N.Y. 2000) – this case came about when the Attorney General of New York sued the county of Delaware under ADA Title II for lack of accessibility in polling places. 

Twitter response

    Out of curiosity, I wrote a Twitter poll to see how many people in the disability community have experienced difficulties voting. With 193 votes in this poll, 45% of people said that they did have difficulties voting, with 55% saying that they have not had difficulties. I offered respondents the chance to share their experiences. A major trend that I noticed was the fact that people who responded that they did not have difficulty voting largely felt as though this was simply because they were able to vote by mail with absentee ballots. However, there are issues with even this method of voting. A respondent said, “My town does curbside voting, which means you can vote from a car. I have to have someone with w/ [sic] a car take me to the pollside. I don’t have a car, so it’s very inaccessible to me to either do absentee (can’t go to the post office) or in-person.”

    It is important to note that any research done through Twitter should be taken as anecdotal evidence, and nothing more. With no control over any variables in the study (ensuring that only applicable people responded, demographic information, etc), the results from Twitter polls should not be considered representative of a larger population at all. However, hearing individual anecdotes of the difficulties with voting can begin to give you a larger view of the issues that those with disabilities have.

Implications for future

    The internet has helped mobilize people with disabilities in ways that many people, including those within the community, never imagined. The immediacy and accessibility of being able to access the internet, especially with assistive technology such as screen readers, has allowed people with disabilities to connect and share experiences and realize that they are not alone. This has helped create social movements within the community, such as the hashtag #CripTheVote started by activists Alice Wong, Gregg Baratan, and Andrew Pulrang. In Wong’s voice (2016), #CripTheVote is a “nonpartisan campaign to engage both voters with disabilities and politicians about disability issues in the United States” (HuffPost, 2016). Gregg Baratan continues saying that the movement was inspired by the 2016 US election, and about how “no one was mentioning us, even in relation to issues that had a major impact on our lives.”

    The potential of the world wide web for people with disabilities needs to be utilized. Disabled activists are starting to use it as a tool for their activism, but it is time for disability legislation to look at the internet as a tool as well. For instance, having the opportunity to cast votes for national or even state elections online would more than likely increase the voting rates of people with disabilities. Of course, casting votes online brings on many more security concerns and whether or not this can be done while still ensuring a secret ballot. At the end of the day, however, there needs to be something tangible done to ensure that voters with disabilities are given access to voting, one of the principal duties of an American citizen.

Conclusion

    Various legislation has been passed to help encourage the physical accessibility of polling locations for elections. However, this has done very little in terms of actually increasing the rate of voting for disabled voters. Many voters with disabilities continue to have difficulties with accessing their polling locations. Even when proper accommodations are provided, such as being provided the assistance of a poll worker, oftentimes the right to a secret ballot is violated. New technology has been made available since the last voting legislation passed for people with disabilities in 2002. Disabled people now have many avenues for mobilization through the internet, and this has started a new movement of political activism called #CripTheVote. Other uses of the internet to increase voting accessibility should also be explored. 

Works Cited

Colker, R., & Milani, A. (2006). Everyday law for individuals with disabilities. Boulder: 

Paradigm.

Ferguson, A. (2016, May 03). The #CripTheVote Movement Is Bringing Disability Rights 

To The 2016 Election. Retrieved May 22, 2019, from https://www.huffpost.com/entry/cripthevote-movement-2016-election_n_57279637e4b0f309baf177bd

Help America Vote Act. (n.d.). Retrieved May 22, 2019, from 

https://www.eac.gov/about/help-america-vote-act/

Nelson v. Miller, 170 F.3d 641 (6th Cir. 1999)

People of New York ex rel. Spitzer v. County of Delaware, 82 F. Supp.2d 12 (N.D. N.Y. 

2000) 

Statistics & Data. (n.d.). Retrieved May 22, 2019, from 

Statistics & Data

US Department of Justice. (2014, October 10). The Americans with Disabilities Act and 

Other Federal Laws Protecting the Rights of Voters with Disabilities. Retrieved 

May 22, 2019, from https://www.ada.gov/ada_voting/ada_voting_ta.htm

I’ve been working a new job! And it’s terrifying.

I started a new position on October 1 to complete a service year with Public Allies, an Americorps program that pairs you with a local nonprofit where you work for 10 months while also receiving other types of leadership training. I was matched with an organization in Bridgeport, CT, and I am helping them with community outreach in various ways. It’s a remote job, and the first (perhaps only?) job that I have ever felt particularly qualified for. This has been making me think a lot about my job history, and the way I have been conditioned to equate my worth with my employment status.

I always searched for validation wherever I could get it. I wanted (and needed) to know that I was as capable as everyone else. The people around me would not only assure me that I was as capable, they would insist that I was even more capable than others. I used to swell with pride at the idea that I was somehow more capable than my peers. At one point, I looked back at such pride with disgust; indeed, I do still look back at certain things I said and did with distaste. I did realize, though, that it wasn’t exactly pride that I felt during these years. It was insecurity.

My first job was an office job through my dad’s work. It was a program meant for children of employees of the company, which I was. At 16 years old, I worked 40 hours a week over one summer doing various office tasks. I was making money and felt valued. It felt amazing. Of course, my joints and back would hurt by the end of the day, aching from sitting at the desk all day. But I managed. I was convinced that with this experience, I would be able to work my way into another office job, skipping right over the much more physically taxing retail and food service positions.

But it didn’t work.

After that summer, I began a year at the local community college. With school only a few days a week, I was determined to find another part-time job that I could work at to earn some spending money. Since I wanted to go to film school, I thought it only fitting that I work at my town’s movie theater. I dressed up far too nicely to speak with two adults who I felt, at the time, held my future in their hands. They ended up hiring me on the spot which thrilled me to no end. I couldn’t wait to get started. Of course, I did not disclose my disabilities.

The job quickly took its physical toll on me. It took less than two hours into a shift for my joints to ache and my back to spasm. I quickly began dreading the job, despite my love for the movie theater environment. I was quickly forced to disclose my medical problems as I became unable to complete particular tasks, such as taking huge barrels of trash out three times my size. And with every added task that I could not for whatever reason complete, my self-esteem rapidly deteriorated. When I didn’t get the positive feedback that I would get from my teachers in school, my self-esteem plunged even further.

Just as I have always strived for such positive feedback from my teachers and employers, I have always yearned for it most from my parents, needing their approval for nearly every major decision I make for myself even well into my twenties. And that’s why I remember the night my mother told me she was okay with me quitting my job at the movie theater: the pure relief of knowing I would not disappoint the people whose approval I craved most. And with that, my job woes were solved for all intents and purposes, until I would try again when I moved away for college, and the cycle would repeat.

Ultimately, though, my parents’ approval alone can’t pay my bills. Worrying about whether or not you can handle a job right now versus wondering if you will ever be able to handle a job is pretty different to say the least. When those jobs cause you to lose your health insurance and keep you from being able to schedule doctor appointments, my curiosity as to how I was expected to continuously survive only increased. The cycle of me getting jobs that I feel as though I can’t handle whether it be physically or mentally, begging my parents to allow me to quit so I can take some time to breathe has continued and most likely will continue. And now, I’m 3 weeks into my new job.

How’s it going, you might ask?

It’s the first job that my lived experience with disability is seen as an asset, and for that I am entirely grateful. I decided to go into this job with the refreshing mindset of I deserve to be here. The truth is, though, is it’s much harder to believe that sentiment than it is to say it. I got permission from my supervisor to go full speed ahead, but I made some vital mistakes in the process. And suddenly, the thoughts come spilling back into my brain. It’s not just that these moments make me feel not good enough, but they strike a fear in me of never being capable enough to maintain a job and support myself. Yes, I catastrophize.

The fear is so overwhelming sometimes that I simply can’t see the future. I can’t see any possible way to move forward and lead a “normal” or “average” life. I find myself in the cycle of self-hatred as I decide to rest my body, ultimately only feeling guilty and lazy. Oftentimes, my anxiety will hold me down, restricting me from making any move forward.

Ultimately, there are a few things I know to be true: just as there are positions I am capable of doing, there will always be positions that I am incapable of doing; my worth does not hinge on my production; I deserve to live, just as anyone, even in the times that I cannot work; people who can work are no better than me.

I just wish I actually believed it. But I think I’m getting there.