PUNK AS FUCK
HAYLEY CRANBERRY SMALL
Sometimes your body can’t handle the city. You look at the stairs, at the broken elevator, and at the lack of seating in public space: societal barriers that prevent you from doing it all yourself. Living your life by yourself. So you are shitting your pants on the L train and your knees give out on the stairs and a bunch of teenage boys laugh as you trip. And you’re crying on the sidewalk outside the First Avenue CVS to the receptionist at your new doctor’s office, begging for an emergency appointment. The best doctors in New York City have a multiple week, sometimes month, wait. But here’s a life hack: if you shit yourself on the L train and cry to the receptionist, you can get a same-day appointment.
I am relatively able-bodied. At least, I look pretty healthy, but my insides are chaotic. My chronic illness is invisible, and it’s exhausting to constantly remind the people I surround myself with that I can’t do the same things as them sometimes. What I am is not what society thinks qualifies as disabled. But the Social Security Administration has 11 categories for disabilities, number five being “digestive system” and number 14 being “immune system”—inflammatory bowel disease qualifies under both of these.
I accidentally fall asleep at 7 p.m. and wake up 12 hours later, just in time to do it again: wake up and commute an hour to my 9-6 job in Midtown. New York is huge, and most of my friends live about 45 minutes away, even though it’s only three miles in distance. There’s no time to socialize when you are exhausted from just being alive.
And during that hour commute in the morning, you’re standing next to a man doused in cologne and your sensitivity to fragrance gives you a migraine for the rest of the day. Or you didn’t have the time or energy last night to buy groceries, so you didn’t have anything to eat for breakfast before you left for work. And while the train is stopped underground for 15 minutes, you start to feel faint and dizzy, weak and shaky. I need a seat because my blood sugar level is low; I’m going to sit on this soiled train floor because I’m able-bodied passing and no one offers a seat. Finally the train starts moving and by the time I get to work I am drenched in hypoglycemia-induced sweat and need an hour to recover, so I lie back on the cool leather couch in the office library and slowly drink some soy milk—sugar and protein to get my sugar levels normal again. And I’m so lucky my company and supervisors are understanding and sympathetic, until my new job isn’t.
When I started my new job and disclosed my disability, the human resources director told me, “Don’t worry, everyone has something,” as if her reductionist ableism that invalidates my experiences is supposed to make me feel better. When I ask to work from home some days to deal with my fatigue, I’m treated like a child who can’t be trusted and needs to be micromanaged. The first thing my boss says to my request is, “If you abuse the privilege then we’ll take it away,” before even discussing the logistics. No one at the company prioritizes my request or takes any action to figure out how to set up server access from my house, and two weeks later I angrily quit. I don’t need to be treated like a child. I know what I need to feel healthy. And being away from home 10-plus hours a day under fluorescent lighting with minimal windows, paired with a healthy dose of corporate negativity, is not it. This is not it.
Before this job, I was truly so lucky to find myself at a company that values their employees. I was in graduate school full-time and worked in the office part-time. I also worked another part-time job: trying to navigate my health insurance and medical bills. I spent hours in the private library at my office on hold with my health insurance company, on hold with the hospital billing department, explaining what my insurance representative said to me, explaining what the hospital billing department said to me, trying to get them to three-way call with me, crying over $2,000 outpatient bills. “I’m a graduate student! I don’t have $2,000!” Finally someone on the hospital’s side pitied me enough to conveniently find a grant program that immediately reduced my bill over 50 percent, within just a five-minute phone call after months of back and forth with different representatives. I call this DIY medical bill negotiating.
Without insurance, my intravenous biologic infusion can cost $5,000 per treatment, which I receive every eight weeks. These are my options for healthcare:
Freelance / work part-time to make enough money to pay rent and afford a few other things, but keep my income below ~17k, which qualifies me for medicaid. Medicaid covers all of my healthcare expenses 100 percent with no out of pocket costs.
Freelance / work part-time and make more money than would qualify me for Medicaid. I would pay over $700 per month through the Affordable Care Act for a higher level insurance that still has a $600 deductible and doesn’t even completely cover the infusion (also many of these plans do not cover biologic infusions at all). So I would make a little more money but spend most of it on sort-of-decent healthcare.
Get a full-time job with benefits and destroy my body and mental health again :)
Here are some other options I’ve considered:
Get married to a friend that has great healthcare. Or, can we make an app for this? Will love u 4 healthcare ;)
Find someone who has a decent-sized business with good healthcare options that will put me on their employee roster so I can receive healthcare subsidized through their company. I’ll pay them whatever percentage of the monthly premium the company doesn’t pay (so, maybe $200-$400/month). Come on! Please!
Do any companies give part-time workers benefits?
I D K ??????????
Have you ever run off the train three different times during your one hour commute to find a bathroom in New York City? Have fun finding a place that lets you use their bathroom that isn’t the most disgusting 2 x 4’ room you’ve ever stepped foot in. Have you ever finally found a bathroom and then just shit blood for 15 minutes? I have a card that I keep in my wallet that says, “Urgent medical notice, please make your bathroom accessible,” but I’ve never used it when I urgently needed a bathroom. The time it takes to explain, show the card, probably get turned away and/or have to speak to the manager, and then best case scenario have someone show me where the bathroom is and unlock it, is about four minutes after I’ve already shit myself.
Having a chronic illness means that your life is a DIY project (if you’re healthy enough to represent yourself). You must advocate for yourself in medical situations, for health insurance, and fend for yourself in inaccessible public spaces. When I am in remission and the blood has subsided, I still carry the lingering traumas and anxieties that come with my illness. I am still weak in the knees, chronically fatigued, hypoglycemic, always at the doctor. So at what point am I unable to do it all myself? At what point does society become accessible for all of us, instead of acting like a barrier? Sometimes I need help, and I’m learning that asking for help when you need it is more punk than doing it yourself.
Hayley Cranberry Small (@hayleycranberry) is a chronically ill artist and urban planner who lives in New York City with her dog, Greta. She runs and curates Lutte Collective, a community for disabled and chronically ill women and non-binary artists. Hayley is interested in how data, art, and sustainable urban initiatives can intersect to create community vitality. Her multi-disciplinary work explores relevant themes such as urban landscapes, humans, and their relationship with their environments, and the sick/disabled experience.