Dark Socks

One of my favorite quotes from The Simpsons is when Lisa says, “I learned that beneath my goody two shoes are some very dark socks.”

In my early teens, I was sent to juvie for eight months for self injurious behavior. Before that, I was a bit of a goody two shoes, compulsively following most rules I was given. But one of the first things I learned from the juvenile correctional program was that some rules are made to be broken. By my third day there, I learned that I had to break the rules in order to poop.

One of the rules there was that we were required to shower every day. My first shower was prompted by someone saying, “You, shower now.” I did as I was told, and when I stepped out of the bathroom 15 minutes later, I was met by my enraged peers, closing in on me like a pack of angry dogs. By occupying the bathroom for more than ten minutes, I had apparently communicated that I’d decided I was more important than anyone else there.

The next day when it was my turn in the bathroom, I spent about five minutes on the toilet before hopping in for a quick shower. I got out, dried my head enough to put in my hearing aids, and vacated the bathroom in just under ten minutes. This time, everyone looked at me with disgust, like I had shit on my face or something. I got in trouble for being unsanitary because I had spent less than five minutes in the shower.

The day after that, I tried to poop faster, but I couldn’t. I stopped in the middle to go turn on the shower so I wouldn’t get in trouble again. When I finished on the toilet, I had just enough time to wet my hair so people would believe I’d showered. It worked. I didn’t get in trouble.

I began to see the dark socks peeking out from beneath my goody two shoes. I learned to feign showers regularly so I could poop in the toilet without getting in trouble for being selfish or unsanitary. It makes almost as much sense as sending me to juvie to punish me for punishing myself.

Not Smoking

Whenever I take the train, I bring a painting respirator with me. It’s the only place I wait around outside under “no smoking” signs, so I know I’m almost guaranteed to have people blowing cigarette smoke in my face. Tobacco smoke makes me sick, and dust masks don’t keep it out. When I wear a breathing mask, some people blow smoke in my face intentionally. When that happens, a dust mask will actually trap the cigarette smoke in and make things much worse. I love how my painting respirator protects me from tobacco smoke, even if people are blowing it right in my face.

A few weeks ago, I got off a train where a group of people was hanging out on the platform next to an overturned shopping cart that was really in the way. One guy in the group was intentionally obstructing the flow of people getting off the train while blowing smoke into as many people’s faces as he could while we squeezed past him. I walked by with my painting respirator on, and he looked me in the eye and said, “Fuck you, white bitch.” He was obviously looking for a conflict, and kind of a turd. I wasn’t surprised, but I have some major problems with what he said.

I am comfortable with people resenting me for being white, but there was a lot more than that going on. He singled me out from the other white people because my body’s needs are different from the average human body’s needs. That’s ableist. Also, he used a misogynist insult, which triggers my gender dysphoria. But what upsets me the most is the context in which he called me a bitch. I prevented him from putting something into my body that I didn’t want there, and he responded by calling me a bitch. He was obviously an asshole, so it makes sense that his words had rape culture in them. But plenty of less objectionable people have said the same thing in similar circumstances, which is a bad pattern.

I think a lot about how white I am when I wear a painting respirator to take the train. Lots of people stare, but the worst thing I seriously worry about is having an angry smoker burn me on purpose. In the grand scheme of things, that isn’t very scary. Cigarette cherries burn at a low enough temperature that it takes at least a couple seconds of sustained contact to cause any significant injury.

If I were a POC, though, I would be seriously worried about getting murdered by police for having a health problem and taking public transportation. People might think I was a terrorist, so I probably wouldn’t wear the painting respirator at all and would simply tolerate my illness and be discreet when I have to puke. POCs who have health problems like mine don’t have the same freedom to protect their bodies as I do.

Wearing a painting respirator to ride the train is a really white thing to do. Not because I’ve seen other white people do it, but because if I wasn’t white, I’d get harassed by white people for doing it. And that would almost certainly lead to police involvement which is inherently dangerous. I wish more smokers would consider who they might be hurting that can’t safely do anything about it.

Waste Not

I am frequently given the message that I waste resources by being disabled. Healthcare is treated as a luxury in this country (USA). Welfare recipients are vilified by politicians and the media. When social security gets cut, some older folks rant about how all the money they paid in got wasted. My social security disability benefits have kept me alive, so I feel bummed when I hear people complaining about what a waste that has been.

In my efforts to earn a bachelor’s degree, the majority of my professors have refused to accommodate me in the ways disability services staff have recommended. One professor even forbade me from advocating for myself in class when other students’ behavior was interfering with my ability to learn and participate. (Interestingly enough, that was the professor that taught me the basics about social justice.)

I definitely internalize and perpetuate these attitudes toward myself. I consistently treat others’ needs as more important than mine. When I do jobs for money, I pay myself less than minimum wage because I know I don’t work as quickly as other people do. I have a hard time feeling like I have any value when I’m not doing lots of volunteer work.

I love the Earth and I am passionate about reducing litter and waste. I’ve been picking up litter in various places for about seven years. I buy bulk and bring my own containers and bags. I bring my own dishes to events with disposable dishes. I always try to have a water bottle with me.

In the past year or so, I’ve come to realize that my passion for waste reduction has become entangled with my internalized ableism. When I don’t feel worthy of having my basic needs met, I frame it as a waste issue. If I am hungry but I can’t prepare food from scratch today, is it OK to produce plastic waste by eating prepackaged food? If I forgot my water bottle at home, is it OK to buy a bottle of water to stay hydrated during a meeting? If I forgot my coffee cup at home because I was so drowsy from my meds, is it OK to get coffee in a disposable cup to help me wake up?

People who love me would probably answer any of these questions with, “Yes! And remember, you still produce way less trash than most people.” I’ve been working on being more gentle with myself about these things.

A month or two ago, I saw an article about how banning plastic straws disadvantages disabled people. It turns out that compostable straws disintegrate in hot liquids. Before reading the article, I hadn’t considered this issue because most of us don’t use straws with hot drinks. But people who need to use a straw to drink want to enjoy a hot beverage sometimes, and common alternatives to polystyrene don’t work well for this. Compostable straws melt, and stainless steel or glass straws conduct heat, thus increasing the risk of burns.

When I ask myself if I should be allowed to get a coffee even if I forgot my cup at home, I really want to be able to say yes. But when I think about this, I can’t help but also consider the people who need a straw to drink their coffee. If they forget their titanium or silicone straw at home, should they still be allowed to drink coffee at a restaurant? I’m worried that plastic straw bans are legislatively answering, “No!”

I am very concerned about plastic waste, and straw overuse is a significant part of the problem. However, I am not comfortable with a proposed solution that has the greatest negative impact on a marginalized group of people.

The Telephone “Game”

I hate the telephone game. That’s the one where a message is passed down a line of people via whispers. The first person whispers the message to the second person who then whispers it to the third person, and so on. The idea is to get the message down the line intact, but it usually gets changed as a result of people mishearing each other. I remember being required to play it many times during my childhood. Adults always made us play if we had to wait in a line for very long.

If someone wanted to invent a game that would make hard-of-hearing kids feel like crap while encouraging others to dislike them, I think they would have come up with this game. I hated being expected to hear people without being able to read their lips at all. I often couldn’t decipher any of what was whispered to me, so I had to just make something up to keep the game going. The other kids would get upset when the end message was too different from the beginning message too many times. Eventually they’d figure out that I was the one screwing it up, then everyone would get frustrated with me for playing the game wrong.

I wish I would ever have been allowed to opt out. My hearing impairment was documented. I hated playing that crappy game, and everyone hated playing it with me. I wish I had been allowed to quietly hone my mental math skills instead.

Raising Intensity

When I was 14 (and 15), I spent 8 months in the non-secure part of a large correctional facility. I was in a building called the “shelter.” I had been told it was a residential mental health care center, but it was the unlocked building on a prison campus. The shelter primarily housed discarded young people who hadn’t committed any crimes. It was bad there. It was a punishment-centered program, and I got punished several times a day for being hard-of-hearing and for experiencing side effects from my medications.

Twenty years later, I continue to experience PTSD symptoms from that placement multiple times every week. Sometimes it comes up in my weekly therapy. A month or so ago, my therapist told me that she thinks there are a few ways in which the Lino shelter is a little better than it was a decade ago, but they still do some really messed up stuff, such as “raising intensity.”

I came home from therapy, talking about how raising intensity is not a way to help anyone. Elysa asked about the practice, and I said, “Oh yeah, that’s when everyone stands in a circle around the accused and screams and swears at them and calls them names. Sometimes staff members even throw furniture. If you get spit on your lips from someone screaming in your face, you’re not allowed to wipe it away.” She was kind of horrified. I suppose that’s a healthier response than my learned indifference.

Possible Side Effects

For fun or something, I decided to put the side effects lists from all my prescribed mediciations into one big fun list. Here it is: high blood pressure, chest pain, shortness of breath, bleeding, low blood sodium, low white blood cell count, diabetes, high cholesterol, low blood sugar, seizures, dizziness, headache, shakiness, confusion, hallucinations, strange dreams, trouble sleeping, nervousness, anxiety, tiredness, insomnia, eye problems, ringing in ears, dry mouth, nose or throat irritation, drooling, trouble swallowing, abdominal pain, upset stomach, vomiting, constipation, gas, loss of appetite, weight gain, excessive sweating, reduced sexual ability, tardive dyskinesia, serotonin syndrome, neuroleptic malignant syndrome, toxic epidermal necrolysis.

Jesus’ Pizza

There have been many times in my life that I’ve been punished for not hearing things. One example that really sticks out in my memory is from my early to mid teen years, when I went to a youth group meeting at my church. I arrived hungry, eager to eat the free food that had been promised. Bible study came first.

When the pizza arrived, everyone’s attention wavered. There was a little more preaching, then several people near me sprinted toward the food. I couldn’t hear what was said, but I went for the food too. I didn’t want to miss out. I was usually the last to know what was going on because of my hearing impairment.

Unfortunately, I had chosen the wrong group to follow. Apparently we had jumped the gun and disrespected everyone with our gesture of entitlement. The minister said another few sentences and something about, “The first shall be last and the last shall be first.” Everyone went for the pizza, so I did too. By the time I realized I was part of the group that was banished to the back of the line, everyone else was standing where they were supposed to. I followed the scowls of my peers to my proper place at the very end of the line. I didn’t get any pizza that day.

I think it was supposed to be some sort of lesson of about patience or humility or something, but what I learned was that Jesus didn’t want my disabled ass to have any pizza. Sometimes I wonder what would have happened if I had spoken up about not having been able to hear, but that possibility didn’t occur to me at the time. I’m still trying to teach myself to stop treating my hearing impairment as a personal defect.

Hurdles to Hearing

I am hard of hearing. I’ve worn hearing aids since I was in grade school. My hearing aids allow me to pass as hearing in many situations. Talking on the phone is the hardest, so I generally avoid doing that. I am grateful for my hearing aids, as they increase my access to a variety of services, but wearing them too much of the time gets to be pretty painful. I have extra sensitive skin, and the friction and the poor ventilation make the outsides of my ears very sore sometimes. My right ear is fairly sore right now, but I can still get my hearing aid in  pretty easily. I call this a medium amount of soreness.

ear with sores around the canal

My hearing aid goes in like this, but I’m trying to give my right ear a break for now. It’s hard to heal with the earmold pressed against the sores. I always have some degree of skin irritation in my ears. It’s worse when I sweat more.

ear with an earmold that has a tube coming out of it

When my ears really need a break, they bleed or seep and then get scabs. If I still wear my hearing aids, I sometimes end up with a nasty infection. One time, I got such a bad skin infection that my outer ear started fold in on itself.

I choose to wear my hearing aids most of the time when I’m interacting with others. I guess I generally find the convenience to be worth the discomfort. Perhaps the greater influence here, though, is the social pressure to make sure I hear as much as I can. If I can do something to hear better, there is a cultural attitude that it’s my responsibility to do that, but I don’t think most people know what that means for me.

In addition to the pain of raw and cracked skin, there are some nuisance factors that get frustrating sometimes. I have trouble keeping the processor (the behind-the-ear part) in place because my ears are small. And I have to be careful not to get them wet, since they’re not waterproof. That means watching out for water fights and always carrying a waterproof case for emergencies. I also have to keep extra batteries on hand.

I’m supposed to get my hearing aids maintained every six months, but I usually get it done closer to once a year. They clean my hearing aids and replace the tubes. I used to always feel like my eardrums were burning for a couple hours after tube replacement, since the fumes from the adhesive didn’t agree with me. Now they air them out better before returning them to me, so it doesn’t burn anymore.

I tried to get my hearing aids maintained two days ago, but I had a problem with my health insurance. The number that I, as a consumer, can call for automated info said my insurance was active, but the source my providers use said it was inactive. So I had to call around to figure out the problem. Unfortunately, hearing over the phone is hardest when I’m overdue for maintenance.

Elysa called one number for me and waited on hold for about an hour to find out that we needed to call another number. She called that number and left a message. Two business days have passed and no one has called back. I’ve been glued to my phone the whole time, hoping for a call back when Elysa is here to help. We’re going to forego a proper night’s sleep tonight in hopes of getting some answers during early morning office hours tomorrow.

As with lots of medical treatments, hearing aids don’t provide the easy fix many people hope for. And now it’s taking more hearing ability than I have to keep my hearing aids maintained.