dehumanization

Cute, Part 3: Poetry

Content note: poetry in the elementary classroom

I’ve written before about my dislike of the adjective “cute” in regards to my students. Sometimes, it’s used as a disability consolation prize. Most of the time, “cute” is more about how the adults feel than about how my students feel. They’re getting older now, some of them are 10 and 11; “cute” is becoming more condescending. Context matters, of course. Several friends pointed out on my previous blogs posts on this topic that context matters, and that “cute” can be a compliment. It can be, but I maintain that for people who see my students every day, who know them, who have seen them from many angles, “cute” is a non-compliment that ignores the many dimensions of their personalities. It’s the “Hihowareya” fly-by of the school environment.

Right now, my class is diving into the thick of our spring open house preparations. The open house is a month from yesterday. It may seem like we have a lot of time, but with only four days of school a week, and field trips, parties, therapies, and other interruptions thrown into the mix, we really do not have a lot of time to get ready. I decided to focus our energies into literature and poetry study. We just finished our first-ever novel, so we are doing open-ended wrap-up projects: the students each chose their favorite character and completed a character web, descriptive paragraph(s), and illustration. The kids finished their writing today, and the mini-essays are so different. Ponyo focused on one specific event that only took up two pages of the entire novel, an interaction between the main character and her little brother, whose relationship during the rest of the novel reminded me of Ponyo and her younger brother. TLK chose the father, and talked about actions; every action he picked (killing a one-horned buck, surviving smallpox) was centered around the love for his family. Sir New Dude also chose the father, but focused on character traits like bravery and strength.

We are reading and writing poetry. They picked a favorite poem from a wide selection of books I offered, and they will be presenting it in a few different ways. The students will each work with me to translate it to ASL and record it. The students who wish to read it in spoken English may do so (three students asked if they could, so I added this). They will illustrate the poems they picked. We are also translating a song and recording a music video. Working with them, hearing and seeing them give voice to each poem, looking at their illustrations, digging through the meaning they attach to the ideas has been simultaneously surprising and totally expected. It fits with how I understand their minds and hearts to work, but the nuance and depth they bring reminds me how often we (and I include myself here) do not give enough credit to young people for their ability to make connections to the world and each other through text.

Sir New Dude and TLK selected “Grasshoppers” from Joyful Noise: Poems for Two Voices. TLK follows SND’s lead for reading aloud; the roles are reversed for signing. They each wear one hearing aid, so they sit side-by-side, their aided ears together when they read it. SND is a fast reader, so he is practicing listening and waiting for a partner; he has a tendency to steamroll people in regular conversation, too. As a hard-of-hearing kid, it might be a compensatory tool for controlling his environment so he doesn’t miss anything–if he’s the one talking, he knows what’s going on. When they were drawing, they searched YouTube for nature videos of grasshoppers jumping, some in slow motion. Using science to understand art–beautiful. 

Freckles chose a poem from Locomotion by Jacqueline Woodson titled “failing.” Right away he told me, This kid needs to learn math but it’s really about life too. I asked him why he liked the poem. He said it felt good. The kid in the poem laments the adult answer of, Just ’cause; Frecks was nervous, but when I told him he wouldn’t get in trouble for saying adults make him feel frustrated, too…well, you can probably guess what he told me. I added a few pencil marks on the poem and asked him to read it again. After he did, adding the pauses and a breath, he looked at me and said, Yeah. That was good. That last line was even sadder when I breathe. Frecks gets poetry. Of course he does; there’s a reason he was drawn to that book–his whole life is poetry. I am not trying to be profound or emotive. I mean that the first two stanzas of the first poem in that book could have been written about Freckles and his noisy brain that no one ever calls cute but everyone is always telling to be quiet and sit down and stop singing.

Elsa picked a poem from the book Food Hates You, Too, called “Toast.” It’s about bread getting eaten and being dead. She drew a really morbidly hilarious picture of dismembered bread being eaten by worms, and two angel breads going to heaven. All those people who tell me how cute she is are missing out on a wicked sense of humor. That toast was gross, man. And so, so funny.

Ponyo’s poem is from Heartsongs, by Mattie J. T. Stepanek. She stares at the picture of Mattie during poetry time. While other kids were drawn to a book, or a specific poem, she was drawn to the poet. She spent 20 minutes today watching subtitled clips from Oprah on YouTube. Mattie was a boy with muscular dystrophy who started writing poetry when he was 3; he died when he was 13 before my students were even born. He was a peace activist and poet who became quite famous in the late 90s when he wrote his Heartsongs books. Ponyo drew a picture of Mattie instead of a picture of her poem. She originally picked the book because she was going through a goofy sweetheart phase, and the book is called Heartsongs. But when she learned about Mattie, and read the poems, the sweetheart stuff stopped. Completely. But if I ask her why she loves it, she doesn’t know. That’s a bit more complex than “cute” can give her credit for.


Note: The above titles are linked through Amazon Smile. If you purchase the books through those links, I don’t get any money, but the CADASIL: Together We Have Hope Foundation does get a small contribution. CADASIL is a hereditary stroke disorder that leads to dementia, but as a relatively new-ish discovery, is often undiagnosed or misdiagnosed. As such, it does not get the attention or research dollars of better-known conditions such as Alzheimer’s disease. All Amazon links I provide will support this foundation. Or, if you have a favorite charity, take five minutes to change your Amazon account settings to Amazon Smile!

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A Tale of Two Idahos… actually, it’s the same Idaho

Content note: gun violence, police violence, police-involved shooting, intersection of race and disability, accidental shooting, human death, animal death

Idaho has made a lot of headlines in the last few years.

During the 2014 legislative session, Idaho lawmakers made us the 7th state to approve conceal carry on college campuses, despite vocal opposition from nearly every stakeholder, and the failure of the same bill in 2011.

In September 2014 the first month of the first semester the law was in effect, a professor shot himself in the foot while teaching on one of our university campuses.

In December, a two-year-old child accidentally shot and killed his mother with a concealed handgun while rummaging in her purse.

I’m starting to see a pattern here.


On Friday, The Guardian ran a lengthy piece on two officer-involved shootings in northern Idaho. From the article:

The first victim was Jeanetta Riley, a troubled 35-year-old pregnant woman, shot dead by police as she brandished a knife outside a hospital in the town of Sandpoint. Her death barely ruffled the tight-knit rural community, which mostly backed the officers, who were cleared of wrongdoing before the case was closed.

The second shooting, in nearby Coeur d’Alene, sparked uproar. There were rallies, protests, sinister threats against the officer responsible, and a viral campaign that spread well beyond the town and drew an apology from the mayor. The killing was ruled unjustified, and the police chief introduced new training for his officers.

The victim of the second shooting: a dog named Arfee.

I live in southern Idaho, a nine-hour drive from Coeur d’Alene. Just 10 minutes away in the town of Filer, an officer shot a dog last year. There was outrage then, too. When the officer was returned to duty, outraged citizens started a petition to get the mayor recalled. Nothing came of the petitions, but they added an eight-hour training course for dealing with dogs.

In the comments surrounding the stories I linked above, a pattern emerges: It was the professor’s fault he got shot–he must have been carrying his gun unsafely. It was the mother’s fault she got shot; her gun was stored in her purse unsafely. Jeanetta Riley deserved to get shot–she was on drugs and she didn’t comply with police directives.

In other responses, to the other stories, a second pattern, another Idaho, emerges: OH MY GOD WHO WOULD SHOOT A DOG?!

These are the comments and messages and conversations I’ve heard over the past seven years: If you respect guns, you’ll be fine. If you raise your kids around guns, they will have a healthy respect of guns. And, likewise, if you listen to the police, you’ll be fine. Everything boils down to this: Just follow the rules, and you won’t get hurt. It follows that if you get hurt (or killed) then you did not follow the rules, the blame falls squarely on you, and you can expect little sympathy. The fact that dogs elicit more sympathy, empathy, and outrage than human lives should tell us that something is wrong with that lens. The fact that Arfee’s owner got an $80,000 settlement, while Jeanetta Riley’s family have not even received an apology, should tell us something is wrong with our system.

The incidents with the dog in Coeur d’Alene and the dog in Filer each prompted targeted training for officers handling potentially aggressive dogs. That is reasonable training to have. The officers also need training in recognizing and deescalating a crisis situation with a person with a mental illness or psychiatric disability. Their department provides it, but neither officer had taken it. That is necessary training to have.

I would like to submit another story for your consideration: In December, police in Twin Falls, Idaho, arrested Randy Scott Hill after a 25-hour standoff, during which time Hill brandished a knife, yelled at police, exited and reentered his home, threw the negotiation phone back at the police, waved a hammer around. No one was injured or killed.

Hill, a white male, survived his encounter with police after they put in 25 hours of patient attempts. Riley, a Native American female, died as a result of her encounter with police after only 15 seconds. Both reportedly have a history of disability and violent behavior; for Riley, the intersection of race with psychiatric disability, as has been well-documented by others, proved fatal.

This is the Cult of Compliance. And here, in Idaho, all of that is wrapped up in the added layer of gun saturation.

Last month, two local schools (a mile from my house) were placed on a three-hour lockdown because a man was walking down the street with two firearms. Police inquiry revealed he was simply doing just that: walking down the street with two firearms. He was within his legal rights to do so. A commenter on the newspaper’s website wrote, I support open carry and I support this kind of response from our educational and law enforcement leaders. This is why Idaho is great. 

The day after the Veronica Rutledge was killed by her 2-year-old in Wal-Mart, the Washington Post wrote a piece of Idaho conceal carry apologetics to indicate that this was so much about guns that it wasn’t about guns:

“In Idaho, we don’t have to worry about a lot of crime and things like that,” [Sandow] said. “And to see someone with a gun isn’t bizarre. [Veronica] wasn’t carrying a gun because she felt unsafe. She was carrying a gun because she was raised around guns. This was just a horrible accident.”

This is the Cult of Compliance: the energy and logical acrobatics required to maintain status quo.

Internalized Audism

Content note: ableism, audism, communication access, disability rights, ADA, institutionalized oppression

Back in February, Congressman Glenn Grothman, R-WI, encouraged his constituents to pry into the lives of citizens on government assistance. From an article in The Northwestern:

Grothman said he hears stories about seemingly able-bodied people receiving disability payments, Social Security payments and Food Share benefits. He told the people in attendance to keep an eye on the types of things people on Food Share buy at the grocery store or ask people for more information if they boast about being on disability.

“I would argue some people are arranging their life to be on Food Share,” Grothman said. “You just look at them and kind of wonder.”

I know that The Undeserving Poor is a standard in the conservative legislative playbook. I know the idea of Proving Disability is something those with both visible and invisible disabilities encounter all the time. I’ve heard it a hundred times, but never before in the context of actually asking constituents to pry into the lives of others. That was a new one.

It reminded me of conversations I’ve had with Deaf friends and colleagues. The internalized ableism against “those deaf” who get benefits expressed by those who do not. It causes me to step back and analyze how my position within a formal institution may perpetuate those perspectives.

You see, years back, I had a group of students who were primarily hard-of-hearing. Down the hall was a group of students who were primarily deaf. They were not grouped by hearing levels, but by academic need. One group worked at a faster pace closer to grade level; the other group required more targeted intervention at a slower pace with more repetition. But do you know how the kids saw this grouping? They saw the deaf students as less intelligent, and the hard-of-hearing students as more academic, as having the superior language access.

Of course, we didn’t know that at the time. And those students would not have been able to verbalize those perceptions and attitudes as fifth-graders. Those students are in high school now. And all of their teachers are Deaf. And we have a serious problem with attitudes rooted in internalized audism among the middle school and high school students, not just toward students, but toward teachers. Refusing to use sign language, insulting their teachers’ language use. Power and privilege of hearing status, loud and clear (literally).

People who are culturally Deaf embrace their language and their heritage and their culture. American Sign Language, growing up in a Deaf school, finding peers with that common experience… these things are crucial for developing that Deaf identity. Growing up with a deficit model of deafness, a deficit model of any disability? The internalized ableism can be damaging, and not just for the individual. I saw a vivid illustration of that this weekend.

Not every deaf person grows up with Deaf (cultural) identity. Many deaf people grow up oral, or with signed English, or in a mainstreamed school setting, or with any number of accommodations or adaptations to their hearing loss that their family decides is the best route for their child at the time. Some of these children grow into adults who find Deaf culture. Some of them do not.

sComm is a communications company with a face-to-face typing device called the UbiDuo that could be sold as an option for accessible communication for the deaf. However, they are marketing it with very dangerous language as a replacement for sign language interpreters in hospitals, emergency rooms, and even in the court systems for child abuse cases. In the process, the deaf business owner, Jason Curry, has repeatedly belittled ASL, interpreters, and the Deaf community by calling ASL a simplistic language and crippled communication (he actually used the word crippled). The language surrounding his marketing, his defense of his remarks, and his YouTube videos dating back to 2012 illustrate a high level of internalized audism (that is, oppression of the deaf). His audism does not only affect himself, though. The marketing of his device would have huge ramifications if hospitals purchased it in lieu of maintaining contracts with trained and certified interpreter services. People would die.

The Deaf community has responded swiftly, with reminders not to belittle Curry’s signing (he uses manually coded English, which some members of the community were belittling when his response video was first released). I am following this pretty closely, and I will pretty much only be posting links to the Deaf business owners and activists doing the leg work on this. This is their show. But it is important for me to listen, and to listen hard. Because this has ramifications for my work and my classroom. Because what I do here with fifth graders impacts what happens in the high school. And our high school students leave and become Deaf adults. And the last thing we want to do is to add more power to the patriarchy.

Hair (More or Less)

I have a great many follicles. Those follicles produce a prodigious amount of hair. I was born mostly bald, but by the age of three I had thick hair down to my butt.

I have a student whose hair rivals mine in thickness but far surpasses mine in personality and texture. She reminds me of Miyazaki’s Ponyo: she is loud and expressive and loving and mischievous and her hair matches her mood. Also she loves swimming. And ham. Her hair has been long and curly-wavy as long as she’s been in my class, which has now been three years. When she was in first grade, we spent a lot of time using the quiet room and learning how to deescalate; most of our one-on-one rapport-rebuilding time involved me extracting her cochlear implant from her hair, combing her hair, and either braiding it or putting into a ponytail. Like me, she associates tress-TLC with affection, and I applied it liberally. Bus trips returning home from field trips are challenging for her (really, any transition is hard for her), and I still play with her hair to help her stay relaxed and fall asleep. When a child communicates in unique ways, you learn their language as you help them learn the language of the world.

Third-grade Ponyo hasn’t needed the quiet room in two years. Third-grade Ponyo got her hair cut this winter; it was the shortest haircut she’s had since she enrolled here in preschool. It bounced and swooshed and sproinged with every move she made. She looked lighter and brighter with each step. She practically levitated with each step and couldn’t wait to tell me all about her exciting weekend when Auntie cut her hair. Her fingers were flying with the details. KISS-FIST!! she exclaimed. My hair beautiful! My hair fun! I LOVE IT!

This morning, I arrived at the cafeteria to retrieve my class from breakfast and found Ponyo with red eyes and tears streaming down her face. Her jaw was clenched as firmly as the fist holding her hot pink hairbrush. My alarm bells went into overdrive: this was one frustrated and hurting child.

Ponyo is one of our residential students. She lives at school in the cottage during the week and goes home during the weekends. Except last weekend the ISDB Adaptive Ski and Snowboard Club went on the final weekend trip, so she hasn’t seen her family since March 8. And she’s been with her school friends since March 9. School friends become like siblings, and they bicker. And starting tomorrow is Spring Break. And transitions are hard. So bottled up inside Ponyo are a lot of feelings: she misses her mom, but she knows she’ll spend ten days home with only rudimentary communication; she’s tired of her friends, but she knows these are the most communicative people in her life right now; she’s learning not to be a bully, but her friends don’t always trust her yet; she’s exhausted and excited.

And this morning, after who knows what precipitating events, Ponyo refused to brush her hair.

When I got to the cafeteria, I got the abbreviated version of events and a to-go container of her breakfast. Ponyo refused to brush her hair and left the cottage–that is in violation of the morning rules. She was not permitted to eat until she brushed her hair. As she had not brushed her hair, she had stood in the cafeteria gripping her brush for 30 minutes while her friends ate. She refused to say the Pledge of Allegiance, refused to look at any teachers or paraprofessionals in the eye, and now it was time for her 8 a.m. speech therapy session.**

Today the only power Ponyo had was the power to not brush her hair. None of this was about the hair. None of this is about the cottage aide that issued the false choice of do-hair-or-no-breakfast, either.

It’s about the system that told me that fixing her hair after a “blowout” in first grade was denying her the “natural consequences” of her behaviors. The system that labels a child “defiant” instead of “hurting.” The system that invades her personal boundaries to tell her to be respectful to adults. The system that uses or withholds food as part of the behavior management system.

That system is wrong.

It is ableist and dehumanizing to assert that my students can only respond to a reward-and-punishment style of discipline.  They can handle real conversations about expectations and behavior. To insist otherwise is insulting to their intelligence and their humanity.

It compounds the dehumanization to extend consequences beyond the immediate time frame of the behavior; my student will not walk around with unkempt hair all afternoon because she misbehaved in the morning. Teachers are not bullies.

It is harmful to ignore the whole child and focus only on behaviors. All behavior is communication; we need to listen to what our kids are trying to tell us.

It is invasive and hypocritical to disrespect a child in order to teach respect. It’s like striking a child to teach him that hitting is wrong. Or shouting, Gentlemen, you can’t fight in here! This is the War Room!

It is unhealthy to use food as a bribe or reward; it is unhealthy to withhold or delay food as part of a punishment.

Ponyo felt awful all day. She cried at least half a dozen times. Was brushing her hair worth disrupting her learning today? Was it worth a recess where she refused to go outside because, Heart sad cry?

It’s a complicated issue, all wrapped up in her bouncy, swooshy KISS-FIST hair. Food as punishment. Cult of Compliance. The gendered implications of If you don’t brush your hair, it will look messy all day, as though messy hair supersedes her need to transition home smoothly, feel success in math, and read her favorite graphic novel.

gif animation: Ponyo (as a fish) gnaws on a piece of ham.

gif animation: Ponyo (as a fish) gnaws on a piece of ham.

**The speech therapist was amazing this morning. She always uses a calm voice and clear signing with my kids, provides clear choices and follows through. When Ponyo came back at 8:30, she was doing much better. Another aide saw us in the hallway later having some special teacher-and-Ponyo time and stopped to ask about her My Little Pony shirt, which brightened her spirits right away. There are a lot of positive supports built into our school. There’s a lot that needs work, though, too.

The Words We Choose to Use

Trigger warning for derogatory, ableist labels such as the r-word.

I have a migraine this week. I’m not surprised, as they plague me on a regular basis. I just can’t trace this one back to a trigger the way I can trace most of my migraines. So I’m going to blame this one on measles.

Fret not, friends: I do not have the measles. I have not been exposed to the measles. And I have been vaccinated against the measles. I am attributing this migraine to the amount of time I spend cringing, facepalming, and headdesking every time I read about the measles outbreak. I cringe when I read the articles, I facepalm when I read the comments, I headdesk when I read quotations from adult humans who should really know better but still manage to use language that is so damaging and ableist and dehumanizing that I can hardly believe that a living breathing human can lack empathy to such a degree.

My aim here is not to get into the vaccine/anti-vaccine debate, although I will be pulling some information from both sides. I’m not arguing science today; I’m analyzing language. Where to start? There is so much rhetoric through which I have slogged, I can hardly begin. Perhaps I shall start with the viral man-meme of the hour: Dr. Jack Wolfson.

Dr. Wolfson shot to instant internet stardom with his four-word retort to those who blame the current measles outbreak on parents like him, who choose not to vaccinate their children against such diseases: “My child is pure.” He went on to say that a child with leukemia–who cannot be vaccinated against the measles–“very likely” got leukemia from the vaccine in the first place.

“My child is pure.” When I read that sentence, I shivered. The implied superiority, nay, the explicit superiority is astounding. To first assert that his child is more clean, more pure, than a child that has leukemia, and then to contend that the child has leukemia because of the parents’ decision to not maintain their own child’s “purity” is steeped in privilege, judgment, and, dare I say, social Darwinism. At the end of the CNN piece on this story, Wolfson indicates he would feel no remorse if his unvaccinated child exposed a vulnerable child to measles because “people die,” and it’s not his responsibility. In his worldview, it’s entirely the fault of the parents of the child who died. He verbalizes no empathy whatsoever. It boggles the mind.

Wolfson’s words should not have been so shocking for me to read; he echoes the sentiments of the bulk of the anti-vaccination movement. No matter where you stand on the science, there is one thing I want to make clear: anti-vaccine rhetoric is damaging. It blames parents for their children’s autism. It tells autistic individuals that they are broken, a burden, and a scourge to be eradicated through protest and activism. It reinforces disability hierarchies, placing autism on a scale with polio, measles, rubella, and pertussis, and saying, “We’d rather risk infecting hundreds of people with measles than have a kid with autism.”

One mother, in a Slate article this week, summarized this stigmatization perfectly as she shared her story of raising her children (one of whom has autism) during the beginning of the anti-vaccine era:

Autism has been a witch-hunt for centuries. Demons, refrigerator mothers, vaccines, gluten. These hysterias torture parents. They also marginalize the children themselves. During the years of vaccine fever, my son was seen as something monstrous, to be avoided, the result of damage—instead of the quiet, funny, often troubled person that he is. Our society’s drive to eliminate his kind, even if it meant bringing back diseases that kill, has had a dark, dehumanizing effect on his life.

Let that sink in for a moment.

My criticism does not fall only on the side of Dr. Wolfson, even though he does garner a large helping for himself. Anyone who draws an imaginary line and divides children into the categories of pure/impure or clean/dirty is bound to get a few words from my fingers. There are many on the “Please just vaccinate your kids already!” side of the debate who engage in equally damaging uses of the English language.

There are comments that encourage parents to vaccinate their children by telling a scary story of someone they know who had polio/measles/etc., and then refer to those people as crippled, retarded, or deaf-and-mute. There are the comments that invoke disability hierarchies, saying that even if vaccines caused autism, at least autism isn’t as bad as [complication from disease]. These labels are ableist, dehumanizing, and absolutely unacceptable.

Even in the CNN piece, the mother of the three-year-old child with leukemia used ableist language that shocked me: “My biggest fear is that I’ll lose my child, or that she’ll become deaf.” Her biggest fears are, in order, death and deafness. I have four deaf children in my classroom. I have taught a couple dozen others, and I have countless friends and acquaintances in multiple states who are d/Deaf, some of whom lost their hearing due to complications from meningitis, the measles, or another illness. I can imagine that many of them would be offended at the thought that their identity is terrifying.

As we all shout past each other, while kids are getting sick and doctors are getting click-bait famous for touting the purity of their own brood, the words we choose to use speak volumes about our underlying assumptions. And what we’re saying is this: it is your fault. The Dr. Wolfsons of the world say it bluntly when they say some children “shouldn’t be going out into society.” The supermarket busy-bodies say it when they publicly shame parents of children with disabilities. Venture capitalists say it when they proclaim that “Down syndrome is hell on earth” during an interview and it goes unchallenged.

It is your fault. We say it when we give the side-eye to someone with “special needs” in a public space who we think is drawing too much attention to themselves. When we roll our eyes at a child throwing a tantrum in the store, without taking into account what else may be going on. When we wonder why someone needs to be out in the community instead of in a special place for people like that (a store clerk recently said that to a friend of mine about one of her clients, thinking the client was her mother).

Children are not separated into categories of pure/impure. Parents are doing the best they can. The disability is not their fault. A child with a disability is as wonderful, and frustrating, and rewarding, and loved and human as a child who does not have a disability, and we’d do well to mind our rhetoric, because they are all listening.

How Deaf is she??

How deaf is she?
How much can he talk?
Is she, like, DEAF-deaf?
Oh, so she’s not like, you know, full deaf.
So she’s handicapped too?

Those are things I hear far more often than I would like. My students can usually tell when someone is asking a question like this. For one, most of my students are not “full deaf,” and so they occasionally overhear conversations. Also, my students are all watchers. They have to be. They miss out on a lot of incidental information with their levels of hearing loss, so they are hyper-vigilant when it comes to visual information. If they see adults speaking in hushed tones, they assume the adults are talking about them. When visitors come to the classroom and pepper me with questions, my kids assume the questions are about them. To be honest, it’s a safe assumption.

I answer these questions carefully. And transparently. I sign. I use careful phrasing. Elsa uses hearing aids and prefers to use sign and speech. Taz uses a CI and depends heavily on sign. TLK is trilingual, and he uses whichever modality best fits the situation; however, he is always conscientious of how his peers communicate. When the visitors realize I am going to include my students in the conversation, the questions become less intrusive.* But let’s face it: it’s really rude to talk about people in front of them. Even if I’m phrasing carefully and making sure the students are aware of the conversation, I should be inviting them in to the conversation.

I work at a state school for the deaf and blind; students have to meet specific requirements to qualify for enrollment, and their home district must refer them to us. We are a public school, though, even though we are funded differently than a typical public school. I say all that to say this: we run into sticky situations where it is a battle to “prove” that a student deserves placement in our school. We have to demonstrate that a student would be best served by a specialized program, that they would benefit from a visual environment, sign language, and deaf peers. At the end of the day, we serve kids based on their needs rather than the severity of their diagnosis.

It gets old.

One of my students is self-conscious about her voice. She only uses it with certain people. A staff member who is only on campus part time overheard her say something to me one day and came rushing back in to my room. She talks?? I’ve never heard her speak! Say something! Tell me something! My student looked at me for guidance; I’m the one that makes the room safe, in her eyes. I explained that she uses her voice in some situations when she feels comfortable, but if she’s put on the spot she gets nervous. I wanted to say, Really? She’s not your party monkey! Alas, professionalism prevailed. And my student offered a confident, See you later!

My students don’t have to “prove” their disability. Yet. Right now, the grown-ups take care of that. We handle the Medicaid, the IEPs, the audiograms. They get to be kids. Sometimes they help me type the email or fill out the form to request an interpreter for a special event, but even that is pretty insulated–we have five of them on staff who are certified and vetted and familiar with all the kids. And the interpreters are always there, on time, prepared, ready to go.

The real world is a much harsher place. There will always be bureaucratic procedures that require them to prove their qualifications for Medicaid, SSI, Vocational Rehabilitation, an accessible parking permit, or psycho-social rehabilitation. As though red tape and paperwork were not enough, my students have to contend with their bodies and their personhood being considered up for public spectacle and discussion. There will always be people who read that list of services and feel disgust at what is available to my students, who believe they should keep their heads down and power through because they won’t get to be independent by depending on handouts.

Demonstrating need for services is one thing (and there are issues with that process, which I will not discuss at this point). But answering questions from strangers in the grocery store who are surprised that you can read labels? Or hearing adults talking about the fact that you might lack the ability to understand your baptism or the Holy Spirit (and to actually be able to understand that they are talking about this in front of you)?

It gets old.

In a benevolent society, in a truly inclusive society that actually adheres to equitable, democratic ideals, my students should never have to answer questions from strangers about how deaf they are, why they don’t speak, or if they “really” need an interpreter at the doctor. They should never have to worry about being called out at a concert for not standing up from their wheelchair when the performer decides everyone should stand up. They should never be given the side-eye when they park in accessible parking, they should never be given a condescending look when they ask for an allergy-free menu, and they should never have to explain themselves for wearing sunglasses indoors. They shouldn’t have interviewers ask to hold their eyeballs. If you are going to ask them to prove how disabled they are, I’m going to teach them to ask you to prove how much of a jerk you aren’t.

*A group from Utah State University’s Deaf Education program visits campus each fall and visits the classroom in 20-minute blocks. As these are future teachers of the Deaf and hard-of-hearing, I always make sure they have plenty of time to ask questions about my job and about the kids. These college students sign, and I encourage them to talk to the students directly; my kids are more than thrilled to be the experts and are happy to share that they are only deaf on one side, that mom signs better than she used to, or that they run so hard their walker breaks at least once a week. My students are almost always more fluent signers than the college students are at this point in their undergraduate careers, which flips the power in the conversation. It’s all about power and privilege. Everything is about power and privilege. If you think it isn’t, it means you probably have the privilege.

A Number of Things Not to Say to Someone with Chronic Pain

Happy Migraine Monday.

I spent the entirety of last week with a migraine. I powered through the work day, went home and ate whatever paltry dinner I could muster, and crashed. By Thursday, I was spent. I had the foresight to write my blog posts during recess and lunch, because I knew the evening would provide no writing time. Sleep tends to take priority over writing.

My migraines ebb and flow. Sometimes I have an aura, sometimes I do not. Sometimes my eyes are photosensitive, sometimes only the right one functions correctly. All of them have this in common: They diminish my ability to function at full steam. And unless I say something, they remain invisible to all but those who are closest to me: my students, my closest colleagues, and my dearest friends.

Sometimes the facade cracks, and someone else sees a brief glimpse of how hard I’m working to keep going. The secondary language arts teacher in the Blind/Visually Impaired department saw me pause to take a collecting breath before Romeo and Juliet practice on Thursday and gasped. How do you function like that?? I told her I just keep moving. If I stop moving, inertia takes over. As long as I don’t stop, I don’t have to think about it.

Thursday night, when I finally stopped, inertia took over. If anyone is wondering how long I sleep after a week of working with a migraine, the short answer is “18 hours.” The long answer is “18 hours, only waking once to text my boss and my carpool to tell them that the sun (not having risen) was already too bright and I was staying under the covers. I missed the only Friday I was supposed to work this month.

I used to be punctual. I used to follow through on plans and commitments, eagerly volunteering for committees and extra duties at work and church. I helped build a roller derby league as the president, spending every weekend stomping through town for sponsors and practice spaces and new skaters; I haven’t done a thing in a year. I just can’t. Every plan I make now has a footnote: plans may be canceled or altered with little to no prior notice because blood vessels are fickle. 

The thing about migraines is that the only people who understand them are neurologists and other people who have them. They aren’t just headaches and more than fibromyalgia is just some aches and pains. These are debilitating conditions.

A wheelchair user shouldn’t have to apologize for a building’s barely-meets-ADA accessibility if she is late for a meeting. A deaf patient should not have to apologize that the interpreter provided for his appointment is late, unprepared, or otherwise not up to the task of providing the services needed at a medical appointment.

I am tired of apologizing for my blood vessels.

This brings me back to Friday’s text messages, and, really, every text message or email I’ve had to send and conversation I’ve had to cancel plans due to a migraine. As I mentioned last week, my auditory processing takes a huge hit when I have a migraine. And my anxiety spikes. Phone calls have been one of my anxiety triggers since middle school, and the added strain of slow processing does nothing to help that situation. Text messages are what keep me tethered to the “normal” world.

In the spirit of Everyday Feminism’s 7 Things to Avoid Saying to Pregnant People and 7 Racially Coded Phrases That Everyone Needs to Stop Saying About Black People, (which are among the very few listicles that actually teach me something!) I give you my list:

A Number of Things People Need to Stop Saying to Migraineurs (and probably to other people who have chronic pain)

1. Oh, it’s too bad you’re canceling, because you’re missing [blank].

I want to throw my phone when I get this message. I’ve already cringed my way through the screen light assaulting my retinas to send you my cancellation. Chances are I already know what I’m missing. And, frankly, I’m hyper-aware of what I am missing. The collaboration time with my colleagues? Coffee with a friend I haven’t seen in a month? You can bet I’m as disappointed as you are. You don’t have to point out how disappointed I should be. This has been going on for over a year now, I’m well aware of how much it sucks.

Alternative: I’m sorry to hear that. I hope you are on your feet soon. Or just a Thanks for letting me know.

2. You look like hell.

Yes, I know. I feel like it, too. To be honest, coming from the right person, I don’t mind hearing this. It means that someone knows how hard I’m trying to power through the day. But other times, it means I’m not faking it as well as I thought I was, which just makes me sad. Let me have my illusion sometimes, k?

Alternative: Can I get you some coffee?

 3. You look a lot better than yesterday!

Really? Geez, I must have looked awful yesterday.

Alternative: Can I get you some coffee?

4. Have you tried [blank] for treatment?

Unless you are my primary physician, my neurologist, or a fellow migraineur, your suggestion might make me laugh out loud. It’s not that I’m trying to be rude. It’s just that when I’ve been to the urgent care clinic to get shots of painkillers in my hips and it still takes 4 days for the migraine to subside, your nutritional shake sounds a little silly in comparison. In church last week, there was a group of us discussing the different antidepressants we’ve tried over the last decade, our dosages, the side effects we’ve had, what works best about them. It is a conversation that would be completely foreign to someone who has never experienced a life with depression. And if someone had joined our conversation and said, “Well, I read that if you just eat more bananas, it really helps with the winter blues,” we probably would have stared at that person with our jaws slightly agape. Not even on the same playing field. That’s how I feel when someone suggests putting a cottonball full of lavender on my windowsill.

Also, migraines already rule my life; I don’t want every conversation to be about my new antiepileptic drug. And once you ask me, I’ll just keep rambling and I’ll probably tell you about how the migraines affect my IBS, too. So before you ask, make sure you actually want to know about my treatment. And then think about the fact that some migraine patients have menstrual migraines, and then ask yourself if you really want to insert yourself into such a personal conversation between me and my doctor.

Alternative: Seriously, if you are really curious about my treatment, ask yourself why you want to know. I’m usually an open book. That doesn’t mean you want to read it. You’re better off just giving me some coffee.

5. Have you tried a detox?

Yes, I already pooped today. Next.

6. [Missing meetings, losing your voice, doctor’s appointments, etc.] is really impacting your job performance. You need to leave your home life at home.

I know. We know. When I was going through my divorce, I felt scrutinized when I had an off week. And I admit I had some pretty off weeks. What I didn’t know was that through my work’s insurance, I could have had five free counseling or therapy sessions that could have helped in the aftermath and reorganization of my life after my husband and I split up. That, right there, was the perfect alternative. Those same sessions could help with the depression that has resurfaced as a result of these migraines.

Other Alternatives: anything that involves talking WITH instead of talking TO is a better choice, in my book. Because we’re adults, right?

7. Well, at least it’s not [blank].

No. Just no. You do not get to use my condition to reinforce your concept of disability hierarchies. When my friend James was in end-stage kidney disease and on dialysis, people would attempt to console him with such platitudes. I have been on the receiving end of this “encouragement” as well. My migraines are debilitating. Full stop. Food allergies and Celiac disease are life altering. Full stop. Don’t compare us. Don’t rank us. Just don’t. It’s not a comfort. It’s ableist and it’s damaging.

In summary, don’t be a jerk. If you don’t know what to say, ask me how I’m doing today. Ask me if I need anything. And if all else fails, bring me coffee. Seriously. My neurologist said so.