Posted in Disability, disability/illness

Interview with Secular Sexuality on Sex and Disability

A few months ago, Vi La Bianca, a previous guest writer for my blog Yopp, invited me to be on her YouTube show Secular Sexuality, a show that looks at every angle of sexuality that you can think of, with an emphasis on noticing how mainstream US culture has shaped our opinions and practices around sex. I was invited specifically to discuss the intersection between sex and disability, which is a topic many people are deeply uncomfortable with. 

I wanted to share and recommend this episode because, in addition to offering a lot of very useful advice to fellow disabled people and their partners about how to engage with sex and dating, a large portion of the show is devoted to discussing important issues that disabled people face in general. 

This is not the first time I’ve been invited to an interview of this kind, and while my interviewers tend to be highly knowledgeable about activism and social justice, it always takes them by surprise just how much is happening within the disability activist community that they don’t know about. Disability rights are a severely neglected branch of social activism, even among some of the best and most thoughtful mainstream activists. 

So, if you’re looking to get a glimpse into this world of issues as well as a lot of information specifically about sex/dating and disability, I highly recommend watching this really fun and educational episode! The video is one hour and thirty-six minutes long, including two live callers who share their experiences of how disability affects their sex lives. Not Safe for Work themes and language are also covered. 

Here’s a brief summary of the topics we cover: 

General discussion of disability

  • the language used to discuss disability
  • a new modern framing of disabled people (covered in my recent article)
  • how we can improve the amount of access available to disabled people
  • ADA violations and the lack of input from the disabled community on accessible design
  • the intersection of being a woman in addition to being disabled/chronically ill
  • the hurdles of navigating the medical system (primarily regarding the US)
  • disability representation is fiction and media

Disability and dating/sexuality

  • the difficulties of dating while disabled
  • the issue of disclosure (”coming out”) as disabled
  • cultural resistance to the idea of disabled people having sex
  • the fetishization of disabled people
  • exploring your sexuality as a disabled person
  • communicating with your partner about how your disability will impact your sex life
  • putting your needs and physical safety first

You can watch the episode, for free, below. Enjoy!

If you are viewing this post from an email subscription, you may have to link through to the site to view this video.


Kella Hanna-Wayne

KELLA HANNA-WAYNE (Yopp!) is a member of The Zine core team and a co-host of this month’s blog series on illness and disability. Kella is a disabled, chronically/mentally ill freelance writer who is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people, and reducing oppression; and for GlutenFreeNom.Com, a resource for learning the basics of gluten-free cooking and baking. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and is forthcoming in a chapter of the book Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities. For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.

Posted in disability/illness, General Interest, Illness/life-threatening illness

Windows

A dusty, dimly lit room filled with empty space and rough wooden floor boards. Along one wall there is a series of narrow windows, that let in very little light. Photo courtesy of Chris Bair, Unsplash.

Nothing but “I can’t I can’t I can’t” is sounding in my head.

My best friend has her hand on my knee. She’s carefully offering me solutions to try to get me out of this trap. I say no to every single one. I know it looks like I don’t want to find a way out. I do. I can’t find it. I want permission to lose it, permission to stop searching for a way to function like a normal person. I don’t want to be held together. I want to split apart and lose myself in the fragmentation.

It’s like the most vulnerable part of me is exposed to the outside world and I have to protect it from even the smallest hardship because it has no armor, and if I damage it, it will never recover. It’s like every tool I’ve learned my entire life to cope with the workings of my mind, to cope with the unpredictability of other people, to cope with my tendency to give all of myself, is inaccessible. I cannot protect myself from anything. 


I hang up the phone. My event has been canceled with just a few hours of notice. I don’t know the words in my language to name the feelings in my head. Anger? Disappointment? Stress? What emotions do those words embody? Are they the ones that I have?

For some reason, I can’t tell anyone that my world is crashing down until I know what words describe my feelings. Somewhere inside me I know there was an explosion of twenty emotions contained by a vacuum but all I felt was the muffled noise that the explosion made when the bomb went off. I want to open the door to this capsule and look at the damage but I can’t find the door either. I want to peel off this band-aid. I can’t find the edge of it, even though I’m scraping my skin, hunting for it.


There are flashes of pain in my heart, and then my vision goes fuzzy as I stare at nothing. I stay like this for a minute and then resurface, the pain returning but a little diluted, and I catch my breath. I don’t remember if I was breathing while I dissociated.


I come up for air and with no warning, I’m lucid again. I feel like myself and yet I thought I was myself before. I want to connect with my boyfriend, I can feel his touch. It penetrates all the way to my core. It’s as if I haven’t seen him all day. Just an hour ago, I was pushing the words, “How was your day?” out of my mouth, as tears built up under my face, filling my cheeks and the contours of my eyes, clouding my vision, making my thoughts slow, waiting to burst out again.


A window into my writer’s brain opens for a brief moment, I manage to type out three paragraphs and then I feel the window slowly closing, my heart succumbing to numbness like a cloud that covers my connection to myself. It’s an impulse to protect myself from something I can’t quite name. I hear a distant cry of grief as my creativity, my productivity, my reason for being valuable, slips away from me once more.

A woman lies on her side on a bed, her arm under her head, staring blankly ahead of her. The view of her is partially obscured by an blurry obstacle in the foreground on either side of her. Photo courtesy of Jordan Bauer, Unsplash.

I’m fine just a little sad and I’m lying on the floor wondering why I’m a little sad but I’m fine and then it hits me like a sack of bricks dropping onto my chest that I’m not scared of abandonment I’m scared of losing access to intimacy, this precious substance, the lack of which causes me to wither and numb myself, and why am I so afraid of losing it? Don’t I know I can find it with someone else? But no, this time, I cannot dance to fill the hole in my heart, this time I cannot easily meet new people to try to date again, this time my disability hangs on my shoulders like a neon sign that says “I’M NOT WORTH YOUR TIME” and I have no way of knowing who can see the sign and who can’t. The bricks stay on my chest even as sobs explode out of me and I gasp at the pain, this new strange backward crying I’ve started doing, as if the act of pushing the pain out of my chest only makes the pain from this wound more vivid, and every breath, I cry to rid myself of the pain and then gasp again as the pain penetrates deeper. The crying stops because I have no answer to the question, “what will I do if I lose intimacy again?” 


One month of increased anti-depressants or maybe it’s getting to the other side of the trauma or maybe it’s the most recent conversations with my boyfriend but whatever it is, I can feel the streaks of dopamine cutting through the dull molasses that so recently covered my heart every moment of the day. Rather than every task being a dead end, pointless, sad endeavor, some of them have light at the end. And then because your brain responds not just to the dopamine trigger itself but the lead up to the dopamine, I get that little bit of light earlier and earlier, like catching my breath for just a moment at the end of a devastating work out that has no benefit. I keep expecting to fall into the tank of quicksand again– where I will respond to every thought, every need with “I don’t care,” or “what’s the point”– but instead I step and there’s solid ground. My feelings swirl and collect neatly, still sharp and intense but they present themselves clearly so I can pick them up one at a time and hold them close.


Like the first day back after a wipeout flu, I’m exhilarated by how functional I am, trying to cram as many to-do’s into this stretch of motivation and energy as I can. I start to slow down and find myself scrolling through Facebook an hour after I finished my last task. Determined to teach my depression that my doing-things neurons can fire even when that cloud is consuming me, I barter with myself until I find a reward motivating enough to get me up. I wash dishes and chop some vegetables for the dinner that I will never make. I sit back down, feeling as if the flu has hit me again and it takes a moment before I realize I’m not depressed, I’m spent. 7pm and I am done for the day.


This weight in the center of my chest keeps pulling me inward. I try to interact, to connect, to think of things to talk about. What do healthy people talk about for fun? I try to predict what is expected of a person like me in a situation like this and mimic what would be done, but it’s as if I’ve never done it before. What did I use to do?

The longer I resist the pull to withdraw, the more exhausted I feel. As I give into the pull, tears come to my eyes without words to accompany them. The pain surges up and out but I am no closer to understanding it. I crumple inward, angry at my inability to understand my own mess.

I read my writing from three months ago and stare and stare at the clearly illustrated points and organized structure. How was my mind ever free enough to write this?


I have a doctor’s appointment to follow up on my medication change. I rate my symptoms on a scale of 0-3, trying to accurately represent what I feel and also accurately represent the difference between the last time I filled out this sheet and now. Last time, I counted out my total, decided it was too high, crossed out several of the numbers, and replaced them with lower ones. I struggle to describe to my doctor the paradox of grief and emotional pain so deep that I can barely function, and yet somehow I am not in danger of hurting myself or neglecting basic needs. Each day I am simultaneously devastated and okay. It’s as if I’m sitting at the edge of a pool and I’m choosing to throw myself in, let myself sink to the bottom, struggle and writhe, and then float back up, out of breath and exhausted. My doctor tells me that it’s okay to call my weird childhood a source of trauma. I think she thinks I’m a person who undermines my own trauma. I am. But not like that.


I’m cleaning my room for the first time in I don’t know how long. My desk became a storage unit, items without homes stacking higher and higher. I start at the top and place one thing at a time in the recycling, the trash, or the place it belongs. The stacks get a little smaller and then my hand falls on… A bar of chocolate? From who knows how many weeks ago, my favorite type of chocolate was sitting untouched at the bottom of a pile of junk. I have no memory of buying it or putting it here.

It’s another reminder of how far away I am from healthy me. I know she’ll come back but I have no sense of how long she’ll be gone. It feels strange having concrete evidence that, just a few months ago, I was clear-headed enough to buy myself a treat for later in the week. I was not constantly inundated with feelings that halt my body until they’ve moved through me, wrecking me in the process, that I was not always resisting the pull of numbness, of something brainless to take the edge off this hurt. I don’t know what the path back to health looks like. I just know I’ve done it before.


A deer crouches, staring into the camera, tail tucked, frightened and cautious, surrounded by dark green foliage. Photo courtesy of Carly Rae Hobbins, Unsplash.

I slowly open a tiny door and peek inside. A warm vulnerable feeling fills me, like watching a fawn and holding your breath hoping it will not startle and run away. The feeling is so delicate and precious that I tell no one I have it. I cannot step inside the door for more than a minute at a time, the fear of self-expression is too powerful. 

When I interact with other people, I close myself off and pull away so that they won’t startle the fawn either. Even when I want to connect, my door inside closes and so does the rest of me, my body language turning away as if I want to avoid all contact even when part of me wants to show my new discovery so badly. 

But I watch as unwittingly, words flow through my fingertips, I have something to say, I think something important and moving and I express it, without the usual wall of doubt surrounding me. If I ask myself to write in a formal document, the terror returns, rising up in my throat as if asking myself to write a paragraph is as bad as asking myself to tell my therapist I no longer want to see her. But I did that, so maybe I can do this too. 

—Kella Hanna-Wayne ©2018 


Originally published on yoppvoice.com as “Windows: Snippets from a Mind Struggling with PTSD, Anxiety, and Depression” on June 16th, 2018.

Posted in Disability, disability/illness, General Interest, Illness/life-threatening illness

Redefining Disability: An Identity of Adaptation and Creativity

Before 2014, I knew very little about the concept of disability or disability activism. Believing myself to be able-bodied, I had been protected from the whole world of problems disabled people face as a result of a society that isn’t built for them

My journey to identifying as a disabled person was anything but clear cut. Before the injury that flipped my life upside-down, I thought that my pre-existing health issues were within the range of normality. And once it was discovered my sudden uptick in pain was injury-based, I had no reason to believe that my injury wouldn’t heal in a timely matter. Most of our exposure to the world of disability tends to be what we see in TV and movies, and every fictional character I knew of that ever contracted a serious illness or sustained a severe injury always overcame their obstacles and recovered 100% (or they died). The idea that your body could be physically impacted in such a way that you may never fully recover or the recovery takes place over 5-10 years, never occurred to me. I assumed my issue was temporary. 

And when I did eventually begin playing with the word “disabled” to describe myself, I received a lot of resistance from the abled people surrounding me. They would say things like, “Do you really see yourself that way?” or “But you’re so much MORE than that,” as if calling myself disabled was inherently a more self-limiting description than calling myself a brunette. I was discouraged from claiming a label that ultimately became a key aspect of my identity.

The truth is, I had absorbed many of the mainstream beliefs about disability that all of us learn, and I had to find out the hard way that they were untrue. These misconceptions inhibited my ability to accurately describe myself, to be proud of who and what I am, and they actually prevented me from accessing the help I needed. 

Expanding Your
Understanding of Disability

One of the biggest misconceptions about disability that I was implicitly taught is that when you become Disabled, you are entered into the Official Disabled Club and it will be clear and obvious to everyone around you that you are a Disabled Person. (Spoiler alert: This does not happen.)

Our culture sees disability as something concrete and binary which is weird because bodies are incredibly complicated. Pretty much any function of a human body can manifest with a variation that’s extreme enough to be disabling, either due to the severity of the dysfunction or due to the symptoms’ incompatibility with society’s expectations around how people should move through the world. 

Just one presentation of disability can actually represent a huge range of levels and types of ability. For example, there are literally hundreds of reasons you could require a wheelchair: pain, muscle weakness, lack of bone density, fatigue, unstable blood pressure, dizziness, paralysis, amputations, temporary injuries, recovery from surgery, the list goes on. Some people need a wheelchair for those issues 100% of the time, other people need one only when their symptoms are severe and can walk the rest of the time, and yet other people only need them when they’d otherwise be required to stand for more than an hour at a time. “Wheelchair-user,” which is just one disability in society’s eyes, is actually hundreds of different disabilities. 

A young person wearing blue jeans and blue and white polkadot sneakers walks casually beside a person sitting in a wheel chair, holding a cane, as if they are enjoying an afternoon together outside in the sun. Photo courtesy of klimkin, Pixabay.

But our binary ideas about how disability presents itself means we struggle to identify disabilities accurately. Ambulatory wheelchair users– people who use wheelchairs but are able to walk some of the time– are regularly accused of faking because instead of recognizing the wide range of conditions that wheelchairs are used to accommodate, many people have the misconception that either you need a wheelchair 100% of the time or you never need it. Abled people expect disability to present in a very specific way and anything that varies from that 2-dimensional description is treated with dismissal. 

Overall, our definition of what “counts” as a disability, is very limiting and we’re quick to categorize conditions we don’t understand as not “real” disabilities. Conditions like chronic anxiety or ADHD are rarely thought of in these terms, and even people with visible physical disabilities struggle with being recognized as disabled enough

Because what we’re really categorizing is not disability at all, but whether it’s okay for someone to ask to be accommodated. “You’re not really disabled” almost always means, “You don’t actually need help with what you’re doing.” If culturally speaking the general consensus is that you should be able to cope with a physical/cognitive issue without help, then we’re discouraged from seeking it and shamed for “pretending” to be disabled in order to receive special treatment. 

The result is that many versions of disability are hidden from mainstream awareness, and millions of people that would live easier and happier lives if they were given accommodations or life adjustments are forced to go through unnecessary hardship.

You Don’t Have to Do
Things the Hard Way

Prior to disability, I was already in the habit of downplaying my needs, and given this cultural backdrop with which we view disability, I was very slow to embrace the word “disabled” and the implied necessity for assistance that went with it. 

At the time, the idea that if at all possible, you should do something without help, was such a normal part of the society around me that I didn’t recognize how illogical it was. While there are certain forms of access like accessible parking spots or restrooms where there is a limit to how many of those resources are available, there are so many forms of assistance that are not limited. 

But we force this contrived scarcity mindset to all sorts of things: It took me weeks of suffering through the pain of walking on a recently-injured ankle before I realized there was no reason I shouldn’t ask for a ride or take the bus to work. No amount of saying “It’s only five blocks!” would change how resource costly it was for me to walk or how much pain I was spared by getting a ride. 

Joining the disability community opened my eyes to a world of possibilities for adapting your life structure to fit your own needs. Even though I originally resisted joining the community, once I recognized that my set of physical conditions did count as a disability, accepting the identity actually validated that yes, I really did need help, I really did need adjustments to my daily life that were counter to the average American’s lifestyle in order to be the healthiest version of myself. Saying I was “disabled” became a way to make those needs more real to myself.

How Are We Defining Disability?

There is an underlying problem behind all these cultural misconceptions about disability, and it’s rooted in how we define what it means to be disabled. 

The primary definition we have in our culture is called the medical model of disability. In the medical model, a disability is defined by a defect, a flaw, an abnormality, a lack of something, that interferes with your ability to function in everyday life. In the medical model, a disabled body has something wrong that sets it apart from the default body, which is a healthy abled body. (Note that “body” in this context also includes cognitive function and mental health.) 

According to this model, if I call myself disabled, I am saying that there is something wrong with my body. I’m saying that my body is fundamentally lacking in something that normal bodies have. And it’s extraordinarily easy in our culture that moralizes health to conflate, “something is wrong with my body,” with “something is wrong with me.” 

Introducing the Social Model

To combat this stigma, the disabled community created a new model: The social model of disability essentially says that disability is not caused by a problem with your body, but an incompatibility between the way your body works and the way society is structured. If disability is defined by the level of difficulty you have navigating the world around you, it stands to reason that the nature of that world is going to impact the severity of that difficulty. 

The social model is all about identifying the external structures that are making something difficult for a given person and changing and adapting them so that the level of difficulty decreases or even disappears. For example, the popularity and ease of access to eye-glasses and contact lenses means that we can effectively remove a vision impairment that 200 years ago would have been debilitating. 

(Note: There are varying opinions on whether it’s best to use a combination of the social and medical model, or to define the social model not as eliminating disability but as accommodating disability to the fullest extent that is possible for a given condition or environment.) 

A woman riding a red motorized scooter has to duck down uncomfortably low to get under a wooden plank blocking the dirt path unnecessarily. Photo courtesy of makeitsomarketing, Pixabay.

But many disabilities require a more in-depth look at our society’s structure to achieve accommodation: I live in a society where the default expectation is that I need to work for money so that I can pay my basic expenses, and on average, it will require 35-40 hours of work a week to make enough money to pay those expenses (This summary is extremely oversimplified and outright incorrect in many cases, but this is the general belief about what’s normal in our society.) The work I do is also expected to be at a location other than where I live and in most cases, includes doing a handful of the same tasks over and over again. 

None of these constructs are inherent to human society, they’re just what’s normal for this time period and the part of the world I live in. 

But the nature of my disability means that I can work a maximum of 20 hours per week, my expenses are higher than average thanks to additional healthcare costs, leaving the house is particularly resource-costly, and repetitive tasks fatigue my muscles very quickly. If I were to work a “normal” job and pay my bills like a “normal” person, my pain and likelihood of injury would be so high, I would need significantly more assistance, and my health issues would compound on one another. My disability would get worse.

However, if I’m allowed to work part-time, at my own pace, from home, doing a variety of tasks that use my body in different ways, my health and productivity both improve. My pain decreases, I have more energy, and I’m overall a happier person. I am significantly less disabled when my life structure is compatible with my physical needs.  

The social model takes the focus away from trying to fix a disability and instead puts it on improving a disabled person’s quality of life. For me, it dramatically changed my understanding of what a disability is and how I define it: A disability is anything in your mind and/or body that inhibits or prevents you from engaging with basic aspects of society– work, relationships, hobbies, meeting survival-based needs– as a result of a society structured around the habits of the majority. 

Using the social model also puts focus on one of the most important aspects of the identity of being a disabled person: the virtue of adaptation. 

An Identity
of Adaptation and Creativity

If you join the disability community on twitter, you’ll notice the majority of folks there will include “disabled” or the blue “accessible” icon in their bio. But more than once I’ve seen abled people object to this: “You base your identity on your disability? What a depressing outlook on life!” 

If you’ve only learned the medical model, letting your disability define you sounds like you’re saying, “There’s something inherently wrong with me,” or “My life is filled with things I can’t do.” From that perspective, disability as an identity is depressing. 

But to be a disabled person means to navigate a world that was not built for you. You’re playing the game on hard: extra obstacles, fewer power-ups. You are constantly planning for contingencies, advocating for your basic needs to be met, assessing and adapting your choices in the moment when the available pre-set options are not options you can use. 

Being disabled means looking at your environment and being able to pull back the veil of assumptions about what it means to live a “normal life” and challenge them. Being disabled means rejecting the default and saying, What if we did things a different way? 

If I visit a fellow disabled friend’s house, I can count on them to anticipate my needs and ask the right questions to make sure that I am happy and comfortable, even though demands on their resources on average will be higher than the demands on an abled person. An abled friend, other the other hand, usually requires a crash-course on how I need to be accommodated and what I can and can’t do before they can effectively be my host (and they likely won’t initiate this crash-course, which means I have to do it pro-actively). 

A group of friends hang out and take selfies at a bar while drinking beer. They have a variety of skintones and forms of disability, both visible and invisible. Photo courtesy of Elevate, Unsplash

It was the disability community that taught me to adapt my life to optimize it for my needs, to prioritize my own well being over the social expectation of what a life should look like. My disability impacts my career choice, my relationships, my hobbies, my activism, my relationship with myself, my understanding of the world around me. My disability is an integral part of my identity and that is not a sad thing in any way. 

Because being disabled involves an exceptional level of creativity, innovation, adaptation, decisiveness, solution-seeking, thinking one step ahead, and changing the status quo. When I say that disability is part of my identity, I’m saying that I’m part of a group that shares this unique set of skills and this specific outlook on life. 

With such an incredible set of qualities, why wouldn’t I want to identify with the community responsible for teaching me that my needs will always be worthy of accommodation? 

—Kella Hanna-Wayne ©2020


Kella Hanna-Wayne

Kella Hanna-Wayne is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people and reducing oppression. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and her work is forthcoming in a chapter of the book “Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities.” For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.


This article was cross-posted on yoppvoice.com on February 8th, 2020.

Posted in Disability, disability/illness, General Interest, Illness/life-threatening illness

Pugliese

(poo-glee-ay-zee)

my grief
in listening to music that I cannot dance to
is just the feeling of my heart leaving my body
as it soars across the dance floor
begging my feet to follow

it is the same pleasurable agony
of missing the one you love,
my brain places each step
and says oh!
wouldn’t it feel good to move this way?
naively seeking a reunion
that will never arrive

but my affair
with listening to Pugliese,
the beast of the tango world
that dancers study for years to master,
is like having my body hurled across the room
against the walls
against the ceiling

it screams why
aren’t
you
dancing

you
will never be enough

you

are

not

worthy

And yet I return to it
to be thrown again
and again and again

a fractured soul
with a battered body
returning to her abusive lover

how I long for the way Pugliese hurts me

—Kella Hanna-Wayne ©2020

Posted in disability/illness, General Interest

Could You Please, Just, Cease to Be?

Earlier this week, as I was crossing the parking lot toward a grocery store, I noticed a man sitting on a motorcycle near the accessible parking spots– the spots closest to the door that are reserved for disabled people. I realized he was parked in one of the striped spaces between the accessible spots.

For a long time, I didn’t know what those striped areas were for. They provide wheelchair users the space necessary to lower their ramp or lift out of their car so they can get in and out. I also learned that many people who are unaware of their purpose, block these areas, thereby preventing the car next to them from loading wheelchairs/walkers on or off. An obstacle in the striped area means that disabled people may not be able to get in or out of their car. 

I kept staring at the motorcycle, assessing, tempted to just go right up to the man and tell him to move but I’ve never told someone off for blocking disability parking before.

I had recently read a story about a disabled woman who was making a run to the grocery store during the busy holiday season, only to discover that the entire row of legally-mandated accessible parking spots was blocked by a truck selling Christmas trees. The few spots that were left were being used by customers loading their trees into their cars, preventing every person who actually needed those spots from using them.

Thankfully, the disabled woman managed to swipe a spot. If she hadn’t, she would have had to skip shopping or wait in the car while her husband and daughter shopped for her. But as soon as she left her car, she was forced to endure a shouting match with a customer who wanted to load her Christmas tree. “She stole my spot!” yelled the able-bodied woman who had 100 other parking spots to choose from.

The disabled woman reported the problem to store management, received a sincere apology, but half an hour later when they left the store, the truck was still there. The people in charge of enforcing the rules had not bothered to do so. Who knows how many disabled customers came and left, unable to shop because they had no place to park.

A woman in a wheel chair is blocked from getting into her car, due to another car parking over the striped lines of the accessible spot. Photo courtesy of Rachelle Chapman, Facebook.

I don’t think able-bodied people understand just how non-negotiable disabilities are. Some of us can walk, some of us can walk short distances. But when we cannot walk, or if we can only walk a maximum of 15 feet, that limit is not something we can push against. We can’t bargain with it. We can’t make it go away. A deaf person cannot negotiate with their level of hearing. A blind person cannot adjust their level of visual impairment.  

Those of us who do have the flexibility to walk longer distances will often leave the accessible spots for someone else on the days that we don’t need them, precisely because we understand that others need them more. We don’t tend to ask for more than we need or round up our limitations for convenience. We play down our needs as often as possible.

I pondered over the story about the disabled woman and the christmas trees as I went inside the grocery store, trying to decide what I wanted to do about the blocked accessible spot. I imagined what it would be like to arrive for a normal boring shopping trip only to discover that you simply can’t get out of your car. I decided to wait a minute and if he was still there when I went back to check, I’d find a staff member and tell them to handle it.

And then I’d check back again to make sure the staff member had followed through.

For some reason, getting people to understand that people with disabilities need accommodation isn’t as simple as telling them. When a person whose job it is to serve customers, refuses to help or offers only verbal support with no action behind it, it reminds us that able-bodied customers will always be prioritized over disabled ones.   

After about five minutes, I went and checked on the motorcycle. Thankfully it was gone.

But the awful feeling that crept over me when I saw it didn’t leave.

A man sits in his wheelchair at the bottom of a flight of stairs, looking exasperated at the lack of ramp. Photo courtesy of Photographee.eu, Adobe.

When someone blocks the wheelchair loading zones, when someone without a disability sticker uses a parking spot, when businesses render the accessible parking spots un-useable or provide a disproportionately small number of them, it sends a very clear message: If you cannot use a normal parking spot, we are fine with the idea that you may not be able to buy food or enter our building. We are fine with pretending you don’t exist. 

What if I hadn’t been there? Would anyone have noticed that there was a problem? In all likelihood, I’ve walked past the same situation multiple times and never thought twice about it. How often does this problem go completely unaddressed?

I don’t have a disability parking pass because I’m now strong enough to walk the extra distance without issue the vast majority of the time so in some ways, this issue doesn’t directly affect me. But the cultural attitude this problem is rooted in, does affect me.


When I worked as a cashier, customers would often place their money on the counter next to the credit card machine– outside of my reach. I told one man that I needed help with the money because I had trouble bending over. He snapped, “You shouldn’t be working here if you can’t bend over.”

Never mind that it would actually be illegal to fire me from a job that’s 99% customer service skills and multitasking, and only 1% bending-over. I heard this attitude from customers repeatedly whenever I asked for help: I shouldn’t be working there, it didn’t make sense that I was working there if I was disabled, I should really find another job. No one offered me a job of course, and no one was interested in hearing that I’d still need accommodation and assistance at a different job. I’d still be disabled.

It was that same message: You shouldn’t be here. Can you just not be here? I’m not interested in the mechanics of how you do that. Can you just stop? Can you just resolve my cognitive dissonance about disabled people lacking the accommodation they need to work comfortably or live without being required to work and let me pretend that’s not an issue?

As with any form of oppression, avoiding ableism isn’t as simple as avoiding the specific people that treat you badly. These messages surround us and make up the structure that we live in: People with service dogs kicked out of public spaces or denied access to public transportation or even private taxis; large sections of well-populated cities that are not wheelchair accessible; people with invisible disabilities harassed for using accessible parking spots because they don’t look like they need one; staff members denying disability assistance in airports because the customer doesn’t look disabled; denying access to life saving health care based on pre-existing conditions; youtube videos about rare illnesses and disabilities filled with comments that say, “Let them die and put them out of their misery,” even when the sick person was capable of communicating and said nothing about being unhappy with their lives.

If your disability prevents you from working, the average length of time it takes to be approved for disability assistance in the United States is two years. The first time you apply is almost always denied, as standard practice, regardless of your circumstances. You cannot work or bring in income during the time you’re waiting for your application, or you will be denied. And if you’re lucky enough to be approved, the amount you receive will not be enough to live on. If you make income from any additional resources or if you get married, your stipend can be revoked or reduced. 

How do you survive in such a system? How can you not absorb that you should not exist?

Snow obscures a disability parking spot, making it almost unidentifiable. Photo courtesy of jbom411, Pixabay

Worst of all, these decisions are made and enforced by able-bodied people who just don’t listen when we say, “Actually, that’s not how this works.” We don’t have the power to set the record straight on what disabilities “look like,” or what resources we should have access to, or what real accessibility is. We just have to hope and pray and be thankful for what we get.

These ideas seep into you, affect your decisions, your opinions of yourself. You may not even realize they are there.


About a year after I became disabled, I noticed that something in my romantic relationship of four years had changed. My boyfriend felt less like a life partner and more like a companion.There were no changes in his behavior that were causing this shift. He wasn’t moving away from me. I was moving away from him.

Once it became clear that my disability was not temporary, I found myself believing that I could no longer be a good life partner for my boyfriend. My life was filled with so much maintenance, boring medical talk, careful balancing of treatments and resources, and always always new limitations. I couldn’t offer excitement or spontaneity or passion like I used to be able to. Why would he choose boring and limited? Why would he want me if I was disabled? Why would anyone?

While I managed to work through these feelings in this particular instance, the central issues beneath them popped up again. When I injured my arm, it took an incredible amount of courage to ask for the help I needed with cooking, cleaning, and other chores.

But even in the face of so many friends willing to help me, my self-esteem plummeted. I couldn’t use my arm or hand at all and the extra energy my body was spending on healing and reacting to pain meant that my focus was shot too. No cooking or baking projects, I could only type on my laptop for short periods of time; no writing, no event planning, no DJing, no any of the things I was good at. I could only read articles on my laptop, watch TV, and spend time with whoever was available to come to my house.

I found myself confronting some old ideas about myself: What value do I have if I can contribute nothing? Why would people want to be around me when all I do is take from them and I don’t give back? I have always needed to be giving 50% more than I take, and if the amount I take gets too high, I’m tortured with guilt. What was there to love about me if I didn’t have my talents to hide behind? What would happen to me if I spent large chunks of my life in this position? 

I had these limiting beliefs about myself long before I became disabled, but the thoughts in my head were now reinforced, not just by me, but by society’s opinions of my disabled body.

At its center, I think the purpose of any kind of oppression is to minimize the existence of people like you. Whether that is by actively killing you, letting you die through neglect or lack of resources, by conceptually obliterating you, by making even you question whether you actually exist or not, or by punishing you for every moment you do exist. Oppression of any group seems to boil down to, “Everything that you’re doing right now, could you please not? Could you please just, cease to be?”

© 2020, Kella Hanna-Wayne

Originally published on yoppvoice.com as “What Ableism Feels Like” on Jan. 14th, 2018

KELLA HANNA-WAYNE (Yopp), one of our newest Zine team members and a partner in our upcoming February series on illness and disability, is a disabled, chronically/mentally ill freelance writer who is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people, and reducing oppression; and for GlutenFreeNom.Com, a resource for learning the basics of gluten-free cooking and baking. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and is forthcoming in a chapter of the book Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities. For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.

Posted in poem, poetry

Sick Leave

when everything good leaves my body

my loves, my likes, my have done/s, my will do/s

when my arms are limp, my mind full of a buzzing and humming

 

when my friends are whisked away into the whirlwind of their lives

and I am the only inactive thing

I am left with your voice chipping away at my mind

 

it’s as if I had been wearing all my accomplishments like a robe

holding them close to my body 

covering the inadequacy underneath

 

when my body grinds to a halt 

and I am stripped of every ounce of my value

underneath it all, you are still here

red and raw on my naked skin

 

when the pain of my throbbing joints flood me 

my whole self circling around and around

I try to imagine that the grey aches and sharp flashes

are something beautiful

 

tonight I ask myself

what does my pain look like?

I shut my eyes and see the night sky filled with stars

 

I am the black expanse of unending nothingness

my pain appears as a million balls of light 

 

the shape of me is only visible 

by following the path of my pain

© 2020, Kella Hanna-Wayne

KELLA HANNA-WAYNE (Yopp), one of our newest Zine team members and a partner in our upcoming February series on illness and disability, is a disabled, chronically/mentally ill freelance writer who is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people, and reducing oppression; and for GlutenFreeNom.Com, a resource for learning the basics of gluten-free cooking and baking. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and is forthcoming in a chapter of the book Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities. For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.