I became disabled late in life. While the genetic condition that led to my inevitable disability was always present, the symptoms didn’t become disabling until 2014, at which point I had to completely restructure my life and my mental understanding of what to expect of my body. But in addition to the symptoms and the new restrictions, I was also introduced to the world of ableism– a society-wide set of patterns that had been previously invisible to me. Ableism had been happening all around me but it wasn’t until I was disabled that I had any idea what ableism feels like.
CN: institutional, social, and internalized ableism
This was not the blog post I had planned to write this week.
Earlier this week, as I was crossing the parking lot toward a grocery store, I noticed a man sitting on a motorcycle. It caught my attention because he was parked near the disability parking spots. I looked again and realized he was parking over one of the striped spaces between the disability spots.
Only recently, I learned what those striped areas are for. They provide customers with wheelchairs space to lower their ramp or lift out of their car so that they can enter and exit the car in their chair. I also learned that it’s a regular occurrence for people, sometimes people with disabilities, to block these areas. When the area is blocked, the car next to it cannot load the wheelchair on or off, therefore the person is prevented from leaving the car or prevented from getting back in.
I kept staring at the motorcycle, assessing, tempted to just go right up to the man and tell him to move. He was sitting on his bike, talking with someone. I couldn’t tell if he was leaving or just arriving. Either way, I’ve never told someone off for blocking disability parking before. I was nervous.
I went inside and thought hard about what I wanted to do. What if someone finished their shopping and couldn’t get back in their car? What if the current car pulled out and the next one that came couldn’t unload their chair? What if there weren’t any other disability spots available? I imagined what it would be like to arrive for normal boring shopping trip only to discover you simply cannot do that.
I decided to wait a minute, to see if the man was staying or leaving since he still had his helmet on when I saw him. 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.
I recently read a story about a disabled woman making an important run to the grocery store during the busy holiday season, only to discover that the entire row of disability parking spots was blocked by a truck selling Christmas trees. The few spots that were left were being used by customers buying trees, preventing every person who actually needed those spots from using them.
Thankfully, she manages to swipe a spot. If she hadn’t, she would have had to skip shopping or wait in the car. But before she reached the store, she was forced to endure a shouting match with a customer who wanted to load their Christmas tree. “She stole my spot!” yelled the able-bodied woman who had 50 times more parking spots available to them than the disabled woman.
The disabled woman and her husband went into the store, reported the problem to management, received a sincere apology, but half an hour later when they left the store, the truck was still there. No one had made them move. The people in charge of enforcing the rules in place 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.
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. It’s like being presented with a brick wall. Many times, those of us who do have the flexibility to walk longer distances make sure to avoid using disability spots 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.
After about five minutes, I went and checked on the motorcycle. Thankfully it was gone.
But the awful feeling I had when I saw it didn’t leave.
When someone blocks the wheelchair loading zones, when someone without a disability sticker uses a disability parking spot, when businesses render the disability parking spots un-useable or provide a disproportionately small number of them, it sends a very clear message: If you cannot get to the store from a normal parking spot, you shouldn’t be allowed to go grocery shopping. We are fine with preventing you from buying food. We are fine with pretending you don’t exist. Maybe, if you hear these messages often enough, it’ll sink in and you’ll realize that you shouldn’t exist.
I knew deep down that had I needed to report something, I could not necessarily trust the staff members to help me. For some reason, getting people to understand that people with disabilities need accommodation isn’t as simple as telling them. Able-bodied people tend not to believe us. For a stranger to dismiss your humanity is nothing new, but for a person whose job is to serve customers, to be refused help, or to offer only verbal support with no action reminds us that we’re not important. Able-bodied customers are.
And what if I hadn’t been there? Would anyone have noticed that there was a problem? I didn’t start noticing that blocking wheelchair loading zones was a regular issue until very recently. In all likelihood, I’ve walked past the same situation multiple times and never thought twice about it. Most people don’t notice when it happens. How often does this problem go completely unaddressed? Why are we so invisible?
These days, mobility isn’t much of a problem for me. I can walk for up to 15 minutes, provided I don’t have anything else especially physical to do that day, and that gets me most places I need to go. I don’t even need to be parked especially close to the entrance anymore. I don’t have a disability parking pass. In some ways, this issue doesn’t directly affect me.
But it does affect me because the problem exists as a result of a cultural attitude.
When I worked as a cashier, customers would often place their money on the counter next to the credit card machine. My arms are short and I could only reach this little counter by leaning over diagonally– a very vulnerable and sometimes painful movement for me. If the money was too far away, I’d ask customers to hand it to me. More than once, I encountered confusion and resistance. One woman was completely boggled by my refusal to just reach over and grab the money right in front of me, despite my asking repeatedly and politely to hand it to me. I finally explained that I had an injury that made the motion difficult and she loudly proclaimed, “Oh! Well, you should’ve just said that in the first place because otherwise, it makes no sense.”
To another man, I told him to, to begin with, 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 if they were to fire me from a job that’s 99% customer service skills, multi-tasking, and 1% bending-over. I heard this attitude from customers repeatedly, that I shouldn’t be working there, that it didn’t make sense that I was working there if I was disabled, that I should really find another job. No one offered me a job of course. And no one was interested in hearing that sitting for long periods of time at a desk job would be just as difficult for me, or that I’d still need accommodation and assistance at a different job. I’d still be disabled.
But again it was that attitude: 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?
What do you do, when nobody notices you? When the people in charge won’t help you? When the people harming you don’t know that you exist?
It’s easy to dismiss this struggle as just a personal issue that I need to work on. But it becomes much harder to ignore these messages when they surround you, when they make up the structure that you live in: People with service dogs kicked out of public spaces or denied access to public transportation; large sections of well-populated cities that are not wheelchair accessible; people with invisible disabilities harassed for using disability 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.
I’m unlikely to ever apply for disability assistance because I’m not disabled enough by mainstream definitions to ever qualify. The average length of time it takes to be approved for disability is 2 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, 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?
And there is no room for us to speak up to the able-bodied people who enforce these systems and 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 had changed. I had been with my partner for 4 years at that point and we were living together. Things were going well. But I was starting to drift, feel less close. 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.
It took me ages to figure out why. Once it was clear that I was disabled and that status wasn’t going to change anytime soon, I assumed that I would no longer be a good life partner for my boyfriend. If he could choose someone else who was able-bodied, it made sense that he would do that. 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. I couldn’t do a lot of the things I could do when we started dating. Why would he choose to stay with someone who was a burden? 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, I could not use it at all for several weeks and my partner was not able to take care of me full time. It took a lot of courage to ask for the help I needed with cooking, cleaning, and other chores. While it was stressful to have to keep scheduling people to cook and clean for me, it was better than attempting it myself.
But even in the face of so many friends willing to help me, my self-esteem plummeted. I couldn’t use my arm which meant no cooking or baking projects and limited ability to type. But my brain was restricted too. It was busy focusing on healing and keeping an eye out for potential threats and coping with pain. My focus was shot; even creative projects were off limits to me. There was really very little I could do besides reading (on my computer only, books require two hands), watch TV, and spend time with whoever was available to come to my house.
Meanwhile, my friends were progressing full speed ahead with their life projects. Their coming and going was happening at lightning speed in comparison to my life. It was like everyone around me was running and I was standing still.
I found myself confronting some old ideas about myself: What value do I have if I can contribute nothing? What good am I if I am not making progress on anything? Why would people want to be around me when all I do is take from them and I don’t give back? To be a drain on other people’s resources was like returning to the worst version of myself. 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 until I can pare back the amount I am taking. I can never allow the amount that I give to get too low. I can never let the amount I ask for become too high.
What was there to love about mew when all the things I was good at, all my projects, all my hobbies, all my goals, were stripped away? What would happen to me if I spent large chunks of my life in this position? I had these ideas about myself long before I became disabled, but our cultural narrative around disability brought it back to me in full force. Suddenly, the thoughts in my head were reinforced, not just by me, but by the society I lived in.
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, or by making even you question whether you actually exist or not. 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?”
About the writer: Kella Hanna-Wayne is the creator, editor, and main writer for Yopp. She specializes in educational writing about civil rights, disability, chronic illness, abuse, and Dissociative Identity Disorder. Her work has been published in Ms. Magazine blog, The BeZine, and Splain You a Thing and in 2022, she released a self-published book of poetry, “Pet: the Journey from Abuse to Recovery“. You can find her @KellaHannaWayne on Facebook, Instagram, Pinterest, Medium, and Twitter.