I was born 2 1/2 months premature. I have cerebral palsy. I use a wheelchair because I have no real use of my lower body, low trunk strength, and limited use of my upper body. I blog mostly by using a voice to text program called Dragon Naturally Speaking.
Dragon makes everything super interesting. Did you know that it can spell words like “Chewbacca” and “Obi-Wan Kenobi” but it can’t remember to capitalize my name unless I tell it to do so with a special command? (My name is a noun, and it always thinks I’m talking about roses when I say my name.)
My disability also affects my vision, visual perception, the clarity of my speech, and my bladder control.
The speech issue is another reason Dragon makes everything more interesting, now that I think about it.
Women in my family have a history of migraine headaches that goes back at least three generations. For most of us, the migraines are not responsive to preventative medications. I get migraines once or twice a month, and they last a minimum of three days. Usually it’s four or five days with a migraine and then a few more days of residual headaches and weakness throughout my body.
What’s really funny is that the migraines make me sick to my stomach, and I have mobility issues. Picture a person using a wheelchair who can’t go very fast because she has limited arm strength trying to “run” to the toilet in the middle of the night, blind in one eye, and retching.
Actually, nevermind. Don’t picture that at all. It’s probably not a mental image you want to start your weekend.
So, getting back to what I was saying:
There’s also a family history of menstrual problems, including endometriosis, severe mood changes related to our periods, and chronic irregularity. I once had my period for six months straight, and because I had no medical insurance at the time, I was repeatedly told by doctors of this was “normal” and that “everyone goes through periods of irregularity in her cycle.”
Yes, I’m serious. I was told that by a medical professional in the United States of America while I was bleeding profusely out my vagina.
It will come as no surprise to most of you that I became anemic. I had to take iron supplements for about two years after that.
But I had no medical insurance, and I was poor. And I already had a slew of medications to buy.
And that’s not all!
I’ve had digestive problems since my teens. They’ve gotten progressively worse. Between that, the period issues, and the fact that I need to constantly monitor my diet for migraine triggers, it’s incredibly complicated for me to get adequate nutrition.
Add to that my physical disability, which makes it difficult for me to handle and prepare foods, and you might start to wonder how I survived to the ripe old age of 41.
Anemia, chronic pain, and poor nutrition can all affect your energy levels and cause chronic fatigue.
Fatigue is also common for individuals with disabilities, because we expend more energy to accomplish basic, everyday tasks than most able-bodied folks.
(Hang in there. I’m about halfway done with my laundry list of problems. You need to see all of it for the context of how this relates to feminism and the point of today’s post.)
I grew up in hell.
My father was a raging alcoholic who couldn’t keep a job. My mother worked as what was then called a certified nurse’s aide for slightly more than minimum wage. It’s a grueling, often thankless job that she worked because she couldn’t afford to finish nursing school. She aspired to be an RN. She was raising three children, while my father drank and drugged away most of the paychecks, so we were pretty poor, to say the least.
My mom worked hard, but she had her own demons. She had a violent temper on the best of days, and her vice choice was cocaine. Imagine someone with a violent temper also high on cocaine — or, no, don’t. Again, probably not the kind of thing you want to imagine to start off your weekend.
Suffice it to say that I was abused mentally, physically, and emotionally, from about the age of five.
I was sexually abused by different people from around eight or nine onward into my teens, and then married a man who regularly coerced me into having sex whether I really wanted to or not.
I lived with anxiety, depression, and dissociative tendencies from childhood, but they were exacerbated in my teens.
In school, I was bullied from second grade all the way through high school.
In junior high, the sexual harassment started. It went on for several years until my depression became so bad that I was literally unresponsive and not a fun target anymore.
Most of my friends and neighbors were poor, and a lot of us had violent parents, but all of the other kids could escape their houses when things got bad. I couldn’t. We lived in a third floor walk-up with no elevator, where I spent an hour each day to get up and down the stairs, then had to wait for a parent to take my wheelchair down the front steps of the building. My only “escape” was the hours I spent at school, where I was bullied and harassed.
My life was essentially a practice in navigating different levels of agony.
I had some peers with disabilities through school or local physical therapy providers. We all shared common frustrations and problems related to disabilities, but all of them seemed to have supportive, engaged parents. (I realize that appearances can be deceiving, but as a child, appearances were all I saw.) Several of these kids lived in upscale neighborhoods.
I was often compared to those kids from the rich end of town. By my parents, by teachers, even by myself. I was smart and tough–so why didn’t I do as well? Why didn’t I apply myself and try harder? I didn’t have a good answer to those questions, because I couldn’t articulate the mountain of problems and obstacles. I didn’t even know that I was so bone tired that I couldn’t think straight, because that was the only reality I knew. I had no memory of not feeling exhausted.
The few times that I tried to voice how difficult things were for me, I was knocked down and shamed for “making excuses.”
“Everyone has problems,” I was told.
“Don’t play the victim,” I was told.
“Do you think you’re the only one?”
No. I didn’t think that at all.
I wasn’t the only girl in school who was bullied for my looks, my “poor” clothes, my free lunch program card, etc.
I was an easier target because I couldn’t run away. I “walked funny,” and I was unsteady on crutches. Even in a wheelchair, I couldn’t move very fast.
Other targets chose to walk to school rather than take the bus so they could avoid their persecutors. I didn’t have that option.
If I complained, it would be worse for me when teachers and bus drivers weren’t looking. My only option was to stare straight ahead and pretend I couldn’t hear, couldn’t see, couldn’t feel.
Some girls walked in groups to avoid the unwanted attention of the boys, but those girl-groups delighted in tormenting me as well.
I wasn’t the only student who was sexually harassed, but I was alone. When you have no allies, you physically cannot run, you’re being molested at home, and the boys at school feel free to masturbate in front of you, you learn that if you want to survive, you must be as quiet and implacable as possible.
You must–again–stare straight ahead and not react, no matter what is done to you.
I carried that lesson forward, and I carried the constant shame of being told how “bright” I was, but how I was “not living up to my potential:” how much more I could do if I would only stop being so “apathetic.”
So, I didn’t speak when I was called lazy. I didn’t protest when I was compared to those other kids with disabilities, who had money and supportive, kind parents and always seemed to be thriving while I languished. I learned to play up the “apathy,” because there is a point at which people will stop bothering you if they think you’re a lost cause.
I did this because I had learned that speaking up, fighting back, defending myself, hurt worse than pretending not to care.
I did it because I didn’t have the language to articulate the complexities of my situation, and without the right words, I could easily be crushed and ground down.
I tried to kill myself four times before I turned 18. I felt trapped, but I also felt guilty because I was convinced that I had “no reason” to feel the way I felt. Things weren’t so bad. Nobody else seemed to believe I had reason to struggle as much as I did, so it all must have been my fault.
Feminism gave me the framework to begin unpacking and wrestling with the ways in which I had been conditioned to blame myself for systemic problems. Intersectional feminism gave me the tools, the language, and the space, to articulate my experiences and come to terms with my whole life rather than just individual parts of my identity. I write about all of this so that other people can also gain the same language and begin to heal.
This isn’t about laying blame or “playing the victim.” I am not my past, and my parents are not responsible for my adult choices. My circumstances do not control my outcomes in life. Nor do my disabilities and heath issues. But it would be foolishly unhealthy to deny the way that these experiences and problems inform where I am now. I have to see it all clearly and speak it in order to create what I want out of it.
Feminist Friday posts go live on this blog every other Friday in 2018. The main topics are rape culture, disability, and LGBTQ intersections.