Tag: disability

Disability and Medical Trauma: What I Want Healthcare Professionals to Know

I’m lying down on the hospital bed getting prepped for my colonoscopy and endoscopy. A nurse begins finding a vein in my right arm that they can use for the IV while another nurse starts putting a blood pressure cuff on my left arm. I’m looking forward to being knocked out for an hour.

Then the anesthesiologist comes over.

“So, I can see you’re no stranger to anesthesia in your young life.” Well, this is a new way of putting it. At least she’s creative. “Yup.” “And you’ve never had problems with anesthesia?” “No.”

Then she starts asking me questions about my surgical history. “I’m assuming the three eye surgeries were for strabismus…” “Was the cranial reconstruction straightforward? No complication?” “Yeah, as far as I know.” I was only 4 months old… it’s not like I was aware of what was happening.

So far most of these questions are standard and I’m used to them, besides the last one, but still, I don’t think much of it.

But then she starts asking about my medication.

“What is the baclofen for?” “It’s for spasticity on my left side.” She pauses, then asks, “Why do you have that?” “Oh, I have mild CP – left hemiparesis or hemiplegia.” Then she just gives me a somewhat questioning look. Oh God, please don’t tell me she doesn’t know what cerebral palsy is either, like the nurse at the doctor’s office in March. “Do you have weakness on that side?” Oh, she just doesn’t believe me.

“Yes.” She then reaches out her hands and tells me to squeeze her fingers with both hands. Another thing I’m used to since it’s a standard neuro check and I have to do it at almost every physical. “Well, I can’t tell a difference.” “Yeah, it’s really slight.” “Do you have any atrophy?”

At this point I just want the questioning to stop, but I don’t want to be seen as the difficult patient.

“Yeah, you can definitely tell in my legs – my calves.” Then the anesthesiologist and one of the nurses lift the blanket to look at my legs. “Oh yeah. Definitely,” they say in unison. “Was it a traumatic birth?” Yet another question from the anesthesiologist. Seriously?! What does this have to do with what I’m having done today? “No. They never did figure out what caused the brain damage. They said it might have been from an infection.” “Oh okay. But you can get around okay and do everything you want to do,” the anesthesiologist asks. “Yeah.” “Does it affect your vision,” one of the nurses asks. “Yeah, I’m in vision therapy for it now actually.”

Finally, the questions stop, but I’m left thinking: Why all those questions for a colonoscopy and endoscopy? The other three times I remember being put under, my mom or I have never been asked all those questions.

For Disability Pride Month this year, I decided to journey through six different books related to disability. Over the course of my reading journey, one of the themes I noticed was trauma at the hands of healthcare professionals and educators. I resonated very deeply with some of these experiences. Then at the beginning of August, I went through the experience described above. While to some people this experience may seem like any other medical experience someone may have, it was traumatic to me. Because I’m tired of feeling frustrated with medical professionals more times than not lately, I decided to come up with a list of what I want healthcare professionals to know when it comes to (my) disability. I want to make it clear that I write this list from my own experiences and beliefs, and my words do not represent all disabled people.

1. Sometimes it’s still difficult to talk about my disability

Because I did not grow up openly identifying as disabled and talking about my disability, I still have a lot of anxiety talking about my disability and naming it. In my experience above, I started feeling nervous when I realized that I would have to tell the anesthesiologist that I have CP. Then to have to sit there and prove to her that I have weakness on my left side made it even worse. In another experience, an ultrasound tech did not believe that I couldn’t control the reflexes in my left leg even after I repeatedly told her I have spasticity and hyper reflexes, so she continued to yell at me to relax until I was in tears. It was difficult telling her that I had spasticity and that I couldn’t do what she wanted me to do, especially when all I wanted in that moment was to get my left leg to relax.

Healthcare professionals: Believe your patients. Don’t ask them invasive questions that aren’t relevant to the procedure/exam you are doing. Don’t get mad at them if they can’t do something you want/need them to do. Instead ask them what they need. Ask them if they need accommodations.

2. Talking about my disability can bring back memories of medical trauma

I always prefer when doctors’ offices give me the option to fill out paperwork ahead of time, so I can take my time listing all my conditions, surgeries, and medications. Over the past few months, I had a couple doctors’ visits where they didn’t have me fill out any paperwork before the appointment, and instead I had to rattle off all my medical history to the doctor at once. That is very overwhelming – for both me and maybe even the doctor who must take down the information. Not only is it a lot to remember, but when I must recount my prior surgeries or when I must explain to someone what cerebral palsy or spasticity is – it brings flashbacks to traumatic memories. For example, when I talk about my three strabismus surgeries out loud, I flashback to being separated from my parents for my third surgery and waking up to doctors and nurses looking down at me. Pretty traumatic for a 5-and-a-half-year-old. When I talk about my spasticity, I flashback to getting Botox in my left leg – also traumatic considering I was only 4.

Healthcare professionals: Give the option for patients to fill out all paperwork ahead of time as it is more accessible. Also, educate yourself on trauma informed, inclusive, and accessible practices for disabled people.  I don’t work in the medical profession, but I’m sure there is some type of professional development seminars/courses one could take on these topics.

3. I have more anxiety about how medical professionals will treat me than the procedure or exam

I’ve had more medical procedures, exams, and therapies done than I could ever count, so things such as needles and anesthesia don’t scare me. What makes me most nervous, especially when going to a new doctor’s office, is how I will be treated by the staff. Having a disability my entire life, I’ve dealt with a range of reactions when I tell medical professionals about my disability. Many times, doctors have infantilized me – pitying me for being disabled. I finally started seeing a PCP who didn’t treat me like a young child when I was 20. He didn’t “aww, poor baby” me or make me feel like my disability was something I should try to overcome. Now I have yet to find another doctor that makes me feel like I can be completely open and comfortable like he did.

When it comes to nurses, physician assistants, and techs, they often act as if they’ve never encountered a disabled person, or at least someone with a non-apparent physical disability. They often don’t realize I’m disabled, have never heard of cerebral palsy or spasticity, or they don’t believe that I have a disability. One of my earliest memories where I realized this was when I got orthotics in high school. When casting the molds, one of the physician assistants kept telling me to relax my foot. At that time, I didn’t feel comfortable speaking up and I wasn’t even sure if my foot was completely relaxed. After telling me more than three times, the doctor finally told the assistant that I couldn’t relax my foot anymore than it already was. Then I had the experience with the ultrasound tech, and most recently a nurse who asked if she could just put “spinal injury” when I told her I had cerebral palsy. I just told her sure because clearly, she didn’t know what cerebral palsy was, and I just waited to tell the doctor to have it corrected. (In case you don’t know, cerebral means “relating to the brain” – not spine – so no, cerebral palsy is not a spinal injury.)

Healthcare professionals, especially nurses, PAs, and techs: Educate yourselves on various disabilities. Understand that the same disability can present in a multitude of ways. And don’t pity your patients. We don’t want your pity.

4. Disabled peoples’ biggest barrier is ableism – not their condition

In disability studies, there are two main models of disability: the medical and social model. Healthcare professionals follow the medical model which tells us that disability is a human defect – something that should be treated, cured, and prevented. The social model tells us that the barriers disabled people face aren’t disability, but the way society views and treats disabled people. In the social model the “obstacle” to overcome is ableism – not disability. While everyone needs to learn about the social model, healthcare professionals especially need to be knowledgeable of the social model of disability. They need to understand that many (if not most) disabled people don’t want to be cured of their condition, but rather be able to access their world freely without any barriers. Disabled people don’t want to be pitied or treated as inspirations. We just want to be treated like anyone else.

Healthcare professionals: Educate yourselves on the social model so that you can reflect on how you may be contributing to the ableism that disabled people face and how you can be anti-ableist while still doing your job.

Medical trauma is a cycle that I will continue to experience. I first began to come to terms with my medical trauma during a vision therapy session this year. I finally realized that the reason why I often feel as if I am holding my breath throughout my therapy sessions is because of the trauma I experienced at such a young age relating to my eyes. I mean 3 eye surgeries and numerous trips to the ophthalmologist by the age of 6 is bound to be traumatic. It’s no wonder my body still reacts to being in any optometrist office today. Now that I have recognized and have come to terms with the ways I experienced medical trauma when I was young, it’s easier to name and work through the emotions I have related to healthcare experiences now – even as I continue to experience new moments of trauma.

 “Turns out you don’t outgrow yourself.”

– Christine Pride and Jo Piazza, We Are Not Like Them

The Disability Carnival

I’m waiting in line to get on the ride. I’ve been on this type of ride many times before. “I’m older now.” I tell myself. I’m more excited than ever to get on the ride. It’s a slightly new variation of a ride I’ve been on as a teen, as a child, but this type of ride doesn’t scare me as much as it used to. I’m used to the motions. The twists. The turns. The ups. The downs. And yet. I’m still scared. And while I get on the ride with other people who have been on the same ride time and time again, I still feel alone. Only I know what it feels like to be me going through the motions of the ride.  

This is what being disabled has felt like to me for the past year, but especially over the past few months. Unlike the metaphor of the carnival ride, I cannot choose to stop being disabled – which is fine. I have found a sense of pride in being disabled; in finding community with other disabled people; in realizing my creativity in doing some things different to get similar results as nondisabled people. This is the best part of the disability carnival: the disability community and the pride in identifying as one if its members.

When I discovered the powerful and active disabled community last summer on social media, I had more pride than ever in being disabled. I realized that I could be proud of myself as I am; I am worthy as a disabled person not despite being disabled. While I know this to still be true, the last year has been exhausting because of complications with my disabilities. While I know I’m on several different rides that other people are on, I still feel alone because only I can experience what it feels like to be me.

Most recently, I have chosen to begin vision therapy to decrease eye strain in both my eyes, and to hopefully get some 3D perception for the first time in my life. The feelings I have about starting vision therapy are especially analogous to going on a familiar carnival ride. When I was young, I didn’t want anything to do with the eye doctor. By the time I was five and a half, I had three eye surgeries to align my eyes. I feared going to the eye doctor and anything coming near my eyes. Starting in 7th grade, they prescribed a new glasses prescription every time, but I refused to believe there was anything wrong with my eyes. I rarely wore my glasses. I simply did not want to go on the ride towards better vision.

Flashforward to the summer after my freshman year of college, when I first noticed my left eye turning out. Both the optometrist and ophthalmologist said there was nothing they could do about it. I should just be happy my vision was as good as it was considering my surgical history. This time, I wanted to go on the ride towards better vision and they refused to let me on. I was angry. I cried. I hated my body. All I wanted was perfectly aligned eyes.

Now that I’m older, I know my vision is terrible. It’s not even the poor alignment anymore; it’s more my eyes’ lack of ability to focus, especially together that concerns me. I can’t wait to get on the ride towards better vision, especially since the last time I waited in line to get on, the doctors wouldn’t let me. My eyes can only focus on something for a few seconds before the object starts to go blurry -even with glasses on. I have bad depth perception. My eyes truly refuse to work together to fuse one image. My right eye likes to take over and my left eye is happy doing its own thing. Therefore, this time, after I’ve been forced on the ride to better vision many times when I was a kid, and I wasn’t allowed on the ride the last time I tried to get on, I am excited to experience the motions of the ride. I can’t wait to see how the therapy will improve the way I see the world. And yet, I still feel that small sense of familiar anxiety before getting on a carnival ride. I’ve been here before. I’ve had hope that somehow one of my disabilities or disorders would just magically be treated after just a little effort, and nothing. No results. And so, the internalized ableism ride turns back on: My brain is just too damaged for improvement. I mean they gave me the warnings of the dangers of getting on the ride in the first place:

  • “You will never achieve perfect binocular vision.”
  • “We’re not sure if you will be able to have 3D vision.”
  • “Because of your surgical history, your prognosis isn’t as good as those who haven’t had surgery.”
  • “With your CP, your muscle tone in your left eye could just be different and prevent it from being able to get stronger.”
  • “You will need at least a year or more of vision therapy.”

These warnings turn over and over in my head. Am I making a huge mistake? Am I jumping on this ride too quickly? Am I going to want to stay on the entire time? Am I just wasting my money? This is not a popular ride; how do I know it will be worth it? Am I just choosing to do this because of my internalized ableism?

The disability carnival comes back to the deepest and darkest ride of internalized ableism which is always there waiting for its next victim.

Over the past year I’ve had more doctors’ appointments than I can count. 6 weeks of PT for my IT band in my left leg. Podiatrist appointment for my bunion (and now arthritis) in my right toe. Doctor’s appointment for anxiety. Meds checks for my anxiety medication. Doctor’s appointment for heart palpitations – likely linked to anxiety. Dental procedures. Now multiple eye doctor visits and soon vision therapy appointments. Each of my different conditions is a slightly different ride with different emotions, experiences, and fellow riders, but they are all in the disability carnival. Each time I make an appointment or I’m sitting in the waiting room at a doctor’s office, I am pulled back onto the internalized ableism ride. Am I really in that much pain? Is it really anxiety, or is it just stress? Do I really need to get this checked out? Am I going to another doctor’s appointment because I just want attention? Why does my body have to have so many issues already? I am so tired of there always being something wrong with me.

For much of the past year, I’ve been jumping off the internalized ableism ride before it ends. I force myself to stop thinking those thoughts. Stop throwing myself a pity party over being disabled. I tell myself I can’t be mad or upset because it’s ableism that’s the problem, not my disabilities. But over the past month, I’ve been trying to let myself stay on the ride and allow myself to work through the feelings I have towards my disabilities. I am trying to allow myself to be angry at the fact that my body doesn’t move or feel the way it’s meant to while also acknowledging that that doesn’t mean I can’t also have pride in my body and myself for what my body can do and has done.

As I take this leap onto the vision therapy ride that I never would have imagined going on just five years ago, I am reminding myself to be patient. With myself. My body. My brain. My eyes. With the process. Since I know I’m looking at a year or more of weekly therapy, I’m trying to remind myself to take it one session and one day at a time. Results are going to be slow, but if I commit myself to this project and am consistent then I will eventually see the results I’m hoping to achieve.


“It’s difficult to spend time in any carnival or amusement park and not realize that a repressed fear of death may be the one emotion that is constant in the human heart even if, most of the time, it is confined to the unconscious as we go about our business. Thrill rides offer us a chance to acknowledge our ever-present dread, to release the tension that arises from repression of it, and to subtly delude ourselves with the illusion of invulnerability that surviving the Big Drop can provide.”


― Dean Koontz, Saint Odd

You Are Worthy As You Are: A Letter

Dear K,

Today you read your IEP for the first time after your mom went to your annual case conference. You read words that you could barely pronounce. You read information about yourself that you never learned in the first 11 years of your life. You are confused, and you are scared. You knew for years that something was different about you, but you never knew why. Reading the word disability attached to your name made you tense up just as the words physical, therapy, and braces have made your heart start pounding since you could first read those three words.

Before you let your thoughts get the better of you, I want you to read the words: you are worthy as you are. I know. You are only in middle school and you’re already insecure about your hair, let alone the idea of having a disability. In the world and time that you are living in, society doesn’t want you to believe that you are worthy as a person with a disability. Society wants you to believe that there is something broken about you. The world wants you to hate your body.

So it’s understandable that you hate the left side of your body for it’s inadequacies. It’s understandable that you get mad that your left foot won’t go up as much as your right foot. It’s understandable that you hold onto the belief that one day your ankle will just snap and you will be able to lift your foot all the way, so you won’t have a limp. I mean, even the Bible tells you that Jesus can miraculously heal people, so why wouldn’t he heal you?

By the time you read this, you already know you’ve been through a lot more than most kids your age. You can remember going to physical therapy, getting painful Botox shots, and wearing braces on your feet. As you think about how much more difficult your life seems than other kids you know, as you start to ask why me, I want you to read the words: you are worthy as you are.

You feel alone. You don’t think anyone can or will understand what you are going through as a child with a disability in a world designed for able-bodied people. I know you won’t believe this now, but it will get better.

It will be another 9 and a half years before you hear the word ableism, so it’s understandable for you to internalize ableism without even knowing it. At the time you are reading this, nobody is talking about disability on MySpace, on TV, or in general. You don’t have disabled people to look up to or relate to. All you can feel is shame and helplessness. I know you can’t believe it now, but it will get better.

So:

When you don’t make the soccer team at the beginning of 7th grade, and you hate your body for not running fast enough, remember you are worthy as you are.

When you get cut from the soccer team on the first day of 8th grade, and again you hate your body for not being able to run fast enough, remember you are worthy as you are.

When you have anxiety about going to soccer practice for the second time in one day because you know you will be the last one to finish the run; when you have to stop to catch your breath because the combination of your anxiety over running up the hill again and your exercise-induced asthma makes you start wheezing; when you start crying during your first official practice of your senior year because you are tired of always having to try so hard to be only half as good as the other girls, remember you are worthy as you are.

When you fail your driver’s test the first time, remember you are worthy as you are.

When you are scared about getting a summer job after your first year of college and you don’t get the one job you interviewed for that summer, remember you are worthy as you are.

When you find the folders with all the therapy notes, medical invoices, and evaluations from when you were little, remember you are worthy as you are.

When you see a presidential candidate mock a person with a diagnosis, and then that same candidate become president of the United States, remember you are worthy as you are.

When a man tells you that he’s “traveled to Africa and healed people who were blind and had other illnesses” by praying for them, and then asks you if he can pray for you because he noticed you have a limp, remember you are worthy as you are.

When you have anxiety over your senior literature thesis because you don’t think you’re as smart as the other literature majors, remember you are worthy as you are.

When you feel demoralized at the end of a school day during your first year of teaching because you weren’t the teacher you want to be that day, remember you are worthy as you are.

I’m writing to you during July which is Disability Pride Month. I know right?! Who knew there was a month specifically for people to express how proud they are of having a disability? Again, I know you won’t and can’t believe me, but it does get better. There is a whole community of people with disabilities who are fighting against the very evils in our society that are making you feel alone, ashamed, and helpless at this very moment. So many people on Instagram (you haven’t heard of it yet – it’s a website where you can post pictures and videos) have shared their own experiences of having all different types of disabilities. What’s great about this community is that even though we all have different disabilities and different experiences with having the same disabilities, we can all relate to one another’s experiences of people making us feel broken. Making us feel ashamed. Making us feel that because they didn’t see us as disabled, our feelings weren’t valid.

As I read other people’s posts about their experiences; as I see people – both disabled and non-disabled – posting about what ableism is and how we can fight against it; as I allow myself to be vulnerable and share our experience here on this blog – I cry. I cry because I wish you could experience this at 11 years old. I wish you could have the word ableism in your vocabulary and understand what it means, so that you could know it’s society’s prejudice against disabled people that’s fighting against you and not your own body. I wish you could see Emily, a model a little older than you who has cerebral palsy and wears braces, in the Target ads. I wish you could see Briella who is a model for Kohls and has cerebral palsy. I wish you could see and hear from Emily Voorde who worked on your future mayor’s presidential campaign and uses a wheelchair. I know. You can’t and won’t admit to yourself that you have a disability, and your internalized ableism tells you that you don’t have cerebral palsy nor do you use a wheelchair, so you are nothing like these three people. I just want you to know that you will not always feel alone.

I won’t say I’m sorry because I know you are tired of hearing that. I won’t tell you it’s okay because it’s not. I won’t tell you to be brave because that’s gross. While it does get better, it’s still not easy. It will take you another 10 years to start unlearning the ableism that is woven into every fabric of our society. And even now, I am continuously learning about what ableism looks like and how to be anti-ableist. I am still reminding myself:

You are worthy as you are.

Love,

K

The Longing Years

I have been sitting on this post for 8 months. I have tried writing this post at least three other times, but I struggled fitting four years of high school into a 5-7 minute-read blog post. A lot happened in high school. But with the COVID-19 pandemic uprooting everyone’s lives in one way or another, I figured there is no better time than to write about longing. More than ever before we are all longing for something right now. Longing to go back to work. Longing to go back to school. Longing to have drinks with friends at a bar. Longing to just sit in a coffee shop and read.

Every so often on Facebook, I see the question posed: “If you could, would you relive your high school days?” Most people respond to that question with a strong “NO,” or “never in a million years.” If I am being honest with myself, I would answer yes. Overall, I had a positive experience in high school. I was always busy with one activity or the other. While I was still pretty quiet in high school, I still made many friends through sports and other activities. Especially during the school closures, as a secondary teacher, I miss the daily interactions with my high school teachers who helped foster my love of learning.

Like most people, I longed for many things in high school. I especially longed for quick fixes that I thought would make everything better.

As a freshman, I thought that getting rid of my IEP would make me feel more “normal.” At the time I thought all my teachers were watching me all the time, and I feared how my friends and peers would treat me if they found out I had a disability. In March of my freshman year, my mom and I revoked my IEP, but that didn’t satisfy the longing that I felt.

When it came to soccer and tennis, I longed to be more athletic. I always thought: if only I could run a little bit faster, if only my left side was a little bit stronger, if only I could make varsity. Out of my four years of sports in high school, my junior year soccer season was the most rewarding. I was in the best shape. I played in multiple varsity games, and I earned the “Heart of a Wildcat” award for my determination and hard work. And yet it wasn’t enough.

During high school I had braces for two years. At one of my initial appointments, the orthodontist said I had to get two teeth extracted. I cried almost every night until they were extracted. I made my parents pay for laughing gas to help me feel better about having to get them taken out. I was exhausted from feeling different and the thought of having two gaps in my teeth just added to the list of problems with my body that I could not control. Then two months before I was due to get my braces off, my dentist told me I needed to get a tooth extracted because it was “eating itself from the inside out.” Again. Something that I could not prevent. Something I could not control. This time I would have to get an implant. This time I couldn’t wait until I got home to start crying. All at once it hit me. The exhaustion I felt with the never-ending doctor’s appointments. The exhaustion I felt with the never-ending procedures to fix problems with my body that I couldn’t prevent or control. I was tired. I longed for there to be nothing else “wrong” with my body.

Lastly, I longed to get out of Indiana. While many of my friends and classmates longed to get out of South Bend, I wanted to get out of Indiana altogether. I thought that if I could just meet new people and create a new image for myself that I would feel better. When it came to colleges, the only school I applied to in Indiana was IU, and it was my last choice on the list. In December of my senior year, that longing to get out of Indiana was satisfied when I received my acceptance letter from American University in DC. After making my official decision to go to AU, I could finally relax because in eight months I would be leaving South Bend to start a new chapter 10 hours away. I started going to parties more. I started skipping classes. I finally felt like the person I wanted to be throughout high school. Finally, that general sense of longing I felt for four years had been satisfied.

Or so I thought.

“To want and not to have, sent all up her body a hardness, a hollowness, a strain. And then to want and not to have- to want and want- how that wrung the heart, and wrung it again and again!”

― Virginia Woolf, To the Lighthouse

The “I’m Sorry” Years

Middle school. For most of us these two words conjure up difficult, awkward, and cringe worthy memories that we wish we could forget. I must laugh at the reaction I typically get when I tell people that I’ll be teaching 7th grade. Many people end up saying that middle school was the roughest time for them or that they were “so awkward” in middle school.

Middle school for me was a time of increased awareness and anxiety.

Gym class was always my worst nightmare in 5th grade as that was the time when my physical challenges stood out. As part of a warm-up, we had to skip one lap around the gym. I hated skipping because I physically couldn’t do it. I couldn’t jump twice in a row on my left foot which was required for skipping. So instead of skipping correctly, I did my own version of skipping. I always ended up being one of the last people to complete the warm-up laps, which included jogging, karaoke, running backwards, skipping, and galloping. Sometimes I acted like I was tying my shoe and would skip one of the laps so I wouldn’t be so far behind. Some days I lied to my mom and said I felt sick, so I didn’t have to go to school because I just didn’t want to go to gym class that day.

During the time I was in 5th and 6th grade, more adults began asking the questions that classmates had asked me in elementary school. “What’s wrong? Why are you limping?” “What’s wrong with your leg? Are you okay?” To adults, I usually responded with, “Yeah, I’m okay. I was born like this.” To which they always responded: “Oh I’m sorry.” I never know when these moments are going to occur. One of my soccer coaches in middle school didn’t ask me about my limp until after our last game of the season. My 6th grade teacher asked me months after the school year started.

In 6th grade, I learned that I had a disability. After my IEP case conference, I read my annual IEP for the first time because I was curious. For the first time, I read words like “hemiparesis,” “craniosynostosis,” and “periventricular leukomalacia.” I kept these terms in my head. After learning that I had a disability and the name for it, I went to google for answers, but there weren’t many. When I searched hemiparesis, most of the results came back with sites for hemiplegia and cerebral palsy. But that’s not what I had.

While I found many YouTube channels and blogs by moms of children with physical disabilities – specifically CP – I couldn’t find a blog by a person with a physical disability. I hoped that if I could just find someone who shared the same experiences as me, I would feel better about myself.

Instead, I started feeling sorry for myself.

Going into 7th grade, I thought that if I could make the school soccer team then I would feel better. But after only a few practices, I was cut from the team because I couldn’t keep up with the rest of the girls.

Finding out I had a disability in the spring of 6th grade and not making the soccer team at the beginning of 7th grade, made for my most difficult year of school. My self-esteem hit rock bottom. That year I didn’t play rec soccer in the spring because I was too scared. That year all I wanted was for my hair to be naturally straight because I thought that would solve my problems. That year I felt like the only people who cared about me were my friends.

In the spring of 7th grade, I went to an optometrist for the first time instead of my normal ophthalmologist that I had been seeing since I could remember. The eye doctor prescribed glasses and recommended that I try patching my right eye two hours a day to help strengthen the muscles in my left eye.

I hated this. I tried getting the trendy frames to make me feel better about having to wear glasses, but that didn’t work. I still hated how they looked on me. Because my mom made me, I attempted to wear the eye patch for two hours a day after school. But I hated every second of it and took it off after only 20 minutes. I felt stupid. Inferior. After one of my sibling’s friends made a pirate noise at me while I was wearing the patch, I refused to wear it again.

Towards the end of 7th grade, I sat in on my first IEP conference. During the meeting the school district representative asked whether I sat on the first or second level of the computer labs. I told her that I usually sat with my friends, so typically the second level. I thought that was a stupid question. As far as I could remember I could always easily walk up steps. I thought to myself “Why wouldn’t I sit on the second level if I wanted to?”

AND YET. She put in my IEP that I should be seated on the main level of any classroom that had two levels and I should be seated at the front of the class. There was no point in me being in that meeting if she wasn’t going to listen to what I said. (As I’m writing about this moment, I’m fuming because this still infuriates me to this day.)

8th grade was a much better year. Although I didn’t make the soccer team again, I stayed on as a manager and made the best of the situation. I was the editor of the yearbook. I gained more friends and more confidence. Throughout the year I slowly began to accept that I had a disability.

That year in gym class, we simply had to jog for a set number of minutes as a warm-up. By the end of the semester I could jog a pretty steady pace for the total 12 minutes, and I ran a mile under 10 minutes for the first time that spring. I know that seems super slow to most of you, but that was fast for me. When it came to physical activities, I tried as much as possible to stop comparing myself to others and instead focus on beating my own self.

However, there were still moments that made me self-conscious because I still didn’t want people to learn that I had a disability.

In algebra class, the teacher told me I could take extra time on one of the tests if I needed it. Since I didn’t want to be treated differently, I rushed through the test and earned a D rather than taking the extra time and getting a better grade. I thought if I took extra time on a test that meant I was dumb. At the end of the year he had me take the ECA (End of Course Assessment) in the special education room, so I could use the extra time if I needed it. Again, I hated being treated differently than my peers, but it did make me feel a little better that another classmate took the test in the SPED room with me. It’s ironic because we ended up finishing our tests before the rest of the class, so we got to just hang out in the hallway and talk while we waited.

The difficult memories I have from those four years made me scared to teach middle school. But after working with 8th graders last fall I realized I love the relationships that a middle school teacher can form with their students. Now I want to be the teacher that I needed as a 7th grader. I want to make sure my students are given the opportunity to use their voice when it comes to their education. I want them to feel seen, heard, and represented. Most of all, I want them to know that they matter just as they are. I never want any of my students to feel as alone as I did during middle school.

In last week’s post I mentioned that children need to see themselves represented in the media and the people around them for children to believe that they belong in the world. On August 5th, 2019 we lost Toni Morrison. Through her writing she allowed black people to feel heard. She empowered black people to speak up against the injustices that they face every day. She gave them the chance to be represented through her writing. Prior to writing this, I read a thread of tweets by a woman who said her black friend who was raised by a white family didn’t read a book by a black author until he read The Bluest Eye in college. According to the woman’s tweet, he told the class: “I didn’t know Black people could write like this” (@sjjphd via Twitter).

I will never know what it feels like to be a black person in America. But I do remember feeling so alone in middle school because my experiences as a PWD weren’t represented in the books I read, the movies I watched, or the blogs I could find on the internet.

Representation matters.

“I tell my students, ‘When you get these jobs that you have been so brilliantly trained for, just remember that your real job is that if you are free, you need to free somebody else. If you have some power, then your job is to empower somebody else.’”

Toni Morrison

The (Mostly) Forgotten Years

Of all my posts, I have a feeling this will be the most difficult one to write. I’ve struggled with figuring out how to write about the period of my life that I can barely remember.

I find it both frustrating and creepy that people who’ve known us since we were born know more about our first few years of life than we do ourselves.

Most of us don’t remember the day we took our first steps.

Most of us don’t remember the day we said our first word.

We don’t remember our most significant physical milestones. ­­­­­­­­­­­­­­­­­­­­­­­­

Personally, I wish I could know what it felt like to be in the room when my parents received my official diagnosis. I’ve read several blogs/social media posts by special needs parents who explain what they went through after receiving their child’s primary diagnosis. I’m sure that my parents shared a lot of those same feelings. But I wish I could have been there to hear how the doctor gave my parents the news. I want to know the exact words he used to explain the diagnosis. I want to know the exact words he used to explain my prognosis.

The memories I do have of the first five years are consumed with physical therapy and medical procedures. Throughout these early experiences, I was not the “brave” little kid with a disability that the media enjoys showing at least once a week to make people feel better about their lives.

I hated getting fitted for new orthotics. One time my mom bribed me with candy so that I would be good and cooperate for the orthotist… luckily that time it wasn’t my regular orthotist and since I thought the new man was cute I gladly cooperated.

At night, I had to wear an AFO with a knee immobilizer on my left leg to stretch out the tight muscles in my calf until I was about eight years old. The brace forced my leg to be entirely straight. Just like the orthotics I had to wear during the day, I hated wearing it. Most nights I either went out to my mom to complain the brace was hurting me and sometimes she would let me take it off; or I would choose the sneakier route and just take it off once she left the room.

I hated going to the eye doctor and to this day I still prefer the dentist over the eye doctor any day. I remember going to the eye doctor and refusing to cooperate when they had to put eye drops in to dilate my eyes. My mom ended up choosing my glasses for me because I didn’t want to wear glasses at all, so obviously I was not interested in choosing a pair myself.  

I remember getting my second set of Botox injections to help decrease the spasticity in my left calf. Honestly, I don’t know why anyone would choose to get Botox injections in their face of all places because that is the most painful injection. Shots don’t bother me now because in my mind, nothing is worse than Botox injections. Whenever I hear or read the word Botox, I just flashback to lying down in the doctor’s office and crying in pain as they injected the toxin directly into my muscles.

While these memories of the first five years are vivid, they’re also filled with the pain that I felt during that time. There was so much I didn’t know or couldn’t understand at that age. I didn’t know why I had to wear orthotics every day. I didn’t understand why I had to go to PT while everyone else I knew didn’t. I didn’t know why I had to wear a cast on my left ankle for a few weeks when my leg wasn’t broken. I remember another girl at my preschool asking me if I broke my leg because I had a cast on and all I could say is no because I didn’t actually know why.

In retrospect, I realize just how unhappy I was for a child that age because I couldn’t comprehend why I was treated differently than others. That’s why it frustrates me so much that I can’t relive these moments with the understanding and perspective I have now.

What’s most frustrating is that I don’t know exactly what caused the brain damage. My mom said the doctors told her I may have had a stroke (the most common cause of hemiparesis/hemiplegia), but the neurologist who confirmed my diagnosis wrote in the report that the damage was more consistent with a brain infection. As someone who constantly goes to Google to look up the answers to my random curiosities, not knowing the answer to the question of what damaged my brain will always bother me.

The most significant challenge with having a physical disability is typically not the physical impairments themselves, but the mental health problems that are caused by the stigma surrounding disabilities. While my disability affected me physically in many ways when I was younger (and still does to a lesser extent), this post highlights that starting at the age of 5 or even younger, I struggled with my self-image. I hated my body. I thought I was ugly because I had to wear braces. Later I will write a post dedicated to my mental health struggles, but I hope this post shows that while you may think the child with a disability is “inspiring” or “brave” simply because they are walking with a walker or leg braces, they may be fighting a much larger battle against their own thoughts.

I want to end this week’s post by putting in a prayer request to those of you who pray as part of your faith.

I follow many special needs families on social media, and one family I’ve been following for a couple years just experienced a major heartbreak with their daughter, Evanna. Evanna has a congenital heart defect that cannot be treated or cured with a heart transplant. Within the past year they traveled to Stanford twice to have two open heart surgeries that were meant to significantly improve Evanna’s quality of life. While both surgeries seemed to be a success, the family just learned that Evanna no longer has blood going to her left lung, meaning that only her right lung is supplying oxygen for her body. You can follow their journey on Facebook: https://www.facebook.com/theirvinehome/ or Instagram: @kierrairvine. Please keep them in your thoughts and prayers. Evanna’s mom is specifically requesting prayers for guidance and peace.

“I can only note that the past is beautiful because one never realises an emotion at the time. It expands later, and thus we don’t have complete emotions about the present, only about the past.” 
― Virginia Woolf

Why Asymmetry?

For those of you who know me, you are probably wondering why I used a term typically associated with math or science as the title of my blog. But asymmetrical is a fitting way to describe life. Life is not even. Life is not equal. When we’re excelling in one area of our lives, we’re struggling in another area. Life is not organized into equally designed parts. Life is messy and filled with asymmetries.

This title describes my life particularly well because from day one I’ve experienced asymmetry. The bones on the right side of my skull fused together too quickly leading to a condition called right coronal craniosynostosis. Although I had surgery at four months to correct this, my skull has never been symmetrical.

I have a disability called left hemiparesis which means the left side of my body is weaker than the right side – from my toes to my eyes. As I’ve gotten older, I’ve become more aware of these asymmetries. Since high school I’ve been self-conscious of the difference in the size of my calves. My right looks muscular whereas my left is scrawny. My second year of college, I started focusing on the fact that my left eye wanders outward, especially in photos and late at night.

Lately, I’ve been focusing more on the size of my calves than usual, which inspired me to start this blog. Once someone told me that I should go to the gym to build more muscle in my left calf. Oh, if only it was that easy. Once I had a guy on the street say to me as I was walking by him: “Hey miss! You need to pull that foot up more!” (I’m sorry but don’t you think someone who looks about 20 years old would walk like a typically developing person if they were physically able to???) Anyways, moving on. Within the last year I’ve been able to start shaving my right leg in the shower while balancing mostly on my left leg AND without holding onto the wall or a railing. THIS IS A HUGE DEAL FOR ME PEOPLE. Before this I always thought I’d have to hold onto something while I shaved my right leg. Once I realized I reached this milestone, I was super happy for myself. It meant that my left leg was the strongest it has ever been. But I felt there was no one to share in my happiness and celebration.

Moments like these, where I remember most people don’t know what it means to live life with this type of disability, motivated me to start this blog and share my story. I don’t want pity. I want understanding. Most of my life I’ve felt off-balance – often literally as balance issues come with having hemiparesis. As someone with a semi-visible disability, in certain areas of life I can blend in with people without disabilities, but in other areas I can relate more to persons with disabilities (PWD).

This won’t be a blog just about my life with a disability. As someone who loves reading, I will talk about literature and maybe even review some of the books I’m reading. As an English teacher and someone passionate about public education I will write about issues in education and maybe share some of my lessons that went over well with my students.

[My first few posts will summarize what my life has been like so far as someone with a documented disability, but after that it will be more random; some posts might be book reviews/literary analyses while others will be my thoughts on education, disability rights, faith, and other issues that are important to me.]

“No human face is exactly the same in its lines on each side, no leaf perfect in its lobes, no branch in its symmetry. All admit irregularity as they imply change; and to banish imperfection is to destroy expression, to check exertion, to paralyze vitality. All things are literally better, lovelier, and more beloved for the imperfections which have been divinely appointed, that the law of human life may be Effort, and the law of human judgment, Mercy.” ― John Ruskin