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

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 7^th 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 8^th 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,

The Empty Summer

Flips page. “[K] has been resisting/refusing to verbalize when attempting to get object nearby.” Flips page. “She is usually very adamant about not participating in an activity when she doesn’t want to.” Yes, two-and-a-half-year-old me! You are a strong, independent woman. Flips page. “Participation with therapist is sometimes difficult.” What can I say? I’m stubborn. “Goal: [K] will cooperate with adult requests 80% of the time.” Okay, that is a lot to ask of three-year-old me when many adults don’t cooperate with adult requests 70% of the time. Flips page. “She tended to be a little ‘stubborn’ with the staff today by raising voice and saying ‘no play’ when asked to say ‘Please’.” Laughs. Like I said, I’m stubborn, and I know what I want.

Five years ago, I could not imagine having these reactions to the pages and pages of detailed therapy reports. Five years ago, when I first found this ominous folder of report after report about every aspect of my development up until age five, my reactions were quite different. Five years ago when I went on my search to find just one document that said when I was officially diagnosed with mild left hemiparesis and instead found two file folders full of therapy reports, medical invoices, and evaluation reports, I could not imagine that one day I would laugh off these comments and admit that these tendencies were just an immature expression of my personality now.

Opens folder.

“Parent Concerns: Not walking independently. Says just a few words.” Eyes glaze over page. “Poor coordination of eyes. Concern about depth perception.” Heart starts pounding. “Recommendations: Speech Therapy. Physical Therapy. Occupational Therapy. Ophthalmologist. Developmental Teacher.” Face becomes flush. Flips page. “Demonstrating some tactically defensive characteristics.” Flips page. “Inconsistent sound play of limited phonemes.” Flips page. “She has trouble following objects in pursuit type patterns as her eyes don’t move quite fast enough.” Flips page. “[K[ is demonstrating a 7 month delay in her fine motor skills.” Muscles tense up. Flips page. “She demonstrates a reciprocal gait pattern, but proper heel strike absent… Balance appears to be compensated as patient must adjust for decrease in dorsiflexion while in swing phase and heel strike.” Googles ‘dorsiflexion.’

When I first went through that folder five years ago, I was physically frozen while thoughts gushed in my head: How could so many things be wrong with me? Why did they have to track every little sound, movement, and gesture I made? Do I still not articulate my words correctly? Can I not see in 3-D at all?

As the days passed after I read through every single therapy report, invoice, and evaluation report, I progressively submitted to those racing thoughts. At the age of 19 I began to internalize what the therapists had reported about my development from the time I was one and a half to when I was five. Remember when I said that I hated wearing the eye patch over my right eye in 7^th grade? Welp, I dug that eye patch back out and started wearing it to fix my depth perception. I began agonizing over the fact that my left eye appeared to wander outward.

Eventually these thoughts made me feel worthless and helpless. I stopped having the desire to make plans with my friends. I stopped wanting to interact with people, including my own family members. I have always loved playing games with my mom, but that summer I stopped finding the joy in playing games. I became more agitated with people. One day I snapped at my mom in DSW for the littlest reason and realized afterwards that it was not like me to get irritated with someone – especially my mom – for barely any reason. For the first couple weeks I just thought once I got back to DC, I would be back to my normal self. Since I wasn’t able to get a job that summer, I thought I just needed to get back to being busy again and I would forget all of these thoughts. Yet after almost a month, I realized that I didn’t even have a desire for going back to DC or AU anymore. At this point I started feeling a general sense of emptiness. I no longer cared if I slept at night, and I stopped having a desire to eat. Even just the process of eating sounded overwhelming.

I tried to cope with these feelings. I turned to books and read the entire Narnia Series and five of the Harry Potter books to try to escape my own thoughts. I fixated on The Fosters and watched the series three times that summer. I even bought a book called Everything Happens for a Reason to figure out why I was born with a disability. I tried to spend as much time in the sun as possible, but that didn’t help. One late afternoon I started crying for no reason as I lied on a beach chair in the sun and read my book.

During this month of feeling like my personality was gradually vacating my body, I could tell my mom knew something was wrong. She would ask me if I was feeling okay, and I would try to fake a smile and say yeah. One time when she asked me, I told her I was worried about the amount of loans that she and my dad were taking out to pay for my school, and I was considering if transferring to the University of Maryland would save money in the long run. I didn’t want to admit that something was wrong. However, after having thoughts about death a couple times, I knew I needed help whether I wanted it or not. One night I forced myself to find the courage to tell my mom that I was depressed. I was nervous the entire day. I even planned it out. I asked her to play a game with me after dinner. She said yes. After each round of the game, I kept trying to get out the words, but I couldn’t do it. Finally, after we were done playing and as we cleaned up, I got out the words: “I think I have depression.” She said she thought so too and seemed relieved that I had finally come to her about it. We then sat on the couch as I recounted how I had been feeling. She asked me if I knew why I was feeling depressed. I admitted that it was because of my disability. She responded by asking why I would be so upset by it now. I couldn’t admit that I had found my development folder. At that moment I already regretted admitting that my depression had something to do with my disability, so I simply said “I don’t know.”

The next day my mom scheduled an appointment for me to see the doctor. The day of the doctor’s appointment, I lied in bed that morning just wishing it would all end, but I reminded myself that in a few hours I would be getting the help I needed. I made a list of my symptoms in case I forgot something when I was at the doctor’s office. I had my mom come back with me to the examination room to help me feel more comfortable. The doctor asked me what my symptoms were. After I listed my symptoms, she said it sounded like I had clinical depression. Then she asked the question: “What do you think triggered it?” Unlike the conversation with my mom, I simply answered: “I don’t know.” But my mom said, “Tell her what you told me,” and I admitted that it “might be my disability.” Then the doctor asked us some questions about my disability and my mom explained that I’ve had it since I was born. They questioned why it was affecting me emotionally now. Again, I responded: “I don’t know.” The doctor wrote me a prescription for an antidepressant, and suggested I see a therapist once I was back at school. She said I would start feeling better by the end of the week.

The antidepressants at least seemed to make me feel less numb, and by this point I was only a few weeks away from going back to AU. I had something to try to look forward to, and I tried to focus on being back with my college friends.

As I write this post, I’m a couple days away from seeing the doctor about recurring pain that I’ve been having in my left leg for the past 7 months. Since January, I’ve been anxious to get answers about what could be causing the pain. I originally planned on seeing my previous doctor who has been great with checking on issues related to my spastic hemiparesis in South Bend over spring break, but since that was towards the start of the spread of coronavirus in Indiana, I was scared to make an appointment. Now I’m going to my new doctor in Maryland, and I’m nervous. While I want answers, I’m scared of what those answers will be.

During that summer nearly five years ago, when I thought I needed to and could fix my depth perception, I told my optometrist that I was worried about my left eye turning outward and I was worried that it was affecting my depth perception. He told me that while it was turning out a little bit, any surgery would simply be cosmetic and may worsen my vision. That was not the answer I was hoping to hear. I then found out that while he was examining my mom in another room, he told her that my eye was not turning out. I was shook. He lied to me. Me. Who had always hated going to the eye doctor and refused to admit that anything was wrong with my eyesight. Me. Who after 19 years had finally admitted that something was wrong with my eyes and was advocating for myself. He didn’t take my concerns seriously.

So today that leaves me scared. Will the doctor take my concerns seriously? Will she believe me? Then I think of how reading those therapy reports made me feel five years ago and the downward spiral that caused. What if it is something major? What if she refers me to physical therapy? What if I must have surgery? How will I react to that in the short term? In the long term?

“The thing about having a mental breakdown is that no matter how obvious it is that you’re having one, it is somehow not obvious to you. I’m fine, you think. So what if I watched TV for twenty-four straight hours yesterday. I’m not falling apart. I’m just lazy. Why it’s better to think yourself lazy than think yourself in distress, I’m not sure. But it was better. More than better: it was vital.”
― Tara Westover, Educated