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
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