This post was written by Kay Uchi, a black friend of mine(Alison). She is also disabled, and we decided to share some of her experiences with systemic racism in medical care. What follows is her story.
The day my father died
I remember my mom knocking on my bedroom door and asking me to examine my father to see if he was breathing.
At first, I thought it was a joke. Her asking for anything from anybody is alarming.
She is a proud, competent black woman. For example, she sewed all my sister and my school clothes while my father attended graduate school then she abruptly stopped when finances were better. Everything she does, seems to be out of duty, not desire.
I threw on a robe, whatever I could find in my parents’ guest room, as I was only visiting to celebrate my birthday.
I looked down at his lifeless body, waiting for him to open his eyes and say something smooth and cavalier like only my father could. The silence echoed. He had nothing more to say.
I checked for his pulse and put my cheek near his mouth but felt no breath.
I could tell he was dead but I couldn’t say the words.
She was with him for almost 50 years.
I simply shared my findings and suggested calling 911. EMS came and stated that he(my father) was dead, While they told us, my sister arrived.
She called the morgue .
We waited downstairs. My mom watered her plants, read the paper, put the clothes from washer to dryer, anything to keep from sitting still.
My sister was arguing politics with mom like all was normal.
NPR was playing in the background.
I found myself thinking about my father’s lifeless body upstairs and how he would have liked the dress I brought for my b’day celebration. Now he wasn’t going to see it. It was a shame, because of our shared love of fashion.
Why my father died
Like many older black men, my father had heart issues, and had both a pacemaker and defibrillator installed around his heart.
He and my mother had agreed to every procedure the doctors ever recommended, and I felt like he was a guinea pig, free for them to experiment on.
That day, I pulled my sister away and asked her about dad’s health.
She said although previously he was in and out of the hospital related to his past cancers, he hadn’t had any recent problems.
Oh, she said, he had a cold so the doctors gave him something for it.
I asked what did they give him, and she replied codeine.
I was horrified. and shared that emotion with my sister.
She trusted the doctors had a good reason to give a person with a pacemaker codeine, but I don’t share that trust.
Codeine is a form of opiate, which are known for depressing the central nervous system. Generally speaking, heart problems and opiates are not a good combination.
Research has shown that opioids greatly increase the risk of death in a wide variety of patients.
Given all of this, why would the doctor prescribe medication with codeine for him, knowing his history of heart issues? Most likely, because he didn’t think about it at all.
Many patients are subject to racism, sexism, or the combination of the two. Many black men in particular are at a greater risk of being improperly treated and often are not offered the right options.
I’m sure my dad wanted something to manage his cold, and the doctors just gave him the typical treatment.
Unfortunately, the possible side effects weren’t made clear to him, and his death was the result. Even more unfortunately, my mother and sister couldn’t imagine that the doctors could be so incompetent.
Why I knew better: experiences with systemic bias
It’s painful to discuss but I’ve experienced racism in the medical system.
So I see a rheumatologist at a clinic in Brooklyn. The waiting room is full of low-income people, many of color. We are all waiting a long time to be seen, hot and impatient.
The doctors seem to be fresh out of med school, which I don’t mind because they haven’t been brainwashed with some of the negativity of the system.
However, all their decisions have to be signed off by the attending physicians, only a few of whom are on duty.
Recently I was in one of the exam rooms and the resident was collecting information about me.
He hardly looked from his computer.
I felt dismissed and lonely.
He left me alone saying he’d be back with the attending in a few minutes. I waited for what felt like an hour.
I try not to connect with my emotions when I’m at the doctor’s. I’m afraid that I will end up yelling and screaming at the techs and nurses that aren’t related to my case.
I don’t want to come across as a crazy woman. I need to be listened to, respected. And the only way that might happen is if I’m quiet and tolerate these indignities
I ate a snack, played 2 games of sudoku and texted friends, I even had to cancel an appointment.
Finally, the doctor came back with a trail of other resident doctors and the Attending. They all gawked at me because a person with my condition is rare.
‘So Kids Step Up, Catch The Show!’ that image of being the freak at the circus went through my brain. I wasn’t a patient, I was an object. (I feel like Exile and Pride, by Eli Clare describes this experience well).
The Attending doctor introduced himself and examined my skin and stated that they wanted to run further tests.
He threw around a lot of big biological and physiological terms that I did not understand and then, just like that, the original doctor and I were alone again.
He told me where to go for further testing. My head spun. I wasn’t sure why I needed this testing, and none of them bothered to explain why it was important. But mostly I was mad and hungry. I didn’t want to be a lab rat, I just wanted help managing my symptoms.
Why I knew better: visiting the emergency ward.
I woke up choking in my own blood.
I called 911 in fear. Eventually, the ambulance came.
They gave me a large amount of gauze to hold up against my nose, and took me to the ER.
Only 2 or 3 patients were in the ER when I arrived at 830am, so I had my choice of beds.
I got a bed right away but waited for help. Finally, a nurse came over and gave me some nasal decongestant spray, which stopped the bleeding. It was only flowing from my nose by then.
I was very relieved but still had was left with many questions that the nurse could not answer, so she suggested that the doctor could help. She said he will come over soon.
When he did, I expressed thankfulness but I explained that I see a rheumatologist and they mentioned that they had concerns about damage to my esophagus. I asked if my bleeding was related to this.
He just looked at me with a devaluating stare, he didn’t perform a regular check up of any kind.
He simply stated that he was happy that the heavy nose bleed has stopped, as if saying that would get me to forget about any other possibilities.
I am always very affected by decongestants, which then began to kick in. I felt dizzy, foggy thinking, and sleepy.
The doctor and nurse came over every twenty minutes or so, and it was about 12pm by this time.
By then, the hospital was feeling crowded and I was worried about catching COVID-19. After confirming that the doctor wasn’t willing to do anything more for me, I went home, frustrated by the lack of answers and upset by the doctor’s dismissal of my concerns.
I know that the doctors and nurses find it a little too easy to forget about me, or to deprioritize my worries.
I’ve experienced it first-hand.
Not only in these two incidents, but many other times as well.
I know that my time is considered less important because I use Medicare and that doctors are more concerned about studying my condition than helping me.
I understand that I may get dismissed for being a woman, or being black, or being queer(or all three), and that this is all part of systemic racism. But that doesn’t make it hurt any less.
Lessons learned from these experiences
My father died at least in part because he was prescribed an inappropriate medication. Given his heart issues, he should never have been given any form of opiod, and yet his doctor prescribed it.
As a black man, he was more likely to develop heart problems in the first place, and as a black man, he was less likely to have the open and detailed conversations doctors and patients should have.
The doctor(or office) either didn’t know or didn’t care that his cold treatment and his medical records were in direct conflict.
My family assumed that my father’s death was an unavoidable accident. I knew that it was more likely to have been the result of an oversight.
Not because I was more educated or more knowledgeable in general, but simply because I am poor and disabled. I’ve seen more doctors. I’ve been to more clinics, more ERs, more hospitals than the rest of my family combined.
And I’ve seen it. The avoidance of eye-contact. The lack of consideration. The void where empathy should be. I know it’s there, I’ve lived it.
I just wish that it hadn’t cost my family so much.