Dear Professor A,
You represent all of the educators who, like you, have chosen to have one of the hardest, least credited jobs there are. You represent the ones who have taught me about cells, body systems and the damage that can be done to them. You represent educators who have shared their love of science and instilled it in students like me. You represent the ones that who have taught me to question everything and to share my knowledge with others.
You also represent all of the educators I have ever had who taught me about sickle cell anemia in an non-empathetic way. You represent the professors that who cannot help but state that everyone who has this disease dies from it. You represent the problem I have with people who speak so insensitively and inaccurately on topics they have never dealt with first-hand or even interacted with someone else dealing with it.
I sit in my science classes with awe and a lust for knowledge in my eyes. Yet, year after year, the awe and lust fades as we begin to study everyone’s favorite example of balancing selection or a point mutation: sickle cell anemia.
I have been learning about sickle cell anemia, or sickle cell disease, since I was first diagnosed with it when I was seven years old. I did not understand how I could be born with SCD, but just now have an attack. The doctors told me that the onset of symptoms is not always immediate. They also told me that my Nigerian heritage made me more likely to inherit the disease. Then, supposedly for my benefit, I was assigned a psychologist whose job it was to tell me all the different ways the disease could kill me and then assess how I was coping with that fact. What seven-year-old wants to hear that?
I did not let my psychologist get to me. Though I dreaded having to go to the doctors, I understood they were just doing their jobs. Even when I was in the emergency room, I still understood. I would wait in pain for blood test results to decide if I was in enough pain to be admitted or not, since my pain was not visible. Yet, the worst part of it all was not having to stay in the hospital for weeks or being unable to use my arm, leg or back because of a blood clot. No, the worst part of being admitted was always missing school. But, at the same time, the anticipation of going back to school was what got me through.
Eventually, I would get released from the hospital and, after regaining my strength at home, I would be able to go back to school. I was excited to be in my classes, talk to my teachers and friends and learn something new. During the first few days of being back, it would be difficult for me to catch up. But, I never wanted special treatment, so it did not bother me when my teachers told me I had to catch up on my own time. Though the hospital’s approach was problematic in and of itself, and for a period of time there were difficulties in catching up with my schoolwork, I had to deal with your insensitivity on a regular basis.
What really bothered me was having to sit through an insensitive lecture about sickle cell anemia, especially just after having a sickle cell attack or crisis . I know your job is to teach the information in a factual and scientific manner, but even that is problematic. Science is not immune to being biased. Everyone, especially educators like you, needs a lesson in how disability is socially constructed and how their word choice further disables people. Every time I heard the word "sickle" in class I had hope that maybe that time it would be taught differently, yet every time, I have left the lecture feeling disappointed.
The one time I was not disappointed was by my ninth grade science teacher, Mrs. Benner. I had discussed the fact that I have sickle cell anemia with her prior to class. Not only did she empathize with me, she thought it would be a good idea for me to explain to the class how sickle cell anemia affects me and provide my own definition, if I was comfortable doing so. The next class, I actually got to share a part of my identity with the class and teach them about the disease in the way I wish everyone else would speak about sickle cell anemia as well. That only happened once though — all the other times I had a professor like you, Professor A.
Why is it that almost every time I hear “sickle” it is shortly followed with “lethal”?
I used to wonder why people would look at me in confusion when I first told them that I have sickle cell anemia. Now I know it is because they either never learned about the disease in the first place or they do not remember the two minutes most of their science teachers spent discussing it. The few people who do remember learning about the disease look at me questioningly, and I just bet they are thinking: but wait, I thought that was lethal or doesn’t everyone die from that? Not only have students asked me if I meant I had the trait and not the disease, but educators like you have asked as well — as if there is no way I could have the disease and be capable of regularly attending classes, getting good grades or even living.
There are also problems associated with the way the larger society talks about SCD. One problem is the lack of empathy for humans diagnosed with sickle cell anemia due to a lack of knowledge of how the disease affects the ones who have it. People seem to think it only affects Black people, but that is an untrue stereotype. It is easy for society to ignore this disease because it majorly affects a minority that has already been and continues to be “othered.” The truth is sickle cell anemia is a blood disease that can be passed down to anyone.
It should not matter that I was born in Nigeria or that my skin is Black. Do not tell me or others that SCD is only found in Africa. Do not marginalize my experiences or my pain because of my race. Do not put SCD on the periphery of your awareness simply because it does not affect you or anyone you know. SCD and other “minority” diseases deserve as much attention as cancer.
Furthermore, the Sickle Cell Disease Association of America (SCDAA) notes that Sickle Cell Disease (SCD) affects both children and adults from Africa to the Americas, the Caribbean, Europe, India, Sri Lanka and most countries in the Near and Middle East. The SCDAA also mentions the presence of the disease in the Portuguese, Spaniards, French Corsicans, Sardinians, Sicilians, mainland Italians, Greeks, Turks and Cypriots. Though the myth that only Black people get SCD is not true, even if it were, that is not an excuse for neglecting explanations of this disease.
The disease should be taught in a humane way no matter who it does or does not affect.
The New York Times understands the prevalence of the disease. Carolyn Sayre, writing for Times Essentials, states that “Sickle cell disease is the most common genetic disorder in the United States” and that “about 100,000 Americans are thought to be living with sickle cell disease.” Most importantly, she states that “Sickle cell disease is chronic but treatable and not a death sentence” Sayre understands, yet you do not seem to.
Think about the students who look up to you and believe everything you say. Just think about how what you are saying is ruining the faith of so many students. Through volunteering at C.S. Mott Children’s Hospital and staying in the Detroit Medical Center or Beaumont Health System for two weeks at a time, I have encountered patients who would rather stay in the hospital than go back to school. I was fortunate enough to have parents who instilled a love of learning in me at an early age, so I did not let society bring me down or stop me from pursuing my education. Not every student is as fortunate as I have been. These students, like me, have been and continue to be disappointed by the actions of educators like you, Professor A. For those students, thoughts of fatality are reinforced in school so that they begin to prefer being in the hospital rather than facing the harsh reality of society. Think about how you are disabling those students from pursuing their dreams, as if they did not already have a disease that disables them.
People like you, and most of society, seem to forget that disability is not something that only affects certain people but rather something that is much more fluid. People can and do go from being fully abled to disabled, or vice versa. Maybe that is why people like you are so afraid of talking about the humanity of disabled people. It is ironic that disabilities are so common, yet so overlooked.
You contribute to society’s problematic system of condemning people with disabilities. You contribute to the dichotomy of labeling someone as disabled and not bothering to learn anything else about that person, or applauding someone for battling their disability in a way that is “acceptable” to broader society. You contribute to society’s tendency to forget that disabled people are still human and that there is more to them than their disability, no matter how permanent it may be. You contribute to how society keeps disability in the shadows when it needs to be brought to the awareness of the public domain. You contribute to society’s need to “other” those who deviate from the norms society is comfortable with and deems acceptable.
By your inability to teach SCD in a humanizing way, you are continuing a legacy of stripping agency from people who are different from the socially constructed “norm.” You have failed not only your students, but also the educational system you should be committed to improving. It is not completely your fault, however.
Another problem is the continuous cycle of teaching that the sickle cell trait is good for counteracting malaria, but sickle cell disease only kills. The cycle of teaching stereotypes so deeply ingrained in society, like the notion that only Black people have SCD. The cycle of jumping to conclusions about a disease without ever meeting or talking to someone actually affected by it.
I am sure you were once taught about the disease in a way very similar to how you taught it to me. There is hope, though. You can break the cycle. Teach yourself and your students about sickle cell anemia in a different, more empathetic way. Listen to how it affects me, a student with the disease. Though I appreciate all that you have taught me and look forward to all I am yet to learn from you, it is my turn to teach you something, and I have a few suggestions for you:
Do not simply define SCD as a deleterious point mutation.
Do not just teach SCD as the prime example of balancing selection.
Do not immediately point out that SCD can be lethal.
I suggest a more holistic approach to teaching sickle cell anemia. Provide an example of a human being with the disease or bring someone with the disease in to talk about it, like Mrs. Benner did with me. Bother to mention that although it may be lethal, people with sickle cell anemia can live fulfilling lives and grow old, like I intend on doing.
These suggestions may seem to be relevant to only you, Professor A, but they are important for the broader domain of teaching the sciences. They are crucial in terms of today’s concern over how human diseases and disabilities are made into scientific problems that must be resolved. Ultimately, what is at stake here is the humanity of people with any form of a disability, including any disease.
For the sake of a girl who loves science and anyone with a disability, no matter how temporary or permanent it may be, reconsider the way you teach things that affect humans.
A Nigerian-American student with sickle cell anemia