Mia Doreen George

Professor Meaks

ENGL 21001-R

CCNY: S-209

1/31/26

Introduction: For this assignment, I approached it with vulnerability, pondering on what community I felt belonged to me, and me to it. I landed on Sickle Cell as it is not only in my body, but also a vital foundation to my life. The community is just as vital, the most vital community I could have, that helps me navigate life with my ailment. I changed nothing for the portfolio as I was happy with my work, but in the future I’d like to perhaps add more statistics to drive my points on the disorder.

                                                     The Overlooked Shades of Red:

I see community as the culmination of people, coming together with a common idea that they work to manifest together, all while also supporting, as well as being there, for each other in the face of adversities and hardships. I see community as a second family, as well as powerful spaces of organization. The Sickle Cell Community envelops all of these aforementioned attributes. The community was built to aid people who have Sickle Cell. Sickle Cell is a blood disease that shapes normally round blood cells into crescent ones, leaving the blood weaker and more vulnerable to clotting and clumping, which can cause immense pain.

I remember when I was about 15. I had been going through my day at school as usual when I’d had a sickle cell pain crisis. My blood had clumped together and caused an increase of pain to surge through my leg and cramp badly. I couldn’t walk later on, in the midst of my day, and had to go home. I went to the hospital later in the evening and got stabilized to subside the pain. There, at the hospital, were nurses and doctors there to help me, but there were also companions within those very nurses and doctors. Familiar faces remembered me from my prolific history within the hospital. My week spent there included people coming to talk to me about my first pain crisis, giving me outlets to vent my fears within my own body, as well as distract me when I needed it. I felt safer and when I had left, I had left with well wishes, a small gathering, and a smile I worried I’d never get on my face again. 

The Sickle Cell Community looks to keep the conversations and awareness of the overlooked disease open to try to generate more needed funding for the research of the disease in hopes of finding a cure. The community looks for funding through federal advocacy, grants, as well as continuing the research into how Sickle Cell works and affects patients which is then shown in meetings to allocate more funding to patients. Through various patient care, making space for the emotions of the afflicted, maintaining medical conversations, and humanizing the disease. The community has been a crutch for me for so long in terms of allowing me to build my identity above sickle cell, making space for me to advocate for myself, as well as allowing me to have a safe environment to openly indulge in my emotions. 

In doing things like these for me and other kids, the community has single handedly forced the world to spotlight, see, and acknowledge Sickle Cell as a disease that belongs on the forefront of research for the betterment of those that have been afflicted. Advocation has led to better medications, funding, and conversations that don’t push Sickle Cell to the side. It has also led to more advanced innovations in treating the disease, such as gene editing therapy being discovered as a potential cure that is still being studied. Being a part of such a good community, that has done so much for the future of Sickle Cell, can be a bit scary at times because of threats of defunding by the government, due to the swaying healthcare decisions made by the government. Another worrying aspect would be worries of Sickle Cell continuously not being taken seriously in some spaces, as it is an undermined disease, etc. However, I believe continued communication and education can combat these issues. 

As someone who has been a part of this community for a very long time, I do worry that it will be wounded by the external forces it interacts with. I believe the Sickle Cell Community is the light others afflicted with the disease need in the darkness of the ailment. A light to look to, a light to reassure any worries, and finally, a light to pick you up when you are too pained to walk forward.

• Mia Doreen George