One more story.
This is also a short story.
Years ago I did a home visit for a middle school student who cared for her grandmother. When I arrived, she was also caring for her cousin who was 2 years old. Her cousin was missing his hands and feet. At some point, the mother arrived and shared the story of how her son lost his limbs. She shared he was sick, and she went to several er’s and was turned away and accused of abusing her son as his limbs were black and blue. Eventually her son was received at a hospital, and was eventually diagnosed treated for an infection, eventually resulting in the loss of limbs. I always wondered if this mother was taken seriously at the 1st hospital, and her son received the appropriate treatment in a timely manor, would he still have his hands and feet. This experience demonstrated to me people may have a difference experience when seeking medical care based on unconscious biases people have.
A friend is Bahamian, her husband Black. They live on acreage and her husband was by the road repairing their gate with their teenage daughter. A police car stopped and asked him why he was in the neighborhood and made him prove that was his address. The daughter was horrified and scared to death for her father. Both parents are professionals in the community.
A local nonprofit serves many minorities who are financially challenged. Those served come in sicker and with illnesses that have to be treated more intensely because of their limited access to healthcare services.
When I was in college I wanted to study abroad. I completed my application and submitted all of the necessary papers. However, my advisor did not support my interest and he actually did not provide any information for me to review. My advisor told me that was not a good fit for me and that it was too much for me to handle with my course work. I had to do my own research for opportunities such as exchange student and scholarships. I did not know the process or where to begin, it was really discouraging at 18 years old. My roommate had the same advisor and not only did he encourage her, she was provided informational packets and then shared her excitement with me. Well, guess who announced that she was selected to study abroad the following semester with all expenses paid. My college roommate! The information that she received was not available for everyone and it was totally unfair. Inequity on so many levels. I had a higher GPA than she did, I expressed my interest and she did not but, was chosen! Information was not shared with everyone and the selection was bias! Application process was never shared!
While at a conference, that was primarily attended by while colleagues, I was often in spaces where I was the only black person. on one occasion the conversation drifted to childhood and upbringing and even how the majority of my white colleagues raised their children. It amazes me how much they had access to. how much more of the world they were exposed to and how race wasn’t a constant conversation in their home. It makes me jealous and joyful at the same time. but that access/equity will never sit well with me
I have sat on a few county wide conversations, some of them are focused on equity specifically and the idea of community led processes, but by no means is truly that. What has been really frustrating is to hear people prescribe solutions to the community. For example, the Barbershop talks are becoming a best practice, and organizations/system leaders want to force their messaging onto communities through this venue, rather than working with them to co-design what the barbershop would want. Additionally, yoga is promoted as such a huge mental health benefit to our community, everyone is talking about the benefits of it, but does our community feel comfortable in the current yoga spaces? Are they prescribing this solution without asking if the community wants it.
I am a 51 yo African American woman who is well-educated, gainfully employed, and fully insured. I live with a chronic condition, systemic lupus erythematosus (lupus) which causes severe joint pain and a host of other challenges. At different times, I have gone to the ER…typically after consultation with or at the direction of my rheumatologist. I have come to loathe these experiences because I have often been questioned to the point of interrogation BEFORE my pain is addressed (if it is addressed). Sometimes it is only after lab work reports high markers of inflammation that my account is ‘confirmed.’ Other times, I have been dismissed until my physician has been consulted or intervenes on my behalf. At the same time I know there are people who receive more attention for hang nails. It’s maddening. Though I have access to health care, I cannot access health care.
For those individuals seeking SSI-Disability Benefits, individuals who can afford to hire an attorney to advocate and complete forms, and work within the system are two times more likely to be approved for benefits on the first “go around” that those who don’t and definitely increase the approval rating when reapplying after initial denial. However, those who are really in need of guidance, often have lower incomes (if any) and cannot afford or have the ability or access to easily obtain legal counsel. Once approved for benefits, the waiting period for health care access and services through Medicare does not begin until 2 years after approval — a time when many need it most. “People who will become eligible for SSDI benefits are significantly more likely to be uninsured than other workers—an average of 22 percent over the three years prior to SSDI entry, compared with 16 percent in the general population” with the likelihood “living in a family whose income is below the federal poverty level being twice as high among people receiving SSDI benefits as among those who have not yet become disabled” The cost of coverage through COBRA is “cost-prohibitive” for many of these individuals.
Many individuals and families absolutely give up even trying to obtain these benefits even though they are entitled to receive the funds and critical health care services.