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.
When I was in college, a friend and I were the co-organizers for a celebration to welcome our new college President. Me, my friend and the incoming President were White, and most of the coordinating committee were also White. The prior President was Black, and there was disappointment among some students that the new President was also not Black and hadn’t been overly supportive of racial and equity issues.. I thought I was relatively close to friends in the Black Student Union (BSU), as I had marched with them against Apartheid and other issues. But, on the day of the celebration, at the beginning of the event, about 20 BSU members entered the room with picket signs and loudly noted their disappointment with the new President. I was shocked and appalled, and felt betrayed by my “friends.” Years later, i came to understand that I had the advantage to host this celebration, and did not consider the needs of Black and other students. This event gave the BSU a space to have themselves heard, and they made the news the next day- not the positive story I had anticipated.
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.
I would like to share an example that involves children to note that inequity often begins early on.
Many families in our own communities struggle everyday with virtual school, because they lack access to reliable internet connections, computer equipment, technical skills, adequate space or privacy in the home or simply having someone available to guide them through it. Other families do not have these limitations, and therefore their children are more likely to succeed. In some instances, children who are struggling may unfairly be labeled as difficult, disinterested or lazy. The playing field is simply not level.
At such a young age, these children are already experiencing the harsh reality of inequity.
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.
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.
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.
Last spring, prior to the pandemic, I volunteered as a teaching assistant at a prison that offered some inmates the opportunity to receive an associate degree. In order to be eligible, there were requirements such as not having had an incident in the past 6 months. Despite the majority of prisoners being Black, my class only had 3 Black students of 13 students total. This represents inequity because in a prison where less than 25% of prisoners are white, white prisoners represented over 75% of this class, a class which was designed to create more opportunities for them upon release.
My son’s father passed away due to complications from COVID….he was exposed (on his job at the water utilities department) while working in very close quarters with a contractor who had tested positive for the disease. There is no hospital in the rural county where he lives, but he was transported by ambulance to the closest facility about 30 minutes away with obvious signs of apoxia, O2 levels well below the 94% that most acknowledge as a threshold for concern. He spent about 6 hours in the ER before he was moved into a room…on a regular floor (where the nurse to patient ratio is much lower). He was ultimately moved to ICU, intubated, and…there is actually no “and,” there’s a “BUT.” But, he died.
My son’s dad fought, my son fought for him….finally getting eyes on his case after a personal friend of his called the CEO of one of the largest health systems in the country. That gentleman reached out to the CEO of the hospital where his dad was a patient. Several specialists were consulted. All of this after 8p on August 25th. They all said they wish they’d consulted on the case sooner…it was too late. We know that because he passed away the next morning on August 26th.
During the pandemic, there continues to be a gap in access between “the Coast” and “the Glades”. When the began to offer COVID-19 testing at the Ballpark and Delray, it was almost 4-6 weeks later until testing was available in the Glades. Now with the vaccines, the same thing is happening again with Glades not being given “access” because we don’t have a Publix in our community.