BMC FOR THE Culture
IT'S NATIONAL DISABILITY AWARENESS MONTH & THE BLACK COMMUNITY SHOULD CARE
March marks Disability Awareness Month in the United States. A disability is defined as “the experience of any condition that makes it more difficult for a person to do certain activities or have equitable access within a given society.” Disabilities can be visible (someone with down syndrome or a wheelchair user), invisible (dyslexia or diabetes), physical (an amputee), mental (PTSD) or a combination of all. According to the CDC, 1 in 4, or 26% of Americans identify as having a disability. As of 2021, that number included 5.5 million African Americans. Unfortunately, many black people are unwilling to disclose or have yet to have their disability diagnosed – and we, the black community, must change that!
The stigma associated with disability leaves many people, especially those of color in marginalized communities, hesitant to self-identify. That was my story until my disability became visible and could no longer be hidden. For many with visible disabilities it is difficult to accept that you are “different” and that you need certain accommodations to live a fuller life.
But what about those with invisible disabilities? Should those symptoms be ignored or hidden? “Despite the needs, only one in three Black adults with mental illness receive treatment.” That’s due in part to racial disparities in healthcare, but also the cultural stigma rampant in the black community. Only when those hurdles are jumped can we expect change and a better quality of life.
I was diagnosed with Multiple Sclerosis (MS) in 1992. MS is a neurological disorder that prevents messages from the brain from traveling throughout the body, making it difficult and sometimes impossible to perform certain neurological functions. It presents differently in every patient. For me it started as pain in my calves and difficulty going up and down stairs. Then I started to have trouble with walking, balance, and coordination. I was eventually confined to my bed for six weeks, paralyzed from the waist down. I was terrified because I had no idea what was going on and did not know if I would be paralyzed forever. My primary care doctor gave me little hope and when I suggested that it might be MS, he dismissed it right away. He told me that I was too young, and that black people rarely get MS. (Recent studies, however, indicate that more Black people have the disease than previously thought. In fact, the rate among Black Americans is consistent with the rate of MS in white Americans.)
I knew something was wrong and I was determined to find out what it was. The doctor finally relented and referred me to a neurologist. After many doctor’s visits and numerous tests, I was told that I might have MS, but they could not be sure until I had another relapse. The diagnosis process has gotten better over the years, but it is very important for patients, especially patients of color, to be their own advocate!
Fortunately, I began to get my strength back and was able to live a “normal” life as a young adult. Two years later, at the age of 24, I was diagnosed with MS. I had no idea what MS was or how my life would change. What I had heard about the disease, I didn’t like so I ignored it. When I was able to fully walk again, I left behind those doctors and my diagnosis and moved to New York City to pursue my dream of working in the music business. While that life was fun and I would not trade it for the world, I would have approached my diagnosis more aggressively; I wish that I had had access to other black patients with MS. This is why I chose to become an advocate.
As an African American woman, I did not want to be seen as “less than”. Being a black woman is daunting enough. I figured if no one knew about my disability, I would not face any discrimination or worse, pity. For the most part, I did not. But I did a disservice to my health and well-being by not educating myself on the effects of this disease. I refused to admit that I had it. I did not take the recommended disease modifying drugs I was prescribed. The things I did know about the disease, such as potential permanent paralysis, and the fact there is no cure, was enough for me to go into denial. Not only did I do a disservice to myself, but I was also a disservice to my community. How can we, in the black community, fix what we do not acknowledge?
During Covid, the disparities in healthcare between the black and white communities became more exacerbated than prior to the pandemic’s onset. According to the CDC, “African Americans, compared with all other racial/ethnic groups, [were] more likely to contract [the] coronavirus disease 2019 (COVID-19), be hospitalized for it, and die from the disease. Psychosocial, sociocultural, and environmental vulnerabilities, compounded by preexisting health conditions, exacerbate this health disparity.” These inequities are not new to us, so this data should not be surprising. What is surprising is that these disparities continue to grow in communities of color, and that is by design. There are laws passed every day to strip access to healthcare, voting, education, and free speech. All of which will disproportionality affect marginalized communities.
According to LawInsider.com, a Marginalized Community is defined as “a community who [is] subjected to political, economic and social backwardness, are not able to use services and facilities due to discrimination and persecution or geographic remoteness…” More than 400 years of racist institutions have marginalized the black communities here in the United States and across the African Diaspora. If you identify as a member of this community then you endure the most pervasive cases of PTSD (Post Traumatic Stress Disorder), generational trauma. It is our, the black communities’, collective disability.
Identify
First, we must IDENTIFY what it is and from where it comes. When most people think of PTSD, they associate it with veterans who were in combat. While this is true, the definition has expanded in recent years. “According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), PTSD results from exposure to trauma or feeling under threat of assault. It can also be a product of witnessing violence, particularly if it is happening to someone with whom you feel connected.”
The black community is exposed to countless micro-aggressions every day – being followed in a store by a salesclerk, witnessing police brutality in the media and in our communities or being told by doctors that what we are feeling (e.g., pain) is not real. It is the collection of these experiences that have been passed down from generation to generation. Where will it end?
Acknowledge
Second, ACKNOWLEDGE that it impacts us – that trauma exists. “Living with racism is a chronic stressor which is biologically burdensome and leads to some of the emotional and behavioral changes consistent with PTSD.” – Margaret Seide, MD. Identifying the root cause of this PTSD as racism helps to determine our steps moving forward. This racism shows itself as a series of structural, intentional actions – like laws to get rid of voting locations and drop boxes in marginalized communities. Or the redlining laws created in the 1920s and 1930s. Laws are implemented by those who benefit from keeping said communities in backwardness or moving forward. Those policies also lead to conditions such as homelessness, under employment, chronic diseases, social regression, and trauma, triggering by-products of shame, guilt and depression.
PTSD is an outcome of these systemic oppressive conditions established by the hierarchy. Since the beginning of time, those that hold the top rings of society must keep certain classes at a lower disposition to maintain their status of privilege. Those conditions have been perpetuated and led to many of the racist institutions we have today, like public education vs. private.
Acceptance
And finally, ACCEPTANCE. This is by far the most difficult step. In the seven stages of grief, this is the last step because it is a long and difficult process to get to.
During my career, I continued to hide the fact that I had MS until it became more difficult for me mentally and physically to do my job. I was eventually laid off from my position as director of marketing at Universal Records but was quickly offered another job with Queen Latifah. Because of relationships I had built throughout my career, getting offers was not hard – it was hard to turn them down. I knew I had to confront the realities of my limitations and I said “No” to Queen Latifah’s team. I was crushed! Not only because I love Queen Latifah, but it was one of the first times since my diagnosis that this disease had changed the course of my life. Had I been more proactive and upfront about my struggles there might have been a different outcome to that offer. Maybe I would have gotten to acceptance sooner? In any case, MS is my reality and after 33 years, I’m still pushing towards acceptance.
There is no cure for MS, yet, but the symptoms I endure from shame, denial, and PTSD, just like those of us in marginalized communities, can be managed. So, what are our options? What hope can we provide others in our community?
Multiple Sclerosis is not something that I brought on myself. Just like us as a collective, we did not ask to be put in this station. I have my days, understandably, when I question, “why me?” But I have made the decision to do what I can, when I can, for as long as I can.
As for the collective, we have not given up so far and now, more than ever, we must put in the work!