In these past few weeks, nay, months- I have been encountering challenge after challenge with my lupus symptoms. The disease has a funny way of manifesting in different or all parts of your body sporadically. One day you are fine, the next day you have limited mobility. One day your energy is at an all time high, the next day you can barely get out of bed. My newest symptom is sharp pain in my left foot that doesn't allow me to walk without hobbling. In NYC, I feel like a lame duck, a pariah. There is no sympathy for the disabled. No one tries to help me with my bags- in fact, I am inevitably whisked by with aggravated grunts. If they could step on my foot to get one second added to their commute time, I am almost certain that "some" people would. It is frustrating to have bus drivers tell me that I had plenty of time to get off the bus and to have to divulge that "I have limited mobility" which is met with a grunt...and then backtracking moments later. They want to know why my pain is not more visible. Why don't I have some wheelchair or cane or something. Well, because my wrists are affected alongside my feet...and it can last for hours, days, weeks...I never really know until I open my eyes in the morning. The cage of pain- I like to call it. When I wake up feeling a huge weight around me...intense pain--like I can't move. I remember this cage well---back in 2005 when I was depressed with my job, my relationship, and life in general. Sometimes I just could not get up...Black Pain by Terrie Williams addresses this and the mask we as African-Americans wear to cover all the internal, emotional pain. We don't know what it's called she says--we don't have time for it, my own mom has said to me. Williams says that depression is a "white woman's" disease to communities of color. Hm. Noted. I used to buy into that whole idea of communities of color buying into this whole martyrdom thing. It's an actual theory you know...but as I do research for my independent study on perceptions of pain, autoimmune disorders Lupus and Fibromyalgia and the perpetuation of the pain cycle due to the perceptions of the medical establishment and community members, I see that there is something else more substantial than just being masochistic or seeing ourselves as some sacrificial lamb.
Yes. I said it. It has been expected of us since we were slaves, crossed borders as immigrants, refugees, etc. Our ancestors were denied their humanity and in this, they were also denied their experience of pain. Chattel don't feel pain. They are inhuman. Strong pack mules who serve their purpose and then are discarded. We internalized this and--Williams says that this is passed down throughout generations creating this cycle of how we view ourselves and our pain. Do we think we deserve it deep down? Is it something we just have to deal with...like those slaves who picked cotton and were lashed at or those house negroes who expected to be raped night after night by the master...or those immigrants breathing in pesticides daily as they tend someone else's crops, provide food for others when they barely have enough to subsist.
How does this tie into illness you ask? Debra Walker King, another phenomenal author, talks about the tripartite---mind,body, soul. This sense of wholeness. When we are wounded...when our souls are wounded- this wound manifests in our body and our mind and as Williams noted, it is passed down from grandparents, parents,etc. These wounds are inherited. So...now you understand why I might get a little upset when white folks tell us that slavery happened over 400 years ago and we need to "get over it" or when they call brown people "welfare queens" or say we need to "pull ourselves up by our boot straps." What if we never got a pair?
Is it any coincidence that women of color (and more disproportionately and specifically, black women) have the highest incidences of autoimmune disorders that are associated with chronic pain (for example, rheumatoid arthritis, fibromyalgia, lupus, etc.) And thinking back to the history of the inaudibility of women's voices and the intersections of race and gender and the implications of how silence and silent pain manifests itself---does one have any doubt that it plays some role? Physicians are predominantly white. The health care system is set up for who? Who goes unheard? Who stops going to the clinics because of this? Who experiences the most disparities? The most fatalities due to going in "too late"? The book Medical Apartheid addresses the roots of mistrust within the black community of the medical establishment. And it has a focus on the egregious violations of medical researchers against black bodies. It goes much farther than Tuskegee, folks. From gynecological experiments, to genocide, to viewing those infected with tuberculosis and HIV as criminals--and black and brown bodies being seen as pathogenic to white,innocent, pure, healthy bodies.
To say that we are in a post-racial society after all the endemic implications of racism perpetuated for hundreds maybe even thousands of years is ridiculous and beyond naive. Just because we want something to be so...doesn't make it so. Just because the Civil Rights Movement happened, doesn't mean racism or xenophobia or any other oppression was eradicated. Paradigm shifts are needed...a shift in consciousness is needed both in white folks and people of color. We have to stop perpetuating this and this cessation comes from addressing internalized oppression and the way it manifests itself. Health disparities are a manifestation of oppression...both internal and imposed on us by others. We feel that because we are people of color that we just don't get the same type of access. It's unfair- but what can we do about it? The government helps us, right? Medicaid and Medicare...which are far harder to access than society would lead us to believe especially if we live in states like Texas who don't want the federal government involved in any of their affairs. But let's move on....for now.
In my own journey...discovering the ability to heal myself after years of invisibility, voicelessness and confrontation in the health care setting has been both frustrating and empowering. Disheartening and Inspiring. It is no coincidence that the moment I started to learn about my heritage and the ways of my ancestors and who they really were, that I started to heal in many aspects of my being. It all goes together. If we don't know our roots...if we don't respect that tree...those people before us...if we pick at the branches and leaves but don't examine the roots--- I ask you, how far will we get?
Assimilation is making us ill. Acculturation is making us sick. The denial of the existence of brown bodies in white spaces is giving us high blood pressure....the microaggressions (See articles/books from Dr.Derald Wing Sue) that people of color face multiple times daily are killing us inside, literally. Of course our minds aren't right- so our neighborhoods aren't right-- so the messages in our music are at times degrading and we seek self-worth from our clothing, jewelry and cars,houses. We are trying to find our worth...and seeking happiness because we are unhappy and sick. Sick and tired. Sick and tired of being sick and tired. So when our body ...our limbs, muscles, joints just won't work anymore and that white physician looks at us dead in our eye and says it's "growing pains" or that it's "normal" --doubting what we are feeling day to day, not only does it play into the denial of our voice, existence in so many other white spaces and our perceptions of Self and others in our community, etc...but it also contributes to our silence, our not showing up to appointments...our hidden despair and our mask of being a superhero. (See "Black Pain" for more on this mask).
On being a superhero...My father maintains that there is a reason that Africans were used as slaves. He says they were strong, intelligent, healers. They were viewed as a "superior product". I've been processing that as I've been trying to write a poem called "airplane" which talks about white people's "entitlement" to climb over and above since they view themselves as having "less baggage"...you know...better communities, education, medicine- you name it. He wanted me to tell the WHOLE story. To talk about co-optation of our culture and envy of who we are as a people. Also, I've been watching documentaries like Afro-punk and Electric Purgatory and it has cemented that knowledge about how our music was co-opted. Blues, Jazz, Rock, Punk...stolen from us. Now- I believe that art should be shared and we should learn from each other--but that's not what happened with black music. It wasn't credited and it was bastardized and thrown back in our face for a profit. Black musicians lost legitimacy and the music became inauthentic and hollow. Also, black and brown people's history has been handed to us for centuries by white colonizers and we are expected to smile and say "please and thank you" (see my poem "Intentions"). Then when we gain some knowledge *true knowledge* we are called angry and ungrateful. And at worst, we are called bad historians who are making things up because we are inferior beings and want to be white. Well if that's not the projection of the century, nay, millenium.
Ok, ok I'm getting off my metaphorical horse...in a second, in a second. So- healing ourselves is empowering and has been since the beginning of time. Especially for brown folks- you know, people of color. We respected the earth. Treated ourselves holistically. Didn't slaughter meat for the sake of greed and profit. Paid attention to our emotional, physical and spiritual health and saw this all as a union. As a whole. You see how everything we do now is the antithesis of who we *were* as a People? Of course we're sick. Sick and tired. Sick and tired of being sick and tired. Our ancestors weren't overworked until they were expected to adhere to the world of the white man. To mold our perceptions, concepts, and worldview to that of his. An example of this is time...and time management. Every single person of color, no matter what their ethnicity, has the concept of "color people time" or CPT. Isn't it odd that we outnumber white people yet our concept of time is in the "minority"? Well, because they run the businesses, the hospitals, our liiiives. Mhm. I see. What we eat-- is what white men deem nutritious or maybe not even that--let's go with satisfying. Certain diets- are for white people. True story. The medicines that they give us that make us sick...the research they do on diseases---are done predominantly on white people. I could go on and on...write a series of books on this- but they already exist. The knowledge is out there. The question is...what do we do with this knowledge? How do we empower ourselves and come together to say enough is enough? How do we get back to our roots and heal ourselves of these disorders and stop listening to the erroneous information that is clearly not for "us". How do we acknowledge this emotional and physical pain that we've been trained not to for so long? How do we eradicate this inherited pain and self-hatred? We can't do it alone- that's dangerous. We need the whole community to be aware so the cycle STOPS.
And most of all we need our white allies to be actual allies who continuously acknowledge their privilege and strive to check it daily. We need our white allies not to co-opt our status, occupy our spaces and judge who is a worthy person of color due to actions taken or perceived not to be taken toward the obliteration of internal and external oppression on our parts. We need our allies not to use labels like "liberal" and "progressive" and turn around and perpetuate hatred and oppression under the guise of "good intentions." We need white allies to understand that being an ally is not a one-time badge...but a life-long process. We must all come to an understanding. Black folk, brown folk, white folk---folks! Our experiences are NOT the same...Color-blindness = assimilation and is an excuse not to recognize cultural differences. It's a type of microaggression. Racial microaggressions are subtle and happen daily--especially in the medical setting. Sure, being told I am loud on the train or the denial of my existence in predominantly white spaces in Westchester county is an annoyance---but physican's assuming I have sickle cell anemia and misdiagnosing my lupus and thalassemia for three+ years, or assuming that I am not in as much pain as I say I am and that I am drugseeking because I am "black" is a serious,serious problem. It took the white female director of my program asking for pain meds at a doctor's appointment with me before I actually got a prescription. !!! Yea. Denying me the best care because of your internal racism, rampant assumptions and biases and unchecked privilege is not..."o.k." Just because a physician or medical social worker thinks they can leave their biases at the door before they enter work does not mean that this happens. It is highly illogical...
Back to my allopathic healing or lack thereof- Anti-malarial drugs and chemotherapy drugs to "manage" not cure my lupus symptoms are ridiculous. They want to suppress my immune system and kill my cells not even to heal me? To not even address the root cause? Which inevitably is tied to environmental pollution and stress of being a queer, brown (seen as only black) person in a white world??? Get out of here.
That is all.
There's Hope- India Arie