Some Things You Oughtta Know

I'm going to be honest right now about my situation. This week...I am selling my services/writings for survival. Perhaps honesty is the best policy because 1266 people on facebook saw my post about the Genderqueer Files episodes and I have yet to sell a single download on etsy. (By the way- it's a .pdf file...you don't need a kindle or any kind of fancy reader besides adobe.) 

It's been really difficult and I'm really dealing with a lot of emotions around self-worth as I find it harder and harder to find a job and people look at me as if I'm not pulling my own weight in life because I am an organizer and an artivist. I spend about 20-30 hours a week organizing in various connected movements. Salary=$0. People say..." Well stop organizing and go get whatever job you can get to sustain yourself". And I think to myself...'Geez I never thought of that'. 

Of course I've thought of that.

Of course I have. 

I've applied to grocery stores, retailers, custodial jobs. I know it's a tough market but there's something else complicating my search. It's the fact that I'm brown and genderqueer in a racist, homo/transphobic pseudo-liberal pseudo-progressive town (called Austin). People like to act like something is wrong with me because I have this experience and these qualifications and can't get a job. And though deep down I know that systemic oppression has seriously limited the jobs I can have in life (or is it just in these pseudo-liberal towns?), I just keep internalizing the rejection experience and white people's judgments (because my experience is not their experience, so it must not be true or valid) and my family's judgments until I start to ask myself “What is wrong with me?” It's really psychologically, emotionally and spiritually damaging.

I try to pull myself up by the bootstraps I was never given and instead of complaining about this racist, transphobic, pseudo-liberal, pseudo-progressive town that will not hire me no matter my qualifications because of my marginalized identities, try even harder to sell my writings and pull my weight if you will. But all the while I continue to internalize that many people don't think that artist's work is valuable and believe that it comes easy to us and that it should be free. 

I struggle constantly with wondering if my work has value and it's the people I meet in person at book fairs and on tour that remind me that it does resonate with some people. I get affirmation that my work does matter, even if it's not sustaining me the way I would like it to.

It's damaging when our communities seem to want organizers, activists, artivists, etc. to do all this work x3 for free.99. That also goes for submissions  to publications and workshops and donations to archives and projects. We know that funding is scarce but we've got to try to work harder to find ways to pay people or make even exchanges. Also, organizers who are parents need support. People who are sacrificing a ton of time for their community and who are getting burnt out, need emotional, psychological, and spiritual support. Community members who can't eat or pay their bills yet work 2-3 jobs need financial support!

I have to say that it is really disheartening feeling like when I actually try to “earn my keep” by selling my services/my writings/art, etc. to survive- that people are turning up their noses and thinking I should just get a “real job”. I know I don't work at an office or a restaurant or whatever institution, corporation or non-profit but it is mentally, emotionally and spiritually exhausting work to organize across issues/movements, write, continue my education as a healer, provide resources to multiple communities, support my friends and created family's emotionally and spiritually, AND manage my lupus symptoms and take good care of my own self. 

If this strife sounds normal to you and you are thinking what my mom always says when I tell her about being overwhelmed with pain or stress- “And?What else is new?” - there's a serious problem. We should not be running ourselves into the ground, folks. We should be supported in using our gifts, skills and abilities. If we have the time to step up and organize within our communities, we should not be left in the cold when we need emotional, psychological, spiritual or financial support ourselves. We need to hold each other accountable for this. No one should be left unsupported.

It makes me extremely sad and upset when I think about my financial situation and my inability to sustain myself despite how hard I work to support myself and others. I think about how just 2 weeks ago, my health “insurance” (it's really from a charity/foundation) was taken away and when I went to pay for my meds- I had to tell them to recount them and only give me a months worth because now I couldn't afford it. Or...I think about how I've had this infected tooth for months now...and 2 dentists that help lower income folks said they don't do root canals, but that they'll pull the tooth (which I've had happen waaay too many times over the last few years due to my economic situation)- and another charitable organization that does sliding scale fees said the minimum amount I could pay is $400-500. Yea- I can't afford that. I can't afford my rent this month. I can't afford to apply for residencies that might help me to be able to focus on my art and organizing. 

I can't focus on my writing and all these ideas I have for sharing knowledge and co-creating vibrant communities because I feel so broken spirited over finances and am constantly having these negative, circular thoughts about my worth and am trying to strategize about how to hustle and make rent and feed myself- and from that dark place.

I broke down in tears just yesterday because a friend reminded me of my steady commitment to providing resources for my communities: workshops, skillshares, constant, tireless organizing across issues in different movements, healing work and the emotional support and overall investment I've made and yet...I am still here struggling and barely surviving and finding it hard to pay for my life-sustaining medication and rent. All the while trying to keep resources accessible to those in my situation...those of you who look/are like me or who are in similar situations to my own.

The point my friend was making is that our communities need to do better in supporting each other physically, emotionally, spiritually and yes, even financially. I see many of my artivist and activist friends struggling to survive, just like me. You may see them everywhere online or in person but that does not translate to economic stability. It actually more than likely means they are hustling and on the grind and probably struggling and trying to survive.

Writing/making art is a full-time job (on top of other jobs) for many of us...and not just a hobby. It is extremely hard work. It is mentally, emotionally and spiritually taxing, especially when we're writing about difficult themes like oppression and liberation or calling out colonialism and systems of oppression and oppressors. Some of us even get threatened and run out of town.

It took me over a year to write Genderqueer Files: La Qolectiv@ and I was working full and part-time jobs on and off. Part 3/Act 3 is still not completely to my liking and I still have so much work to do on making it a community workshop and a novella so people can engage with it's themes and not have to be reading through stage directions. I am also working on a number of other resource guides like Queering Herbalism 2, zines about decolonizing food justice and white supremacy in pseudo-liberal towns, wellness fairs, herbal freedom school workshops...and much more.

True, some folks might just not be into reading a story about brown queers or reading about q/poc and holistic health or zines on anti-oppression. I'm challenging our Q/POC community and allies to be more supportive of art that centers the experience of queer and trans people of color. There's not a whole lot of it out there...there's more than there ever was...but it's still not enough.

I know that some aren't financially able right now. But those of you who are, please see and respect that this work is valuable and that we artists/artivists/activists need to survive and can't write or give all our writing/art/services for free. Many will attest that I do at just about every event but this isn't sustainable.  Printing costs money. And I've spent many hours writing, researching, and organizing non-stop and it deserves to be compensated just like anyone else who is working a 9-5 or over a 40 hour work week.

It is hard for some of us to reach out to our communities for support because we're afraid we'll be judged or rejected. I know this is true for me. I am writing this because I have no choice but to reveal my vulnerability and to let you know that I struggle just like you no matter how many hundreds of people around the world read my writings. I am the embodiment of many of those statistics about brown, queer people who can't get health care or who are unemployed due to discrimination. I am the embodiment of those statistics about transfolks of color that you read about online or in class or talk about with your rad buddies over dinner. Even if I am sitting with a bunch of middle class, educated organizers and activists who make assumptions that we are all thriving, that is not my story. That is not my reality. I am barely surviving and fighting to exist. Fighting to not be erased every day.

Thanks for listening. Reaching out like this has been really healing.

Here's more information about the Genderqueer Files episodes:
http://www.afrogenderqueer.com/#!genderqueerfiles/c160u

You can purchase Part 1 episode 1-3 HERE until 12/15. Part 2 episodes will be up 12-15 til 12/22.

My other writings can also be found on the Etsy website. And you can get printed versions of my writings (*everything except Genderqueer Files and Queering Herbalism) through the shop&cart page on the afrogenderqueer website HERE.

And if you have found value in my writings or in the free resources I've compiled (on queerherbalism.blogspot.com)but you aren't interested in buying anything but still want to support, there is a donation button on the afrogenderqueer webpage HERE.


Email me for other purchase options/methods of payment.

Thank you again for reading/listening.

Toi
AGQ
Philosophactivist

Prednisone (a corticosteroid) and Dating

Prednisone and Dating

It took me a month or two to start the corticosteroid prescribed to me by my hard-of-hearing rheumatologist. I was terrified of the physiological changes that would happen but even more terrified at the sound of urgency in everyone's voice when I told them that I had not started the drug yet. Though everyone acted like it was no big deal...it was a huge deal. My “condition” was worsening. I could barely walk. Sometimes I couldn't put on my shirt or tie my shoes. I ached all over and seriously wanted it all to end. Wished it would end. The pain was so unbearable and indescribable. It defied all language. So...I began the medication at what I was told was not a high dosage. It changed my behavior almost immediately. Some nights I'd feel like I was on speed and I'd dance at midnight for an hour or so non-stop. Sometimes I'd have splitting headaches or my throat would hurt. Sometimes my stomach hurt. I got these raw spots on my tongue. I cried for no apparent reason.

And then I met someone.

Ahhhh! I thought...maybe I shouldn't date anyone right now. I don't know what other side effects there will be. But she was awesome and there we were. I tried to be as honest as possible about the new medication and the way it made me a little weepy. My pain was still around and she ended up steping into the role of caregiver quickly- soaking my feet when I couldn't walk (about 3 weeks into our relationship). Immediately I felt ashamed. She took care of someone else all week long and now here she was caring for me. I have always been so independent. I really, really tried not to get help from anyone after I became sick and to my own detriment a lot of the time. My mentor once told me to stop being so butch. Ha! If she only knew that I was just being a boi. But women do it, too. I feel as if all genders go around not divulging how much pain their in, emotionally, physically, etc.  Especially if they are people of color.

So we continued dating. I was finishing up grad school and was super stressed and still hurting. I couldn't be all that I wished I could for her. I was pulled in so many directions. Sometimes I was irritated. Sad. My parents were in complete denial, only a few family members knew and I felt alone. There were so many ups and downs. I had spent a whole winter with this pain...and was now trying to figure out how to manage it and how to heal and- how not to let it affect love with all of this going on in the background. But with her I felt euphoria. We went to performances, walked around town, watched documentaries and spent whatever time we could with each other. Usually weekends. I can't even explain to you how awesome this woman is. A family-oriented, organizer of so many different causes. When I went into these schpiels about race in academia and in my community, she totally got me and I was in awe.

I thought I was doing a great job juggling my illness, school, and romance through the Spring. The meds made me feel ok and I'd gotten a great homeopath whose remedies were helping me work through all this emotional stuff. I also got a wonderful herbalist whose herbs also helped me physiologically. But- she also told me that my diet was horrible. I was eating good foods- just not for me. Ugh. So I tried to switch my diet, I was stressing out with school...these new meds...but our attraction and interest was still going strong.

Then came the summer. I had a huge transition from east coast to west coast and the meds had started to make me feel irritable and like....stone. It took me weeks to notice this. My emotions...what had happened to them? I was so emotionless. I did not feel like myself at all.  On top of all this I went down on the dosage with a new doctor and began a new anti-malarial drug. I'm fairly certain these drugs brought back my blood disorder and really messed with my level of iron. So I was fatigued a lot...in pain if I biked too much or walked too much. I felt like such a sucky boifriend. I don't think she'd ever dated anyone with limited ability...so this was all new for both of us. I felt it really hard to keep up with her, and at first, she rarely tried to slow down. I began just declining going out with her. Especially if it was an event in the night time where we'd stay out all night. If I don't sleep I can barely move in the morning...Also she never knew that smoke exacerbated the achiness in my joints and I think that my disorder caused me to be overly sensitive to it. It took me a while to figure that out, too.

She became frustrated. I became frustrated. Stupid drug that took away my emotions or made me overly emotional. After a month or 2 I felt like I was inhabiting my body again. More like myself. Less distant. I'm going to say it was the decrease in dosage. Around the fall I started to notice which foods would make my joints hurt more...but I must have also become low in some other mineral or metal because I would crave powdered donuts or kettle corn...what a summer. I suspect that if I'd learned to control my diet more and if I'd kept a better eye out for my emotional shifts that the summer would have gone slightly easier. As I've thought of my diet more and more I've thought about how eating the foods that I wanted to eat was the only control I really had over the summer and fall. Everything felt so up in the air but if I just had a snack or meal that I liked, at least I had that. I guess that might be the main mechanism for eating disorders if you think about it. Not that I think I had one-- I just know that with my life swirling all around me, food choice was something I could most of the time control. Well, until I started running out of money.

But she stuck around through my aches and mood swings. I can't wait until I'm off of this altogether. It's really changed my mind about taking testosterone. I'd known that irritability was a side effect but actually experiencing it- whoa. I miss my raspy, baritone voice though  since I've decreased in dosage :(. But, I suppose that's neither here nor there.

The reason I'm telling this tale is because I want folks to be more aware of what prescription drugs can do to you. I know physician's always say “Possible” side effects but keep an eye out for emotional changes. Listen to your loved ones. I know that there were support groups that probably could have forewarned me and told me of techniques they used. But- I thought I was fine and never called them up.  As an independent person, I pride myself on not requiring much assistance. This autoimmune disorder changed everything. I had this wonderful partner who was trying to understand and trying to help me once she understood more- but every time she helped me I felt more and more ashamed. Sometimes I'd relax but then I'd be reminded of what she'd done- and I'd be depressed again. Because I'm the masculine one...right? What am I doing not being able to support myself? Manage my pain? Manage my emotions? And I felt so bad that I was a burden. I felt like at some point she resented my illness; being with this ill person. I felt like she saw my illness as a weakness...that it lended to her believing that I was weak. I became more indecisive because I was indebted and also because I'm fairly easy - when it comes to restaurants and outings.  She'd dealt so much with my irritableness, I tried extra hard to dial it back. But- then she started blowing up at me. And I started reacting to her reacting to me...and emotional meltdown after meltdown. Was there some queer counselor, yoga or meditation instructor that could have helped us from triggering each other?

I'm usually a level-headed person. I've practiced buddhism for years and years. But it felt like meditation was no match for this damn drug. Sometimes I was so complacent. I became less into my practice as I spiraled into this out-of-body experience with prednisone as the driver. Granted, it's important that I mention other factors were involved.  But the prednisone set the dynamic. And I am going to do everything within my power to heal myslf and get it out of my system. The anti-malarial drug as well. Because I care about my partners and loved ones and I would have never been so incompassionate if I'd never taken this stupid anti-inflammatory that suppresses my immune system (and emotions as well). Sigh.

One of the best things I heard while trying to cope with this drug: Remember, these emotions are manufactured.

I know this...my partner knew this...but what then? How do you deal with the aftermath or the continuation of being on such a disrupting drug?

Here are my thoughts: 1.keep open communication with your partner, ask for honesty and listen. 2.Try to eat as healthy as possible and figure out the allergens that might cause inflammation as well as depression or irritability. 3. Find coping strategies for when you have spells of irritability or rage whether it is going out, meditating or chanting, or doing breathing exercises and remembering that these emotions are not really coming from you. It helped me a lot when I would get angry to ask myself...am I really angry? Why am I angry? Is this really coming from me? Is there a reason for me to feel this way? Did what just happened warrant this much of a response? And when I'd get upset at myself for being angry I'd remember how important it was to be compassionate to myself. At first it was really hard to keep from being depressed or angry at my reactions, but once I learned to manage my emotions a little more it was easier to step back and be compassionate to myself. Honestly, if you can't be compassionate to yourself, you can't be compassionate to your partner. No matter how loving you think you are- if you are hard on yourself, odds are that you are the same way to your partner.

It's also extremely important to remember that autoimmune disorders didn't happen overnight. Depending on your understanding of the etiology or cause of it...you could believe it started as a child with exposure to toxins or maybe that it's something you inherited or you could believe that it is karma over a milennia. Whatever your understanding, it's important that you know that these disorders are deeply rooted and that the odds are that there is going to be a long road to recovery full of ups and downs as you learn to manage your lifestyle. It is imperative that you be with someone who understands this. I can't stress this enough. If you are with someone who does not understand the extent of this disease and what you are going through, it is going to make your recovery that much harder. I also recommend that your partner finds a support group for loved ones of people with autoimmune disorders and reads some literature and maybe even blogs on similar experiences and that you really sit down and check in with each other on how you are feeling and how you can support each other. It can be difficult, you definitely shouldn't minimize that - but it's not impossible. Those of you suffering with chronic pain and illness remember that if your partner gets upset or stressed out or feels like they can't deal with it, that it doesn't mean they love you any less. Think about it. If it's difficult for you to manage, how must it be for them? Even when we don't think that we ask a lot of our partners, it still can be overwhelming for them. Understanding is key. I can't stress enough how we need to be compassionate to one another in order to get through this together. And if your relationship must end because it is too difficult, don't beat yourself up or stress out about it. I know that it is more easier said than done but we really need to use that time to focus on what we need to do for us to feel better and manage our health and hopefully we can keep that loved one as a friend if not a romantic partner. If they stuck with us that long through all of the ups and downs, they really do care.

Silencing and Voicelessness- a QPOC, limited ability/chronically ill perspective

It can be hard to understand the life of a gender non-conforming person. Some are lucky enough to be called by the pronouns they wish to be called by in their home life and at work- others are closeted and must deal with the daily contradictions of presenting in a way that is "acceptable" in the work environment and to family, etc. Some of us spend so much time working on who we are and discovering our identity only to be ushered back into the closet on numerous occasions- daily.

I'm going to speak from the experience of being a gender non-conforming person of color with Systemic Lupus. Voicelessness is something that I've struggled with throughout my life. Mostly because I was born brown and female-bodied  in the South. In my generation...African- American kids did not question authority. Not your parents...not your aunties and uncles...and all this was training for dealing with white policemen,white teachers, principals and doctors and a predominantly white upper management in the workforce. Some of this was taught unconsciously. We needed to "understand our place". Once in Jacksonville, Florida when some male cousins and I were discriminated against and accused of shoplifting in a Walgreens the elders in my family chastised us for going to the "white" walgreens and said we should have gone to the "black" one. So, race/ethnicity has definitely made me feel crippled at times. Especially in the ivory tower where your views and perspectives are made to feel less valid and many times you feel like an outsider in your cohort--because of race and sometimes, gender.

Being female-bodied, we internalize all kinds of sexism and misogyny. Women have their roles, and one of them is not to speak up- unless a man has been affected. Maybe a son or a husband - or even some stranger.Women have spent centuries being told to keep quiet and stay in their place. Women have fought for liberation for decades, but the vestiges of the patriarchy are everywhere. Being read female and being partially socialized as such for decades, I have not gone unscathed. The various institutions I trusted (why? I have no idea) many times told me exactly where I was "allowed" to go. I defied this of course with the best of my ability, I took note as I watched my black mother navigate the systems.

Queer people of color are oftened silenced.Silenced and voiceless imply two different things for me. When you are silenced- people are unintentionally or intentionally invalidating you and your ideas. When you are voiceless- you are silenced but there may be other factors contributing to being unheard. Silencing can be overt while the variables lending themselves to a person feeling voiceless can be very subtle. Being a QPOC or being genderqueer makes a person marginalized within a marginalized group. Who listens to the queer black or brown man's hardships or those of the gender non-conforming? We're always being told to be quiet because we're being too divisive by expressing how our social and economic concerns are different. All discrimination is not equal. Many of us face double or triple the discrimination because of intersecting identities such as race,class,gender, and sexuality.

I have been pondering on something recently as far as what others might mistake as me being voiceless. As a genderqueer, masculine of center person I am constantly monitoring my interactions with women. Especially my partner. And sometimes this is misread. I am not being unassertive, I am trying to respect her. When I say that I'm trying not to take up a lot of space when I'm in mostly women's spaces with her...it has nothing to do with my confidence and everything to do with the fact that I want to honor those women who are continuously marginalized and not allowed to speak, including her. I realize what my interactions with men and my occasionally being read as male does to my interactions with women. I try to check them. But also as a masculine of center person who may more frequently be read as female because of my features, at times I am still silenced and voiceless. All I know is...that I don't want to contribute to the voicelessness and silencing of women who I truly respect. I don't think that makes me soft or weak...and it hurts when things said about my hypersensitivity to taking up too much space are read as such. How does that make me any less masculine? How does that make me less strong? I'm not going to throw around my weight because I'm in a room of women or even a room of men. That's not what I'm about. It is important for transmen to recognize our privilege and also to learn to balance it with decades of past and continuing marginalization. It's definitely an on-going process.

As a gender non-conforming person with a chronic (and sometimes fatal) disease I get no respect from most of my doctors and am always searching for the one doctor who is not racist, or sexist, or homophobic. It's so hard to find a doctor lacking at least two or more of these wonderful means of discrimination. I have a disease that doctors and the world are just now learning more about- one where at times you're fine and other times you feel like a 16 wheeler hit you and backed up over you...for months. Sometimes you appear healthy when your kidneys or brain is failing. No one understands your pain- not parents, partners or doctors. So your experience is often invalidated and goes unheard by those you expected to support you the most. I must say that unfortunately I have had this experience at one of my lowest and most trying points with SLE. My parents were in denial, most of my friends were too busy to even check in with me...but I am very appreciative of the handful that were there for me. Though I was voiceless in the physician's offices and silenced by rheumatologists and hematologists/oncologists alike, it felt good to be able to have at least three or four people to talk to. Even if some days I just sat immobile, curled up in a ball crying from the pain and not wanting to talk with anyone.

So, I'm marginalized as a brown, female-bodied, genderqueer/gender nonconformist with a disease that no one quite understands. In a lot of my interactions I can't be how I feel and who I am. I can't express myself. People don't acknowledge my identity. Many of these people are close to me. Some have access to my medical records and are expected to treat me (without actually caring who I actually am). I am constantly silenced in this body, with this disease. It's a lot to deal with. Sometimes too much. And at times I have wondered how I could possibly regain my voice. I've yelled, screamed at the top of my lungs but I've been really tired lately. I haven't cared about power struggles in the workplace or academia as much. I've been sick and trying to deal with a diagnosis I got just this past January.But the struggle continues and I'm done with not being heard or people's selective hearing. (Nothing new). I am gathering all my strength as I work on healing myself. I will never be silenced. I am a writer and the pen is a conduit for my voice. So even if I'm not physically able to battle it out...you'll be hearing from me....oh you will.

Discovering our ability to Heal Ourselves after Invisibility, Voicelessness or Confrontation with the Medical Establishment (and in our Lives, in general)

So,


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