Friday, April 29, 2016

Why You Shouldn't Care Whether Prince Was Diagnosed with HIV

I'm a proud woman of African descent who lives in America. I have family members on various continents, but I call America home. I was raised in the Midwest and the South (mostly the South); I was educated on the West Coast; I call Texas home. But I have always been proud of the fact that I was born in Minneapolis, Minnesota - as was a musician whose music provided the soundtrack to much of my life, Prince Rogers Nelson (more commonly referred to simply as "Prince" by fans).

Prince died very recently. He was only 57 years old. Fans of his around the globe are saddened by the loss of such a celebrated music icon. For me, a young black girl from Minneapolis who often felt "different," Prince symbolized ingenuity and self-acceptance. Prince demonstrated that it was not only okay to be different - even a little weird - it could even be perceived as cool to be that way! ("That way" meaning: being oneself.) 

In recent years I mostly listen to Christian music and smooth jazz, but the lyrics and melodies of the music I grew up with is never far from my mind. They pop up in my conversations and/or they entertain me (unbeknownst to others) as I silently scroll through them in my head throughout my day. But in the days since Prince's passing that hasn't been sufficient. I have found myself watching his videos and listening to his songs. Pouring over the words of his music. "Thieves in the Temple." "When Doves Cry." "I Would Die 4 U." "Adore." "Sign of the Times." "Little Red Corvette." "Purple Rain." "The Most Beautiful Girl in the World." "Kiss." "I Wanna Be Your Lover." Etc.

I've also been reading about Prince online. A lot of the things I have read have been enlightening. Others have been heart-wrenching. But some are just plain annoying. Everybody and their mama wants to be heard, even if they don't have jack to say. And like petty people tend to do, they start up mess. Already the rumors are circulating about this and about that. Prince never claimed to be without flaws, and it is possible that there may be truth to some of the stories that are being shared. Others, of course, are likely flat-out lies. Like anything else in life, the truth often lies in-between the ideal and the unreal. My main qualm is not necessarily what is being said, but the reasons that people are saying them. One clear reason is purely sensationalist. Another is for profit. And another is for possible slander. It is that latter reason I am going to focus on. 

If I read one more article speculating about how "Prince died of AIDS" I think I'm going to scream. First of all, you don't "die of AIDS." You may die of an AIDS-related illness; you may die of an opportunistic infection you acquired as a result of an immune system weakened by AIDS, etc. But the cause of death itself is NOT "AIDS." 

Secondly, if Prince actually was a person living with HIV, so freaking what? Is that the end of the world, having a diagnosis of HIV? No, it is NOT NOT NOT. Why should we care if he did have it or not? But I'll humor it just for the sake of speculation. Let's imagine we receive confirmation about this; that we learn from an official, trustworthy source that Prince was indeed diagnosed at some point with HIV. If that happens, my response would be...

AND?!?!?!? 

What difference would that make? Not one iota. He was still Prince. He is no more or no less because of his serostatus. That changes nothing about his legacy as a musician; that changes nothing about his philanthropy; that changes nothing about his creativity. If anything, as a disabled woman on color, it makes me admire his accomplishments and his drive even more, knowing that he continued to write, play instruments, produce, travel, and perform while managing life as a person who not only had a diagnosis of epilepsy, but may or may not have also been living with HIV. 

If Prince had HIV, he, like millions of other people living with HIV around the world, could manage his health with any number of available medications for treating HIV, including once-a-day-one-pill regimens.

If Prince had HIV, he, like millions of other people living with HIV around the world, could have a happy, healthy marriage where he could have loving, consensual sex and not put his partner at risk of contracting HIV due to resources such as pre-exposure prophylaxis (PrEP) and treatment as prevention (TASP).

If Prince had HIV, he, like millions of other people living with HIV around the world, could have one, two, or ten HIV negative babies due to medical advances. 

If Prince had HIV, he, like millions of other people living with HIV around the world, could potentially enjoy a lifespan that was nearly as long as that of individuals without a diagnosis of HIV (assuming no other major illnesses).

If Prince had HIV, he, like millions of other people living with HIV around the world, could connect with many knowledgeable, encouraging, resourceful advocates in the HIV community who are willing to mentor and support others and provide both assistance and friendship. 

If Prince had HIV, he, like millions of other people living with HIV around the world, could demonstrate that one can still be successful and influential regardless of serostatus.

If Prince had HIV, he, like millions of other people living with HIV around the world, could rest assured that he had a right to privacy about his condition and that others did not have the right to disclose or discuss his condition without his consent. 

If Prince had HIV, he, like millions of other people living with HIV around the world, deserved and DESERVES to be treated with respect and dignity, not gossiped about and stigmatized. 

I could be living with HIV. YOU, the person reading this, could be living with HIV. Your neighbor, your friend, your physician, your plumber, your hair stylist, your bank teller, your weed man, your pastor, your child, your parent, your Senator could be living with HIV. That does NOT make any or all of these people less. It makes them individuals who happen to have an acquired immunodeficiency virus. That's all. They are not deserving of nor do they desire your scorn, stigma, pity, hatred, or discrimination.

Nine years ago I took a semester-long course called "Learning, Empowerment, Advocacy, and Participation" (Project LEAP for short). One of the ladies in the course, a sweet, beautiful older lady named Jackie, shared a lot about her son, who had died of an AIDS-related illness many years before. She also spoke a lot about her church and about her work as a volunteer coordinator for a huge HIV clinic.

One day Jackie told us about a time that her pastor had preached about eliminating HIV stigma. As he concluded his sermon, he asked the members of his congregation to stand if they'd ever shared a needle with anyone. Startled, only a few very brave, very truthful people stood up. 

He next asked people to stand up if they'd ever had sex with someone - whether they were married or unmarried. More people stood up. 

Finally, he asked people to stand up if they'd ever been born. Every person in the room was now standing.

He asked each person to look around. He stated that every person standing had engaged in at least one act that in which they could have potentially contracted HIV, even if it was the act of being born. He said that because we have ALL done something which could have resulted in the diagnosis, we had NO right to act as if we were better than anyone with the actual diagnosis. 

I think this advice would serve many of us well in the days to come as people continue to speculate about Prince's serostatus. 

If you come across people engaging in the same old tired HIV stigma, please share this post with them. There is NO place for HIV stigma in 2016. Especially on "Alphabet Street."

From Morénike, a loyal Prince fan

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Image is a color photo of the beautiful, talented late Prince Rogers Nelson with his birth and death years listed (1958, 2016). Photo credit: V105


Friday, April 1, 2016

Teaching youth to #AcceptAllOfUs for Autism Acceptance Day 2016


We live in an ableist world.

It's the truth. And it's so ingrained it's shameful.
Having lived the majority of my life not knowing I was even disabled, I was mostly unaware of how deeply ableism was - is - entrenched in our society. Once I started to recognize the reality, my mind was completely blown. It was like my own personal "Matrix" (as in the movie) and I had just taken whatever color pill shows you the way things really are. I could scarcely believe how I hadn't noticed it before.

Ableism can be unlearned, though. People can be shown how to be accepting of disabled people. They can be taught to speak and act more respectfully about disability. They can work to reform policies and work to transform perspectives. They can amplify the messages of the disabled community.

And it doesn't take a great deal of power, money, or influence to do so (although having more sincere, like-minded individuals of influence and/or means who are supportive of our cause would be great). It doesn’t take any of those things, though; it simply takes concern. NOT pity. Not a savior complex. Just genuinely caring enough about us to view and treat us like the human beings that we are. Not "in spite of" our disabilities, but WITH them.

Caring.

I’m a teacher. I teach in a school that has primarily non-disabled students, but we do have a sizeable percentage of students with various disabilities who attend our school as well, including a very small number of autistic students. I shared very early in the school year with my students that I am autistic, probably the very first day of school.

Why?

Well, why not? We're going to be together for a whole nine months; at some point it would be evident (if not right away). To me it made more sense for them to understand early on why I was different than their other instructors. So I told them.

But you can't stop there. That's just "raising awareness." You have to go deep. You do have to make people aware, but that's merely surface level. Awareness isn’t even close to enough; it’s just a jump start. Next, you have to equip them beyond only knowing/being aware. Awareness is only the “what.” But it isn’t the “why.” People need to have a “why” to connect the what - to be able to apply it to their lives. Applied learning is effective learning. It has to be made relevant.

Since awareness is a “necessary evil,” yes, you should do it. So you start off by raising their awareness. You follow up by taking it to the next level - raising their understanding now that they are aware. Lastly, you raise consciousness.

Here’s another way it can be explained:

First they're aware.
Then they understand.
Then they care. (Hopefully.)

Everything should be building up to having people recognize your humanity and therefore caring about what happens to you. And caring about what happens to people like you. This is where you transform the relationship from casual to committed. From passive to active.

From awareness to tolerance to acceptance.

I should know. I’m a living example.

My students are aware that I'm autistic. And they don't just tolerate it; they accept it.

They know I can't handle pen clicking, desk tapping, and similar unexpected noises, so they work hard to "police" one another to reduce the assault on my senses. I have given a few of them stim toys to be sensitive to their need to stim while also addressing my own needs...and some of them have brought their own items for stimming, such as Play Doh, slime, and other things they like.

That’s not all, though. There are so many things. Little things. Big things. They show their acceptance in so many ways. For example, my students know that I need things a certain way in the classroom in order to function, so they help straighten things for me. They don’t give me problems when I need to hold class using natural sunlight (with the overhead fluorescent lights switched off, or even outdoors). They know I can't discern what is being said when numerous voices speak at once saying different things, so they try to avoid doing so to allow me to understand them. They’ve learned how to “read” my facial expressions to determine when I am overstimulated or having sensory overload, and have learned to give me a few moments to regroup in those instances. They know that I block my ears when the school bell rings, during fire drills, or when I'm overwhelmed.

They have worked hard to remove offensive language from their speech (i.e. "That's so g*y," and, "That's r*tarded," etc) based upon feedback I have given them about bigotry. They know I need to stim and move around while I teach, and they sometimes join in with stims of their own.

One of my proudest moments this school year was when one of my autistic students (there are only seven or so in the school, and I teach most of them) found the courage to tell his classmates that he, too, was also autistic. They (his classmates) had known for some time about this student’s epilepsy diagnosis, but he had kept the fact that he was autistic hidden from them - until now.  He is no longer pretending to be something other than who he is; is no longer scared to identify himself as autistic. He is living in, and walking in, his authentic truth. I believe that at least in part having a constant, visible autistic adult in his life (in this case, as his teacher) helped him to come to terms with who he is and helped him to gain enough confidence to stop hiding. For a preteen, that's monumental. For anyone, really. It's hard to reveal things about yourself that others might scorn - but he was able to do so.

My little autistic “brother” is very different than I in many ways. But despite those differences, he is part of me, and I of him. We’re connected. We’re family. We are one.

One.

I’ve shared many ways that my students make accommodations for me. I am grateful that they do. But our relationship is not one-sided. They make concessions for me, for my differences. No doubt. But they also benefit from my differences too; a great deal, actually.

I’m an instructor. But not just any instructor. I’m a Black instructor; an autistic instructor; a female instructor; a progressive instructor, and all of those things permeate the way that I think and act - and teach. My examples are raw and visceral; my role-play scripted, yet real; my lectures animated and interactive. I not only permit, but embrace technology, movement, music, and multiple means of communication in my classroom; recognizing that people learn differently. I’m not afraid to dive deeply into a concept; I’m not afraid to challenge my students; I’m not afraid to admit when I have majorly, royally screwed up. I am intense; I am hardcore - and no student is the same after leaving my classroom. I don’t know how to do anything halfway, and my teaching is no exception. Love me or hate me, you can’t help but learn once you walk through the doors of my room, because I will settle for nothing else.

I am here to open minds and to open hearts; to fill minds and to fill hearts; to change minds and to change hearts. That’s why I do what I do.  I don’t care about my students memorizing dates and places (though those things/certain facts can certainly be of use at times). I want them to understand concepts. I want them to recognize patterns and draw conclusions. I want them to get the “big picture” rather than to obsess over details they won’t recall next year. I want them to know how to think - and I want them to think about the world outside of themselves and to respect people different than themselves.

It is not by accident that I have incorporated the work of women, of people of color, of disabled individuals into my students’ lessons. I want them to know that I am not an anomaly. I am unique, yes; I am me - but I am one of many. I am part of my tribe, my neurotribe. We are similar in some ways, but we are different as well. Some of us speak with our mouths and others are nonspeaking; some of us “pass” and some of us don’t; some of us are intellectually disabled and some of us are intellectually gifted; some of us live interdependently and other live “independently;” some of us are self-diagnosed and others acquired a medical diagnosis; some of us appear to be “successful” according to conventional societal standards while others are perceived as less so (eye roll).

One neurotribe. We don’t agree on everything. We don’t all sound the same, nor look the same, not act the same. We certainly don’t all think the same. But we are a family nonetheless; all of us. And we need you to acknowledge all of us. Respect all of us. Presume competence in all of us.

Accept all of us.
I am very different from any instructor my students currently have and probably any instructor they've ever had. But my students have learned to relish my differences. The students work with me, and in turn I work with them. We support one another.

They are not "tolerating" my weirdness; they ACCEPT it. They are not learning a lot "in spite of" me being an autistic educator; they are learning a lot BECAUSE I am one. My perseveration, my different way of thinking, my pattern recognition, my focus, my bluntness, my ability to come up with unconventional ways to address an issue - it all works for the classroom. Just like it works in my advocacy, for in a sense educating others is a form of advocacy. Helping young minds to see the value in difference and to be supportive of such difference...this helps us all. I am hopeful that when my students, autistic and non-autistic, grow up and enter the world they will carry our message in their hearts and on their lips. They will fight behind us, alongside us. They will add strength to our cry for the world to Accept ALL of Us.

My classroom represents what acceptance can be; what acceptance should be. It’s not perfect, but it is sincere, and it is beautiful. Neurodivergence and neurotypicality, dancing artfully together. Sometimes we might trip over one another's feet, smash our respective toes. Sometimes we lapse into a dissonant gait rather than a rhythmic twirl. But usually, we flow together. In the dance of acceptance.

I am not unique, and I am not alone. There are others doing what I do. Using their spheres of maximum impact to promote the idea of acceptance. They do it in clinical settings and in technical settings and in boardrooms and in the field and in sports and in research and in visual/performing arts and in media. And they do it in classrooms too. This fills me with joy, all of us making change in our own ways. But it’s not enough. We need more.

Children need to be exposed to more disabled teachers, musicians, politicians, athletes, actors. More disabled role models, period - whether the child is disabled or not. Disabled people currently alternate between perceived non-existence and fodder for disability porn; neither of these is acceptable. We need to have meaningful, increased visibility. They should know we're out there, and get to know us as people. As authority figures. As people to look up to. As people who have always been here and aren't disappearing any time soon.

Building our children's acceptance of those of us who are disabled can only help them to blossom and grow. And as they grow, so will society.

Let's grow love and leadership together this Autism Acceptance Month. Help me and help us to usher in acceptance. Total acceptance, with no conditions and no preconceptions. With no exceptions. Acceptance for ALL of us.

#AcceptAllOfUs!

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Image is a colorful drawing with text stating "Autism Acceptance." Photo credit: K. Mcklaren