Wednesday, June 18, 2014

Guest post on Intersected: On Pros and Cons of Public Disclosure

Please visit the "Intersected" Blog to read my post about the Pros and Cons of Public Disclosure. Thank you!!!
 http://intersecteddisability.blogspot.com/2014/05/on-pros-and-cons-of-public-disclosure.html 

Your HIV+ Child is Going to Grow Up and Have Sex One Day


Photo credit: Telegraph.org.uk



You may not want to face it.  Heck, I don't know if I want to face it. Because that means accepting kids grow up. But they do, and they will. Mine, yours, and theirs. They don't stay babies forever. They grow up. And one thing that happens to (most) people when they grow up is that they have sex.

Yes, I said sex. Sex. Sexsexsexsexsex.  We need to talk about it. It's not an easy topic, which is even more reason why we need to talk about it.  I get that it's uncomfortable; I'm a Christian woman living in the American South from an immigrant family.  It's not exactly a topic of conversation for the dinner table. However, the taboo surrounding talking about matters of sexuality fuels a lot of problematic mindsets and behaviors.   We need to, and can, do better.

Back to the topic.

Medical advances have dramatically reduced perinatal transmission of HIV over the last two decades. And as most people know, with adequate treatment, the likelihood of a baby born to an HIV+ mother has dropped from ~25% or higher to virtually zero.  That's great news, and countless positive women have given birth to HIV- children since the 1990's as a result.

But...

The people, including infants and children, who were HIV+ before these advances were widespread didn't vanish into oblivion. Furthermore, though positive births occur a lot less frequently, they still occur, particularly among pregnant women who are not aware of their status and/or are not in care.

(And though we have a lot of information about how to prevent it, HIV transmissions via intercourse and other means do still occur too.)

I am a married woman. I obviously have sex.  And so do most people you encounter. Young and old. Male and female. Married or not. Heterosexual or not. Cisgender or transgender. 

Focusing on prevention is very important. Dispelling stigma is also important.

However.

When it comes to some of the more common forms of HIV advocacy I see originating from people involved with pediatric HIV, including parent and family advocates (whom I deeply admire and support), I'm seeing FAR too much emphasis on how HIV is not transmitted via casual contact. I read it over.  And over. And over.  (And over.) But from these same sources I'm NOT seeing enough focus on the fact that HIV is also not easily transmitted even during many forms of non-casual contact.  ESPECIALLY if a person is engaged in care and their HIV viral load is suppressed via medication. The onus falls upon adult HIV advocates to carry that part of the message completely on their own. 

And that's a problem. All contact is not casual. And if we focus all of our attention on the safety of casual contact, we miss opportunities to educate people about what science has taught us about intimate contact--that HIV transmissions are not the norm with proper treatment, awareness, adherence, and support in place. About treatment as prevention (TASP) and about pre-exposure prophylaxis (PrEP).

I personally do not want any person living with HIV to feel forever condemned to "the friend zone" because of transmission fears, or to feel forced into lifelong celibacy if that is not their desire. I don't want anyone living with HIV to feel that they are only able to date other positive people. There's NOTHING wrong with dating and falling in love with someone who shares the diagnosis, but that should be a CHOICE; if a person desires to date someone who is also HIV negative, they should feel open to doing so. 

Nor do I want people living with HIV whose partner is not also positive to feel like they need to live for several decades from youth into their senior years using a condom EVERY TIME they lay down with their life partner. What is realistic about that? That simply isn't going to work for everyone. For many couples, yes. For many others, no. 

With or without anyone's permission or approval, people living with HIV are, just like HIV negative people,,GOING to have sex, and they're going to have it THEIR way. Which for many doesn't include condoms. And if there are other prevention options out there, what is wrong with that? If an informed couple decides to meet with their doctor to have a discuss about their options, including PrEP, let's not unintentionally  throw them under the "unprotected sex" bus (and that is an outdated term anyway; the CDC and many others now use "condomless sex" instead).

Same goes for the serodiscordant couple who is from a devoutly Catholic family and isn't having "protected sex." Maybe the wife living with HIV has decided to use PrEP because she wants to have loving, hot, passionate sex with her husband, but a condom isn't an option because of their religious beliefs. Ditto for the person with Sensory Processing Disorder and/or the person who is Autistic who uses PrEP because they cannot bear the constricting feeling of condoms due to their senses are more heightened than the average person. They might have to have "unprotected sex" because the sensation of wearing the condom is practically torturous, but that doesn't mean they aren't employing other ways to prevent transmission while having an active sex life.

Or even the person who isn't in a relationship wants to have random hook-ups with strangers but utilizes treatment as prevention and PrEP as options to prevent potential partners from possible HIV risk, who are we to condemn them with regard to transmission risk? I mean, you or I can judge their lifestyle choices all we want or don't want, but we shouldn't unintentionally conflate that with them being irresponsible about HIV merely because a condom may not have been used.

With regard to breastfeeding, I don't have as much information to justify a firm stance on universal breastfeeding among positive moms, but in some regions of the world where breastfeeding is the standard of care among mom living with HIV for various reasons, there is some research data about ways to reduce transmission risk with this too. It isn't necessarily always as huge a risk factor as it might seem either. But even if it is, women living HIV, especially those who are mothers, are stigmatized enough without flippantly and casually throwing breastfeeding references into blanket statements about HIV. In Western nations  the population with the highest incidence of HIV is not exactly known for high breastfeeding rates anyway, so in many ways bringing up the risk of transmission via breastfeeding is generally a moot point.

Basically, our words about casual and non casual HIV transmission matter. We need to be conscientious in both what we say and what we don't say. Focusing just on the lack of transmission risk in casual transmission is incomplete - and in a sense, I believe it's responsible. It's not enough; it's a Band-Aid. If you have an HIV affected family, you already know you have to educate people and advocate for your family's needs. This is no different.

Don't just say "HIV is transmitted through unprotected sex with an HIV+ partner, breastfeeding, and childbirth" or things like that. If you're going to say that, you need to, while you are educating, also make sure that you explicitly state that even those things carry an extremely low transmission risk too if a person is engaged in care. And you need to be sure that you explain clearly about PrEP, and about treatment as prevention, about the less than 1% perinatal transmission rate for positive pregnant women, and about other related things.

Why am I saying this? Because it needs to be said. Because if you stop at casual contact and don't get to the "nitty gritty," while you may indeed convince ppl that HIV is nothing to fear in casual contact, you are unintentionally implying that it IS something to fear with non-casual contact. Because without saying this, you're just not saying enough. It's like trying to bathe yourself by rubbing body wash or soap all over your soiled body parts, but not running water to wash it off. 

There's a debt associated with sticking with solely a "casual transmission" argument. In the short term, you might win the battle.  Johnny might be welcomed with open arms onto the soccer team at age 8. But guess what? He might be unfairly shunned in the dating market at age 15. Because dating may result in contact that goes beyond casual.  And by your omission you've helped people fear that (non casual contact) occurring.

That type of advocacy...the whole "it's just a child" defense feeds into the "innocent victim" persona. Intentionally or unintentionally. And that may work when your child is small. But I guarantee you that few uninformed people are going to find the fact that your child was "born that way" to be very reassuring if they are feeling bothered by the prospect of your HIV+ child (now older) having a sexual future with their HIV- son or daughter. They're not going to say," Oh, you have perinatal HIV? Oh, then it's okay then.  Silly me, I thought you contracted it through having sex or something like that; I didn't realize that you were JUST born with HIV...I'm totally cool with everything now. Yay HIV!"

No. It's not going to be like that. Because no matter HOW someone "got" it (which, truthfully, isn't people's business anyway), the point is that they have it. HIV is HIV is HIV is HIV. They're going to behave the same way with your HIV+ child in the future that they behave with HIV+ adults today. With fear. With anger. With disdain. Unless WE change things.

We need to step out of our perinatal HIV bubble. Yes, perinatal HIV is important. And definitely not sufficiently addressed. But we need to keep in mind that kids with HIV grow up.  And they become adults.  And we have a responsibility to the adults that they will become to support the adults that are here right now.

People with HIV have as much a right to a fulfilling, multiple-orgasm inducing, non-stigmatized sex life as HIV negative people do.  And we ALL need to help make that message as well-known as the other messages about HIV not being a death sentence.  We need to position ourselves alongside HIV+ adults, not just HIV+ children.  In fact, NOT alongside actually; BEHIND. They are the experts. We need to listen to them. Befriend them. Learn from them. Fight for and with, them.

One critical way to fight? Join in the fight against HIV criminalization. HIV is not a crime nor should it be treated as such - yet in 11 US states your HIV + child can be arrested for spitting on someone even though HIV can't be transmitted that way. In five states, transmission of HIV carries a harsher prison sentence than murder. The community-led Positive Justice project, for example, welcomes new members to its national working groups who are interested in helping address HIV criminalization; you could send them an email and inquire about joining them! (In addition to or in lieu of that, you could look into joining in with other great HIV advocacy organizations.) 

If we do nothing, we risk our children facing the plight that Cicely Bolden faced. Or Elisha Hensen. Or any number of people who were discriminated against or killed because they dared to reveal their HIV status to someone.

I for one aren't going to let that plight become any part of my family's future. I choose to stand with the positive community. I am all for the needs and the rights of children.  But  I will signal boost and support the adults, who are paving the way, with every ounce of my being.

And we need you too! There's room at the table. You are welcome.

Please join us.

Monday, June 16, 2014

Mo' "fan" mail

And the fan mail continues:

"Hi Morénike. I just wanted to let you know that as of today, I'm going to be "unfollowing" your posts. I don't want to "unfriend" you as you are a fellow sister in Christ, but I don't like a lot of the activity I see in my news feed about you. You're getting brainwashed by all of these angry adults with autism and now you think you're autistic too? I'll be praying for you."

Hmm.

My thoughts?

1. Baby, you don't have to hide anything I say. See that "unfriend" button right there? Go ahead and click it. Bam-problem solved.

2a. Yes, I am definitely a follower of Christ. I love The Lord and will continue to love Him as long as I live. But I am NO "sister" of yours.

2b. Maybe you should read up a little more on Jesus yourself...

3a. They are not "adults with autism." They are Autistic adults. Please get your facts straight.

3b. Nobody is "brainwashing" me. I've been on this Earth over three decades; I'm a big girl. I have my own mind.

3c. So standing up for yourself makes you "angry?" Isn't this "angry" stereotype a little bit old and played out? We all know about the "angry black woman" and the "angry adoptee" stereotypes; is the "angry autistic" the new thing?

3d. Maybe if people constantly abused you, denigrated you, and wanted to prevent people like you from ever existing you would appear to be a little "angry" also.

4. I don't "think" I'm autistic. There's this interesting invention called a neuropsychological evaluation; ever heard of it? (And even if I self-dx'd like many people have to do for various reasons, don't you think that there are diagnostic criteria one can use to determine whether they are or aren't?)

5. Feel free to pray for me. Pray for me all day long. I'll be praying for you too. Because you REALLY, REALLY need it.

Holla.

Wednesday, June 11, 2014

My first piece of "fan mail"

(From March 2014) "You know, ever since you got diagnosed, it's like you're pushing this flowery view of autism on everybody all the time. And it colors everything you think or say about autism. I'm happy that you are okay with it for yourself, and I'm happy that your kids are doing well. But my kid is nothing like you, and nothing like your kids, and nothing like "Carter." I 'act' like I'm okay for the sake of my kid. But I am hurting for him that he has to live the way he does and get treated the way he does. It's hard for me to see posts like yours and other people and not be bothered by all this progress, when it's not like that for us." -(name withheld for privacy)

Someone sent me that PM earlier. They had sent another preceding it, because they said that they were bothered by the post that I made tonight about "Carter." But after engaging with them a little longer, it seemed to me that their frustration was not just about him, but about me. Among other things, they shared what I've quoted above.

With all due respect, this seems like what I've heard many autistics describe as the "You're Not Like My Child" argument. As such, very little of what I could say in response would likely be considered. I am already being dismissed because it has been perceived that neither I nor my autistic children "struggle enough" to understand others' point of view, or the experiences of others that differ greatly from mine.

And no, I don't profess to know nor understand *everything* about someone else's life. But I will say that it is presumptuous and unfair to assume that my CHOICE to accept myself and my children and to celebrate rather than mourn who we are means that I don't understand struggle.

Oh, I understand struggle. All too well. I've seen and experienced many things that if I went into detail would require trigger warnings all over the place. I have made a conscious decision to "carry on" with life despite obstacles, and I have been blessed that a great deal of the challenges I've faced in life are now a thing of the past. Some remain, but many are gone. I thank God for that.

But that doesn't mean I have relinquished my right to have a perspective and an opinion on something simply because I am not presently "overwhelmed" by it in this season of my life.

Lastly, I make no apologies for being proud of "Carter." He is not my child, but why not think it's great that he is showing these strengths? And why not share that joy with others? As one of my (non-autistic) children has intellectual disability, I know how easy it is for people to decide that such a person is a "lost cause" rather than pushing for them to work at their individually determined pace and grow. I was pleased that at least in this case, the status quo did not apply.

I was not implying that since "Carter" is obviously far above the academic level that they'd (incorrectly) assumed of him that he is better or worse than anyone else!

And...that's all folks! Have a great night/early AM!

Sunday, June 8, 2014

A believer's plea: enough with the hypocrisy

The hubby's asleep. The kids are asleep. I need to go to sleep too.

But before I do, I'm going to make another super long status update/blog post (yay multitasking!) motivated by some things that I have seen lately. I can't go to bed and not say anything. It just wouldn't be right.

This isn't a feel-good post. Because in it, I need to call out my "people." By people, I mean those who consider themselves to be people of faith, believers, etc.  I'm sure that there might be non-believers/agnostics/atheists who stumble across my blog because anyone is welcome to read.  However, this post, while not intended to exclude anyone, is intended to address those whom are perpetuating a certain problem,  so I am speaking directly to that community.  I cannot keep my mouth shut; silence implies approval.  Also, I know that among believers, there are tons of people for whom this does not apply at all, but there are others for whom the shoe fits perfectly.  I ask both to hear me out.

And I'll also preface this by saying that I know that I am far from perfect; I make more mistakes than I can count on a regular basis.  I forget things, I lose things, I drive too fast, my room is a mess, and I always seem to be running 15 minutes behind for everything. Etc. Etc.  But despite my many, many flaws, I still know wrong when I see it. And it is WRONG to use FAITH to excuse DISCRIMINATION.

It is not only wrong, I'll be bold enough to say IT IS A SIN.  Religion that cloaks itself with hatred is no longer religion.  It's an agenda.  You do NOT get to say you follow a fair and loving God and in the next breath condone practices that are neither fair nor loving to others. Uh uh. You don't. You just don't.

You can disagree with someone or with something.  That is your right.  And while people may not like your way of seeing things, you are entitled to that feeling. But is it NOT within your right to advocate for what is WRONG simply because you disagree with the way someone else lives.  NOT if you call yourself a believer.

I am so saddened and so disgusted by the hypocrisy I am seeing by people who profess to "follow God." I have one question for you: what God are YOU following that would be pleased with your actions? Please name that God for me.  Because I am a believer. I am proud to be one. And if you claim to be one as well and say God condones your hatred, then I do not know this God of whom you speak.

If you want to hate, don't be such a freaking coward. Don't hide behind a belief system. Just be real with yourself.  No need to "front." Let your hate flag fly high.

Just keep MY Lord's name out of it.

I don't know who sings the Christian contemporary song this excerpt comes from, but it seems fitting: "Jesus, friend of sinners. Open our eyes to the world at the end of our pointing fingers. Let our hearts be led by mercy. Help us reach with open arms and open doors. Oh Jesus, friend of sinners, break our hearts for what breaks yours."

I need my believers (Christian, Jewish, Muslim, Hindu, Buddhist, etc) to rise up. Speak up in your study groups, in your circle of friends, at work.  Not like this; this post is a rant. Coming at people in this way will put them on the defensive and you won't have an opportunity to connect with them and share your feelings.  Speak instead to them in a way that speaks to their hearts so that they can understand. We are in a position where we might be heard where others won't.  That is a great responsibility and we should utilize it effectively.

We can gently but assertively point out the flawed judgment that would lead one to thinking that there's a valid reason to treat others indecently. We won't get through to everyone, but we can sway some  people. We are not alone in feeling uneasy about this; many others do too. But they aren't aware that they aren't alone.  It's not an easy thing to do, to oppose "big name" so-called "believers" who are endorsing actions that are discriminatory, unjust, ungodly, and hateful.  It's hard to know what to say, what to do, when to begin.

Let's show them.

Autism as seen by my autistic daughter

My sweet girl's contribution for a community flash blog (that wasn't part of it because Mommy didn't submit it on time to be included, oops).  SO I'm sharing it here. She typed this out unprompted and unassisted.  :)

This is autizum
Autizum is something BIG and good.
It is fun to type about autizum! 
I am 5 years old. 
Sometimes my favorite color is orange. 
My real favorite colors are purple and pink! 
My b-day is sept 7. 
I am 1 person. 
It is okay to have a disapillity.

Friday, June 6, 2014

"Carter": an exercise in presuming competence

(From spring 2014) 

I volunteer on Sunday evenings with our church's worship and creative arts ministry for children. The kids take fun classes such as kick-boxing, art, hip-hop, cup stacking, Sign Language, music, Legos, etc, and Biblical concepts are interwoven into the lessons.

Though children with disabilities are welcome into this program, most of those families seem to prefer the youth programs in our special needs ministry. We do have one autistic little boy, however, in the "traditional " program.

I shadow "Carter" because he is very boisterous and most of the volunteers don't know how to keep up with him.  But he reminds me a lot of my kids, so I can typically handle him...in fact, we're buddies.

He is so very smart. He does need some redirection, and breaks, and modeling, and he does need opportunities to stim vocally and physically--but when given the supports he needs, a lot of the "aggression" and other behaviors that he was previously displaying are drastically reduced if not altogether gone.

He is presumed to be cognitively delayed. I think that's hogwash. I actually think he's advanced, but because he presents as so obviously autistic with his constant stimming, his echolalia, and his lack of "social norms," his intelligence is missed (except by his parents, both of whom seem very proud of him and very loving).

He was able to read two complicated Bible verses, practically unassisted, without having ever seen them before. And he fashioned capital letters A through F out of Legos, also unassisted.


Did I mention he just barely turned five? And neither of his parents are "scholars" at all; they're working class immigrants?

Moral: Presume competence, and offer acceptance.

Thursday, June 5, 2014

Aut2Change the Autism Organizations that we support

My city, like many others around the country, hosts a huge autism walk each year. For which organization? You already know; the biggest one. Yep, that one.

In 2011, before I knew better, I wanted to show my support for the autism community. So I walked. With my kids. And as we walked, we passed signs that compared autism, cancer, and pediatric AIDS. We passed signs that talked about the ginormous cost of caring for an individual with an autism diagnosis. Etc. etc. I was taken aback. I even snapped pics of the signs (don't worry, I'm not posting them). I've never gone to another one of *those* walks again.

But this year, I learned of another (newer) autism walk, typically held annually in May. One that wishes to acknowledge challenges while also celebrating strengths. One that doesn't portray people whose neurology is different as broken and pitiful. And that walk is happening only three hours from my city. I'm going, along with a grassroots local autism group that supports autism acceptance. The organization isn't perfect, but a lot of their principles resonate deeply with me, and they seem open to grow and change.

I KNOW I just finished the AIDS Walk, and kept posting about it. I tend to perseverate on my passions, and HIV awareness is one of them. Autism acceptance is another. So, sorry in advance that you're going to see more of the same soon, oops. 

I'm not going to accept that the *other* walk has to be the "only game in town." I have to do what I can to encourage people in my area to know that there is an alternative. There is another way of seeing things, and there are groups that are starting to respond with acceptance rather than with pity (or worse). I'm going to stand on my little soapbox in my little corner of the world, and do what I can, when I can, in my way.

The walk I'm going to? It's through the Golden Hat Foundation. This is a link to a recent PSA they released. It is a far cry from "Sound the Alarm" and "Autism Every Day." Check out their "Aut2Change Perceptions;" I hope you enjoy.

https://m.youtube.com/watch?v=ofizC-VuHzU

Tuesday, June 3, 2014

Cleanin' out my closet: coming out Autistic!

(From Valentine's Day 2014)

So...I kinda came out this week. 
About my neurology, that is. 

In recent months, I've grown increasingly comfortable being fairly open about some aspects of myself in the semi-anonymous world of the internet. But IRL, it's different. 

While I am not ashamed of who my Lord and Savior made me to be, my diagnosis is relatively new and not that widely known. Plus, aside from the fact that people's incredulous "You? Are you SURE?" type of responses are draining (and annoying--yes, I GET that I don't fit most people's *stereotypes* of autism), there are other ramifications to disclosure. When you are a prospective adoptive parent living in a conservative state, the price a family might potentially pay for having a primary caretaker with a developmental disability is high.

But "God has not given me a spirit of fear, but of power, and love, and of sound mind." I've been an advocate all my life for different causes, but I need to advocate for myself. Because how can I look my children in the eye (or anyone, for that matter), and tell them to love themselves, and to stand up and fight, if I do not first lead not by word, but example?

So yesterday, as part of an exhibition for the Reel Abilities festival celebrating disabilities in our local community, I stood in a public place in the city I call home, and alongside many other proud Houstonians with physical and other differences, I permitted my face to be displayed next to these words:
"Morénike is an autistic adult who proudly wears the hats of wife, mother, advocate, and student. She is passionate about social justice, global health, education, adoption, and community empowerment."

Though I didn't nail my neuropsych evaluation to the wall, I still consider the closet door swung wide open. And totally emptied.

Happy Valentine's Day, friends, and God bless.

Monday, June 2, 2014

Out of the mouths of babes! :)

As you can probably tell, I'm not a very frequent blogger.  I blogged a whopping two times here in 2013.  I like blogging, but for some reason forget to do it much.  (I'd blame it on the ADHD and the six kids, but there are some very active bloggers who have twice as many kids as I do and who are also neurodiverse, so I can only blame myself, lol.

However, thanks to my awesome tween daughter's suggestion that I "cut and paste" some of my Facebook updates as blog posts, I might actually be able to keep this blog up.  Plus, I've already blogged more than twice during the year 2014 (probably thrice?), so I'm already ahead of the game, yay me!  To anyone who knows me on FB, I'll tag those posts so you can skip them if you want because you may have seen it before.  (Or you can read it; sometimes things are worth checking out more than once.)

Soooooo...here's a cute exchange I had in January with my youngest daughter.

Daughter (age 5): Mommy, I don't like the music you listen to. It's not good. 

Me (who mostly listens to Christian contemporary and smooth jazz): I'm confused, honey. Why isn't is good?

Daughter: They talk about doing bad things in that one song. 

Me: What do you mean? What bad things?

Daughter: That man keeps saying he wants to "live with a panda." That's not good. Pandas might be cute, but they are very dangerous animals.

Me: In what song does somebody say something ridiculous like that?

Daughter: (sings a bit of song)

Me: Oh! He's not talking about living a panda! He's saying "live with abandon!" (Song by the Newsboys).

Daughter: He's going to abandon the panda?