Sunday, September 27, 2015

So...About Families Living With HIV (Like Mine)

It seems like "everybody and their mama" is doing or has done some type of "top ten" list about this thing or that thing. I'm no follower, but it looks pretty harmless. So I decided to come up with one of my own. This is a spontaneous list so I'm sure there are many more things that could have been covered other than the ones I've listed here. These are just mine. :) So here goes...10
things you need to know about families affected by HIV.

 1. For the most part, we are very much like your family. We laugh. We cry. We joke. We have fun. We love one another. We just happen to also have one or more members who have been diagnosed with HIV.

 2. I chose the words "living with HIV" because that's exactly what people diagnosed with HIV are doing - living. NOT dying. Advances in medicine over the years have transformed HIV from what was once viewed as a death sentence to a chronic illness that's fairly easy to manage. People living with HIV now have a life expectancy that's not much different than people who don't have it - and are able to, if they desire, marry HIV negative individuals, have satisfying lives (including romance) and give birth to (HIV negative) children, all WITHOUT transmitting HIV!

 3. We have a greater chance of getting struck by lightning or winning the lottery than we do of contracting HIV from the family member(s) in our home with the diagnosis. HIV has never (nevernevernevernever) been transmitted in a typical household setting. We share eating utensils, play, roughhouse, enjoy hugs and slobbery nighttime kisses, change diapers, tend to boo-boos, etc. - with ZERO risk of transmission. 

 4. The people in our families who don't have HIV who marry/parent/live with/adopt/etc. the people in our families who are living with HIV aren't saints nor deities simply for loving someone whose HIV status is different than theirs. They don't deserve, nor want, accolades and praise for being in one another's lives. They married/connected with/adopted/etc. for love, and they feel that they are mutually lucky to share their lives with one another. That's fully rewarding in and of itself. 

 5. You can't tell by looking at us which particular member(s) of our family has the diagnosis because HIV doesn't have a certain "look." It could be one of us, or two of us. It could be all of us. To us, it doesn't matter which one(s) it is...what matters most is that we are family and that we have each other. 

 6. Families like us are everywhere, and we are diverse. We are black, we are white, we are Latino/a, we are Asian, we are indigenous/First Nations, we are biracial/multiracial. We live next door to you, go to school with you, we are your physician, we are your attorney, we are your cashier, we are your stylist. We are gay, straight, bi, pan, ace. We are neurotypical and neuro-atypical. We are old and young, citizen and immigrant, rich and poor. 

 7. HIV is just one part of the many aspects that make up our family. It's important, but so are so many other things. So please don't dwell on it. We don't want your pity. We just want your friendship and your respect; the same respect you'd give to any other family. 

 8. We are NOT ashamed of HIV, but for various reasons while some HIV affected families are pretty open about it others choose to maintain a sense of privacy about living with HIV. Both choices are equally good and make total sense. Every family has a different support system, lives in a different community, has different strengths, different challenges, different needs. Disclosure is very individual; with some families preferring being more public, some preferring privacy, and some falling in-between the two. However, if we do entrust you with information about our HIV status, we expect you to abide by THE LAW and not share with others without obtaining our explicit permission. 

 9. It hurts us when people use stigmatizing language about us and about HIV such as "HIV infected" and "AIDS victim." Neutral and person-first language is preferred by most people in the HIV community. 

10. We need you to align with us and help draw attention to issues that affect us - because although your family might not be like mine because HIV is a public health issue inadvertently those issues affect you in some way too. Stigma, lack of interest in HIV related issues, and misinformation about HIV hurts more and causes more destruction than HIV itself ever will. It is the reason why the saliva of a person living with HIV is consider a "deadly weapon" in many states and exposing someone to it can lead to a conviction of "attempted murder" even though HIV isn't transmitted that way. It's the reason why we are at risk of having critical HIV research and services funding slashed at state and federal levels - even though there is still a great need. It's the reason women and girls living with HIV experience violence at a rate four times higher than those without HIV. Stigma is deadly, and there's only so many of us - families like mine - out there. We need families like yours, that are not affected by HIV, to help dispel stigma too. Help "infect" everyone with the truth so that we can be accepted and not feared. 

And here's how to start!

For more information about HIV, visit some of the websites below. Get educated!

Image result for hiv
Image is an Avert infographic with text that states "HIV is NOT transmitted by..." and then images and text state: insect bites, toilet seats, kissing, sharing cutlery, touching.

Sunday, September 20, 2015

Don't you DARE call my Autistic son a "sissy"

(A nearly identical version of this post is also published on the "Respectfully Connected" blog.)

"Don't you DARE call my Autistic son a "sissy!"

These are the words that I wish I had uttered on that particular day. It was a sunny, beautiful Saturday afternoon - made even more beautiful by the fact that it was my youngest child's birthday. Five years old! We had plans for a fun-filled day that was going to be spent doing things that he enjoyed and I was very excited. Maybe more excited than he was!

My brother-in-law had planned to give the birthday boy a haircut, but I ended up having to take him to a barbershop instead. It wasn't anyone's fault; my brother-in-law is a retail manager and had to go in to work earlier than expected because of some scheduling issues with his staff. I was disappointed because he does a great job cutting my son's hair. He understands that having an autistic nephew means that haircuts need to be done a certain way in order to not cause discomfort or tears. His approach is gentle, slow, explanatory, and he is willing to let my son take breaks if needed. It's difficult to find people who are similarly accommodating, especially on short notice. So I called the barbershop I use for my older boys, explained the situation, made an appointment to arrive within the hour, and hoped for the best.

En route to the barbershop I explained to my son what was happening so that he could be prepared, and asked him what I could do to make him feel more at ease when it was his turn. When we got there, I was ushered over to a particular barber (the one who we were scheduled to see). I shared with him that I was the one that the owner had told him about, and I introduced him to my son. I explained that I would be sitting on the chair and my son would be sitting in my lap for the duration of the haircut because he was not comfortable sitting on the chair alone. I also explained the following:

  • that the apron used to protect clothing from falling hair not be fastened too tightly around my son's neck,
  • that my son had requested that I sing songs from various Disney Junior shows during the haircut to help keep him calm,
  • that my son would need to inspect and "test" the electric razor against his hands before allowing the cutting to begin,
  • that only I was to hold my son's ears down when we got to the part of the haircut requiring that, not the barber,
  • that throughout the haircut my son needed the barber to explain what was going on and to pre-announce any changes, i.e. the need to pause and switch to a different razor,
  • that if it got to be too much we might need to stop, even if the haircut wan't "perfect," just as long as it still looked decent, and 
  • that regardless of all of these precautions, my son would probably still cry.

He listened and told me that he was fine with all of these things. My son and I went to sit back down to wait. Some minutes later it was our turn. I said a quick prayer, and then we took our seats and got started.

It's important to me that I always respect my children's privacy, so I won't go into specific detail about how my son reacted during the actual haircut. I don't believe in "live tweeting" or otherwise describing for others the difficult moments my children face and what they might do/say when they are having a hard time and are not at their best. Let's just say it wasn't the best experience of his birthday. Let's just say it totally sucked. And if not for the fact that he was really overdue for a haircut, I would have preferred that he not even have to go through it. :(

But my son's reaction is far from the worst part of this post. That would instead be a person who was waiting there to get his own hair cut. I don't know the name of this male presenting person and I have never seen him before (and I hope to never see him again). Let's just call him Mr. Ableist Sexist Jerk, or Mr. ASJ for short. 

Mr. ASJ is the one who prompted the title of this post. Mr. ASJ took it upon himself to bully a little child. A child who was clearly in agony. A child whom he did not know and whom he had no right to address in such a way. A child many decades younger than he and a child with a disability who was not in a position to defend himself.

I'll spare you the details - and I'm sparing myself them too, because to type them is to "relive" them and I would find that to be triggering. I'll just give you the highlights of some of the *lovely* comments Mr. ASJ felt the need to hurl at my five year old CHILD.

"Hey, you need to stop all that crying. That's too much crying. Nobody wants to hear all that."
"Are you a little boy? I don't think so. Maybe you're a little girl. Because a boy wouldn't be crying like that. I think you must be a girl, huh?"
"Stop acting like a sissy. Only sissies cry for no reason. Haircuts don't hurt."

I didn't realize what he was saying nor that he was addressing my child; not at first. My concentration was primarily on my child and trying to keep him comfortable; plus as I was in close proximity of the loud crying it was difficult to figure out what anyone else was saying. I could tell the man was speaking but wasn't paying attention to what he was saying or who it had been directed to. Lots of people were talking (and most of them had to raise their voices in order to hear one another over my son's sobs and over my attempts to console him), so it wasn't obvious to me that I needed to pay attention to others' statements when I already had my hands full with my son (literally and figuratively).

It was not until the barber who was cutting my son's hair stopped what he was doing, stood up tall, and said, "Man, you need to quit hollerin' at a child like that. This boy isn't bothering you so you need to leave him alone. He's a boy with autism so you don't know if it's hurting him or not. He's my customer and you need to show my customer some damn respect in here."  To which Mr. ASJ said,

"That boy doesn't have autism. I heard him talking. He's just a mama's boy."

That's when it dawned on me that the tirade, which I had ignored, had been directed at my baby boy. And that though I hadn't been paying attention, the barber had heard it all, gotten upset, and was speaking up to defend my son.

I am generally a nice person. I consider myself pretty tolerant and I give people a "long leash." But when I get mad, I get mad. There is some truth to the phrase, "Hell hath no fury like that of a woman scorned." And then to add insult to injury you are MESSING WITH MY CHILD?!?!?! Oh heck no. The mama bear in me is far from tame. And I had already had a slightly stressful start to my day already too? I could feel the anger rising up in me as I prepared a retort in defense of my child. It was about to be ON!

And just then my son's tears, which had subsided for a short while, resumed. Louder and with more fervor. In just that moment I abandoned my plan to give Mr. ASJ a piece of my mind and turned my attention back to my son. I began singing to him again and slightly rocking him the way he likes, and telling him I was proud of him, I loved him, and that he was doing a great job. I told him we could stop the haircut any time he liked. The barber joined in with me, telling my son, "You're such a good boy! You look sharp too! Wait till you see your haircut. Almost done now."

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This was NOT a welcome situation on my baby's birthday. Not at all. But blogging helps me cope. Although I sincerely doubt Mr. ASJ reads my blog. But in case he ever comes across it, this is what I wish to say to him:

To the ableist, sexist jerk who was at Phayes II Barbershop in Houston, Texas on July 25, 2015:

I am the mother of the Autistic little boy you were bullying on Saturday. I want to thank you for being a living example of everything I am teaching my son NOT to be. That way he will have no difficulty identifying what behaviors he needs to avoid. Don't you know it's rude to chastise little kids? Especially OTHER PEOPLE'S kids?

Like the barber told you, my son is Autistic. Just because he can "talk" doesn't mean he isn't Autistic. He has a disability, thank you very much, and he was crying because haircuts are very difficult for him. Yes, I realize his crying was very loud and that it might have bothered people. I was trying my best to calm him down and you yelling at him wasn't helping. Instead of you being sensitive to him like every other person in the shop was, you made it worse. I'll have you know that calling my child a "mama's boy" isn't the insult you meant it to be. I am his mama and I'm proud to have my boy's back all day every day. I'm raising him to be a strong black man. A lot like all the other men that were in there that day, except for you.

A REAL man wouldn't yell at a child. He would comfort him. A real man knows there's nothing wrong with crying. He knows there's nothing wrong with being a "little girl" and doesn't think that calling someone a "girl" is some type of slur. Don't all "little boys" come from women? And wasn't a woman once a "little girl?' Is there something wrong with being a "little girl" anyway? My son isn't one; he's a boy, but what are you implying about women if you try to insult a child by comparing him to a girl?

You know what else a REAL man knows? He knows that to call an AUTISTIC BOY A SISSY is the height of disrespect. It's rude (and homophobic, for that matter) to call any boy a "sissy,' but it's especially rude to call Autistic boys such a name because of the painful history associated with reparative "therapies" such as the UCLA "Sissy Boy" project (created by the same people behind the UCLA Young Child Project - the Lovaas school of thought, which brought us ABA therapy as a widespread intervention for autistic individuals, especially children).

What is a "sissy" anyway? Define it. I'd love to hear what you think one is. Because then instead of just calling you an ABLEIST jerk who has a problem with disabled people and a SEXIST jerk who has a problem with women I can also call you a HOMOPHOBIC jerk too. And an ANTI-FAMILY jerk. Because there's nothing shameful or wrong with a child expressing their feelings nor with a mother comforting her child. I am raising my son to know that when he is hurt or scared I am there for him. I'm not ashamed of being that type of parent, and I won't let you make my son ashamed of it.

I am angry at you, and I can only hope that my son did not hear/understand your words. I have no idea if he did or not. But in closing, I am leaving you with the words of a blogger who calls herself Rev. Momma. This is her Prayer for Bullies and those they bully:

"Lord, soften the hardened hearts of bullies. Tame their harsh tongues when they threaten and puff themselves up. Restrain them in their haste to tear others down. I cry out and wonder why they are the way they are? Help me Lord to be strong, make me a fortress in their assault. I do not know why they do what they do...I am hurt and angry by their weapons of intimidation, fear, and manipulation...Let bullies cease their desire for a control which creates chaos and disunity."

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