The Stigma Double Standard

Every so often people with a bone to pick take aim at Project HOPEFUL, critics vocal about all we do wrong and how they can do it better.

We get it. We’re not for everyone. Our brand of advocacy is a little too in your face for some people. We’ve been rocking some boats with the Truth Pandemic, apparently. Some might prefer we sit down and shut up.

We’d like to sit down, shut up, and maybe take a load off while we’re at it. Project HOPEFUL has been working since 2006 to help find homes for orphans, educate about children living with HIV/AIDS, and support families who would seek to adopt these children. It’s tiring work. You see, we all might like a little break.

It is not likely to happen any time soon, though. Not while the Stigma Double Standard exists. Believe us. THIS is personal.

Have you heard of the Stigma Double Standard (SDS)? It is an insidious “little” double standard that isn’t really small at all. We believe its implications are profound. SDS starts out like this: Parents of children with HIV/AIDS shouldn’t disclose their child’s status if they want to combat social stigma. This only turns their child into a cause. The best way to handle this is to lobby in other ways.

Then, SDS takes another turn and assumes that every parent on the front lines of advocacy for orphans/adoption of children with HIV/AIDS must be in it for all the lovely attention they get.

The Stigma Double Standard truly baffles us as a staff. Do parents running races to raise funds for a cure for Leukemia face this? What about those with public care pages outlining their child’s congenital condition or an upcoming surgery in detail? Are parents breaking their child’s trust in this way?

Honestly, we want to know if any parent advocating for their Autistic child was told to sit down and shut up, to stop turning their child into a cause. Have those parents been told that the way to help their Autistic kids is to keep their child’s Autism a secret? Keep the condition nameless and faceless so people can never put the pieces together and SEE that their ignorance effects REAL LIVE CHILDREN?

Yet ALWAYS this is the case with our kids with HIV/AIDS. People continually want us to keep them out of it. They want us to shut up and not speak about our children as the real kids they are; kids living and THRIVING with HIV/AIDS.

What about any other conditions?

We could go on and on.

Hmmmm, what about a child with Tourette’s Syndrome? Should that child’s parent shut up about Tourette’s and stop educating others because it makes some people feel awkward to have to learn the facts and admit they didn’t know anything about Tourette’s before? Would critics argue that the parent’s efforts to educate the public about Tourette’s is actually damaging to their child? That somehow this child is needlessly being exposed to stigma through their parent’s efforts to educate the general public?

The truth is we can’t think of any other disease children might have where people would ask their parents to hide the fact and keep it secret. And why? Why should we? Is HIV/AIDS anyone’s dirty little secret?

It is not for our kids!

Do parents who are serious about advocating for their children in such a public way encounter more criticism? YES. Do their children? Possibly, though so far our staff doesn’t have any battle stories to tell you. Likely because most stigmatizers (this may or may not be a word but for our purposes let’s go with it.) are cowards and don’t usually dare try anything in person.  These people prefer the shadows, talking behind backs and whatnot.

Is this increased potential exposure to stigma a reason to stop advocating? Well again, that’s a personal question everyone must ask themselves. Of course our staff considers EVERY member of our family in making these decisions. (Anyone who assumes otherwise is crazy!) We guess it comes down to how high a family’s tolerance is for criticism, attacks, and just general (excuse our crudeness) CRAP.

No one loves to deal with the above mentioned things. Believe us, if, as a staff, we could wave a magic wand and remove all the nasty and unpleasant bits from our work we would. IN.A.HEARTBEAT. But we can’t.

So, it comes down to a few things:

Someone’s got to be in the line of fire if anything is ever going to change.

As parents we do our best to ensure it is US and NOT our children who take the heat.

Yes, we know our kids might feel the heat sometimes too. We’re not happy about that by any means! We do our best to limit the heat factor for them. And we do a pretty darn good job of it.

Most of our advocacy happens online, and at our workshops. It’s not like any of us trot our kids out every weekend for an HIV/AIDS parade down our neighborhood street.

Besides all this, we rather think our kids are up to the challenge of facing stigma.

So far, none of our kids who are old enough have told us they would choose life to be any other way than it is. In fact, all of the ones who are old enough tell us that life before disclosure was much more stressful. They were filled with fear that someone might find out. Now they can just “be”.

That’s because we surround them with a loving support network where they don’t have to feel ashamed about their status. They are raised to know that IF a problem exists  with their positive status it lies with others and not themselves. We talk openly about the trials and struggles that come along with being HIV-positive.

We are actively working to build in our children the character and life skills we believe are necessary to thrive with HIV/AIDS. One of the ways we do this is by allowing them to see us work through challenges. And by working through them together as a family.

When adjustments need to be made for the sake of our kids we, as parents, make them. In everything we try our best to serve our children’s needs first. THE KIDS ARE THE CORE OF OUR WORK. period.

We’ve said it repeatedly that we believe advocacy is the best way to make the world a more friendly place for our kids with HIV.  We know this to be true through experience. After all, Project HOPEFUL has a track record of proven effectiveness. God sure has blessed our work. We are thankful for that!

We’ve written extensively on the topic of disclosure before. Project HOPEFUL believes it is an intensely personal decision with many factors for parents to consider. It’s not a decision that should ever be taken lightly.

Our staff understands that there will always be people willing to believe the worst in others. For these people it won’t be a stretch of the imagination for them to believe we are attention hogs carelessly flinging our children to the ignorant public to be eaten alive; that we love the “cause” more than our kids.

To these folks there’s only one thing to be said: If our work doesn’t illuminate things for you… well, then we don’t know what to say. But at least cut us some slack and don’t criticize us for being different from you. Don’t assume things about us that aren’t true. Especially about our children! And please stop acting like you’ve got all the answers. None of us do.

We’re all just working through this one day at a time. We can’t say for certain how our kids will feel about everything we do when they are grown. We can be sure we’ll make some missteps along the way. But our intentions are pure. And we’re confident we know how to get back on track if we stumble.

In the end we believe:

If no one was ever willing to speak up nothing would ever be said.

13 responses to “The Stigma Double Standard

  1. This is a fabulous post and why I am honored to serve this organization. Nothing in history has ever been accomlished by staying QUIET!! Our kids deserve to walk in the LIGHT. Let’s send the SDS on STD’s back to HEL where it came from. I love you guys…stay in the revolution.

  2. Very, very well written! I’ve often been too reluctant to share my kids’ HIV status and advocate for the child that need help because of these sorts of insinuations. Isn’t it possible that we love our kids so much that we want to build up kids just like them?

  3. Amen! If it wasn’t for families like yours I would still be in the dark about HIV. And if some people have to get their toes stepped on so an orphan can have a home, so be it!

  4. Putting this in my pipe and smoking it now 🙂 Hmmmmm…..nice 🙂 Really….I agree with everything in this post. I feel it is easy for me because I don’t (currently) have a child who has HIV. I prefer to think of it as preparation for the future, but only God knows if we will have more children and if so what their medical needs will or will not be. I have been advocating for orphaned children who are HIV+ for awhile now and have gotten some really ignorant comments, questions and plain ole MEAN remarks. You are so right. If nobody speaks up, the ignorance wins. Stigma remains. I have to constantly remind myself when I get all worked up that not so very long ago, It was ME. I was the ignorant one. I was the fearful one. I was the judgemental one. I have different perspective now but only because God put me in just the right place to be forced to listen, to learn and to decide how to respond. We need to keep talking and yep, that means sometimes being slammed by people who don’t agree or don’t like it. Project HOPEFUL is pioneering for all those to come behind. The darkness does not like the light….because the light dispels the darkness! The stigma is pretty doggone happy I think and does not want to be slayed! TOO BAD! Keep pressing on!! Change is happening….lives are changing and eyes are being opened!

  5. AMEN! Thank you, thank you, thank you! HIV is not a “dirty little secret” any more than Autism or Leukemia. The stigma of these children carrying a “sinful disease” needs to be eradicated.

  6. I am somewhat troubled by this notion that if I choose to disclose my child’s HIV status, the only reasons that I would do so are self-serving. Either I would be too uncomfortable keeping a secret and couldn’t tollerate feeling like I was lieing, or I am an attention hound; that I somehow suffer from some sort of media Munchausen’s by Proxy. I only disclosed my child’s condition to make her a cause that would bring attention to me.
    If I understand this thinking correctly, the best way for me, as a mom, to normalize and de-stigmatize my child’s condition is to make sure that I don’t bring it up to anyone. In this way I protect my child’s identity and allow her to live a normal, healthy, and unencumbered life.
    I don’t get it.
    A life lived this way to that effect is not possible. The very nature of this level of privacy is promotive of the stigma I wish to avoid. Which is more offensive to my child? The fact that she has HIV and I talk about it the same as I would mention the fact that she became a blessing to me through adoption, she suffers occasionally from asthma, and she has brown eyes and blond hair, or if through out her life it becomes more and more obvious to her that I have systematically avoided ever mentioning her health condition, shrouding it in secrecy.
    This implication that if I disclose my child’s health status I am doing it only for attention that it may bring me- that I have adopted a cause and not a daughter, has far reaching implications that affect all areas of adoption. Adoption itself still carries a hefty stigma of its own. Does it mean that I adopted my 3 children from Ethiopia purely for the attention it brings me? I can’t possibly disguise the fact that they are adopted. They daily, openly carry this fact around with them like a sign around their necks stating “I’m adopted!” Should the fact that the best 2nd best solution for my children from Ethiopia is that they will have a pasty white mom be the reason their adoption shoud not have happened because I am automatically “outing ” them?
    This idea is rediculous.
    So why doesn’t that reasoning also apply to my daughter’s HIV status?
    Why shouldn’t I treat it as insignificantly as her brown eyes, blond hair, and asthma, and educate others to do the same?
    The only way to combat stigma is to rebuke it’s power. I reject it to it’s face and will raise my child to do the same. She is a child of the light and will live in the light. HIV is something she has, it is not who she is. I will not allow it to cast a shadow over her by cowing to the fact that stigma exists, just as I refused to avoid adopting children from Ethiopia simply because they didn’t look like me and woud by very nature of their differences to me become on some level a platform for biracial adoption.
    We can’t have it both ways. We either accept stigma and call it ” protecting our child’s privacy” or we live out loud and accept those consequences.
    Only one of these choices will change the world.

  7. A-M-E-N!! I simply have nothing to add – you’ve said it all here!

  8. jennifer walker

    As Traci puts, LIVE OUT LOUD! Good Work and Great Blog!

  9. prospectiveadoptivemama

    awesome post! speak up for those without a voice!

  10. Wow. You guys rock. I came across your site via Owlhaven. I will remember your words of wisdom for a long time to come.

  11. Pingback: marc smolowitz is still around and shines brightly with 15 stories of hope « a professional queer jew's blog

  12. Keep up the great work!! Thanks for speaking out.

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