Wednesday, May 14, 2014

On The Pros and Cons of Public Disclosure Of Private Information By Morénike Onaiwu

I saw a post online that motivated me to write this. A lot of my thoughts are largely derived from a statement I drafted last year in a private group.

I'm writing today to share some food for thought for those families who are considering the pros and cons of whether or not to publicly disclose intimate details about a minor child, such as issues related to personal hygiene, "aggressive" behavior, sexual orientation, HIV status, sensitive matters about an adopted or foster child's family of origin, etc.

This whole disclosure thing has been discussed many times. There are many different ways to handle different situations. However, I need to speak up about this today. Because "different" does not equal bad. And it sure as heck does not equal SHAME.

My family has made our personal choices. WITH OUR CHILDREN'S BLESSINGS we disclose SOME things publicly about ourselves, while others remain more private matters. In some areas, we have told family, all close friends, and have disclosed to others, i.e. some acquaintances and classmates, on a "need to know" basis; in others, only family is aware. And that's okay. We are living proof that you can exist--and thrive--somewhere between public disclosure and selective disclosure, as we have done for nearly a decade.

Every family is different, and what works for family A won't work for family B. It's important that I say that, because I truly believe that. But I also have to note that even though it is *said* by many, including publicly disclosing families, that "either choice" (openly/publicly disclosing, or not) are *equally* good choices, it seems pretty evident to me that it's not universally viewed that way.

People who are public are lauded as heroes, and it is implied AND SOMETIMES explicitly stated that those who aren't public in the same way that they are are fearful, secretive, or ashamed.

And I'm sorry, but that's bull stuff. For my family, we don't in any way live a shameful, secretive double life.

Despite the fact that we are not public about every aspect of our lives, we live a fulfilling, shame-free life as a proud multicultural, multinational, neuro-diverse, adoptive, HIV affected family of color. We don't lie nor ask members of our family to lie about anything related to our circumstances. We have never hidden the truth from our children, and and speak openly with and in front of them about many related matters.

Our children are well-informed, confident, supported, secure, and loved. Few other 10 and 12 year olds can tell you as much as mine can about stimming, echolalia, sensory issues, HIV transmission methods, different classes of HIV meds, adherence, opportunistic infections, treatment as prevention, etc.

There is nothing wrong with publicly disclosing families. I have the utmost respect for what you are doing. However, I'm freakin' tired of many of you throwing those of us who (for good reason) have made different choices than you under the bus!!!!

It is fully possible to work diligently to dispel stigma, increase awareness, and promote acceptance without publicly disclosing sensitive details about a minor child. There are many ways to be an advocate--even a public advocate--that do not require such disclosure.

You can be public. But I still think you should consider exercising some decorum. I don't believe that the world needs to know that your child's birth mom was a meth addict. I don't think the world needs to watch a YouTube clip of your autistic child having a meltdown. I don't think the world needs to know that your teen smears feces. I don't think the world needs to know that your internationally adopted 3 year old child Kalkidan Morgan who lives in Anytown USA is HIV+, complete with full name, pic, address, city, etc. (Edited to add this: I am not hating on public HIV adoptive families, but some [NOT ALL] need to re-assess their method and their motives.)

As an advocate myself, I totally get the desire to get involved in community affairs. But I'm a mom first. That will ALWAYS come before my advocacy. And as a mom, in conjunction with my family I have made a decision regarding disclosure that works for us--selective disclosure rather than public disclosure. It might not work for YOU, but it works for US; SHAME ON ANYONE WHO SAYS THAT WE ARE LIVING IN SHAME.

This is super long, but the main point is that there is a need for public families, and we have all learned from them. For some of you, those who have been public were an influencing factor in helping others. And that's a blessing.

But keep in mind that the water's fine on the other side. I'm not just saying "it's fine" when it's not truly. I mean it's really fine. It's not only okay to not be public, for some families it is the better choice. Period. Please think about these things and consider all factors and all sides of this. Don't just follow the status quo.

And by the way...

If you don't like what I have to say, please unfriend me. I'm not interested in a back and forth about this. If we can't respectfully disagree, then we can't respectfully be "friends."

Morénike Giwa Onaiwui is the founder of the former Positive Playdates, a playdate group (now merged with a local nonprofit) that connected HIV affected families and refugee youth, and of the newly launched Advocacy Without Borders, an initiative to reduce disparities through education, community advocacy and self-empowerment. Additionally, Morénike is currently involved in a variety of leadership efforts related to Ryan White Part D advocacy, namely the "Save Ryan White Part D!" Initiative. See her complete biography here.

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