But, today, I just want to look at this whole situation a little more and try to express some of my feelings about it. To be honest, I keep finding myself continually torn as I read these families' blogs. On one hand, I applaud their efforts to raise and spread education and advocacy about HIV. I think they are doing a great job of it too. But, on the other hand, I keep finding myself having an unsettled feeling about the fact that they are choosing to disclose their child's HIV status before or without that child having any choice in the matter. I really can't quite make up my mind on whether I agree with this or not. Let me try to get some of my mixed feelings out about it here, and then maybe others can join in and give their input also...
Some Pro's of Disclosing
- The family becomes instant advocates and educators for HIV.
- Family, friends, and strangers learn more about HIV, and learn to better accept people with HIV.
- The child may be raised feeling totally accepted and normal, and not have to be ashamed of his/her disease.
- More people learn that HIV adoption is an option.
- Maybe it will lead to more widespread acceptance, and help to end stigma and discrimination.
- Sometimes it is solely the parent's choice, and the child is being afforded no power of his/her own in making the decision to disclose.
- This could lead to unwanted discrimination for the child... in schools, activities, friendships, relationships, and even jobs in their future.
- Once this child's name is linked to HIV, in full site of the public eye, he may never be able to go back and erase that.
- Not all individuals (adults or children) are made to be advocates. This child may not want to disclose and become a life-long advocate. MANY people with HIV feel more comfortable keeping it private, and that is totally okay.
- If a child isn't involved in this decision-making process to disclose, it may later become an area of resentment or issue within the family.
- Choosing to disclose your child's HIV status as a baby is a bit like baptizing them as a baby... making a huge life decision for them, before they are even ready to learn, understand, or form their own opinions about it.
- What if my mom, months ago, had decided that she had the right as a parent to disclose my HIV status to whoever she wanted? (Or maybe people will say this is different b/c I brought it upon myself whereas these children were just born with it?)
- Does this issue/situation change at all depending on whether this is an adopted or a biological child?
- Many professionals (social workers, doctors, etc.) in Pediatric AIDS Units often discourage families from disclosing to schools and other places unless absolutely necessary. Should we trust these professionals, or just make our own opinions of what is best?
- Is there a way that families can still be HIV Advocates and educate about the disease without disclosing the child's status?
- We would share with family and friends if our child had another disability, so why not HIV? Is it or should it be different?
- Couldn't families just hold on to the information for a bit, and then once the child is old enough, let them be a part of this huge decision making process... at which point the family could still become the advocates they so desire to be?
Here is a link to a blog post discussing a mother's feelings about disclosure that I thought was pretty good.