How to Talk About Your Child's Health Ethically

Earlier this week, Spencer Elden filed a lawsuit against Kurt Cobain, Krist Novoselic and Dave Grohl due to the iconic cover image for Nirvana’s Nevermind album. According to TMZ, Elden claims the album cover, which features a photo of him as a naked baby, has “caused him to suffer lifelong damages.” In fact, Elden goes so far as to say that the album cover could fall under the umbrella of sexual exploitation.

While the lawsuit itself may seem a bit much given that the album dropped 30 years ago, Elden points out that he was not old enough to consent to the use of his photo for the cover art — which is a similar sentiment that many adults with disabilities share when they recount how their parents handled certain aspects of their childhood.

As the parent of a child who lives with cerebral palsy, I often find myself walking a fine line when discussing my daughter’s health conditions. On one hand, I find that disclosing her disability can be beneficial, and there are lots of friends and family members who have been following our journey online through social media and similar communication outlets. However, I know that there will come a time when my child is old enough to make her own decisions surrounding disclosure and her overall healthcare — and I want to make sure that what I’m doing now aligns with those future decisions and beliefs.

I think it’s hard for parents to always know what’s ethically acceptable when handling their child’s health. Most of the time, we find ourselves in situations we never prepared for, and we have no way of knowing what the “right” or “wrong” choice is. In talking to adults who live with disabilities and chronic health conditions, though, I feel like I’ve learned at least a few things about discussing my child’s health ethically.

Consider the Consequences of Sharing Information Publicly

I often see posts where parents include pictures and very intimate details about their child’s health condition in online forums and Facebook groups. While I understand that most parents do this in hopes of connecting with parents dealing with similar situations, I don’t think that most of them stop to think about the short and long-term consequences of their actions. If the current lawsuit surrounding Nevermind‘s cover art can teach us anything, though, it’s this: Even if our kids don’t know any better now, they may have strong opinions about how their health information is discussed as they grow up. 

In general, parents should think about whether the possible benefits of sharing information publicly outweigh the possible risks. If sharing specific information could harm your child personally or professionally for any reason, then it’s probably not worth sharing at all. Similarly, if you plan to share in a way that makes your child easily identifiable, you may want to rethink that since it can leave your child openly exposed.

If you decide to share information in a public way, consider sharing only the items you feel are most important to convey. Also, consider finding ways to share information that’s at least partially private. These safeguards can help prevent problems as your child grows up.

Involve Your Child in Age-Appropriate Ways

The American Medical Association’s Code of Ethics states that parents don’t just have the legal responsibility of making their child’s medical decisions for them — they also have the responsibility of teaching their child how to make their own decisions in terms of disclosure and medical care. While most young children don’t possess the reasoning skills to make major medical decisions, that doesn’t mean you can’t at least fill them in on what’s going on. In fact, many parents are surprised by just how much their kids do understand when they share information with them.

You can begin by teaching your child about any health conditions they live with from a young age. You can do this by simply explaining the condition and telling your child what the condition is called, or you can use books and other forms of media to help inform your child. In fact, using media can not only help your child more fully understand their health, but it can also help them see themselves represented in media.

As your child grows and begins to understand their condition more fully, you can increase their autonomy by involving them in conversations with their treatment team. Let your kid answer their doctor’s questions, and provide your child with the opportunity to ask the doctor questions too. Over time, your child will develop their own voice — which will help them advocate for their needs during adulthood.

Respect Your Child’s Rights

At the end of the day, the only person who can decide what is and is not appropriate to share about your child’s health is your child. As parents, it’s our job to protect them and love them unconditionally. Sometimes this means we must listen to their wishes about how much to share or not share, even if their opinion goes against our own.

As soon as your child is old enough to follow basic conversations, they’re old enough to provide consent. You should always ask your child before sharing what they may consider private, personal information, then respect their decision either way. You should also provide your child with the space and autonomy to decide what information about their health they’d like to disclose to friends and classmates and let them decide how they’d like to identify.

Furthermore, if your child asks you to remove posts or photos, listen to them. It’s important to show your child that you respect their rights and that they can trust you.

There are a lot of gray areas when it comes to discussing your child’s health in an ethical way. At the end of the day, though, it’s up to you and your child to decide what information you share and what details you keep private.