Disabled Children and Privacy

Parents have an incredible amount of rights over our children and how they are raised in the US. We have access to more private information about our young children than anyone else, and we aren’t legally compelled to keep their medical history secret. So no one is going to make us treat our kids with respect, and no one is going to make us keep their medical data private. We have to choose that.

But I think we should. We live in an ableist world where symptoms of disabilities are often stigmatized and mocked. Bathroom difficulties are high on the list of shameful or scornful challenges. All too often, I see parents of disabled children talking openly and publicly about their child’s difficulties with toilet use. While this kind of talk is fairly common among parents of toddlers of all ability levels, as kids age, most will grow out of toileting challenges, and those that don’t will generally have disabilities. When parents talk about their seven or eight year old child and describe their toilet accidents, they are jeopardizing their child’s future employment prospects.

The internet is forever, and it’s searchable. There are some things no one needs to know about your child. There are some things a few people need to know – like their doctors and school teachers. There are even fewer things that the whole world needs to know, or should know about your child. Future employers don’t need to know about your daughter’s meltdown when she was ten and had the flu. Potential future romantic partners don’t need to know that your son still had bladder control issues as a preteen.

While we aren’t bound by law to protect our children’s privacy, in particular their medical privacy, we should be compelled by love for our children to do so. The next time you think about posting about a meltdown or a toilet mishap or whatever,ask yourself “Who needs to know this?” I’m open about my son being autistic. I don’t go into details about his struggles. I don’t want to bias anyone against him or encourage them to prejudge him or other autistic people based on his toughest moments.

We should encourage the world to love our children and accept them, not to fear them or see them as burdens. Make sure what you put out into the world affirms the rights of your child and adults with similar health conditions. If you really need to vent, if you simply must talk about the bad parts along with the good, do so privately. Call a friend. Write in your diary. Private message with someone who will understand and be supportive and still love your child at the end of the day. The whole world doesn’t need to know about all your children’s struggles, until your children are ready to share those themselves.