The 'Otherness' We Experience as a Family With Kids Who Have a Rare Disease

Over the summer, I contacted the boys’ pediatrician to get her advice about sending them back to school this fall since our youngest was not old enough to be vaccinated. Her nurse responded that they recommend all kids to attend school in person this fall unless they are high risk. Since our boys fall into the high-risk category, she told me to contact their specialists.

This past spring, an acquaintance (and pediatrician) ranted on social media that all kids should be back in school immediately since they were less affected by COVID-19 (this was before the Delta variant) and their mental health was suffering. I pointed out to him that we had chosen to keep our boys home for the entire year, because though their mental health was suffering, we didn’t feel we could risk their physical health. He told me we were in a unique situation and he was speaking for the majority of children.

Early in the pandemic, when many states had enforced lockdowns, someone posted a meme on social media that said people who wanted to could stay home to protect themselves from the virus. It’s a free country, it said, and we have the right to choose self-quarantine. I explained that it didn’t feel like a choice or freedom to stay home for us. I didn’t get a response.

The pandemic has made our family and others like us feel like a constant exception. The asterisk to the general rule. One of the things that’s not like the others. A small minority. This feeling isn’t new for us. Rare disease families and people with disabilities have experienced this “otherness” for a long time, way before the global pandemic.

It’s felt when a highly-rated restaurant isn’t accessible so a person who uses a wheelchair can’t enjoy a nice dinner with friends.

It’s felt when parents are told their child isn’t welcome at a school, because they couldn’t possibly provide for the child’s needs.

It’s felt when an employer won’t hire a qualified, talented, and hard-working person who happens to have a disability because they think the person will be a liability.

It’s felt when a church refuses to enforce any precautions against COVID-19 and doesn’t offer a virtual option so the family whose child recently had a kidney transplant can’t participate in a faith community that is important to them.

I understand the inclination to make decisions based on the majority. But consider this:

• One in 10 Americans is affected by a rare disease. That’s about 30 million Americans.
• In the U.S., 61 million (one in four) adults live with a disability.
• In 2019, it was recorded that over three million children (4.3% of the under-18 population) in the United States had a disability.
• In addition, the U.S. has long been plagued with unequal access to health care, especially among people of color and people with a disability.

Add people who are affected to common diseases such as heart disease or certain types of cancer and the group of people who can be considered “high risk” doesn’t seem so small anymore. Perhaps we need to stop thinking about these groups as anomalies and recognize their needs are greater than we can see from our limited view.

Ultimately I hope you remember that these “exceptions” are people, families, human beings who are worthy of everything life has to offer. They don’t need or want to be pitied. They just want an opportunity to participate as a full member of society.

Our family has decided to venture out into the world again. The boys will be attending in-person school. My husband and I are going back to the office. Not because the boys are no longer at risk for COVID, but because we cannot lock ourselves in our house forever. We are, of course, nervous about this decision but we will do our best to mitigate their risk of infection.

If I’ve learned anything in the past year and a half, it is this: I cannot depend on other people to protect the health and well-being of my children. It’s a horribly cynical way to live, but here we are.