Our Bizarre Fear of Genetics

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by Anneliese Knop | Anneliese is a counselor who’s primarily worked with children and teens. She’s blind AND an experienced babysitter and childcare provider.

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I love questions. I think the question is the most powerful tool given to humankind. Last month I asked you the question “would you hire a blind babysitter?” We went over some benefits to such an unusual choice.

This month I’d like to share with you a question that I get asked a lot. I’d like to know how many of you have fielded this question, or been the one asking it. I want to share with you its impact on me, and a strategy for asking better questions in the future.

“Are you worried about passing on your blindness to your kids?”

I got asked this in high school, in college, throughout my 20’s, and now into my 30’s. I get asked by friends, family, coworkers, and random strangers who strike up conversations in assorted contexts. And I know I’m not the only one. If you’re an adult with a disability I’m guessing you’ve fielded this query at least once in your lives. Probably more like once a year, or more. And if you’re an adult without a disability, you might have even asked this question.

You can substitute any disability for “blindness” in the question, of course, but I’ll be writing from a low-vision and blindness perspective because that’s what I know. Parents and prospective parents with other disabilities, I’d love to hear in the comments if you have had different, or similar, experiences to this.

Now, I haven’t taken a poll or found research supporting this, because research on the social interactions of people with disabilities is scant at best, but it seems to me that there’s a widespread, surface-deep opinion among those without disabilities that most disabilities are heritable conditions. That is, they can and most likely will be passed from parent to child.

But I have also discovered that, given a simple reminder, most people will suddenly remember that there are DOZENS of ways to acquire a disability. I’ve listed just a few below.

Accident

Work-related injury

Athletic injury

Non-genetic birth defect

Disease (diabetes, stroke, et cetera)

Assault

Cancer

Self-injury or attempted suicide

Medical malpractice

And yes, of course, genetics.

As fate would have it, my condition is genetic. But that’s not the end of the story. Since I’m not a geneticist and you don’t read this blog to understand genetics, I won’t go into details. Suffice it to say that there are varying degrees of heritability within genetic disorders. I won’t tell you how likely it is that I’d pass on my blindness to my children or grandchildren because, honestly, there’s a much more important component to that question we should be looking at.

“Are you worried about passing on your blindness to your kids?”

The conversation just got complicated, didn’t it?

If I were to advise the elimination of this question, then those who do have concerns about passing on their disabilities would find themselves and their fears silenced in a deafening wave of toxic positivity. Yet as it stands, the question all but implies people with heritable disabilities ought not to reproduce!

When I get asked this question I immediately feel defensive, preparing arguments to prove that my childbearing choices  come from a position of well-informed confidence. I feel vaguely insulted that someone thinks I haven’t thought this through yet, though I try to remind myself that oftentimes, the question comes from a place of genuine curiosity rather than judgment.

It’s a burden I wish I didn’t have to bear. But I also don’t want to dissuade the genuinely curious from trying to learn about a new perspective. There has got to be a way to walk this balance between perpetuating ignorance and adding labor to the lives of those who really can’t spare the time or energy.

So as usual, let’s pull out my go-to-tool, the question, and see what we can make out of this situation.

Just as I’ve received half a dozen versions of the original question, you won’t be surprised to read that there are several possible “right” questions to replace the problematic one. But I’m not going to give them away, of course. Instead, I’m going to give you some criteria so you can craft your own questions – or share how you’d like people to show interest in your life. 

People Doing the asking:

1.     How personal should you get? Just because you’re curious doesn’t mean you’re entitled to satisfaction, and asking about someone’s personal medical history in connection with their childbearing choices gets really personal, really fast.

2.     Where does the curiosity come from? Are you trying to check in on a friend or family member? Fascinated by a different perspective? Are you worried about the child’s future challenges?

The first question will tell you whether or not you should bother asking at all. The second one speaks to the same issue, really. Interest in a friend is a great motive to ask a question, but pure curiosity satisfaction might not be. If you know the person well enough to know they like sharing about their unique experience, then you might consider asking. But if the answer to the first question gives you pause at all, then your curiosity needs to be directed at a blog or YouTube channel, somewhere that someone has chosen to make this deeply personal aspect of their lives, public knowledge.

And finally, if you answered “yes” to part 3 of question #2… I won’t’ condemn you for having a genuine interest in a future child’s welfare. That in and of itself isn’t a bad thing. But I will direct you to question #1 again. You are probably not the first, or the fiftieth person to ask this question. And if you’re not involved in the parent’s life, how likely are you to be in the child’s? So, is sating your concern really valuable to the child or the parent?

Growing up with a disability is hard. I know from experience, as do many parents with disabilities that might get passed on. I promise you, the thought of the disability’s impact on their future children HAS, in fact, crossed the minds of parents with disabilities more than once.

Now that you’ve decided to ask the question, go back to your goal. The truly safest goal is to show interest in someone’s life for the sake of investing in the relationship, be it a family member or friend, or maybe a colleague. But we’ve agreed that the original question doesn’t satisfy this goal. So, how does your friend or family member, like to have you show interest in their lives?

How can you best speak your loving interest into the life of a friend or family member with a disability? Remember, this question is for them, not you.

For Those Being Asked:

It’d be nice if we could control who asked the question, wouldn’t it? But of course we can’t.  Instead, we can control how we respond to the question, and we can pro-actively communicate within our circles, how we’d like people to tread upon the topic of our different abilities.

My advice for responding is two-fold:

1.     Don’t go looking for micro-aggressions without good reason. Life is hard enough without looking for trouble that may or may not be there. It’s much easier to assume peoples’ intentions are innocent until proven guilty.

2.     If you DO have reason to suspect self-interest or harmful motivation behind the question, you can – and maybe even should – refuse to answer. Tactfully change the subject, ask them about their motive, or simply tell them “I’m not comfortable/not going to discuss this with you.” These are good options if you’re just tired and don’t have the energy to divine motivation or don’t feel like sharing, even with someone you feel safe with. It’s your story, you can tell as much or as little to whomever you please.

Our lives are different than those of the majority, and yet our lives intersect with that majority, in both the present and the future. As we have a right to be curious and invested in their lives, so they in ours. But the right to curiosity does not include a right to satisfaction. 

Questions can change the world. That’s why it’s important to think carefully about why and how we ask them, so we can ensure that the impact we have will be positive and growth-oriented whenever possible.

Parents with disabilities, share below when someone asked you a question that truly honored and encouraged you. Parents without disabilities, because I am blogging about this in public you can be assured that your favorite blindfluencer is happy to take your questions.

And remember, if you like what you see here and you want to ask non-parenting related questions, come Look on the Dark Side.


Anneliese, author of "The Blind Babysitter" is wearing a black blazer, stands next to a tree with wintry grass behind her. She is in profile to the camera, but with her head turned to smile at it.
Photo Credit: Caylah Coffeen

Anneliese Knop, Author

Anneliese Knop, Author

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