Disability, defects, and keeping your mouth shut


As I was perusing People.com, I stumbled upon a story about Zach Roloff, of Little People, Big World fame, and the birth of his son. His son was born with achonodroplasia, the most common form of dwarfism, the same condition as Zach.

The article discussed how Zach’s childhood has prepared him to help his son through his journey. He is happy to see that the world is more accepting of difference now, and he hopes for an easier time for his son. It was just a simply sweet article.

Then, I did a bad thing. I read the comments section. I know that I should never do this because I always become a cartoon animal with fire blowing out of my ears.

This is one of the actual comments (edited for clarity and grammar):

“Please tell me why anyone would do this? It is completely selfish to knowingly have a child with dwarfism knowing the poor baby will have all kinds of health issues. I have heard, as a child, they have many surgeries often.”

Here is a snippet of another comment:

“If they knew the probability of having a child with this deformity was high, it’s completely irresponsible to do this.”

Say, what?

The issue that these very insensitive commenters brought up is very near and dear to my heart. I was born with spina bifida (if you don’t know what that is, see the Spinal Bifida Association website.)

I have lived a, by societal standards, “normal” life with my defect. Most people who knew me pre-college had no idea that I even had spinal bifida.

That doesn’t mean that I am without ill effects: moderate back pain, moderate scoliosis, a slight limb, a little, paralyzed foot, and bladder problems. Even still, it hasn’t slowed me down from living the life I want.

This brings me to my point. Since I was born with spinal bifida, a neurological disorder, I am at a heightened risk of having a child with a neurological disorder. Does that mean that I should never have a child because it COULD be born with the same defect

I do understand the sentiment of these comments. I worry that I could set my child up to have more difficulties than others might face. I don’t want my child to be called names, joked about, or bullied because of something he cannot control.

I have been made fun of, and it was not fun. I spent many nights reading my DARE book called It is OK to Be Different in order to cope with the jokes. (Interestingly enough, I got made fun of for being short. Just imagine if that mean girl would have seen the giant scar on my back.)

On the flip side, I have many personal reasons for wanting to eventually add a child to my family.

One of the major flaws in the commenters’ argument is that disability and defect is a possibility for everyone. My parents had no reason to believe that they would have a child with spinal bifida, and boom, here I came.

Secondarily, even with a genetic disposition, it is still only a possibility. I get their argument was focused on the increased risk factor which I understand. Even still, it may be MORE likely than it is for other people, but it is still only a possibility.

Finally, if a child is born with a disability or defect, it does not mean that that child should not exist. It also does not mean that it was a selfish or irresponsible decision on the part of the parents. It simply means that the child will have to overcome some difficulties in comparison to their “normal” counterparts. Just think if my parents had decided “well she has spinal bifida (a fact they had no clue about until I was born btw), so let’s just not have her”.

I mean family dinners would be lot quieter without me, but I, a person who is enjoying a fulfilling life, wouldn’t be here.

I realize those comments represent the opinion of only a few people, and it is not a general sentiment. I get that, but big life decisions are hard enough anyway.

The decision to become a parent is a tough one. The decision to become a parent with the chance of defect is an even harder decision. I don’t believe in my heart that the Roloffs or any other couple who are at risk of having a child with a defect go into the decision “irresponsibly” or “selfishly”.

Bottom line: Take the time to soften your heart when you choose to comment about the decisions and lifestyles of others. You never know what other people are dealing with. And if you can’t do that, keep your mouth shut (physically or virtually).





One comment

  1. I always regret when I read the comments. Sometimes I wishfully think that maybe someone has an intelligently articulated counterpoint. I’m always disappointed. At a former employer, the commenters were referred to as mouth breathers and knuckle draggers. Thank you for the very thoughtful post.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s