Sticks and Stones (Why People First Language Matters)

When we received Eisley’s diagnosis at my 23 week anatomy scan, I walked out of the ultrasound feeling like I was no longer pregnant with a baby, but with a diagnosis.  I was pregnant with spina bifida.  Or so it felt like.  We didn’t even know if it was a boy or a girl, but we knew that the baby had spina bifida.

Thankfully, we had our gender reveal party two days later, and we found out she was a girl.  The next day, I turned to Josh, and said, “We need to name her.  Tonight.”  I made a short list of names while he was at work, and that night, we decided on one.  Eisley Mae.


Finally, I felt like I was pregnant with Eisley and not spina bifida.  She had a name, and an identity beyond her diagnosis.  And for the rest of my pregnancy, I could be excited about the person she would be, disability and all.

Now that she is here, it is much easier to see her humanity beyond her disability.  Sure, she is almost 15 months and has yet to pull up on her own, but she also loves Daniel Tiger and says, “Maow!” when she sees one of the cats.  I have to be aware of her behavior and watch for symptoms of shunt malfunction, but she loves bananas and cuddling, like many other 15 month olds do.


I want the world to see her as I do-a person first.  She is different than a typical person, but she has so much more to her than her disability.  For this reason, I am very careful about the language I use when speaking or writing about her.  Rather than saying “she’s a spina bifida baby,” I say, “she has spina bifida,” or, “she’s a baby with spina bifida”.  It’s a very subtle difference, but an important one.  Person First language seeks to define the person as just that-a person.  Their disability is a descriptor, and should be used after their humanity.  Just like I would prefer not to be described as “a short girl” but rather, “a girl who is short”.  In my case, my short stature is not a disability, but it is true.  I am 5’0″, well below average height, but that is not the most important characteristic about me.

The same applies for people with adaptive equipment, as well as other disabilities.  Rather than describing someone as “confined to a wheelchair” (which is another blog entirely-they are not “confined”-their wheelchair actually gives them freedom and abilities they would otherwise not have without it!), it is more respectful to describe them as a “person who uses a wheelchair”, or a “wheelchair user”.

Although I am not a part of other disability parenting communities, I have heard that many other disability communities champion Person First language as well.  So instead of saying “He’s a Downs kid,” a more respectful phrasing would be, “He has Downs Syndrome.”

If disability is not your every day, it may not seem like a big deal, so why bother? It does take a little bit of thought and effort to change the way we think and speak about others, but from my experience, you can’t ever go wrong with being respectful.  If you’re not sure, a good rule of thumb is to listen to how a person with a disability describes him or herself.  They would not refer to themselves in a way they feel is offensive, so it is usually a respectful way to describe them.  And many people with disabilities are open to educating others about their disability, so you can also just ask them what they prefer.

Words matter, and they do sometimes hurt.  Being thoughtful with your words can make a world of difference to someone who already has to work so hard to be known and respected by the world.

Maybe people get tired of me gushing about Eisley, but I don’t think I’ll ever stop. #sorrynotsorry.  I just want everyone to know what an amazing person she is.

A person with spina bifida.



I can’t change disability-but would I?

When I go back and read my Instagram post from June 24th, 2016, I can feel the sadness and pain in my words as if I had just typed them yesterday.  It was the day we learned about Eisley’s diagnosis of spina bifida, and we decided to share the news with our family and friends.  I couldn’t stop crying that day, and I felt like my entire world had changed.



And really, it had.

But I wish I could go back and tell myself that it was changing for the better (not that I would have believed my future self, but still).

A question that I sometimes ask myself is, would I change Eisley’s spina bifida, if I could?

The answer is no.  And yes.  It’s a complicated, conflicted answer.

I would take away the physical pain of surgery recoveries, countless procedures, and chronic pain of everyday life.  I would take away the heartbreak that I am sure that she will experience in the future when a blunt child calls her a baby for wearing diapers, or when an adult gives her a pitying look in the grocery store when they see her braces or adaptive equipment.  I would take away the feeling when she realizes that the world sees her as less than, and when she will have to fight to receive equal access to the world.

I would take all of these things away if I could.  But, I also know that if I took away her disability, I would take away a huge part of who she is.



She is strong.  I get so many comments on how happy she is, and I just smile and nod.  Because I know it’s more than happiness.  It is a strength that runs deep.  After her surgery the day she was born, she was on morphine for a couple of days, and after that, she only needed Tylenol.  She was recovering from two surgeries in one-her spinal closure, and the placement of her shunt that goes from her brain down into her abdomen.  She physically works so hard to do the things that typical babies do with ease.  Each time I see her crawling across the floor to get a toy, or when she is grabbing my arm while I sit on the floor and she pulls up to her knees, I know the physical effort she is exerting to do these things.  She works so hard, and does it all with a smile and a gentle spirit.

She is dedicated.  Maybe that sounds silly to say about a 13 month old, but I wish you could see the look in her eyes when she wants to accomplish something.  She sets her mind to it, and she knows she will do it, no matter how hard she has to work.  Her physical therapist has commented on it before, saying, “We just have to show her how to do something once, and then she just does it like it’s nothing!”



She is gentle.  And funny.  She loves to snuggle and loves the cats.  I could go on and on about how wonderful and remarkable she is, but I also want to be careful about turning her into my hero.  Because I want her to feel special, but I also want her to feel like a human being.  She is the heroine of her own story, but she’s not just an inspiration for everyone else’s.

So would I change her spina bifida, and make her just like everyone else?  Ultimately, no.  Because then she wouldn’t be the Eisley Mae that we love and cherish-strong, beautiful, and fearfully and wonderfully made.