What Matters to Me

It’s been a year since Love What Matters reached out and asked to share my story.

My thoughts and words from this passage are still the same. However, looking back, there’s more I wish I would’ve included. I talk a lot about the physicality of everything I’ve been through. If I’m being blunt, which I am 99.99% of the time – yes, I wanted to be “normal.” I wanted my body to be proportionate. I wanted the body I had on the inside to reflect the body I saw in the mirror. I wanted other people to see it, too. I think most people can understand that feeling.

But let’s forget about that for a second. I’m still finding it to be an issue that others struggle with my own identity. Mine. I still get asked, “Are you still a little person?” “You’re just a tall dwarf now, right?” No. Having dwarfism has never defined me or been part of my identity. I mean, it’s not even listed on my driver’s license and passport so why would it?

One thing I haven’t experienced that I feel some with dwarfism (lengthened or not) have is the need to belong in ONE “community” over the other. I’ve always just seen my having dwarfism as having a medical condition. It is just a diagnosis. That’s all there is.

Today, it’s becoming the norm to identify by our pronouns. My pronouns are she/her. I identify the same way I always have. “Dwarf” and “Little Person” aren’t pronouns. I’m not the dwarf in my family. My sister and I are equal as daughters to our parents and equal as sisters to our brother. She isn’t the daughter/sister and I’m not the dwarf-daughter/sister. It honestly pains me to see parents in online boards identify their child with dwarfism as their “dwarf son/daughter.” To me, it’s basically just saying they’re the family dwarf — similar to how you would refer to the family pet. In my opinion, the term “dwarf” is just a sugar coated way of saying “midget.” Maybe I’m the only one who thinks this.

Having dwarfism isn’t a form of identification. Think about it like this – when filling out medical paperwork, dwarfism isn’t an option under sex/ID. You fill it in on the line labeled “diagnoses.” I use this example because I often see “dwarf” used in medical literature – of all places. If you look on some (not all) hospital websites where they treat patients/individuals WITH dwarfism, you’ll notice they refer to the individuals as a “dwarf” or “little person,” but for other diagnoses they treat, they’ll reference them as “patients with…” This just really turns me off. I know it’s not the intention, but it makes me feel they see those with dwarfism as lesser than those without. Again, I know it’s not intentional, but that’s just how I feel.  I think if we were to start there with identifying individuals with dwarfism as just that — individuals with dwarfism, we could lose that language. 

While we’re in this time of gender identity awareness, we also need to be looking at the language used when it comes to people with a medical condition. Person first language needs to become the norm today.