"But You Don't Look Little", Calling out narrow views of dwarfism

I am a little person. I have been a little person since birth, and will be a little person for the remainder of my life.  

Over the past couple of years, it's become increasingly more common for people (mostly outside of the dwarfism community but also sometimes within it) to say things to me like "but you're not that little" or "I don't see you as a little person." After increasing frustration with these comments, it's time for me to unpack them and spread a little dwarfism awareness.

You see, I DON'T have achondroplasia, the most common form of dwarfism.  I therefore don't LOOK like I have achondroplasia, since I don't (surprise surprise!).  There are now over 400 recognized forms of skeletal dysplasias, each with unique features and differing body proportions.  Really the only feature that is shared among all of these conditions is short stature.

The Little People of America defines dwarfism as a medical condition causing short stature, usually resulting in an adult height of no more than 4'10''.  At 4'7'', with a diagnosis of spondyloepiphyseal dysplasia congenita, I clearly fit the bill.  If you want to get technical about it, this adult height is less than 3 standard deviations below the mean - clearly outside the "norm."  I have been outside this "norm" since birth.  

Most little people are around 4'', and I recognize that the fact that I am taller endows certain privileges.  I can reach most (though still not all) items at grocery stores without climbing shelves.  I can usually be seen when standing at a tall counter-top (although not if I'm using my scooter). I can reach the showers at the gym.  I can comfortably reach an ATM. However, these privileges do not negate the fact that I have dwarfism, that I face daily accessibility challenges related to my dwarfism and need to utilize adaptive equipment (pedal extensions and a tall booster to drive, a scooter to get around, stools in the kitchen to name a few), and that I have dealt with ignorance and discrimination due to my dwarfism throughout my entire life.  

To say that I "don't look like a little person" minimizes these life-long experiences.  Since I was a child, the world has categorized my body as "different".  These experiences have had a huge impact on my identity and my interactions with others, from children, to teachers, to doctors, to random strangers, all of whom feel the need to comment on my body's differences, usually pointing out that these differences are "weird" or "bad".  

This is not the place to catalogue these experiences; additionally, I feel that I shouldn't need to "justify" my lived experience of dwarfism.  But just as an example - walking to my car last week (several days before St. Patrick's Day, wearing a green headband) - a man felt the need to call out to me that I was a "little leprechaun."  The discrimination and ignorance faced by people with dwarfism is NOT limited to people with achondroplasia, and pretending that this is the case excludes many people who are fighting the same daily battles for acceptance and equality.  

The past several years have seen an explosion in reality TV shows about dwarfism.  While I applaud the awareness that some of these shows have brought, I do wonder if they might be contributing to society's narrower view of what someone with dwarfism is supposed to look like.  When I hear "you're not that short" and "you don't look like a little person", I wonder where people are getting the information that they think they need to make these judgments.  Every new child I meet gives me a "look-over" and almost always says something along the lines of "wow you're really short" - if children can tell without a doubt that I'm little, why is this so difficult for adults?  

Maybe because there is still the perception that to be a little person, to have a disabled body, is a "bad thing". People think they are giving me a compliment when they say that I "don't look that different".  But let me be clear that my body's visible differences - my stature, my proportions, my gait, my scars, my ribcage - are NOT a "bad thing".  My 4'7" body with dwarfism is just as beautiful and flawed as a non-disabled body, and no less valuable.  And it is just as much the body of a little person as someone who's 4'' and has achondroplasia.  I am confident in my appearance and have no desire to change it, but pretending that I "don't look that different" invalidates the accessibility and social discrimination that I have faced for 25 years.  This attitude furthers the oppression of people with disabilities by playing into this idea that it's good to "look normal".  Furthermore, no one has the right or the ability to judge another person's lived experiences based on limited information and preconceived judgments, and it is ignorant and dangerous to assume that you can.  

Let's work on accepting each other's differences and disabilities, instead of pretending they aren't there.  And the next time you feel the need to question someone's identity or lived experience of disability, please think twice about whether or not this is your call to make.