Jillian Ilana

Jillian Ilana, 28, Dwarfism

How would you explain dwarfism to a child?

My go-to answer to this question is “Being a little person just means that I am just that, I am a person who is short.” While technically correct, there is so much more in being a little person that I wish I could explain to a child but am not sure that they would understand and, to me, it is most important that they understand that I am a person.

What would you want the world to know about dwarfism?

There are so many answers to this question. The first that comes to mind is that being a dwarf does mean being disabled. The second is that the “M”-word is a derogatory slur and should not be said, written, etc. The third is that dwarfs are not fantastical, mythical, human-like creatures that exist in fantasy worlds nor are we court jesters that exist for other people’s pleasure and entertainment. We are people and demand to be treated as such.

What does it feel like to live with dwarfism?

I don’t know anything else. I was born with dwarfism, I never had to make a transition from non-disabled to disabled. There are just as many good days and moments and there are bad. I often feel overlooked and unheard in a world that was not designed for me, in a world that does, at times, feel like it does not recognize me as disabled but never sees me as non-disabled (which I know I’m not). Being a little person is frustrating, it is exhausting physically, mentally, and emotionally. But, that being said, I would not want to change my body. I would not be the friend, sister, daughter, cousin, advocate I am today if I wasn’t a little person. Living with dwarfism has forced me to adapt, to always be thinking of solutions and ways to adapt in a society and environment that is stubborn and I have found fun, innovative ways to make the world work for me. And if it doesn’t? Then I use my voice to advocate for change so that it might be better for the younger and future generations.

What brings you joy?

No pun intended, but the little things in life – a good book, Disney movies, listening to music, working out. I like doing and experiencing things that either allow me to escape or remind me of just how capable I am in this body.

Bigger picture, my advocacy work brings me so much joy. I’m still growing my platforms, but knowing that I’ve made some sort of difference, that I’ve gotten to meet some of the most badass leaders who are changing the world and that I look up to, empowers me to keep doing what I’m doing on a daily basis.