I have been disabled for 32 years. So, I have been disabled all of my life. For as long as I can remember, I have been told by larger society that I should inspire people. I should live my life, grateful and eager to be a lesson to, and for non-disabled people who may look at me one day and say “at least my life isn’t like that.“ I grew up flipping channels past telethons, where disabled kids were trotted out to raise money for a specific cause. They never could speak to their own lived experience someone was always there at the ready speaking for them. That person, was usually a non-disabled adult. There was also the late night infomercials selling holy water, and showing that when people drank it, they could get up from their wheelchairs, toss away their canes and walkers and be “free“
Despite loving friends and family, that sort of thing is impossible not to internalize and so, I did. I told myself that I was the problem. I had to beg God to fix me because I was broken. I prayed and prayed for holy water to drink and to “free” me the way it freed those other people. What I learned instead was that a cure wasn’t coming and that I did nothing wrong to “deserve” my disability despite the opposing opinion of strangers on TV and in stores. I learned to like myself, and then to love myself in a world designed for a body very much, unlike mine, and in the world, where I am constantly told that I am not enough, if I am not serving inspiration to those seeking it.
In service of who I thought I should be I walked in a fashion show that while well-meaning, made me feel less human afterward, I have met people who pretended to care about the disability community but really, were just there to cash a check, I wrote words and essays and articles about how hard it was to be a person because of disability. I fed into the belief that my life held less value because of the body I live it in.
In the spirit of honesty, I’m tired of the request to be inspiring. I’m tired of the fact that it’s somehow a marvel that I get up every day and exist in a world not designed for me. I am tired of having to be an example of people using me and the way, I adapt to the world, as a reason to be grateful for what they have, I want to be a person who is not required to inspire because I do the most basic things. I want to be a person who is allowed to make mistakes, make amends, and make it work. Sometimes, I just want to exist without an agenda and without the pressure.
The people in life that I both know and wish to know, who inspire me most, inspire me, not because they simply exist, but because they allow me to feel like if they could exist, I could exist. I have such a complicated relationship with inspiration, because I think in many ways people use it as a tool, to make others less human. I am familiar with pedestals. I would be lying to you if I said that there weren’t people I still put on them because of the inspiration I have found within them. The difference is that I am not inspired by their adaption to the world, or by the fact that they got up in the morning, my feeling of inspiration comes from the art they created, the homes they created, the things that they have done that have allowed me to keep going in my toughest moments, and in my happiest.
I don’t mind being the inspiration if it’s for my taste in music, cheesecake, clothes, movies, and Books. I don’t mind being an inspiration if that inspiration is not built upon my lack of something. All I have ever wanted, is to be treated with respect and empathy, not sympathy.
In this year of my life, I have spent the majority of it in a lengthy depressive episode, I have questioned my path and purpose, and cried many tears in therapy. However, I am not the girl I once was hope and joy are harder for me to find these days like we keep missing our connection to each other or something. My pessimism fits like an old warm coat. I’m fighting to get all of it back, to make the gate before the plane takes off one final time. I am figuring it out as I go. I think we all are. My hope is that you might still stick around even when you don’t find me inspiring.
This was beautifully written, and so relatable. Long time fan and follower, and fellow hemi, here - and currently in a very similar headspace as you. This made me feel seen, and lifted my spirits. So thank you 😊 Here's to figuring it out as we go - and wishing you hope and joy that is easier to find, sometime soon 💕
Love that you are leaning into the things that inspire yourself and keep you sustained. Yes!