This might surprise a lot of people, but it bothers me when someone says they don’t “see my wheelchair” or my disability. It’s taken me a number of years to figure out why this bothers me so much. Of course, I want people to recognize my humanity first, right? Of course, I want my friends and family to see me – the weird, “Lord of the Rings” loving, occasionally overly-emotional, funny, theology nerd they’ve known for 30 years — first, right? Right!
But here’s the thing: having been born with spina bifida and being a full-time wheelchair user has shaped me and who I am in the world. The fact that I have a disability is a part of my reality I want others to see! That’s because, along with the wheelchair, they will see a young woman whose father’s death due to complications of multiple sclerosis has driven her to continue his work of advocating for people with disabilities. They will see a sister and daughter who would not have completed college or seminary without the encouragement, pushing, and support of her mother and brother. They will see a disability theologian and pastor who would not have been open to the work of the Holy Spirit in her life without friends who said, “You’ll become a pastor. Just wait.” or “The Church needs to hear your voice.”
In the end, “the thing” is that I would not be the person I am without my disability. Sure, I have bad or “down” days (sometimes weeks) because of the physical and relational struggles that have come along with it. It would be foolish or dishonest to say that I don’t sometimes wish I hadn’t been born with spina bifida when I have one of those bad days. As I get older and have begun to own who I am and all I’ve been through, though, those days don’t come as often as they did when I was a child. Today’s struggles are like those of a lot of women who are my age: trying to discern what comes next in my early 30’s as I look ahead to my future in ministry and academia, and figuring out where future relationships and family fit into that. I just get to navigate those things sitting down, rather than standing up!
As I navigate this life from my wheelchair, my hope and prayer is that the “-abled” world around me can understand this: When you tell me (and perhaps others like me) that you don’t see my disability, we may hear it in a way other than you intend. For my part, I hear you saying: “Having a disability is bad, and something to be pitied or unwanted. You’re more than this negative thing in your life.” The message that comes across is that others believe I hate my disability, so I must want it to be forgotten about so I can be viewed as a whole person by others.
Newsflash: I am a whole person. All persons with disabilities are “whole.” Our realities don’t match up with a world that looks to ridiculous standards of beauty, wealth, and physical and mental perfection in order to be seen as a whole person — as fully human. And you know what? That’s OK! People with disabilities have the same range of emotions, desires, and aspirations as those without disabilities. The problem is that attitudes and structures exist which limit how we can participate in the world. That is maddening and heartbreaking for me, not just because of my own life experiences, but because I know so many people with disabilities who could live into the fullness of who I believe God created them to be if the “-abled” world would open up even just a little bit more.
Great strides have been made with that since the ADA was passed, but we are still far, far from true equality and inclusion in this world. I don’t know how to fix it or make it better, but I feel called to help do that someday. I’ve made a start or two to “get my wheel in the door,” so to speak, but I’ve got a long way to go. So, when you see me or someone like me, please don’t assume I need you to validate my humanity by downplaying my disability. Nor do I need you to start believing the negative stereotypes that make people with disabilities seem helpless. Just get to know me — spina bifida, wheelchair, nerdiness, and all — and see that my life is not to be pitied – or something “inspiring” either! It’s just my life, one I want to live as freely and interdependently as I can. It hasn’t all been bad so far, and it wouldn’t be what it has been or will be down the road, if it weren’t for this speedster that helps me down that road — my wheelchair.
First published at: https://themighty.com/2017/04/my-disability-is-part-of-who-i-am/