by Lisa Heffernan
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 many years to figure out why this bothers me.
Of course, I want people to recognize my humanity first, right? I want my friends and family to see me–the weird, “Lord of the Rings” loving, sometimes 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.”
Without my disability, I wouldn’t be me
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 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. But, as I get older and have begun to own who I am and all I’ve been through 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 30s 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 plan those things sitting down!
When you tell me (and others like me) that you don’t see my disability, we may hear it in a way other than you intend.
As I navigate this life from my wheelchair, I hope and pray that the “-abled” world around me can understand this: When you tell me (and others like me) that you don’t see my disability, we may hear it in a way other than you intend. 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.
Newsflash: I am a whole person. All people with disabilities are “whole.” Our realities don’t match up with a world that looks to ridiculous standards of beauty, wealth, physical and mental perfection. And that’s okay. People with disabilities have the same range of emotions, desires, and aspirations as those without them.
The problem is that attitudes and structures exist that limit how we can take part in the world. That is maddening and heartbreaking. Not only for me, but because I know so many people with disabilities who could live into the fullness of who God created them to be if the “-abled” world would open up a little more.
We’ve made great strides since passing the Americans with Disabilities Act. But we are still 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 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.
Get to know me–spina bifida, wheelchair, nerdiness, and all–and see that my life is not to be pitied–or “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.
The Rev. Lisa Heffernan, 35, serves as ELCA Disability Ministries coordinator and campus pastor of the Luther Center at the University of South Dakota in Vermillion, S.D.
This post appeared in the December 2018 blog of Women of the ELCA . The original content was first published on The Mighty.