Rev. Lisa Heffernan: Spina bifida awareness month

Today’s blog post comes from Rev. Lisa Heffernan, ELCA Disability Ministries coordinator

I’m just going to be honest here. All month I’ve been procrastinating on writing this blog post. Why? I’m not sure, I guess. Perhaps it’s because it asks for a bit of vulnerability on my part. You see, it’s October, and October is spina bifida awareness and disability awareness month. Spina bifida is the neural tube disorder I was born with, so I can tell you all that I am intimately “aware” of it every day. Do I hate it? No. Not at all. Are there challenges/frustrations that come along with it? Yep. Has spina bifida shaped how I live and move in a world that was not created with me and others like me in mind? Absolutely.

Before I get too far down a rabbit hole of rambling, here is a bit about this spina bifida that approximately 1,400 babies are born with each year. It comes in several different forms, some of which are occulta, meningocele, and myelomeningocele. On the whole it means that there’s an incomplete closing of the spine and the nerves of the spinal cord in the early development days and weeks of pregnancy. You can look up all kinds of information on the different forms, but I have myelomeningocele which is the most “severe” form. I was born with some nerves exposed on the lumbar part of my spine and had to have that patched up and a shunt put in right after I was born due to swelling of the brain. Oh, and I use a wheelchair full time too. My current one’s a bit worn and weathered, but I like it and the independence it gives me.

So, the question I’m not sure how to answer is this: Why does anyone, why does the church need to be “aware” of disabilities like spina bifida? I don’t want people to feel bad for me because I don’t (and I say “don’t” intentionally here) walk. What I want is dignity, respect, and an equal, equitable place in society and at the Table with my siblings in Christ. I want to encourage people to try and understand more about the things that make each of us who we are; spina bifida in so many ways has made me who I am. I want for the wider Church to be “aware” and repentant of the ways in which it has intentionally and unintentionally excluded disabled people and told us we don’t matter to anyone—not even to God.

I also pray that this body of Christ can come to understand that our world needs more reforming. That the time is more than past for attitudes and harmful theologies to be challenged, and for us to care more about our ministries to all of God’s people than what shortening a pew might do to the aesthetics of a sanctuary. That we can come to some collective understanding that a disability isn’t an obstacle to a person being a fine pastor or deacon. Instead, what is the or an obstacle? Attitudes of scarcity or lack of holy imagination, and a hesitancy to find out what it might take to make our churches and places of fellowship barrier free.

For me, this awareness month/s isn’t about simply learning what spina bifida is or saying how “inspiring” disabled people are. (Just don’t say that…seriously. We’re human. Just as faulted, sinful, loving, and capable as you.) It’s about making we who follow Christ aware of the beauty in this diverse community.  All so that we can strive together to share the love and grace of Christ with one another, seek justice and equity for one another, and live out what we mean when we say “all are welcome at the Table of our Lord”.