Living on the Edge, part 1

Living on the Edge: The Messy Truth of Bathrooms and Disability, part 1

Over the last several years, as I have begun to devote more of my life and ministry to advocating with those with disabilities and their families, I have increasingly felt myself being drawn to paint a intimate, personal picture of disability for the general public. Despite the grand narratives of overcoming great odds that often get spotlighted in general society, I find that where the rubber meets the road in life with a disability is in the small day-to-day moments that no one sees.

It’s 9:00 am on a typical weekday morning. I’m just beginning my day’s work when all of the sudden, there is a rumble in my stomach that tells me my bowels wish to move. This would not be a problem, except my wife Lisa will not be home until at least 4:00 pm. Most of the time, if I can flex the right group of muscles and squirm and move in just the right way, I can get the urge to pass in 3-5 minutes. Sometimes the urge stays gone. Most of the time when that happens, the process will repeat itself 5-6 times throughout the day. Imagine, if you will, doing a very intense 3-minute Zumba workout 5 times a day. This is all while trying to travel, do my daily pastoral work, and live a “normal” married life. And this is when I’m able to avoid bathroom chaos.

There are some times when my body, due to the dual effects of how cerebral palsy affects my muscles and how I sit in my chair, does not allow me to avoid bowel blunders. I am about to admit something publicly that I have never stated out loud to anyone who is not my wife: there are days when all I can is limit the damage and hope that by using the restroom a little bit, I can stave off a major bathroom incident. In these cases, I let my body take its course and then go on with my day, whether I’m in public, at a meeting, or whatever the case may be.

I don’t share this experience out of a need to gross anybody out or a desire for sympathy or even, really, understanding. I really don’t need your understanding, but I do want it, if not for me then for my disabled sisters and brothers who share in this experience. If I took a break and stopped my life every single time my body made it difficult to be in public (or, being in public made my body difficult), I might have no life. To have a life means I have to have a fine-tuned sense of bodily functions no one sees and no one wants to talk about. The messy truth is, it is this attention to my body that enables me to occupy space with others who give little thought to having to make it to the bathroom before it’s too late, much less need the help of others to use the bathroom properly.

I thank you, the readers fo Julian 360, for giving me the space for sharing with you my own personal narrative. I’m quite certain that this blog can serve as a beginning to a deeper discussion around the intersection of disability and bathroom politics. That is a discussion I expect to address the next time I write a blog in several weeks. Until then, I hope this account gives someone the courage to life a public life with disability knowing that they have a right to out in society as they choose.

Blessings,
Rev. Justin Hancock