Breaking a Powerful Silence

In August 2005, Illinois passed a Restroom Access Law requiring that retail establishments with toilet facilities allow customers to use them if the customers present a doctor’s note attesting that they suffer from Crohn’s disease, ulcerative colitis, or another medical condition that might necessitate immediate need for a toilet. The law is also known as Ally’s law after a fourteen-year- old girl with Chron’s who was denied use of an employee restroom in a store and soiled herself. Her mother vowed that no one else should be forced to lose their personal dignity in this way and asked their state representative to sponsor the legislation. Fourteen states have since passed similar laws.

I see such laws as both welcome and deeply problematic. On the one hand, any extension of bathroom access should be applauded. How could an establishment not allow someone with an urgent need to use a toilet? On the other hand, this legislation, which is probably designed in part to deny homeless people the right to use store facilities, is constructed on an extraordinary fantasy of who people with urgent needs might be. Only people a) with designated ailments, b) who are under a doctor’s care, and c) carry a note with them that they have the time to unfold for a stranger’s perusal are entitled to this basic act of respect. Anyone else desperate for a bathroom for any of a multiplicity of reasons is out of luck.

I want to walk a delicate line here. I would not deny for a moment that there are medical conditions that make bathroom access a perpetually urgent issue for some people more than others, and that restroom access laws have the merit of lifting up this reality for public scrutiny. In doing so, they provide a potential opening for thinking about the many other groups for whom access is a serious ongoing problem: among them, people with disabilities that are not necessarily digestion-related.

Rob Kitchen and Robin Law, in their article “The Socio-Spatial Construction of (In)accessible Public Toilets,” point out that citizenship is always necessarily embodied. Full participation in public life “depends on the material conditions which shape people’s ability to participate.” (288) Since the rise of modernity in the West, those deemed worthy of full citizenship have been granted private spaces in public where they can relieve their bladder and bowels. To be in a situation where one cannot do so without violating social convention is to be denied the right to participate in public life with dignity.

Disability rights activists have spoken powerfully about the ways bathroom access issues arise as soon as some people with disabilities leave their homes. Airplanes rarely have accessible toilets. What does that mean for travel plans? Will there be an accessible toilet in the restaurant, the shop, the national or state park, the convention center, the hotel room associated with the convention center? Will the toilet in the park be on a steep grade, the one in a restaurant up two stairs or filled with cleaning supplies? How navigable are any of these spaces for people who are blind? Will there be adequate facilities for changing a colostomy bag?

It is easy to imagine how the constant pressure of dealing with such questions generates a cycle of invisibility: the more the difficulties of navigating public space keep people from venturing out, the more the needs of people with disabilities remain invisible; the more those needs remain invisible, the less pressure there is to address them.

Ally’s law begins to break this silence, but at the same time creates a new realm of what cannot be spoken. Disabled bodies have been excluded, marginalized, and hidden away from public space because they are reminders of the vulnerability and mortality of the body, the arbitrariness of embodied experience. Our culture’s obsession with health and idealized images of bodily perfection means that disability occupies a rejected space and that metaphors of disability are among the most persistent forms of othering.

But the split between good and bad, normal and abnormal, bodies is mirrored in the distinction between good and bad parts of the body. The face, lips, and hands are good; the excretory and sexual organs are bad. There is no deeper violation of the imperative to appear well and in control of one’s bodily functions than loss of ability to govern one’s bladder or bowels.

Restroom access laws posit that this danger, rather than being part of variability of being human, affects only a small group. This fiction renders invisible a whole world of vulnerability and suffering that people are often too ashamed to take to a doctor’s office to get a note. An estimated 18 million adults, predominantly women, have problems of incontinence, far more experience urinary frequency or urgency, and 6.5 million Americans are affected by fecal incontinence, a leading cause of nursing home placement. Then there are the conditions addressed by Ally’s law, the occasional, sudden onset of diarrhea, or the desperate need to pee after spending hours in a place with no accessible bathrooms or none at all. But how can all these things be addressed when toilets themselves cannot be directly named in polite company and excretion as a central human function is shrouded in silence and shame?

Some disability activists have argued that, even within the disability community, issues of continence and control are rarely discussed. Those who require attendants to use a bathroom or who need help with the acts of urination or defecation say that they feel rendered invisible by the priorities of a movement that frames the problem of access in relation to autonomous subjects. Addressing the need for personal care means struggling against the impulse toward self-protection and the tremendous shame of needing help in this area above all others. People have been made to feel that they are better off dead than requiring aid with urination and defecation.

I see a connection between addressing toilet provision as a justice issue and accepting the fact that no one can live without eliminating waste. Along with eating and drinking, excretion is crucial to human survival; we could not be without it. The failure to create buildings, towns, and cities that acknowledge this reality by constructing more and better toilets is not a matter of the inability to act but a failure of will. Architects have suggested numerous simple and elegant bathroom designs that can address a wide range of needs across gender, sexuality, different kinds of ability and disability, and varied care-giver configurations. But it is hard to imagine their being implemented until we’re ready to acknowledge that “everybody poops” and that human variation and vulnerability are as great in this area as in any other