On Toileting

Decades ago the leading cause of death among paralyzed people were complications associated with the bladder, kidneys, and urinary tract system. Today, the most common cause of death among those who have survived for decades with a cord injury is cardiovascular disease. I have sent much of the last year reading various medical journals about why people with a spinal cord injury die of heart disease. There is no agreed upon variable. When compared to the typical population risk factors are significantly higher for physical inactivity, obesity, blood pressure irregularities, chronic inflammation, abnormal glycemic control, and strokes. The statistics associated with heart disease and paralysis are grim. Yet no definitive study has as of yet emerged as to why people living with paralysis are at such high risk for cardiovascular disease. A few obvious factors come into play--for example the higher the level of injury the higher at risk one is for a stroke or heart disease. Another variable often mentioned is chronic, as in decades long, dehydration. For much of the last 45 years, I have dehydrated myself on a regular basis. Accessible bathrooms may be more common now but that was certainly not the case when I was younger. I severely dehydrated myself on a regular basis when I taught, got on an airplane, went out to dinner, or went on a long drive. I did so because I knew accessing a bathroom was going to be difficult or impossible. For much of my life, I have done some rather vigorous pee math. It was not unusual for me to drink less than 30 ounces of fluids a day. Some days, I would not drink at all. For instance, if I were going to be on a long flight, an extended day where I knew no bathrooms were accessible I would stop drinking fluid the night before. The concept of being well hydrated was a mystery. The world was not accessible and to work in an often hostile physical and social environment involved routine dehydration. That was just my life.

Fast forward 40 years, and I am paying the price of being dehydrated daily for decades. I no longer dehydrate myself. If I do so I feel physically sick. I get severe headaches and my heart feels funny--as in out of rhythm or arrhythmic. I avoid caffeine--it has a profound impact on my heart. One cup of coffee or tea will send my heart racing hence I don't drink either. I drink very little alcohol for that too has a profound impact on my heart. I have also revolutionized my diet. The American Heart Association has specific recommendations and I abide by them. None of this addresses the cocktail of expensive medications I take for hyperlipidemia, high blood pressure, and chronic heart failure. Every time I read the labels on the medication I am reminded of my mortality and the price I have paid to be included in routine social interaction.

Being well hydrated is an exercise in frustration even in an accessible city like Denver. The light rail system stations have few accessible bathrooms. Those that exist are located at major hubs like Union Station. Accessing the few accessible bathrooms in train stations, the library, places of business are never a sure thing. In Union Station downtown about 99% of the time a homeless person or weary traveler is camped out in the one stall I can access. The public library bathrooms are overwhelmingly dominated by homeless and not safe to access. On an average day if I go to downtown it will take me an hour to get there on the train and another hour to find an accessible stall. Finding an accessible toilet is a time consuming day changing effort. The little blue international symbols of access you see everywhere are meaningless. Bathrooms may abound but few are accessible.

Essentially a hydrated paralyzed person's day is dictated by accessing a toilet. Dehydration for me is no longer an option hence much of my time is spent in the quest for an accessible bathroom. The able bodied will say--use a family bathroom. They are huge. Correct. They are big accessible and always locked. Getting the key to the family restroom in Union Station requires a phone call to security and typically a 45 minute wait for a guard to show up. I am not naive. If the bathroom was not locked homeless people would camped out inside. This knowledge does me no good as I wait.

Good things come to those that wait I suppose. The other day I came across a fascinating project: "Around the Toilet". Three years of work went into this project and researchers just released "Around the Toilet: A Research Project Report About What Makes a Safe and Accessible Toilet Space". Link: https://aroundthetoilet.files.wordpress.com/2018/05/around-the-toilet-report-final-1.pdf Prior to reading this report I had never thought accessing a toilet would make me feel included and give me a sense of belonging. The fact is I feel very much excluded every time I use the toilet. I do not know the percentage but the odds of me finding an empty stall I can access is stunningly small. Every day I end up sitting outside a stall waiting for the able-bodied person to get out of the one toilet I can access. After forty plus years of paralysis it finally dawned on me just how wrong and exclusionary this is. I also realized I am far from alone. Other groups encounter barriers accessing toilets. I am not referring to disparities women encounter on a regular basis in the form of a line to use the toilet. This UK based research project main findings included the following:

• Toilet provision in the UK is currently inadequate for a wide range of people, due to both relational and functional flaws. We need more public toilets, more accessible designs, and different attitudes and ways of understanding the space and our fellow occupants.
• Many trans and disabled people experience significant difficulties in accessing a safe, usable and comfortable toilet away from home.
• Toilets labelled as ‘accessible’ are often in fact inaccessible for many disabled users for a range of reasons.
• There is a lack of toilet research, particularly in the UK, which takes seriously transpeople’s experiences of harassment and violence in binary gendered toilets.
• There is a need for more all-gender toilet provision (sometimes known as ‘gender neutral’ toilets). This would benefit a range of people including: parents with children of a different gender; those who care for people of a different gender; some disabled people who have a personal assistant of a different gender; and some people whose gender is questioned in the toilet, including some trans and non- binary people (and, to a lesser extent, some cisgender people).
• A ‘one size fits all’ approach to toilet design doesn’t work – there is no one toilet design to suit all users’ needs. Nevertheless, consideration of all users and moves towards improvement are crucial.

The implications for the lack of accessible toilets is profound. Researchers concluded the following:

• an inability to leave the house, restricting access to wider environment and community, leaving and losing jobs. In other words, not having access to suitable toilets impacts upon people’s fundamental ability to live their lives.
• restrictions upon bodily functions, including reducing food and drink and ‘holding on’for long periods of time, all of which can have serious health implications.
• feeling socially unrecognised, unworthy, and unwelcome, if toilets do not meet your requirements and/or recognise your identity.

I have experienced each and everyone of these findings. For me, the problem of accessing toilets has gotten worse not better because of my heart condition. It is simply bad for my health to not drink fluids and be dehydrated. Indeed, one of the shocking things to me is exactly good I feel now that I am well hydrated. Hydration is a privilege of the able bodied who thoughtlessly access toilets on a regular basis. The implications for the lack of accessible toilets is profound. I have heart disease because I am paralyzed and have spent nearly four decades dehydrated on a nearly daily basis. Sure a compromised autonomic system has done me no favors but if I am reading peer reviewed medical journals correctly researchers emphasize hydration is required for healthy hearts. Moving to Denver, a high arid city at altitude, has only highlighted the need to be well hydrated.

In writing this post I often thought of Branislaw Malinowski who used the phrase the "imponderabelia of every day life" when he did ethnographic research in the Trobriand Islands. Malinowski here was referring to phenomena of importance that cannot be understood from afar or via the written word (arm chair ethnography). To really understand culture it had to be observed on a daily basis. The mundane he concluded could teach us about why we behave as we do. Seemingly unimportant routines, how we care for our bodies, make food, house ourselves etc. can teach us about who we are as humans. The same can be said of the toilet and whether it is or is not accessible to others. Yes, those long periods of waiting to access a toilet have not been wasted. It is a post such as this that makes me realize how lucky I am to have found the field of anthropology. It has helped me understand the world and my place in it.