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.
- 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.
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.
A few months ago I saw a picture of a sign on some university campus which pointed to two toilets -- a normal communal one for men, and an accessible "all gender" toilet which was clearly a "Changing Place", i.e. a super-accessible toilet with a hoist so that an adult could be lifted out of a wheelchair to be placed on a toilet or a changing table. Quite apart from the fact that women have far fewer toilets to choose from while men are provided a standard communal toilet, expecting all and sundry to use the accessible toilet will mean the disabled people who need it will have to wait for extended periods and the facilities may get broken.
Over here we also have the RADAR key system, in which a key designed by a major disability charity can be bought and which gives access to the toilets that are part of the scheme. Not perfect but people have to go to the effort of buying the key which might well deter the thoughtless. An important part of reducing able-bodied use of disabled toilets is to make the communal toilets clean and safe -- make sure the toilet pans have lids (so they can be flushed without splashing any dirty water around, including onto the user's clothes and face), are cleaned frequently and are peep-proof (i.e. walls and doors without large gaps at top and bottom) and adequately monitored.
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