A public inconvenience: Better toilets for inclusive travel, a study investigating toilet provision when travelling for people with dementia and other physical and cognitive impairments 2018

Data collected by twelve co-researchers depicting their perspective on toilets across the country. The co-researchers took multiple photos and described their experience of finding and using toilets in photo diaries. They also recorded their sensory experiences. Information was gathered on toilets in travel hubs and on vehicles such as buses, trains and ferries. Many of the photos involved public toilets at places of interest and leisure destinations.A Public Inconvenience (API): Better toilets for inclusive travel is a research project led by the Edinburgh Centre for Research on the Experience of Dementia. It was coproduced with the Scottish Dementia Alumni, PAMIS (Promoting a More Inclusive Society) working with and for people with profound and multiple learning disabilities, the Dementia Centre HammondCare and Upstream, an organisation that promotes accessibility for people with dementia. Scotland’s Accessible Travel Framework (2016) identifies the issue of disabled people being excluded from their communities not only because of inaccessible transport but also due to a lack of appropriate accessible toilet facilities in transport hubs and rolling stock. Notwithstanding the Scottish Government recognising the issue as a fundamental human right, the project partners regularly hear that people continue to be disabled by this during travel. Going to the toilet is a universal human need and a core consideration for people when travelling and accessing the community. Yet its private and sensitive nature renders it invisible in debates and actions to address social inclusion. The result is that many people are not enabled to enjoy activities that most of us take for granted. This is frustrating, incites anger, sadness and feelings of exclusion. A key difficulty with public toilets is that people with different conditions find them hard to use for different reasons. The range of needs makes it tricky for transport planners and providers to meet diverse, and sometimes conflicting, demands. Barriers to accessing toilets while travelling can be wide ranging. To address this problem, we asked people with a range of impairments to consider their top priorities for designing inclusive, accessible and findable toilets that enable travel and participation. Our purpose was to: a) Bring together people with different impairments to develop a shared and collective picture of requirements. b) Reinvigorate the debate about the importance of accessible toilets as an integral part of accessible transport and a means to supporting inclusion for all in the community, social, economic, public and civil life. c) Produce evidence on what’s needed to provide better designed inclusive toilets. d) Devise a set of agreed priorities for service providers to assess, improve and provide better toilet provisions. e) Stimulate conversations about toilet provision and share findings to enable service providers to make helpful changes. We translated the above into the following research questions 1) How do disabled people, people with dementia and/or their carers describe the specific needs that need to be addressed to enable them to use toilet facilities while travelling and throughout the duration of a journey including transport hubs, service stations, and on vehicles? 2) What are the key enablers and barriers to toilet use whilst travelling? 3) What are the top shared priorities that service providers should focus on for designing accessible, and findable toilets that enable inclusive travel and participation? To investigate these we adopted a co-production research design based on Human Rights. The co-researchers included people with dementia and other physical/cognitive impairments, and people with profound and complex needs and their family carers. The co-researchers used phones and cameras to gather visual data of their real-time experience of accessing toilets when out and about travelling. They also wrote descriptive diaries to document different aspects of their encounters. They discovered that: I) Many public toilets on common travel routes are not fit for use II) The failure to provide adequate public toilets disregards Human Rights and prevents participation as a fellow citizen in everyday life III) Standards and Regulations have the power to bring about change but often don’t reflect the Real Needs or Everyday Challenges faced by people with impairments who have a need for Safety, Dignity and to not feel Distress IV) There is substantial overlap in the needs of people with different impairments but there are a few unique requirements for specific disabilities that need attention. The project report and videos providing further information and narratives on A Public Inconvenience: Better toilets for inclusive travel, can be accessed via our website: https://toiletsandjourneys.wordpress.com