Purpose and Definitions
Purpose
This document was designed to provide operational guidance and transparency for The Dignity Project research team. Created by people with and without disability, the definitions, values, frameworks and commitments outlined by this document are a result of the preliminary work of The Dignity Project Pilot. It is the hope of The Dignity Project that others, particularly researchers, will adapt and implement the values and commitments outlined below in order to work toward more accessible and inclusive spaces and practices.
Definitions
Disability
The Dignity Project recognises disability as stated in the United Nations Convention of the Rights of Persons with Disabilities (CRPD)(2006) stating, “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders full and effective participation in society on an equal basis with others” (p. 2).
Impairment
As outlined by the World Health Organization (2011), impairments include physiological functions of the body systems and/or body structures that, when combined with environmental and attitudinal factors, causes the individual to experience activity limitations and participation restrictions.
Support network/supporters
The Dignity Project promotes individual autonomy and independent action and endeavours to embed those values into the language used. When discussing the individuals and community of people that play active roles in the facilitation of the daily life of a person with disability, we will refer to them as supporters or a support network.
Citizen(s)
Recognizing that all people are members of a greater, global Human Commonwealth, citizen refers to any and all people. If research, writing, or other scenarios require the identification of a population of citizens, then The Dignity Project supports doing so only in dignified language and only when truly necessary. For example: The Hopkins Centre researchers and a group of citizens with lived experience of disability will conduct this research.
Accessibility
Accessibility refers to the respectful and equal design and delivery of services, products, and environments (physical or otherwise) so that all citizens are able to utilize them “to the greatest extent possible, without the need for adaptation or specialized design (The Centre for Universal Design). The World Health Organization (2013) outlines three types of accessibility: physical, economic, and information. Physical accessibility means that “health facilitates, goods and services must be within safe physical reach for all sections of the population” (WHO, 2013). It further states that it is “understood as the availability of good health services within reasonable reach of those who need them and of opening hours, appointment systems and other aspects of service organization and delivery that allow people to obtain the services when they need them” (WHO, 2013). Economic accessibility is defined as “a measure of people’s ability to pay for services without financial hardship” (WHO, 2013). This factors in the financial cost of health services but also “indirect and opportunity costs” Information accessibility is the “right to see, receive and impart information and ideas but “should not impair the right to have personal health data treated with confidentiality” (WHO, 2013).
Inclusion
The Dignity Project understands and refers to inclusion as the equal participation of all citizens in all aspects of life, including the redesigning or creating of products, services and environments with the greatest diversity of people in mind and involved in the creation process. Inclusion is not just participatory or representative, but includes the practicalities of work, engaging citizens more centrally to have a great impact on methods, outcomes and results.
Dignity
Dignity is a concept that is easily discussed but difficult to define and understand. It is used frequently as a guiding principle for best practice across a range of disciplines and industries. The United Nation’s Universal Declaration of Human Rights (1948) refers to dignity in that “all human beings are born free and equal in dignity and rights”. It goes on to specify in Article 2 that dignity is afforded to people “without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status” (United Nations, 1948). It is the goal of the Dignity Project to develop a deeper understanding of what dignity means and how it is understood and experienced by people with disability.
