Dignity Project update for International Day of People with Disability

The Dignity Project is a research and community building agenda aimed at disrupting stereotypes and the barriers to inclusion and participation for people with disability. Using a novel approach to citizen science, currently being piloted by our research team across a number of research projects, the Dignity Project strives to move beyond emancipatory and participatory types of research, towards research that embed and privileges the perspective of lived experience of disability within research. At the intersection between human experience and research, the Dignity Project uses a digital engagement platform, called the Community Hub, where people with disability can share, reinterpret and analyse their collective experiences. This private group is run by people with disability for people with disability and strives to generate research, service and system innovations that are most wanted by the community.

 More than 10 years on from Australia’s ratification of the United Nations Convention on the Rights of Persons with Disabilities (CRPD); the release of “Shut Out”, the National Disability Strategy Consultation Report; and the establishment of the National Disability Strategy, the daily reality for Australians with disability is still one of exclusion, marginalisation and indignity. Discrimination continues to underpin experiences for many people with disabilities, with the Australian Human Rights Commission receiving 44% of its lodged complaints under the Disability Discrimination Act in 2018-2019 (Australian Human Rights Commission, 2018). Discrimination is linked directly to indignity, in that it denies access to resources, social status, and equality (Njoya, 2017). Dignity is established by frameworks, reports and policies as a fundmanetla aspect of human rights. However, social exclusion, marginalisation, attitudinal and systemic barriers, discrimination, and oppression continually work to prevent people with disability from experiencing dignity in all aspects of life (de Melo-Martin, 2010; Pothier & Devlin, 2006; Shildrick, 2020). Despite dignity for people with disability being integral to maintaining human rights in addition to the physical and mental health benefits it can provide (Baillie, 2009), people with disability continue to experience indignity, particularly in the context of employment.

Following the launch of the Dignity Project pilot survey in June 2020 and the subsequent COVID-19 Impact Survey in September 2020, employment has emerged as one of the key areas in which people with disability both experienced dignity and pervasive indignity. Across the survey, employment was coded more than 25 times, the third largest coded theme, but the largest system level for “where” dignity and indignity were experienced. Respondents to the pilot survey shared that they felt more dignified and experienced greater personal dignity when they were meaningfully employed. Participants identified that meaningful employment and dignified employment experiences contributed to them feeling successful, self-confident, highly valued and appreciated, embraced and recognised for their skills and contribution rather than seen as someone with limitations.

Employment was also an area where participants of the pilot survey experienced frequent indignity at the hands of their employers and colleagues and an ongoing lack of acknowledgement. One participant said,  “although I always got work done ‘on time, on budget, to specification’ I wouldn’t be reappointed or appreciated. I resent that and it made my life hard because I always had to look for more work. When I could finally retire it was like heaven. I had become deeply afraid of my boss doing me wrong. Other participants shared experiences of bullying and exclusion in the workplace, leading to deterioration of mental health and well-being, feeling like a burden, and like less of a human being. Interestingly, the majority of the pilot survey participants were unemployed at the time of taking the survey.

Following this, the Dignity Project specifically examined the impact that COVID-19 may have on employment and dignity for people with disability. Participants in the COVID-19 impact survey who identified as having a mental health impairment reported experiencing dangerous impact in relation to their ability to work. For people employed on a full-time and part-time basis prior to the pandemic, there was little overall reported negative impact. However, for participants in the survey who identified as having a disability and who were also casually employed at the onset of the pandemic, the impact was catastrophic. 75% of participants who were casually employed experienced a reduction of working hours and reported experiencing dangerous or major negative impacts on their mental and physical health and well-being, financial situation, and family connections.

For the over one billion people who are estimated to live with disability globally (WHO, 2011), times of austerity escalate inequality, while the struggle for a fairer and more inclusive global society becomes more difficult (Vehmas &Watson, 2020). Indeed, disability and economy are closely linked in a relationship that is exacerbated by recession and in the current context, by pandemic (Flynn, 2017). However, dignity and the realisation of the human rights imperative established by the CRPD, are two mechanisms for disrupting the economic, social and attitudinal barriers that limit people with disability from participating in society and engaging in meaningful employment. Dignity has the power to contribute to people with disability feeling included, valued, and recognised as inherently worthy. It has the power to flip dynamics and normative traditions on their head in order to create a more inclusive, accessible, and equitable global society. One participant of the Dignity project pilot survey shared that “dignity has turned my life into a miracle of creativity, compassion, love, and construction” and on this International Day of People with Disability, it is this type of all encompassing, permeating, stereotype defying dignity that we must seek to uncover and employ within our own lives and workplaces.

Dignity Project update for International Day of People with Disability

The Dignity Project is a research and community building agenda aimed at disrupting stereotypes and the barriers to inclusion and participation for people with disability. Using a novel approach to citizen science, currently being piloted by our research team across a number of research projects, the Dignity Project strives to move beyond emancipatory and participatory types of research, towards research that embed and privileges the perspective of lived experience of disability within research. At the intersection between human experience and research, the Dignity Project uses a digital engagement platform, called the Community Hub, where people with disability can share, reinterpret and analyse their collective experiences. This private group is run by people with disability for people with disability and strives to generate research, service and system innovations that are most wanted by the community.

 More than 10 years on from Australia’s ratification of the United Nations Convention on the Rights of Persons with Disabilities (CRPD); the release of “Shut Out”, the National Disability Strategy Consultation Report; and the establishment of the National Disability Strategy, the daily reality for Australians with disability is still one of exclusion, marginalisation and indignity. Discrimination continues to underpin experiences for many people with disabilities, with the Australian Human Rights Commission receiving 44% of its lodged complaints under the Disability Discrimination Act in 2018-2019 (Australian Human Rights Commission, 2018). Discrimination is linked directly to indignity, in that it denies access to resources, social status, and equality (Njoya, 2017). Dignity is established by frameworks, reports and policies as a fundmanetla aspect of human rights. However, social exclusion, marginalisation, attitudinal and systemic barriers, discrimination, and oppression continually work to prevent people with disability from experiencing dignity in all aspects of life (de Melo-Martin, 2010; Pothier & Devlin, 2006; Shildrick, 2020). Despite dignity for people with disability being integral to maintaining human rights in addition to the physical and mental health benefits it can provide (Baillie, 2009), people with disability continue to experience indignity, particularly in the context of employment.

Following the launch of the Dignity Project pilot survey in June 2020 and the subsequent COVID-19 Impact Survey in September 2020, employment has emerged as one of the key areas in which people with disability both experienced dignity and pervasive indignity. Across the survey, employment was coded more than 25 times, the third largest coded theme, but the largest system level for “where” dignity and indignity were experienced. Respondents to the pilot survey shared that they felt more dignified and experienced greater personal dignity when they were meaningfully employed. Participants identified that meaningful employment and dignified employment experiences contributed to them feeling successful, self-confident, highly valued and appreciated, embraced and recognised for their skills and contribution rather than seen as someone with limitations.

Employment was also an area where participants of the pilot survey experienced frequent indignity at the hands of their employers and colleagues and an ongoing lack of acknowledgement. One participant said, “although I always got work done ‘on time, on budget, to specification’ I wouldn’t be reappointed or appreciated. I resent that and it made my life hard because I always had to look for more work. When I could finally retire it was like heaven. I had become deeply afraid of my boss doing me wrong. Other participants shared experiences of bullying and exclusion in the workplace, leading to deterioration of mental health and well-being, feeling like a burden, and like less of a human being. Interestingly, the majority of the pilot survey participants were unemployed at the time of taking the survey.

Following this, the Dignity Project specifically examined the impact that COVID-19 may have on employment and dignity for people with disability. Participants in the COVID-19 impact survey who identified as having a mental health impairment reported experiencing dangerous impact in relation to their ability to work. For people employed on a full-time and part-time basis prior to the pandemic, there was little overall reported negative impact. However, for participants in the survey who identified as having a disability and who were also casually employed at the onset of the pandemic, the impact was catastrophic. 75% of participants who were casually employed experienced a reduction of working hours and reported experiencing dangerous or major negative impacts on their mental and physical health and well-being, financial situation, and family connections.

For the over one billion people who are estimated to live with disability globally (WHO, 2011), times of austerity escalate inequality, while the struggle for a fairer and more inclusive global society becomes more difficult (Vehmas &Watson, 2020). Indeed, disability and economy are closely linked in a relationship that is exacerbated by recession and in the current context, by pandemic (Flynn, 2017). However, dignity and the realisation of the human rights imperative established by the CRPD, are two mechanisms for disrupting the economic, social and attitudinal barriers that limit people with disability from participating in society and engaging in meaningful employment. Dignity has the power to contribute to people with disability feeling included, valued, and recognised as inherently worthy. It has the power to flip dynamics and normative traditions on their head in order to create a more inclusive, accessible, and equitable global society. One participant of the Dignity project pilot survey shared that “dignity has turned my life into a miracle of creativity, compassion, love, and construction” and on this International Day of People with Disability, it is this type of all encompassing, permeating, stereotype defying dignity that we must seek to uncover and employ within our own lives and workplaces.