{"id":1080,"date":"2025-03-25T00:07:22","date_gmt":"2025-03-25T04:07:22","guid":{"rendered":"https:\/\/pressbooks.library.torontomu.ca\/accessiblehealthcare\/?post_type=chapter&p=1080"},"modified":"2025-04-28T11:06:33","modified_gmt":"2025-04-28T15:06:33","slug":"nothing-about-us-without-us","status":"publish","type":"chapter","link":"https:\/\/pressbooks.library.torontomu.ca\/accessiblehealthcare\/chapter\/nothing-about-us-without-us\/","title":{"raw":"Nothing About Us Without Us","rendered":"Nothing About Us Without Us"},"content":{"raw":"

\u201cNothing About Us Without Us\u201d<\/span><\/h2>\r\n[caption id=\"attachment_1384\" align=\"alignnone\" width=\"1024\"]\"A \u201cNOTHING about us without US.\u201d Photo by Gritchelle Fallesgon for the Disabled And Here collection. Mural in the background by Lliam Werproc. Source: Disabled And Here<\/a>. Licensed under Creative Commons Attribution (CC BY 4.0).[\/caption]\r\n\r\nSo, what does a more just vision of health promotion look like, one that honours, supports, and does justice to people with disabilities? How can we crip our understandings of health promotion to foreground a future in which variance in human ways of being are recognized and celebrated?\r\n\r\n\u201cCrip\u201d is a disability rights term that emerged as a reclamation of a once-derogatory label of otherness into a self-proclaimed source of pride, human expansiveness, and non-normative resistance (Hutcheon & Wolbring, 2013; Thorneycroft, 2024). When used as a verb, \u201ccripping\u201d embodies a dynamic process that is \u201cdeployed and redeployed for political purposes as a way to re-imagine conceptual boundaries, relationships, communities, cultural representations, and power structures\u201d (Hutcheon & Wolbring, 2013). It seeks to transform dominant conceptions and practices from those that position disability as a \u201cproblem\u201d to be solved, towards ones that foresee a world with disability as \u201cpossible and desirable\u201d (McRuer, 2006, p. 71).\r\n\r\nCripping health promotion begins with the recognition that \u201cpeople with impairments have always been part of every human society\u201d (Berthelot-Raffort, 2022, p. 364) and are critical voices in our communities. Disability rights activists have led the movement to expose how the prevailing mission of health promotion is based on capitalist, ableist standards of productivity that systematically devalue people with disabilities as well as caregivers and domestic workers (Berthelot-Raffort, 2022). If the public health community and disability rights community share interests in health promotion, access and participation in healthcare, and health equity for all people, then disabled people and their caregivers need to be included in supportive decision-making toward a transformed ethics of health promotion that protects people with disabilities and does not devalue certain community members.\r\n\r\nBy including the disability rights community in decision-making, public health can be re-conceived to recognize the social context of oppression that has framed and limited our experiences and choices, and that health promotion can play a role in shifting public perceptions and structural realities that shape the health outcomes and autonomy of all people, including those who are disabled, those who experience temporary impairments, and those who may become disabled in the future. The principle, \u201cnothing about us without us,\u201d was popularized by disability rights activists as a way of centring disabled people in decision-making that affects their lives, and promoting participatory, inclusive approaches to healthcare that respect the expertise of disabled individuals (Charlton, 1998).\r\n\r\nWhat follows are some considerations that emerge in the building of a [pb_glossary id=\"684\"]disability justice[\/pb_glossary] framework for health promotion that benefits not only disabled people but all community members.\r\n\r\nTo hear and engage more with perspectives from the community, check out the Enabling Accessible Healthcare mini-documentary<\/a><\/strong>.\r\n

Valuing Human Interdependency<\/strong><\/span><\/span><\/span><\/h3>\r\nFollowing a feminist ethics of care as well as Indigenous principles, disability advocates point to human interdependency as an important aspect of the human condition that should be centred in conceptions of health promotion. Humans have always relied on one another to survive, care for, and protect each other in the face of human vulnerabilities (Berthelot-Rafford, 2022; Garland-Thomson, 2017). A more just vision of health promotion needs to look beyond the individualized model of treatment and recognize the inherent [pb_glossary id=\"886\"]relationality[\/pb_glossary] of health, which encompasses the role and health of caregivers, families, communities, and broader social and political conditions in which people exist (Crawford, 1980).\r\n

Strengthening Disability Cultural Competence<\/strong><\/span><\/span><\/span><\/h3>\r\nIn order to bring about disability justice in health promotion, public education is needed to shift dominant perceptions of disability and better understand the role of the social and cultural environment in shaping health outcomes. Disability scholars such as Rosemarie Garland-Thompson (2017) argue for the importance of building \u201cdisability cultural competence\u201d that equips people with the knowledge and skills to understand, support, and co-create an environment that improves the lives of people with disabilities. Since anyone may become disabled (or care for someone who is disabled) as a result of injury, illness, or ageing, people need to be provided with the necessary information to be able to live with a disability, including biomedical decision-making, accessible technology and design, disability rights and legislation, and more (Garland-Thompson, 2017). This involves moving past fears and perceptions that disabilities necessarily need to be rehabilitated or cured, and instead value human difference as a source of pride. It also involves looking to disabled people for guidance on what can be learned through such common aspects of the human experience as pain, suffering, and adaptive ways of being (Wendell, 2001).\r\n

Enabling Critical Rest and Vulnerability<\/strong><\/span><\/span><\/span><\/h3>\r\n[caption id=\"attachment_1387\" align=\"alignnone\" width=\"1024\"]\"A Illustration: Group sleepover among disabled queer Black friends. By Jonathan Soren Davidson for the Disabled And Here<\/em><\/a> collection. Licensed under Creative Commons Attribution (CC BY 4.0).[\/caption]\r\n\r\nAs conceptions of health promotion are decoupled from capitalist expectations, attention can be placed on the health needs and limitations of people, independent from performance standards imposed by an external authority such as an employer. Susan Wendell (2001) discusses how people who are disabled may have a range of fluctuating energy capacities and limitations that are often unpredictable. Thus, having the ability to govern one\u2019s own time and pace of work \u2013 including when rest is needed \u2013 is critical to meaningful participation of disabled people in social life. In fact, asserting the need to rest is a form of resistance to capitalist standards of productivity by acknowledging our natural human limitations and vulnerabilities and allowing people to manage their health as needed (Berthelot-Rafford, 2022).\r\n\r\n \r\n
\r\n\r\n\"Podcast\r\n

Media Moment<\/h3>\r\nTime: 58 minutes, 45 seconds<\/strong>\r\n
\r\n\r\nConsider the following podcast or transcript on how rest is a form of resistance:\r\n