{"id":1343,"date":"2025-04-15T00:12:48","date_gmt":"2025-04-15T04:12:48","guid":{"rendered":"https:\/\/pressbooks.library.torontomu.ca\/accessiblehealthcare\/?post_type=chapter&p=1343"},"modified":"2025-04-28T11:04:47","modified_gmt":"2025-04-28T15:04:47","slug":"care-and-the-community","status":"publish","type":"chapter","link":"https:\/\/pressbooks.library.torontomu.ca\/accessiblehealthcare\/chapter\/care-and-the-community\/","title":{"raw":"Care and the Community","rendered":"Care and the Community"},"content":{"raw":"

Independent Living Movement<\/span><\/h2>\r\nThe Independent Living Movement (ILM), a philosophy that emphasizes the right of disabled people to live independently in their chosen community, emerged in the 1960s as a challenge to institutionalized care and \u201cvoluntary\u201d care (such as care by relatives and friends). The ILM grew alongside the civil rights movement and the push for deinstitutionalization.\r\n\r\n[caption id=\"attachment_1344\" align=\"alignnone\" width=\"954\"]\"Black Ed Roberts, a leader in the Independent Living Movement, pictured in 1981 while serving as Director of the California Department of Rehabilitation.
Photo by William Bronston for the California Department of Rehabilitation. Public domain (California government record).[\/caption]\r\n\r\nA key figure in the ILM was Ed Roberts, a polio survivor who attended the University of California at Berkeley in the 1960s. At first, he lived in the university\u2019s hospital and was denied the freedoms that his classmates took for granted. However, his admission drew other disabled students to the university, and it became a site of disability activism. This activism inspired the Center for Independent Living, which used peer support systems to help disabled people live independently, and continues to be a site of activism.\r\n
\r\n\r\n\"Community\r\n

From the Community<\/h3>\r\nListen to Alessia and Kirk talk about the care they receive at home in an independent living environment:\r\n\r\nAlessia<\/strong>\r\n\r\n[embed]https:\/\/www.youtube.com\/embed\/brWSsxkiK10[\/embed]\r\n\r\n[h5p id=\"76\"]<\/span>\r\n\r\nKirk<\/strong>\r\n\r\n[embed]https:\/\/www.youtube.com\/embed\/aWKqFSC8KTo[\/embed]\r\n\r\n[h5p id=\"77\"]<\/span>\r\n\r\n<\/div>\r\n

Independent Living Models<\/span><\/h2>\r\nThe ILM advocates the use of personal attendants to support daily tasks such as getting dressed, cooking meals, or taking a bath. This support enables disabled people to live independently, make decisions about their own lives, and participate in their communities.\r\n\r\nThere are several models through which people can access attendant care. One is the direct funding model, where individuals receive funds to hire their own attendants. This approach offers greater flexibility and control, but access to direct funding is limited. It also requires individuals to manage employer-employee relationships, which can be time-consuming and labour-intensive.\r\n\r\nOther models include supported living arrangements, in which attendants are hired by housing providers or external agencies to support residents. There are also programs like the Attendant Care Program through March of Dimes, which provide support in settings such as workplaces or schools. All of these models remain under-resourced and typically require medical confirmation of eligibility from a physician.\r\n\r\nOne consequence of these fragmented models is that the affective dimension of care\u2014emotional connection, trust, and relational interdependence\u2014can be overlooked. These care arrangements can also create precarious working conditions for attendants, sometimes with negative impacts on their health and wellbeing.\r\n\r\nMore recently, the ILM has taken seriously Eva Kittay\u2019s critique of total independence as \u201ca mere fiction\u201d (Kittay, p. 51). Independent Living Centres are increasingly reflecting on the interdependence that underlies all care relationships, recognizing our shared need for connection, support, and survival.\r\n\r\nFor a poetic expression of this evolving philosophy, visit the Centre for Independent Living in Toronto\u2019s website to read \u201cIndependence, Interdependence\u201d<\/a>.\r\n

Mutual Aid and Collective Care<\/span><\/h2>\r\n

Because everyone gives and\/or receives care at some point in their life, a society structured around care ensures, in the words of philosopher Eva Kittay, \u201ca dignified, flourishing life\u2014both for the cared for, and for the carer\u201d (Kittay, 2011, p. 54).<\/p>\r\n

Think back to the model of care presented at the start of this module in the TED Talk by Janey Starling and Seyi Falodun-Liburd, \u201cHow Collective Care Can Change Society.\u201d<\/em> Collective care refers to communities organizing themselves to meet each other\u2019s needs\u2014not out of charity, but through solidarity. This approach is grounded in a critical awareness that state institutions and the market often fall short of meeting community needs\u2014or exclude them altogether.<\/p>\r\n

Collective care emphasizes interdependence and treats accessibility as a shared responsibility. At the heart of this practice is mutual aid, where care is reciprocal and community-driven, rather than top-down or conditional. This kind of care challenges the limitations of institutional systems and envisions a more connected, responsive way of supporting one another.<\/p>\r\n\r\n

An example of collective care is the concept of 'aging in place,' where older adults continue living in their own homes as they age. These individuals may need support with daily activities such as chores, errands, meals, medication, or transportation to medical appointments. Often, this care is provided by informal networks of family, friends, and neighbours.<\/p>\r\n

Another example is Loree Erickson\u2019s Care Collective, which centers queer, disabled, and mad community members in practices of interdependent care. You can learn more on Loree\u2019s Care Collective website<\/a> or through her recorded talk, Cultivating Cultures of Care<\/a>.<\/p>\r\n

Here are a few more examples of mutual aid networks and collective care initiatives:<\/p>\r\n\r\n