For our first meeting of the semester, we read:
- Cynthia Lewiecki-Wilson and Jen Cellio, ‘Introduction’, Disability and Mothering: Liminal Spaces of Embodied Knowledge (Syracuse University Press 2011), pp. 1-15. https://www.jstor.org/stable/j.ctt1j1vzh7
- Leah Lakshmi Piepzna-Samarasinha, ‘A Modest Proposal For A Fair Trade Emotional Labor Economy’, in Care Work: Dreaming Disability Justice (Arsenal Pulp Press, 2018), pp. 136-148.
Institutionalisation of Care
The discussion began with an observation on the institutionalisation of care in hospitals, care homes, and state-run institutions for child with learning disabilities, and the stigma around institutionalised care. For many families, sending a relative to an institution because they can no longer look after them at home is still seen as shameful and irresponsible. Widespread institutional abuse of patients and residents have made families weary of placing their loved ones into their care, yet the financial costs and time needed to take care of ill family members mean that often people have little choice. We then discussed the problems of care within institutions, namely the lack of funding, objectification of patients, ableism, racism and sexism. Materialist biomedicine tend to privilege the health of the body/brain over the wellbeing of the person, and while there are now measures like arts prescriptions, where doctors ‘prescribe’ visits to museums and nature to patients to improve their mental health, we were sceptical of the inherent elitist assumptions that museums are relaxing spaces for everyone (never mind the oppressive colonial legacies that major museums are founded on) and the implied patronising notion that arts are ‘useless’ unless prescribed and legitimated by a physician.
Looking for possible alternative caring that could address these issues, we then turned to talk about what Lakshmi’ meant by ‘permaculture of care’. We suggested that a ‘permaculture of care’ could mean that care is necessarily organic and sustainable: a kind of care that recognises that people with different conditions require different forms of care, and is systematic and proactive (as opposed to reactive) in addressing the current and anticipated needs of patients, disabled people, and care-givers. We pointed to Eva Kittay’s concept of doula, the person who looks after the mother who has just given birth, as an example of such care. At the same time, we noted that with the medicalisation of childbirth, with most births now taking place at hospitals instead of at home and attended by male gynaecologists instead of community midwives, there is a loss of support network for mothers and women who traditionally would receive intergenerational childcare support from parents or older family members. We commented that this loss of intergenerational care is unfortunate because caring for grandchildren is often a joyful and meaningful experience for both the elderly and the children. It is noted that there are schemes around the world that bring children in nurseries into nursing homes to help tackle elderly loneliness, though we were sceptical of whether these brief regimented encounters in institutions (not to mention the bureaucratic restrictions) can really substitute for the intimate relationships of care within the family.
On the question of emotional care work, the discussion then shifted to whether the work of caring can be replaced by Artificial Intelligence. What kind of care work should be delegated to robots? This depends on how we define ‘care’. At present care work is considered low way labour and there is a shortage of qualified, trained care workers which means that disabled people frequently find themselves unexpectedly stranded without assistance when their scheduled personal care assistants fail to turn up. As Lakshmi Piepzna-Samarasinha writes in Care Work, black and queer disabled people are often forced to accept care along with the abuse, racism and homo/transphobia from care workers because of lack of alternative care options. To have robots performing some physical forms of care using automated hoists, could therefore potentially be desirable for people with restricted mobility who require assistance transferring in and out of bed, which could increase their independence. But other forms of AI technology, like ‘smart’ speakers for helping patients with medical queries, are less enticing. In addition to problems of unwanted digital surveillance, this kind of care technology would further isolate disabled and elderly people as face-to-face human contact is replaced by screens. Social interaction is vital for emotional and mental wellbeing and the care that comes from human presence and friendship cannot be replaced by technology.
This prompted the question: what kind of model of care should we adopt? To which our answer was: ask disabled people. Noting both the need for independence and the need for community, we agreed that the best approach to care is to let disabled people decide when and what kind of care they receive from others. In Care Work, Lakshmi Piepzna-Samarasinha writes of ‘experiments’ where she creates care webs and networks of care by pooling together care resources with other disabled friends and allies. Such a network would distribute care according to demand and need while recognising the care-giver’s limitations as each would play to their strengths and offer as much emotional, physical, or financial care as they can afford. But disadvantages of this collectivist model of care is that it is time-consuming and costly. Many queer/trans disabled people of colour are already care-givers to friends, partners, and family, even though their caregiving roles are rarely acknowledge or valued. Care work within a capitalist economy are disproportionately performed by working class women for low wages, while care activism and emotional labour carried out by disabled and people of colour go unrecognised and often dismissed as not being ‘real’ (read: economically productive) work.
Contradictions in who can or cannot provide/deserve care are rooted in prejudices in cultural conceptions of mothering and the labour of caring. Sex workers, teenagers, disabled, mentally ill women are deemed as ‘bad’ or unqualified mothers incapable of providing adequate care for their children, despite the fact that the ‘inadequacy’ often comes from the limitations of resources rather than deficiency in their personal capacity to care. Disabled mothers demonstrate that disabled people are not just objects of care but can also give care to others (emotionally and sometimes physically), and self-care. Yet disability continue to be used as an excuse to deter disabled pregnancies and to remove disabled women’s rights to family. While we agreed that the state does have a role to play in safeguarding and managing care for vulnerable people, and should intervene when the family is too dysfunctional and fragmented to give children and disabled people the care they need, the current climate of austerity and social care funding cut has meant that there is insufficient resources for independent living and community care, leaving little to no support for care leavers and adults with learning disabilities. What we need is a consistent system of care that engages and empowers disabled people across all sectors of society, and respects them partners in care, and for that to happen, we need not just more money but a radical overhaul of the economy of care as a whole.
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