The Need to Move from Care to Healing
October 2022
by
Lead Author: Ellis Roberts-Wright
Editor: Araceli Camargo, MSc Neuroscience,
Healthcare, like many other systems, is under the hegemony of western society; how the body is conceptualised to how the body is restored are influenced by western norms.
At its core is the word “care” which, as we discussed in the main report, relates to a unidirectional and hierarchical relationship between the carer and the person being cared for.
This relationship becomes limited and creates austerity. However, it does not need to be this way: many non-western societies see health as ecological and communal, meaning that at the core is healing rather than care.
Healing is built on bidirectional relationships. For instance, as we tend to a garden, we are moving the soil, which allows us to absorb their microbiome, and we are also exposed to vitamin D from the sun. Therefore, as we tend to the plant, we are nourishing ourselves - this is healing. It is mutually symbiotic, bidirectional, and relational rather than hierarchical. In this framework, healing is abundant and it is also preventative. We are not waiting for sickness to set in for healing or nourishing to begin.
We can extend this to people; when we are in community, we are able to share resources, tend to each other, nourish each other - this is healing.
Representation in Care
One of the tenets of white supremacy is to create inequities driven by gender, race, class, and ability. This has led to people experiencing what we call biological inequity, meaning that the experience of inequity puts certain people in more contact with stressors 1, 2, 3. These can be psychosocial stressors such as experiencing discrimination, living with financial worry, unbalanced childcare duties, or experiencing a loss. There are also environmental stressors; those who are marginalised often experience more acute and long-term exposure to air and water pollution, as well as living in places with high levels of noise. All of this adds up to health inequity: those who experience more trauma and stress are at higher risk of chronic illnesses or being among those who “need to be cured” 4, 5, 6.
However, despite those who experience biological inequity making more use of the medical industry, they are often underrepresented on the professional side. Medical students from lower socio-economic backgrounds and from ethnic minorities are both significantly underrepresented 7. Additionally, disabled people are massively underrepresented in the profession, with just 3% of doctors in one survey identifying as disabled8, and 77% of respondents in a separate survey stating they were worried about being treated unfavourably if they disclosed a disability or long-term health condition9. The medical profession is generally seen as unwelcoming – and unsuitable – for disabled people, as described in the BMA report, Disability in the Medical Profession10.
Whilst we need more representation across the medical industry, it is the system that needs to be dismantled, as it is not working. Otherwise, even when we do have representation, they ultimately must still do the bidding of the system, and do not bring the change we desperately need.
https://en.wikipedia.org/wiki/Biological_inequity
https://www.medrxiv.org/content/10.1101/2021.01.24.21250397v1
https://www.ethnicity-facts-figures.service.gov.uk/uk-population-by-ethnicity/demographics/people-living-in-deprived-neighbourhoods/latest#main-facts-and-figures
https://en.wikipedia.org/wiki/Biological_inequity
https://www.medrxiv.org/content/10.1101/2021.01.24.21250397v1
https://www.ethnicity-facts-figures.service.gov.uk/uk-population-by-ethnicity/demographics/people-living-in-deprived-neighbourhoods/latest#main-facts-and-figures
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2548873/
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2777420
https://www.bma.org.uk/media/2923/bma-disability-in-the-medical-profession.pdf
https://www.bma.org.uk/media/2923/bma-disability-in-the-medical-profession.pdf
The Erasure of Healing Imaginations
The relationship between patient and doctor in western medicine is paternalistic, which discourages discourse and autonomy over our healing3,4. This contributes to the pervasive narrative that healthcare is “best left to the professionals,” with at-home remedies and attempts to care for our bodies outside of this system increasingly becoming a point of mockery. For instance, ethnobotany has long been dismissed by western cultures as simply “placebo”5. Even the name is problematic, racialsing, othering, and infantilising historic Indigenous Healing Wisdoms6. Trans and LGBTQ+ communities also have a long history of finding healing outside the confines of western medicine, mainly out of necessity, as they are often mistreated and dismissed by doctors7,8,9.
The Black Trans, gender non-binary, and gay led “ball houses” of the 1970s and 80s are a great example10. They were not only places of cultural liberation and rebellion against heteronormaty, they were also an alternative to family, which facilitated healing11. These houses and culture provided the time and space for cultivating self-esteem/love. They were also experiencing acceptance, solidarity, and communal love - many for the first time in their life. Feeling included and accepted, and building self-acceptance is part of healing loneliness, anxiety, and depression, and even of preventing suicide12,13,14,15. Further, these houses fed and housed those who have been systematically marginalised due to race, sexuality, and gender 16. Finally, there was also a strong culture of advocacy for better healthcare, especially during the rise of the AIDS epidemic17. This type of healing is often understudied, undervalued, misunderstood, and ridiculed by the western medical system. We must consider how capitalism benefits from our increasingly disconnected relationships with our bodies: it is easier to persuade someone to overwork themselves if they are not in touch with what it is doing to them18.
https://docs.cdn.yougov.com/etz2olm0pn/YouGov%20-%20Profession%20perceptions%20(international).pdf
https://psycnet.apa.org/record/2022-07540-001
https://www.scirp.org/html/2-2290230_54041.htm?pagespeed=noscript
http://www.smj.org.sg/sites/default/files/4303/4303sf3.pdf
https://pubmed.ncbi.nlm.nih.gov/94415/
https://www.nzmsj.com/uploads/3/1/8/4/31845897/29_14nzmsj_issue_14.pdf
https://uk.finance.yahoo.com/news/gynecologist-black-trans-man-dehumanizing-133234148.html
https://www.sciencedirect.com/science/article/pii/S0272735820301082
https://link.springer.com/article/10.1007/s13178-021-00681-9
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3489283/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3489283/
https://i-d.vice.com/en/article/j58934/voguing-to-survive-how-nycs-kiki-culture-is-giving-life-to-lgbtq-youth-of-colour
https://www.tandfonline.com/doi/abs/10.1080/00224499.2011.637248
https://www.cambridge.org/core/journals/european-psychiatry/article/social-cohesion-connection-and-prescription-good-ways-for-preventing-suicide/092801EF5EA7A89FCF9D7B2B4854C87F
https://jech.bmj.com/content/73/2/117
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3489283/
https://www.tandfonline.com/doi/abs/10.1080/10538720902772006
https://www.proquest.com/openview/5d725f37b5717e9bf564b5d9a4429bbd/1
Health Inequities Driven by Poor Healthcare
Appallingly, the difference between a supportive doctor who will write you a letter “confirming” your “claims” of disability can mean the difference between being able to pay your rent, or even feed yourself. Doctors’ letters are also often requested as evidence in myriad societal situations; from qualifying for “reasonable adjustments” to make your place of work or study more accessible, to receiving a free “carer ticket” to attend events with support, to applying for a Blue Badge to allow you to park in accessible spots, there is a constant need for external top-down and paternalistic “permission” is needed. This is an inordinate amount of healthcare gatekeeping that leads to various inequities, especially when disability intersects with gender, sex, class, and race2,3.
The power that doctors are granted over the lives of disabled people extends far outside any doctor’s office. This ever-present power imbalance, compounded by the frequency at which disabled people experience trauma at the hands of those lauded as their saviours, means they often conceptualise the healthcare system as another form of control, a central player in maintaining the ableist ideas so pervasive in a society that seeks to “normalise” disabled people and improve their ability to perform under capitalism.
Race, class, gender, and queerness all have huge impacts on how people are treated within the healthcare system4, and thus how they conceptualise it and engage with it. It is not uncommon to see discussions of the pervasiveness of racism, misogyny, classism, queerphobia, and many other forms of discrimination lead to significant challenges for many people to engage with the system, even for relatively simple and acute situations5,6,7 There seems to be growing discussion of how common these many forms of discrimination still are within the healthcare system, and a growing unwillingness to accept the idea that we should simply be grateful to have access to free healthcare in the UK.
The free National Health Service of the UK is increasingly under threat as the government prioritises hyper capitalism over health and people. This will mean that the already long waiting lists will get longer, further impeding access to healthcare and healing within a dignified timeframe. And for those who cannot afford to switch to private healthcare, this will exacerbate current health inequities 8. However, criticism should not only be put on the government and its decisions regarding the NHS, we should also address power dynamics within the system and its discriminatory practices9,10. The hierarchical nature of our current approach to healthcare is far more fundamental, and all the money in the world will not unpick the dangerous power dynamics present between doctors and patients. Until we shift the cultural ideas we have around health, illness, disability, and care, we will be unable to imagine a world in which our bodies are truly our own, and are truly us, instead of just a vessel for doing.
Sources
https://www.gov.uk/government/publications/the-fit-note-a-guide-for-patients-and-employees/the-fit-note-guidance-for-patients-and-employees
https://jme.bmj.com/content/27/1/25
https://link.springer.com/article/10.1007/s10464-009-9280-6
https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-017-0179-8
https://ojs.library.ubc.ca/index.php/bcstudies/article/download/195283/191064
https://www.urbanhealthcouncil.com/reports-playbooks/obesity-and-trauma
https://link.springer.com/chapter/10.1007/978-3-030-48744-7_11
https://www.nuffieldtrust.org.uk/news-item/poorest-get-worse-quality-of-nhs-care-in-england-new-research-finds
https://www.nuffieldtrust.org.uk/resource/how-much-is-covid-19-to-blame-for-growing-nhs-waiting-times
https://www.nuffieldtrust.org.uk/news-item/poorest-get-worse-quality-of-nhs-care-in-england-new-research-finds
https://www.healthwatch.co.uk/response/2022-07-22/are-nhs-waiting-times-pushing-more-people-go-private
Healing & Bodily Autonomy
There is a growing feeling there is no point being in touch with our bodies because our subjectivity cannot be trusted, especially when there are machines that can provide us with numbers and results that can be pointed to as “objective truth.” But this perverted and supremacy rooted form of “healthcare” is not an inevitability. We can dream of other possibilities, and be inspired by already existing healing practices outside the confines of western medicine. This can be seen in the ever-growing community knowledge amongst trans people administering “DIY” HRT (Hormone Replacement Therapy). Faced with multi-year wait-times and paternalistic practices, trans communities are finding ways to take more control of their own healing and accessing HRT outside of the official medical system. Hormones are acquired through a range of sources: from online pharmacies with minimal gatekeeping, to menopausal cis women sharing their prescriptions, to trans people even becoming proficient at synthesising oestrogen to allow them to supply their community at-cost or very minimal profit prices. As well as turning to their community to access the hormones themselves, a plethora of information about HRT is shared within the community through in-person conversation and teaching, online forums, and detailed guides that break down everything from different ways to administer hormones and how to do so safely, what effects to expect and when, and how to interpret your own blood test results1,2. Even those who have their hormones prescribed and monitored by a doctor will often utilise the knowledge shared by “DIYers”, as it is not uncommon for doctors to have very little knowledge on trans health and HRT, leaving many patients turning to “DIY” information to spot abnormalities doctors have missed in blood tests, or just to learn what they can expect to happen as they introduce exogenous hormones to their bodies. Even when doctors are proficient, the knowledge trans people can access about their care through their communities can be incredibly empowering, serving to disrupt the patient/doctor power imbalance by giving patients access to all the information they would need to carry out their own care.
Similarly, disability justice organisers are constantly experimenting with a multitude of takes on “care collectives/care webs”: organising groups that explore possibilities for getting the needs and dreams of disabled people met outside of state systems or charities, turning to their communities to create care that is sustainable, fulfilling, and joyful for everyone involved. These are just a snapshot view of just a couple of alternatives people are dreaming up and making happen because they know this current dominant system is not serving us because, when we really stop and feel it, we know – a bone deep kind of knowing – that we can do better than this, that we have done better than this, that we are doing better than this.
Sources
https://www.reddit.com/r/TransDIY/
https://diyhrt.wiki
New Concepts for Healing
Thankfully, there are conceptualisations that are far more exciting and expansive than any dictionary definition could begin to capture. While capitalism devalues the feminised labour of care, disinterested in going beyond what is needed to keep people alive, so they can consume and/or produce, those of us shunted aside by the uncaring nature of capitalism are primed to reimagine care: what it can look like, who can do it, and how it can make everyone involved feel. One such imagining can be found in The Care Manifesto: The Politics Of Interdependence, describing a vision of “universal care”:
“Universal care means that care – in all its various manifestations – is our priority not only in the domestic sphere but in all spheres: from our kinship groups and communities to our states and planet. Prioritising and working towards a sense of universal care – and making this common sense – is necessary for the cultivation of a caring politics, fulfilling lives, and a sustainable world.
Achieving this vision of universal care is of course as challenging as it is pressing. It will involve avowing our mutual interdependencies and embracing the ubiquitous ambivalences at the heart of care and caregiving. It will mean ensuring that care is distributed in an egalitarian way – neither assumed to be unproductive and primarily women’s work by nature, nor, when paid, carried out by mostly women who are poor, immigrant, or of colour.
The goal is to ensure that the whole of society shares care’s multiple joys and burdens. Across different scales of life, this vision translates into reimagining the limits of familial care to encompass more expansive or ‘promiscuous’ models of kinship; reclaiming forms of genuinely collective and communal life; adopting alternatives to capitalist markets and resisting the marketisation of care and care infrastructures; restoring, invigorating and radically deepening our welfare states; and, finally, mobilising and cultivating radical cosmopolitan conviviality, porous borders and Green New Deals at the transnational level.”
This imagining of care may seem so far from our current society as to be unbelievable, but by delving into disability justice work we can see real-life examples of community-organised care, working from similar principles toward similar goals. While mainstream society may imagine disabled people simplistically as receivers of care, we are in fact not only skilled at providing care, but we also have valuable knowledge about the practice of asking for care, communicating our needs, and learning the needs of others so that we can support them too. Disabled people have often done much of the hard but important work of unpacking the fear and shame around care, and by centring us in conversations about care, everyone stands to benefit from this work, and the broadened perspective it can offer.
“With disability justice, we want to move away from the “myth of independence,” that everyone can and should be able to do everything on their own. I am not fighting for independence, as much of the disability rights movement rallies behind. I am fighting for an interdependence that embraces need and tells the truth: no one does it on their own and the myth of independence is just that, a myth.” – Mia Mungus
Considerations
We are not suggesting that doctors are obsolete, we want their role and power structures re-imagined. The relationship needs to be one of collaboration and solidarity. For example, there are organisations like the People's Health Movement, which is a global network of health activists and doctors that is organised to combat inequities. This often means advocating for worker rights alongside communities or advocating against air pollution. We need ecological healing, which requires our doctors to be part of our communities rather than paternalistic.
Practically speaking, we need to create equitable food systems that heal and restore the Land1,2, we need programmes that provide opportunities for alternative “manhood” models that are not steeped in supremacy3, we need hubs that are places of co-learning and co-imagining for more equitable civic systems4, we need to be able to imagine and create our own medical practices that are steeped in Indigenous roots, and we need specialised healing hubs and networks for various demographics or to respond to specific phenomena (e.g., Long Covid)5. Fortunately, we do have all of this and so much more already growing and expanding. We are just missing structural funding in order to gain even more momentum. Many funders also operate under the supremacy rooted assumption that we, the people, cannot possibly govern our own healing ideas or their economic structures. This is, of course, complete mythology as there is a long history to the contrary.
Sources
https://www.sierraclub.org/sierra/preserving-native-food-traditions
https://www.conservation.org/blog/as-a-vital-lake-vanishes-a-woman-fights-for-the-people-it-leaves-behind
https://www.coffeeafrique.co.uk/
https://civicsquare.cc/
https://www.soulfirefarm.org/
