CN: R*pe used in full, sexism, domestic violence,
trauma, abuse, healthcare neglect,
chronic pain, misdiagnosis
I am a working class, unemployed, disabled woman. Recently a friend said to me: “I wish I didn’t have to go to work, you’re so lucky!” Although this comment was clearly not intended to offend, it betrays a deep ignorance of my life as a disabled, working class woman. My ‘unemployment’ doesn’t mean that I don’t work – it means that I don’t get paid for the work that I do. Most of my unpaid work is to ensure my continued existence in a climate of declining social care and insufficient, ineffective mental health services, and doing the same for my disabled friends and acquaintances when they are too exhausted or ill to provide for themselves. In my ‘spare time’ I develop skills to benefit and grow the communities that we rely on. Many of my friends, most of them disabled women, are doing the same thing.
This story of unpaid, unseen care work will be familiar to lots of women, but especially to working class, disabled, queer women, and woman of colour. We must care for our bodies and communities because we don’t have the resources to outsource care work, and we rarely have access to safe, unquestioned, sensitive care from mainstream services. When I am unable to care for myself, I turn to other disabled women because I know that (usually) they will not require me to educate them before they will support me, and because I feel safe with them. But this, again, places an extra care burden onto disabled women.
‘We must care for our bodies and communities because we don’t have the resources to outsource care work’
Disabled women are more likely to face other burdens already – namely, sexism and gender-based violence. In the UK, there are more disabled women than disabled men, even though there are more disabled boys than girls. Thus, women are more likely to become disabled, rather than being born disabled. There is not one clear reason for this, but there are clues in the treatment of women and girls. Neglect in healthcare, poor workforce conditions, and gender-based violence put women at increased risk of becoming disabled. Both in the UK, and worldwide, women are more likely to be disbelieved when reporting serious health problems; more likely to be in low paid, insecure work; and more likely to be victims of domestic violence and rape than men, all of which can have major implications on both physical and mental health. Repeated injuries and chronic stress from violence, neglect, abuse, poor conditions, and oppression can heighten inflammation in the body, which can trigger a whole host of disabling conditions, including autoimmune conditions. The issues become even more pronounced when we take into account the treatment of girls who are born disabled. Disabled girls are much more likely to be abused and neglected than non-disabled girls and disabled boys, which can lead to higher levels of additional, acquired disability.
When we are disabled as girls, or further disabled as disabled girls by trauma that we had no control over, we then expend further energy, and lots more unpaid work in processing that trauma so that we can heal. If we are lucky enough to have access to it, we attend years of therapy, sometimes spending tens of thousands of pounds due to a lack of publicly-funded therapy for survivors. In amongst the trauma-processing energy exerted by disabled women, we perform incredible levels of emotional and intellectual labour in an attempt to prevent further abuse. For example, being vigilant in relationships, constantly scanning the behaviour of others for signs of threat, performing threat/benefits analyses on our activities, and so on.
‘We perform incredible levels of emotional and intellectual labour in an attempt to prevent further abuse’
The effects of disabled women’s unpaid care work of both themselves and others, along with disabling treatment and its effects, are compounded by attitudes towards, and expectations placed on disabled women. Often there are double standards in what is socially required of disabled men and disabled women. A good example of this is how neurodivergent women are expected ‘pass’ as neurotypical more than male peers. If we have atypical ways of being, we are often expected to appease others by presenting ourselves in a more socially acceptable light. We are also expected to be kinder about neurotypical foibles and unbearable input. Autistic women are ‘let off the hook’ less often than autistic men for perceived social mistakes because, as women, we ‘should know better’, and men are expected to be ‘socially clueless’. This hurts both men and women; preventing men from taking responsibility for themselves, and encouraging women to take on too much responsibility. If women are disabled in a way which affects our ability to perform aesthetic femininity, then we are expected to tame our unruly natural bodies, or else experience concern-bombing about our ‘self-esteem’, excessive staring, or gendered insults.
Sexist attitudes also infiltrate the medical world and affect how we are treated by medical professionals. These attitudes force us to exert precious energy to conform to male expectations – otherwise, we might not be taken seriously. If we have chronic pain, we combat these attitudes by learning to express ourselves in ways that are acceptable to male doctors who often do not take women’s pain as seriously as men’s pain. We do this by: repeating ourselves; keeping extensive pain diaries and records; enrolling the help of friends, if we have them; self-advocating at every turn. If we suffer emotionally or mentally, we are expected to turn our pain inwards rather than outwards. If we externalise our pain via anger or frustration, we risk being labelled as ‘hysterical’.Ultimately, the emotional labour exerted by disabled women to deal with sexist attitudes and expectations adds to their existing workload.
Not only are disabled women engaging in lots of unpaid care work, more likely to be traumatised, less likely to be taken seriously by medical professionals, and held to different standards than disabled men, but women are also more likely to be overlooked when a condition isn’t seen as a ‘female’ one. Autism is a particularly good example; the ‘male brain’ theory of autism suggests that autistic people have an ‘extreme male brain’. Despite this theory being sexist, essentialist, neurotypically biased, and based on flawed research methods, it is a theory which has a lot of cultural clout and results in far fewer girls being identified as autistic. In fact, lots of autistic girls are misdiagnosed with other conditions and receive inappropriate treatments for years for these conditions before being correctly diagnosed autistic in later life. Additionally, most of the research into autistic interaction focuses on autistic boys and men. Social interaction is affected by gendered conditioning; failing to separate autistic ways of being/interacting from socialised ‘male’ ways of being/interacting biases results. These results then affect the way that all autistic people, including women, non-binary people, and non-traditional men, are perceived, assessed, and supported.
Considering the unpaid emotional and intellectual work that disabled women do in our daily lives, along with the different expectations placed on disabled women, and sexist assessment and support of certain groups of women, it is no wonder that we are more likely to be out of paid work than disabled men. The World Bank estimates states that 75% of disabled women worldwide are excluded from the workforce, even though the majority still perform care work for their families and loved ones. Disabled women are also paid less than both non-disabled women, and disabled men; are more likely than men to have caring responsibilities; and more likely to do part-time work. Because of lower earnings, if we become unemployed we are more likely to encounter financial difficulties when benefits payments are delayed, due to cash flow problems and lack of savings. In the UK, universal credit delays have hit disabled women particularly hard for this reason and also because we often have higher daily living costs relating to being disabled (e.g. therapy and medication payments, paying for assistance, taxi costs if we don’t drive, convenience foods if we struggle to cook).
When disabled women are asked by benefit assessors why we cannot work, often the truthful answer is that we already do considerable unpaid work and cannot juggle paid work on top of it. Acknowledging this, however, can be used to deny us the benefits we need to survive. Assessors assume that if a person can perform unpaid care work, then they are capable of paid work. An assessor once questioned my eligibility for disability benefits because I said that I cared for my cat – which is the least taxing work that I do! Disabled women’s burden of care cannot simply be dropped and redirected towards paid work unless somebody else is paid to care for us and our (inter)dependents, and unless workplaces become the kind of flexible that would make capitalists cry. In the wake of massive cuts to health and social care, along with the insistence of government attachment to big business, this is an unrealistic fantasy.
Knowing the challenges faced by disabled women, you would think that our issues would be a hot topic for action in feminist and activist circles. But the converse is true. Often disabled women drop off the feminist and activist agenda because we find it difficult to attend meetings or contribute in the public sphere. We are often trapped by inaccessible public spaces and a care burden so heavy and necessary that we don’t have time to spare for activism and lobbying for systematic change. If we also do paid work, then even more so.
So, how can our communities improve activism around issues faced by disabled women? Engaging with disabled women online, in accessible spaces, and in short, efficient meetings which specifically discuss our issues, is a good start. Specific areas of action to focus on might include:
- Raising awareness about unpaid, unseen burdens of care on disabled women
- Raising awareness of the disproportionate disablement of women
- Lobbying for funding of trauma and domestic violence services
- Campaigning for healthcare equality, especially in women’s health and the management of chronic illness
- Consciousness-raising about the effect of gendered expectations on disabled women
- Campaigning for compensation and therapy for victims of gender-based violence and neglect
- Lobbying to eliminate pay gaps and improve working conditions
- Making work accessible and flexible for those who have the time and skills to work
- Protesting benefit ‘reforms’ which disproportionately harm disabled women
- Stopping cuts to social care and welfare services
However this should not be yet another job for disabled women. We need non-disabled people to listen to us, and then pick up these fights, so that in the meantime we can continue the strenuous work of keeping ourselves and our loved ones alive and well.
Header image by Max Wei