Of late, I keep hearing the term, struggle porn. It is similar to disability porn where people with disabilities are often shown dancing, painting with their amputated arm etc., and these graphic videos are shared on social media to the high praises of people. It is something I am very uncomfortable with; my opinion always being—let’s celebrate lives that are ordinary: disabled people do not have to do special or extraordinary to be celebrated. Similarly struggle porn. Isn’t it familiar to bump into a friend and ask what’s new, and they start saying how they’ve been so busy, having had no time to breathe, no time for friends, spending such late hours at work, etc.? It is as if we are all being told to work harder, and then broadcast this life to the world, thinking we will get brownie points for being this busy. Sundays are then broadcast as #SelfCareSundays. This hashtag doing the rounds on instagram is trending. But what about the people with lived experience, like myself and many others, for whom self-care is a daily concern? What about the people for whom working two hours exhausts them and they need a nap? Are some lives more valuable than others? If so, why?
First to some definitional categories.
Capitalism. Capitalism raises its hand everywhere as the culprit. Capitalism creates this value on productivity and places a value on paid, productive work, and hence the people who undertake this paid, productive work. But what about the stay-at-home women, the poets, the thinkers, the mad, the poor? Are their lives less valuable? According to capitalism, yes. I grew up being told to study hard else I would become a sweeper. Because only certain professions matter. In Asian countries such as mine, studying and the pursuit of becoming “something” is emphasised. The pursuit of joy is only something you stumble upon later, when the traditional models of success defeat you and your spirit.
Ableism. According to Simi Linton, noted author and expert on disability and arts, ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled. In other words, it is discrimination as well as social prejudice against people with disabilities. Just as there is a need to fight against other entrenched forms of oppression, such as racism, sexism, ableism etc., that constrict opportunities and limit people, there is a need to resist ableism that hinders the equal participation of people with differing abilities.
Yet another term that seeks to highlight the need for breaking down of hierarchies based on human diversity is the term neurodiversity. Neurodiversity argues that the differences in the way people’s brains are wired is based on human genome and that these differences are essential to evolution. Therefore, why judge or label people based on their abilities or put labels on them, further leading to division, stigma and discrimination? Neurodiversity, similar to challenging ableist notions, argues that instead of calling certain neurological conditions pathological, the differing neurological conditions should be recognised and treated as a social category, just as we do for gender, race, and more.
Capitalism and Ableism- Mutually feeding each other
Capitalism and the treatment of people with disabilities are interlinked in insidious way. During the Holocaust, in Nazi Germany, psychiatric patients were routinely sent to the gas chamber. In my own country, India, and many others, people with disabilities are routinely sterilised or institutionalised. It is this colonial mindset of treating the “idiots and lunatics” like criminals, only to be sent to the outskirts of the city, banned from the “normal”, to be locked away, ‘for their own good’. In many western countries, like the UK, where I live currently, although policies may have changed, I am not sure mindsets have changed that much. There is still an undervaluation to people living with disabilities and the Industrial Revolution and Capitalism are to be blamed, in my opinion.
The other word that keeps cropping up in high level ministerial summits such as the one in London a few months ago, which sought to discuss global mental health and how to take it to less developed countries, is the word “burden”. The ideology of burden is focused on people with mental health as a burden on their economies and as contributors to the burden of disease. In some cases, even the word epidemic is used when it comes to mental health, claiming that mental illness is an epidemic that is sweeping the world and that which needs to be stemmed. The burden theory, particularly the economic burden, is again linked directly to capitalism. Similarly, the reduced lifespan of people living with a mental health label (more on why we should call this a psychosocial disability later) means reduced working years and is seen from the burden lens. However, I argue that people have been paying taxes for years, and if they get disabled, they are entitled to benefits. In fact, irrespective of whether they are/have been tax paying or not, it is important to recognize that these are the communities we have built together as equal stakeholders in which persons with mental health labels have had an equal role to play. How are we then suddenly counting people who need to claim benefits as burdens?
It is also time to discard the burden of disease lens and center a trauma informed approach. The trauma informed approach acknowledges that people may have mental distress because of economic, political and environmental factors, besides the trajectories of their own lives which could have been source of trauma. Instead of recognizing and addressing these factors, many Governments often label it as a public health or health issue. For example, it is often seen that farmer suicides are labelled as mental health issues instead of addressing the root causes behind the farmer’s plights. Giving antidepressants to farmers is not going to alleviate distress that is rooted in social, economic and political factors!
Based on the understanding of ability (physical, mental, intellectual, emotional) as being socially constructed to benefit some people over others, the trauma informed theory asks for mental illness to be looked upon through a societal lens.
Instead of using an illness lens that looks to the person as a solution to their own distress, thereby putting the onus on the affected person to get out of the distress situation, the societal lens looks at what may have happened to a person or looks at the family situation, the economic, political, environmental changes and sees what may have happened to the person that put them in a state of distress or psychosis.
This is why a lot of us argue that we should be changing the way we refer to mental illness and call it a psychosocial disability so that the onus is on the entire system to change, and not the affected individual solely. It is akin to thinking of society as a fabric and how we are all interconnected. It is up to the community to change and heal and support each other. But again, capitalistic societies are changing—communities are non-existent, family structures are breaking down. There are no elderly grandparents at home to take care of members with different abilities and needs, and no one has the time to stop and care for a stranger collapsed on the street. At the same time, state support for persons with disability is declining. If we can’t display kindness and compassion when one of us is hurting, is in a state of psychosis, what kind of a world are we really living in? What are these communities we are creating?
In these times of ableist policy, of capitalism and of treating the disabled as burdens, the governments pass the buck, saying it is not their problem. Families pass the buck claiming they are too busy earning a living. Benefits are hard to claim. The mad, the indigenous, the poor, the disabled—they live on the fringes, most of them too tired or weak to fight for their rights. Flowers grow and wither, then die. So it is with people. Be it wildflowers or the cultivated rose, both have their place in Nature. Both are vital. So it is with our people. It is time to let everyone bloom.