Humans live in communities. We live in villages, towns and cities, and we see our family, friends and colleagues regularly. Humans live together. Yet despite this, there is a drive for us to be independent, to provide for ourselves financially and look after ourselves by ourselves. We are considered to have made it if we are self-sufficient and never need to ask for help. But many disabled or chronically ill people, such as myself, are not considered to be independent, either in the eyes of the law, or in the eyes of those who surround us. Many of us are ashamed of this. But we so often fail to recognise that the ideal of independence is based on a false premise and, as such, is not really achievable for anyone. It could be called the myth of independence.
What is independence?
Independence, as it is used now, usually means somebody who is self-sufficient – in that they earn their own money, do not live with their parents after the age of 18, and are able to take care of their own basic needs, such as eating, washing, etc.
I, as a chronically ill person, do not fit this description. Ever since I’ve been sick, my parents have paid for all my living costs as I am ineligible for benefits due to living abroad. This means I am financially dependent on them. Often, I am too sick to cook for myself, or arrange my Dutch paperwork, so my partner does that for me. This means, I am dependent on him for food and all sorts of other basic supports. I have had to move back in with my parents several times, over the course of my twenties, when I have become too ill to look after myself. I clearly do not live up to the ideal of independence.
And I am ashamed of that – despite knowing that it is entirely necessary for me. I hate that I live off of my parents, aged 25, and I feel judged every time I meet someone new and they find out that I don’t work, and that my parents pay for me. I feel like a spoilt brat, even though I know that at the moment I only get out of bed for about an hour or two a day, so independence, as a typical notion, is just not possible for me – nor for many others with disabilities and chronic illnesses.
The myth of independence harms the disabled and chronically ill
This ideal or myth of independence has harmed me, and continues to harm disabled/ chronically ill people in many ways. It leads many of us to force ourselves into dangerous positions in order to avoid asking for help – arguably one of the hardest things to do. For a while, a few years ago, I was healthy enough to work for a limited number of hours a week. It was the first time since I was 16/17 that I was earning money, and it felt really good finally to be helping my parents out with my living costs. I was actually able to buy an avocado, or catch a tram or have a coffee out, without feeling guilty. I felt that, if I could only keep working, just a bit harder, I could finally be independent, like a 23-year-old should be.
Very quickly I began accepting extra shifts, and soon I was completely overdoing it. With an illness like CFS/ME, doing more than you are capable of leads to a sharp decline in health and, unsurprisingly, my health got significantly worse. But initially, I refused to quit my job, even when, after twenty minutes at work, I was shaking and sweating profusely with the effort, and popping sugar cubes every five minutes to keep going. Eventually I had no choice but to quit, and the loss of self-esteem I felt when once more I was living off my parents was huge.
Smaller, more regular examples include my constant rejection of help from housemates, when they offer to cook for me when I am sick. I know I need the help, but the part of me that is striving for independence makes me too ashamed to accept that help. And this means that I sometimes eat chocolate for dinner, or skip dinner completely, to preserve my independence – something which is not only unnecessary but also unhealthy.
The idea that some people are independent, and others are not, feeds into the idea that disabled/chronically ill people are burdens, because they are less normatively independent. By striving to meet the same ideals of self-care or financial independence, those of us unable to fit those ideals, simply appear lazy or failing. Our need for help with certain tasks is made hyper-visible because it is less normative, yet all the things that we provide in return are invisibilised because we are not seen as independent. For example, some of my partners’ friends think that I am a burden on him because I need help with cooking, but do not see the help that I very regularly give him with other things that I can do, with which he struggles. That is because they see me as overwhelmingly dependent, and they see him as independent.
As, as I have said before, in a previous blog, seeing disabled people as burdens is both damaging to our mental health, but also leads to very dangerous practices and paves the way for abuse of disabled people by other individuals or even at a state level. For example, the practice of not treating disabled people when hospitals become too full of people with corona virus comes from the idea that we are burdens and therefore less worth saving that so called ‘independent’ populace.
The myth of independence
When one stops to examine the idea of independence, it very quickly becomes clear that no one is truly independent; it is in fact a myth. The crisis around the corona virus has demonstrated this very clearly.
Let’s begin with financial independence. As we are shown by every recession, and what has made very clear during the recent pandemic, we are only financially secure when we have a job. By its very nature, having a job means you are dependent on your boss and your clients spending money and paying wages. The fact that so many people have been thrown into financial insecurity through losing their jobs due to corona shows just how dependent everyone is on their job. And that doesn’t exclude business owners and corporate CEOs. True, they often have things to fall back on, but they only make their money through having workers and thriving businesses – and often through exploiting others – so they too are dependent on others who will use their services, and work for them.
The corona crisis has also shown us just how dependent our health is on others. With a disease as contagious as the corona virus its very obvious that, to avoid getting sick, we rely on people with symptoms or who have tested positive with the virus to be responsible about quarantining. Whilst the corona virus is particularly threatening, this point also holds for other illness. Our health relies on people who can, getting vaccines; people with contagious illnesses taking precautions not to pass them on; people following proper safety protocols; and it relies on medical staff doing their jobs correctly, and having the know-how to deal with sickness and injury. Again, that means that no-one is truly independent.
A final example, although there are infinitely more, is with food. We require food to eat, but most of us don’t grow our own food. Those who do, still have to buy seeds, and use water to grow them. The rest of us rely on the huge chains that get food into our supermarkets and restaurants from all around the world. When borders close, or something else happens to this chain, we don’t have the food we need in our supermarkets, just as, at the beginning of the corona lock down, in many countries there were food shortages and supply chain breakages. So, clearly, we are all dependent on others in order to eat.
I don’t really need to give more examples to illustrate the fact that we live in a hyper globalised society that has a bigger web of dependencies than ever. Humans live together and are social, so of course we are dependent on one another for our existence. Capitalism only works through networks of exchanges and exploitation. We are all interconnected and dependent on one another. Yet, despite this, the myth of independence still persists – even though we can see that it is not realistically achievable by anyone, ever.
So why are some things included in the myth of independence and others not?
What is interesting to me is why certain dependencies, such as a dependence on a wage, is considered independent, whilst others, such as dependency on my family to support me with my living costs, is seen as a dependency. It seems that the main criteria informing the divide between those who are and are not considered independent is productivity. Those who are productive, particularly economically, are seen as independent, and those who are not, are seen as dependent.
So, this myth of independence seems to be based on ableist ideas that we need to be productive – something which benefits the continuation of neoliberal capitalism. By demonising and infantilising non-productivity and not having a job, people are driven to work and be productive – therefore maintaining the capitalist ideal.
Let’s embrace interdependence
But we could move away from having an ideal of independence and embrace the idea of interdependence. This is the idea that we are all connected and rely on each other in a complicated web of relations. We need each other and cannot function as single humans, or even single, family units. Acknowledging our reliance on one another, and on our need to work together, will help us all.
Embracing interdependence allows us to develop a society based on compassion for each other, and on a true appreciation of what one individual is able to give another – something which makes living in a community so important. It allows us each to give what we are best able to give, and to ask for help in the ways that we need it, without needing to feel the shame of unrequited dependence. Not only does this idea fight against ableist ideas which link our productivity levels with our worth, thereby helping disabled people, but it also gives non-disabled people ‘permission’ to rely on others, and to ask for and accept help when they need it – without appearing weak. This is not a new idea, but it is one that seems to increasingly have been forgotten. Together we must acknowledge our interdependency, so we can build a compassionate and accessible society for all.
‘But remember this. … there are millions and millions and millions of Eva Smiths and John Smiths … with their lives, their hopes and fears, their suffering and chance of happiness, all intertwined with our lives, and what we think and say and do. We don’t live alone. We are members of one body. We are responsible for each other. And I tell you that the time will soon come when, if men will not learn that lesson, then they will be taught it in fire and blood and anguish. Good night.’
Inspector Goole in An Inspector Calls by J B Priestley
Links
- A TED talk about independence and disability
- Interesting blog post about the myth of independence
