TW: discussion of eating disorder behaviours
I have a lot of clued up friends with a lot to say about disability politics and a lot of what I’ll say here has been drawn out in dialogue, not necessarily something I’ve come to entirely on my own. My own thinking is, of course, around eating disorders and the relationship they have to disability but much of it applies just the same to other disabilities.
Many of you are likely familiar with the social model of disability which posits disability as something that is socially reinforced through lack of accessibility in its many guises (no wheelchair ramp, no flexible working hours, no sign interpreters etc). It is the notion that a world designed without a recognition of differing needs and abilities is the very thing that causes disablement, rather than placing the onus on individuals and their impairments. It is useful here to make some distinction then between what it considered an impairment i.e. the lack of mobility due to chronic pain, the fact of being unable to walk unaided etc and the disabling factors that come alongside it i.e. a lack of walking aids available, lack of access to spaces for wheelchair users or those using mobility aids. One could conceivably have a world of limited disability whilst many impairments would remain. Those impairments could be accommodated for, anticipated, expected and accepted for the natural human variation that they are.
So, within these parameters, could an eating disorder be considered a disability? I’ve found that there are many things about anorexia that are disabling and there is an interesting overlap here of both mental and physical symptoms. Mental health conditions are often not necessarily posited as a disability in the same way that some physical conditions are – or, at least, not by the general population. I think there are many reasons for this but I think it is primarily due to how people imagine disability in relation to themselves. There is an idea that disability or disabled people are Other and belong to a class of people who are either deeply unfortunate child-like creatures or those who have made ‘bad choices’ in their lives and are suffering the consequences. Expanding this to mental illness challenges this notion simply because a wider range of people suffer from it and, God forbid, ‘normal’ people might be included under this.
People also like to think of most mental illness as fairly temporary. You struggle for a while, then you go onto medication, have a few therapy sessions and you’re good as new. That’s certainly how an increasingly privatised and stretched NHS would love to have it and their approach to support reflects this. A limited period of sessions of Cognitive Behavioural Therapy, some SSRI anti-depressant medication and a download of Headspace app and you’re sorted. Seeing mental illness as a disability would mean admitting that some people have enduring conditions that impact their lives significantly but it would also mean admitting that a much larger proportion of the population do have some form of disability. Seeing the shared struggle and similarities between mental illness and other types of disability is politically dangerous – as are most things which provide a material basis for organising.
There are, of course, significant differences between different types of impairments and how they will end up affecting one’s day to day life. Chronic conditions that have little scope for improvement will impact upon someone rather differently to a bout of mild depression. It is important not to flatten out the complexities of impairment and disability and claim that they have the same material impacts and that they impact people in anywhere near an even manner. Many factors beside the actual disability come into play here such as class position, race, gender, immigration status and so on. The impact of the same impairment on someone from a relatively wealthy background compared to someone on the poverty line is vastly different. Wealth can buy access thus wealth can mean less disablement stemming from what is objectively the same condition.
The temporality of disability, particularly in relation to mental illness, also alters the material circumstances of the disabled. To return specifically to eating disorders – many people suffer for many years without getting any support, so much so that they build a kind of identity around their disorder. Yet for others, like myself, they feel that the behaviour is at odds with who they’d like to be and how they see themselves. Many of the behaviours in eating disorders seem to be very intentional – the ‘choice’ not to eat, the ‘choice’ to over-exercise and so on. So, how can it reasonably be called a disability when the person seems to be disabling themselves? Indeed, how could an eating disorder really be accommodated and made less disabling without the intention to prevent the behaviours thus eliminating the problem? When one is recovered does this mean that they are no longer disabled? Does one become disabled temporarily, then?
I would posit that many disabilities are somewhat temporary, particularly things like addiction, mental illness and serious injuries than can eventually be rehabilitated. They may be something that is disabling for a person for a significant amount of time and yet can also be something that they eventually recover from and are no longer disabled by (or, at least, not to the extent they once were). Seeing disability this way is challenging because of the dichotomy society sets up of the disabled Other and the non-disabled, ‘normal’ person. Of course, it is entirely false.
In terms of accommodations which might make an eating disorder less disabling, I think this has to focus on the wider issues of the diet culture, systemic fatphobia, an end to the ‘war on obesity’ narratives as well as an understanding that not all exercise and movement is healthy for all people at all times. A clear example would be the recent move to try to force chain restaurants to display calories on their menus in an ill-thought out attempt to force people to make ‘healthier choices’, as though having this information at restaurants will impact this significantly (spoiler: it really won’t). This is an obvious trigger for many people with restrictive eating disorders – we obsessively count calories and track our food intake and in recovery we are trying to move away from our behaviours. Having the calories displayed will make this far more difficult to avoid and seriously impact positive choices in our recovery which is about gaining freedom NOT to base our every choice on number of calories and, instead, chose what we want to eat based on intuition and what will taste good to us.
In this example we see the way in which policies have been made with an extremely poor understanding of why people even chose to eat out in the first place – usually as a treat, special occasion or an enjoyable social activity. This isn’t the context in which one is usually thinking of making the more ‘healthy’ food choice. Encouraging a balanced diet begins with bringing down prices of fruit and vegetables, allowing people more time to be able to cook for themselves, ideas for a variety of meals they’ll actually enjoy eating. Not using guilt and shame to force people to restrict their food in an ultimately unhelpful way. It is also entirely ignorant of the issues of people with eating disorders which creates the context for them to thrive.
Of course, there are many disabling factors for someone with an eating disorder – mainly, our lack of ability to function well in a variety of contexts. Making choices about food, being able to go to supermarkets and pick up the right things that we feel we need, for example. I struggle personally with supermarkets at all times because of my sensory issues due to autism. But the added factor of my eating disorder, particularly before recovery, meant I could spend hours staring at food in supermarkets unable to come to any decision about what to buy – too many factors to consider. Calories, of course, but also nutritional value, satiety (whether it’d fill me up) and if the cost would be worth it. I would spend hours making complex calculations about calorie content vs nutritional value and try to time my eating exactly so that I would feel full enough to carry out certain activities that I needed to. I would be very rigid about what times I could and could not eat which means I had to structure my day carefully and turn things down if they did not fit properly.
This obsessive rigidity is very disabling and impacts a lot of what one is able to do functionally. A lot of energy is spent, also, on things like exercising which take precedent over all other activities. Being unable to feed yourself, unable to stop your compulsive behaviour and also struggling from fatigue and lack of ability to focus means it becomes more and more difficult to carry out your day to day activities. Physical symptoms can also be disabling – many people with eating disorders understandably have serious gastrointestinal issues which can cause severe bloating and constipation and pain. Some suffer from heart conditions, have poor immune systems and poor circulation which can lead to a whole host of other symptoms which prevent one from being able to function normally.
Despite anorexia having the second highest mortality rate of any mental illness (after addiction) there are a serious lack of resources dedicated to it or, indeed, any other eating disorder or mental health issue. The chronic underfunding and privatisation of the NHS by successive Tory governments means that all mental health provision is lacking to the point of severe neglect. My own experience has been that, after disclosing my eating disorder to my GP, I waited four months before getting any form of assessment from the eating disorder specialist team. In those months I struggled with wanting to be ‘sick enough’ to be taken seriously which impacted my ability to recover. When I was assessed and told I likely have anorexia I was told the wait for one to one therapy was 18 months or I could try group therapy in 6 months time. These wait times are even worse in other areas, so I’m told, and so many people with mental health issues are basically on their own in terms of attempting to recover. There is the option to go private, of course, which is what I’ve had to do with some financial assistance from my partners. Many have no such option.
Without the hope of treatment we are further disabled and the impacts of longer term mental illness take their toll. Early intervention has been proven to be key in successful recovery from eating disorders and yet with these waiting times the hope for this is very faint. Personally, I ended up taking my recovery into my own hands with support from partners and friends and a few private therapy sessions. I read self-help books extensively and researched my conditions and what approaches would be taken were I in treatment. I was able to do this because I come from an academic background and have experience previously with mental health treatments and training from my previous job. I also have a community of people around me who had the time and resources to provide some assistance.
Isolation in this context, then, would be a further disabling factor and one that is increasingly the case for many people. Of course, class plays a significant role in this, too and how able one is to use private therapy as a tool and whether one is able to take long term sick leave from their workplace as I have done. Having friends and partners with access to wealth also plays into this. Thus, though someone may have had to same impairments as me, they would be more disabled by them due to their access to treatment or ability to work on their own recovery with support. There are also those who are able to pay for private treatment in private hospitals with their own eating disorder specialist team whose wealth, in this case, gives them an even greater advantage.
The financial impact of disability should not be underestimated. For most us who work we quickly realise just how precarious our position is should we lose our job. I was relatively fortunate to have a couple months of pay when I first went off sick but many have no sick pay at all or are straight away on Statutory Sick Pay, a paltry amount of money by all accounts. I have had to quit my job due to my eating disorder and the role’s impact on my mental health. I couldn’t have hoped to continue it and still recover. I’ve had to apply for PIP (personal independence payments for those with disabilities) and UC (Universal Credit). Navigating these systems is far from straight-forward and has a huge mental toll on anyone who engages with them.
Disabled people are constantly forced to justify our disabilities. This is particularly apparent in the way that disability payments are set up – notoriously difficult to obtain, very invasive questioning, assessments and inappropriate comments and rejections for those most in need. Disabled people try to support one another through this in various ways – creating guides, coaching one another through the process, attending appointments, assisting with forms. We try to learn how the system works and know that it is never in our favour. It will always be something we have to come together to fight.
Understanding myself as being disabled has come more easily to me because of my other disabilities such as autism, dyscalculia and mood disorders/historic psychosis. However, appreciating just how intensely my eating disorder has disabled me has been difficult to contend with – the realisation that many things in my life I took for granted, such as my work, could come crashing down when I become unwell. This, of course, is a symptom of capitalism and the precarious nature of work. To be disabled within this system is to be constantly oppressed from all directions. If we want a fuller understanding of disability we must first admit that none of us who work for a living, who rely on waged labour, are ‘safe’ from the sharpest end of this oppression. We must admit that those living with chronic disabilities are not Other but our closest of comrades whom we must fight alongside. Capitalist society disables us, solidarity enables.
Viewing eating disorders as a disability has been useful for me in terms of reducing the blame on myself. It is easy to internalise the shame of being ‘unable to cope’, yet recognising external forces as disabling and understanding that there are many factors besides ‘choice’ that got me to where I am feels empowering and interrupts the intense self-criticism which comes alongside anorexia. I suspect this is the case for many other disabled people encountering these ideas. It runs directly counter to neo-liberal individualisation of the self and thus is key in disabled liberation. And, to be clear, disabled liberation is exactly what we all need.