Why focus on disability and eating disorders, what's the big deal? Don't you just want to be treated in the same way as everyone else? These are all valid questions which may well be crossing your mind right now. I was extremely fortunate to be treated by a therapist who had prior experience of treating a patient with a disability, however I am aware that this is rare and that is not to say this removed all the barriers to my treatment. Professionals often speak of co-morbidity with eating disorders, OCD, depression and BPD are well documented co-occurring conditions, but physical and sensory impairments do not make people any less likely to be affected by an eating disorder. In fact the conditions of struggle, isolation and vulnerability create the perfect environment in which an eating disorder can easily thrive. It is widely recognised among professionals in the field of mental health that eating disorders do not discriminate, my question is, can the same be said for the way we treat them? from personal experience, the process of being weighed, documenting food diaries and even feeding myself all came with additional challenges than those already presented by my eating disorder.
I first developed an eating disorder sometime around the Autumn of 2009, I can't put my finger on the day that dieting and so-called 'healthy eating' merged into obsessive calorie counting and ritualised disordered behaviours became the focus of my existence. Naturally, following the psychological and emotional distress which came with the sudden and tragic death of my older brother who had lost his life to addiction aged just 24, I began to slowly seek comfort in the one element of my life I felt I had control over, that being my intake of food.
Being born with Cerebral Palsy, I have never been a stranger to challenge, my innate response to adversity and those who have doubted my ability has always been to retort with defiance, "just watch me prove you wrong!". In some respects, things that had previously not mattered greatly to me became ultimate goals once they were doubted. This stubborn determination however provided my eating disorder with the perfect conditions to develop. I can give no clearer example than that of being told my weight was marginally outside the BMI criteria for Anorexia, and I was initially diagnosed with EDNOS. Like many other sufferers I did not accept this news with the same enthusiasm with which it was delivered, and set about working towards anorexia as some sort of ultimate status to prove that my restriction and crippling hunger pains were worth something. To me anorexia was a title to be earned, no-one could then say or perceive that I was going through a 'phase' or that this was a 'diet gone wrong' but instead I remained committed to a 'cause,' for what? I am not entirely sure, I needed my symptoms to be visible and apparent, yet paradoxically I wanted to blend in. I wanted something other than my disability to be a defining feature. When doing homework for my therapist explaining why I valued my eating disorder I wrote something along the lines of it detracts away from my disability, although I'd prefer not to repeat my exact wording.
The media is often blamed in part for sustaining eating disorders, by fuelling unrealistic idealised aspirations for how our bodies should look. However, for all the portrayals of body image that are presented to us, I challenge you to find a depiction of someone with a disability which is trendy, let alone sexually attractive. Even Gok Wan's seriesHow To Look Good Naked, categorised disabled people in an exclusive show series entitled How To Look Good Naked with a Difference. Since we are aware that each human being is essentially unique, need we further single out physical imitations as defining features? Are we not allowed to perceive people with disabilities as sexually attractive? Don't get me wrong, there are some fantastic campaigns that exist which pay tribute to diversity and individual identity Dove and Body Gossip have begun to promote body acceptance, nonetheless disability is a territory with which remains either invisible, or a concept which elicits pity for most people however well meaning they may be. The discomfort which still exists around depictions of the disabled body, remains to a degree that can no longer be said of other minority groups. Interestingly, this awkwardness is perhaps sustained by the subconscious acknowledgement that disability can strike any one of us during our lives. The visual absence of physical disability within the fashion and cosmetic industry only serves to strengthen society's perceptions that disability is not, and nor can it be thought of aesthetically pleasing. In her research Laura Minges highlights some interesting points in connection with disability and eating disorders, many of which correspond with my own experiences. Not only does she explain that the prevalence of eating disorders in amongst people with people with disabilities, but she reiterates the desire to "punish the body for failing to do what others can do with ease".
Whilst I recognise that eating disorders are complex illnesses with deep-seated psychological roots, to ignore the impact of disability and physical effects of eating disorders would not only be futile but it would prevent a holistic approach to treatment. My experience of 'being' has undoubtedly been altered by my need to be assisted with every aspect of daily living. From as far as I can remember, long before any trace of eating disordered behaviour featured in my life I had a heightened awareness of my body, its functions, limitations and the space it occupies. The necessity of manual handling and personal care is frequently invites unwanted or unnecessary comments and commentaries about your body, it's size weight shape, and any supposedly abnormal features you may or may not possess I felt as though perhaps if I remodelled my body and treated it as the commodity which others treated it to be (carers and medical professionals alike) then I would not only feel more confident and attractive, but also I would be easier to care for.
If we are to think of the body as a projection of our identity, then I've rebelled with it as much as possible, I've dyed my hair every colour under the sun, tattooed and pierced my flesh and developed what could possibly be classed as an addiction to clothes shopping and cosmetics which remains with me to this day. I have no doubt that my preoccupation with manipulating my appearance is more symbolic than growing up as a female in the Western World. Ever since I was a child I have needed assistance to dress myself, when I was younger independence was prioritised over appearance and quality of life, as such I was restricted to a wardrobe of oversized clothes made of stretchy material, these garments were made even less fashionable and attractive by the occasional addition of elastic or Velcro as suggested by a well meaning OT whose over enthusiasm for enabling me had conflicted with my desire to have some sense of style or personal identity. Needless to say as I grew older and employed my own Personal Assistants I experimented greatly with all manner of outfits, some of which, would have posed a challenge to even the most flexible individual, let alone a wheelchair user who at the time was unable to weight bare whose body had become somewhat "chair shaped" and riddled with spasticity. In this sense I could see immediate rewards from restrictive eating. Not only did my plummeting weight mean that I could slip into skinny jeans with ease, but I was lighter and thus able to weight-bear. This put me in a position to engage with my body in a way I had not been able to do for many years as an overweight teenager. For once I felt my new sylphlike body was working for me, instead of against me.
To create a clearer picture of the relationship between eating disorders and disability I would like to explain how I disability has impacted on my own experience of food, feeding and eating. Like most individuals who develop eating disorders I have always loved my food and experimenting with flavour combinations. My dad fondly recalls me at the age of 2 picking up a spring onion off his plate and biting the end off and to his surprise grinning as I felt my taste-buds come alive.
As with many young children confectionery was used to bribe or reward my compliance, but also as a means to compensate for the guilt or sorrow others felt for my inability, or the suffering imposed by my condition. I have clear memories of my father placing Smarties on the slats of my wooden exercise plinth to entice me through my daily stretching routines, For the majority of people with disabilities food and eating is considered a pleasure to be indulged in on a level playing field without modification or restriction.
The experience of feeding and eating is undoubtedly influenced and reworked to accommodate disability needs. I remember the easy-grip cutlery, two-handled mugs, plate rims and bibs that I have only ditched as an adult for the sake of my own dignity and the need to integrate into my social surroundings. That's the discourse of eating far from an exclusive act of survival, instead it is an ritual that mirrors our innate drive for community and sharing, a social activity that demands togetherness in the satisfaction not only of the need for sustenance, but the enjoyment of entertaining our taste-buds and exploring textures. Imagine then the sheer embarrassment accompanied by awkwardly wedging your wheelchair under a table having already disturbed several fellow diners only to spasm and spill the contents of your soup bowl all over yourself. I remain scarred by one particular incident when I was out with my family having our ritual celebratory Indian meal (I don't remember the occasion) what I won't forget is the audible comment from another dinner to the effect of "look at the mess she's making!" The humiliation of being fed, dribbling and or suffering digestive and swallowing problems are common complications for those with physical disabilities and they all inherently impact on the pursuit of eating..
Feeding myself is not a skill that has ever come easily to me, lacking fine motor skills can inadvertently turn any meal into a food fight. An unsuspecting neighbour at your table may have the privilege of taste-testing your yoghurt. An involuntary flick of the wrist might allow them to find out what it tastes like when desert lands in their cup of tea. When I first learned to feed myself I did so in front of the mirror - a way of combating the discrepancies in hand-eye coordination. If you've ever watched yourself eating in a mirror you become aware of the facial expressions involved in eating the detection of delight or disgust as your taste-buds react to the stimuli of food and drink - the activities of biting, chewing and swallowing. The tasks which come innately and instinctively to others, for me required effort, concentration and fine tuning. As such adjustments were made, my mother might warn me off so called 'messy' foods unless appropriate clothes protection were in place. Table-manners were indeed another hurdle, learning to chew with my mouth closed and keep my elbows off the table (to the disgust of some) took me many years for to perfect.
Being fed, is sometimes a neater and more eloquent solution which as I got older became my preferred method of eating in public, but that too is not without logistical problems. It is not until you are cared for by another person that you realise everyone has idiosyncrasies and personal habits that set us apart from one another. As is the tagline for the Cadburys Cream Egg "How do you eat yours?" The same applies to our eating preferences, you observe crimes against your own taste buds, not only are you not able to prepare your own food, but you also lose control of the way in which it is delivered to your mouth. Speed, temperature, texture and flavour combinations are all key in enjoying our food so when these options are taken away eating can become a daily chore necessary only for survival. When food needs to be blended for ease of swallowing, I haven't always been fortunate enough to have someone separate the elements of a meal. Imagine how much of a burden you feel when someone hurriedly spoons in food in a robotic manner while standing up, as you are sat down beside them. Food that has been mashed or blended also loses all aesthetic appeal and since it is said that you 'eat with your eyes' this can prove most unappetising. All in all the act of eating can become passive and unengaging, resulting in further loss of control. Interestingly enough being fed was something I preferred in recovery, I wasn't putting food in my mouth someone else was doing it for me, therefore I didn't have to make that decision, I guess it can be both a blessing and a curse in this respect.
Throughout my recovery journey, which I believe in some respects continues on a daily basis; I have identified what I might call the 'able bodied treatment model'. By this I mean that the thinking behind basic structure and routines of treatment is by and large accommodating towards the able-bodied majority who access treatment, if you will pardon the pun, there are inherent weakness in this 'one size fits all' approach.
Firstly, take into account the initial form filling process of eating disorder diagnostic tests, if like me a person is unable to hand write or has visual difficulties they may need adjustments to be made to this. If the patient is offered assistance as I was it may be useful to consider the impact of this on the reporting of behaviours which an eating disorder sufferer will consider shameful such as binging, purging, secret eating or laxative abuse. In these situations it may be useful to investigate a variety of accessible formats to offer, such as electronic questionnaires, large print or Braille if required.
Secondly, is the 'weigh in' conundrum, as traumatic as weigh ins are for most patients, this anxiety can potentially be eased by the presence of a therapist or a professional with understanding and empathy for the distress caused by the weigh-in process. Unfortunately, most treatment facilities do not possess sitting or a platform scales designed to accommodate those without the ability to independently weight bear. consequently my own experience of weigh-ins was made even more traumatic by the need for me to be weighed at my local wheelchair clinic in the presence of whomever was on duty, needless to say these varied staff members were not doctors, and nor did they have an understanding of my back-story.
The wheelchair clinic staff were experts in their own field, but rarely possessed a full understanding of eating disorders, if any at all, which presented its own complications. Whilst some had obviously drawn their own conclusions as to why I was there and were dutifully sensitive; as I began to make progress in treatment I was occasionally subjected to inappropriate comments or jokes as to the purpose of this routine. Having said that, routine is perhaps not the right word. The complexity of this arrangement needing to coincide with staff availability and fit around my working commitments. consequently appointments to be weighed were infrequent (with the exception of periods when there was obvious cause for concern). As a result there was sometimes up to a month's interval between weigh-ins causing inevitable disconcerting fluctuations and therefore exacerbating disordered behaviours. On reflection I feel this process could have been more effectively managed if I had been accompanied by a relevant support worker or if negotiations could have been made for me to be weighed prior to a therapy appointment. Whilst logistical problems may be present in accommodating special needs, what I must emphasise is the importance of patients receiving comparable observation to that of able-bodied patients as stipulated by best practice.
Professionals must also be mindful of the different ways disability may be used to excuse or disguise behaviours. It is widely understood that eating disorders thrive on secrecy and deceit and sufferers with disabilities suffer the same illness, but physical limitations may impact on the kinds of behaviours exhibited, but it is also important to consider potential ways disability can serve to sustain and conceal an eating disorder. You may be forgiven for assuming that wheelchair users have sedentary lifestyle imposed by their disability, but from my experience this leads to eating disordered thoughts which focus on how 'unfit' you are leading to increased internal taunting and self-criticism. On a personal level the 'anorexic voice' within me was not only preoccupied with a perception of 'fatness' but also of laziness, inadequacy and weakness.
My physical incompetency was an obstacle to my illness, but one I became increasingly determined to overcome. For many who care for a person with an eating disorder excessive exercise regimes set off alarm bells and are discouraged. At first I developed a healthy interest in exercise which as with my initial dieting received so much positive reinforcement that it quickly became an obsession; whereby I began to seek back-up swimming assistants because if heaven forbid my carers could or would not go, or I went for less than a 2 hour session my head would be sent into a frenzy. I set myself rigid targets and if for any reason I could not reach them, punishment feelings of failure and self-loathing ensued. Even when I accepted recovery was 'best for me' I found it most disconcerting to know that because of the different ways my body worked and didn't work, my meal plan and caloric requirements could not be calculated by an exact science, but rather an 'educated guess.' I made up every excuse under the sun to justify the need for a minimal meal plan and found reasons including swallowing difficulties (which do occasionally affect me) could be used to further justify restriction. I discovered fairly early on in my illness that I could 'self induce' spasms, by inflicting pain on myself or concentrating so much of my effort into my muscles that they could only respond with rigidity and contortion. The flipside of doing this is, whilst I had some control as to when and how a spasm began, stopping it was an altogether different ball-game and when they would stop would be anyone's guess. I suppose you could liken it to tying someone to a treadmill and waiting to see how long they would last until inevitably something has to give.
For me the salient theme that underpins eating disorders in people with disabilities is ownership of one's body and its relationship with public space. I can only describe venturing out and about as a wheelchair user, as akin to being a celebrity, but without the perks. By this I mean strangers do not always regard the rules and norms you might expect to be adhered to in Western society. It is not an uncommon occurrence for me to be patted or stroked, congratulated on my courage to leave the house by an individual who has little or no regard for my personal space. I think this is not only an issue to be addressed through disability awareness, but also in body acceptance and body image topics within treatment. Therapists should instill greater body confidence, by presenting that people with disabilities can and should think of themselves as attractive in their own right. I say this with conviction because for me this is something I want so desperately to believe for myself. It is perhaps for me the final hurdle in conquering eating disordered thoughts and behaviours which continue haunt me at times of vulnerability. Body positive campaigns have been hugely successful in challenging beauty myths and perhaps the next step forward would be to integrate those with disabilities into such campaigns and cast disability in a new light.
By Sarah Jones Nash
Recovery is possible - eating disorders can be beaten! For information on eating disorders please visit the Beat website Visit the FEAST and around the dinner table forums for discussion and support.
