Disability Independence Day: Re-framing The Word ‘Disabled’
Accepting a disability diagnosis is a difficult process. To put it simply, it’s difficult to accept that you’ve ‘lost’ an ability that you had, and that your life will have to change to accommodate who you’ve become. Beyond this, capitalist societies are able-focused and advocate the narrative that to be disabled is to be lacking something which others have: to be ‘able’ is superior.
This is not necessarily vocalised explicitly but is implicit in the way in which society functions and the language used when speaking of disability. According to Being disabled in Britain, a review by the Equality and Human Rights Commission in 2017, fewer than 17% of councils in England have set out housing plans which include strategies for disabled-friendly homes. This not accounting for the 13.9 million disabled people in the UK. Disabled access in public spaces is improving, but it is a slow and late-to-the-game process. Disabilities of all kinds are also consistently negatively or under- represented in the media. This is changing, as body positivity and diversity movements are permeating into advertising campaigns: Zebedee’s Everybody Beautiful campaign in 2017 included models which all lived with physical, mental or invisible disabilities. Further, the release of the Netflix series Atypical (2017), Special (2019) and the rising success of Rosie Collins, a comedian with cerebral palsy, have shifted disabled characters to the role of protagonist. Disabled characters now have their own storylines rather than being regularly used as the butt of the joke in able-centred shows (see: the IT Crowd, Little Britain, or most British comedies, unfortunately). According to Being disabled in Britain, for the members of government to be representative of the disabled population there would have to be 65 MPs with disabilities. Section 106 in the Equality Act 2010 requires political parties to publish diversity data about their candidates, and yet the Section remains to be enacted and the number of disabled MPs remains unknown. The treatment - or absence - of disabled people in popular culture, political culture, public spaces and colloquial conversation communicates to us all that disabled people are less valued than those deemed to be ‘fully able’. Even the word ‘dis-abled’, functions in the negative, describing a lack of something: ‘disadvantaged-ability’, ‘less able’. Contrarily, ‘able-bodied’ implies superiority. As a disabled person, it is very difficult to deconstruct these beliefs, labels and language whilst also finding independence, value, and love for yourself in a society which is at odds with who you are.
Just over a year ago and at the age of 22 I was diagnosed with Myalgic Encephalomyelitis, more commonly known as Chronic Fatigue Syndrome. It is a chronic, criminally under-researched illness which affects an estimated 17 million people globally. ME is a neurological condition which affects cognitive abilities and puts the body into a constant state of immune response. Symptoms include muscle/joint pain; dizziness; nausea; gastro-intestinal problems; sensory overstimulation; brain fog; persistent gland swelling; disrupted sleep and extreme fatigue. Due to the stigmatisation of the illness amongst the medical community and lack of research, there is currently no treatment or cure, and many people never recover. It felt like the sudden onset of this illness shattered my identity and independence. Grieving the capabilities and lifestyle I had before I got sick is an ongoing process: I’ve gone from never-being-home-24/7-study-work-cycle-party person to an alcohol-intolerant-possibly-leaving-the-house-3-times-a-week-at-a-push person. As the identity and lifestyle I had no longer complemented my body’s limits, I am now in a process of rediscovering myself and finding love for my body alongside my condition. It is heavy to carry the weight of personal grief whilst living in a dismissive and prejudiced society.
It took me a while to acknowledge that my illness made me disabled: I did not want to accept that my capabilities for independence had changed. My Mum has described my sister and I as ‘fiercely independent’ since we were children: it’s never been in my nature to have a facilitated existence. Since diagnosis, asking for help from friends and family has made me feel like a burden; I felt embarrassed that I couldn’t ‘care for myself properly’. From reading about others’ experiences of getting a disability diagnosis, I’ve learnt it’s common to feel this way. I kept pushing to live how I was living before; I was still doing all my own cleaning, cooking, shopping, and socialising. But doing so made me much more unwell and unhappy.
I still feel that embarrassment in the background, but I am starting to realise the benefit of asking for help and accepting it. At university, I have a Disabled Students Statement which allows me more time/consideration for my work. I have utilised the university’s financial support systems, as I can no longer work alongside my studies, which has provided great relief. My Study Needs Assessment gave me access to special computer programs which read documents aloud to help me with research for essays, easing my workload. I sit down at the table to prepare food for meals, conserving my energy for other things (I’m going to invest in a very tall chair for cooking and washing up soon which I am sincerely VERY excited about!). My housemates understand my condition, and if they offer to do extra washing up or carry things up the stairs so that I don’t have to, I don’t decline any more. I make one social excursion a week, otherwise people visit me at or near my house. I carefully plan around social events, giving myself days off to rest before and afterwards. I’ve taken action to help my friends understand my illness: being honest about it stopped me feeling like an alien. Their understanding gives me flexibility around plans if my energy levels aren’t up to it. I take rest breaks throughout the day: I live purely at my own pace. Having ME - having a disability - affects absolutely every single thing that I do. It has changed every aspect of my life. Every thought process, movement, action, and decision does not happen without considering my ME. My independence has changed - it is reduced - but it is still there. And nobody thinks any less of me because of it.
The main thing I have learnt from this process is that people with disabilities, of all kinds, are significantly more hardcore than most able-bodied people. Having a disability makes it more difficult to be independent: it takes more work, effort and energy to do the same day-to-day things as non-disabled people, and an extortionate amount of inner strength is required to recreate your identity in new circumstances. You have to justify the fact that you are disabled regularly: cue the judgemental glares when using disabled parking spaces, the verbal fights to prove that you need to use the accessible toilet, or the attempts to convince the doctor that you are ill to get the healthcare that you need (this is more common than you may realise). Disabled people overcome constant obstacles in work and other places where disabilities are not yet fully catered for. Living with constant pain fosters perseverance and resilience. A heightened sense of self-awareness is required to manage your condition, and the development of a powerful inner resolve to soothe anxieties about the circumstances. It gives you broader empathy and makes you more thoughtful and understanding. Disability gives you a new perspective: once you’ve made peace with the unfairness, the constant pain and life-changing trauma, dealing with every other life stress seems much easier.
There are two ways we can re-frame the word ‘disabled’ to have a different, more positive meaning. Firstly, the Social Model of Disability frames the term ‘disabled’ to mean ‘disabled by society’ rather than ‘disabled by a condition’: we are disabled from achieving our potential because of the obstacles our non-inclusive society presents - not because we are physically unable. This removes responsibility from the disabled person and instead exposes the faults in the constructs of society, therefore easing the personal load of the person. Secondly, I recently sought support in a Facebook CFS/ME group in which a lady responded proposing an alternative term to disabled, dif-able: differently able. When you become disabled, it’s a trade-off, not a loss. You don’t lose your abilities, they just change. I cannot work an 8-hour shift then go out with friends, but I can get a first on a uni essay even when I’ve got 24/7 flu symptoms and 2 hours of energy a day. I can write this article to spread awareness and empower my peers. Reframing the term ‘disabled’ in these ways has helped me accept my abilities much more readily. They make more sense and no longer feel reductive. I am not disadvantaged physically; I just have different abilities. I am not disabled: my society disables me.
Non-disabled people: recognise your disabled peers and tell them you see the work that they’re doing. Champion them for living their life like a pro despite every obstacle. Be an ally - don’t judge somebody for using accessible resources. Defend, help, and fight for disabled people when it’s needed: we can’t do all the work.
Disabled people, difabled people, whichever you prefer: keep going. You are bad-ass, you are marvellous, you are beautiful, you are golden. Happy Disability Independence Day: I am proud of you.
Resources:
Being Disabled in Britain, Equality Investigation: https://www.equalityhumanrights.com/sites/default/files/being-disabled-in-britain.pdf
Zebedee inclusive campaign 2017: https://shemightbe.co.uk/everybody-beautiful-campaign-zebedee/
ME: https://meassociation.org.uk/about-what-is-mecfs/
Social Model of Disability: https://www.youtube.com/watch?v=24KE__OCKMw&feature=youtu.be
My blog on ME for more information and content relating to the illness: https://wordpress.com/pages/anniestuffandthings.wordpress.com
Written by Annabelle Lilly
I’m Annabelle, a final year Film & English Literature student at the University of Bristol. I’m a mental health activist and due to my recent diagnosis of ME I am rooted in working in disability activism: I hope to be a voice for people who don’t always feel they have one. I write about mental health, politics, and personal experiences, with a sprinkling of poetry!