Coming Out as Disabled
Victoria Bartle
16th October 2021
When I first started to notice that my health conditions were having an impact on my daily life I didn’t really think about becoming disabled. I didn’t know anyone who would refer to themselves as disabled and, looking back, I think that I saw my health problems as a weakness. I’d been brought up to believe that if you can get out of bed then you're well enough to go to school/work and that ‘not giving in’ to poor health was better than ‘failure’.
My mum was self employed so even after operations she was always pushing to get back to work as quickly as possible as she didn’t get paid if she wasn’t at work and the social and financial pressures of society have meant that, when we get ill we just carry on. It’s that age old ‘stiff upper lip’. ‘Keep Calm and Carry On’. Unfortunately this isn’t the best course of action in the case of lots of chronic conditions, or even in many short-term, acute illnesses. I hope that the working from home options and the benefits of more flexible support that we’ve seen in 2020 and 2021 can help people to be able to do more to look after themselves when they’re unwell. Finances, societal norms and personal commitments lead us all to potentially damage our own health in the pursuit of maintaining our self-image, but this can often be to our detriment. Could accepting (or actively pursuing) the label of ‘disabled’ actually be a positive step?
Labels can be difficult to come to terms with. They can be positive or negative.
I’ve often heard people say “I don’t want to be labelled”, but we all are to some degree. Our brains instinctively classify others into groups and we link people with similar characteristics together and make judgements and assumptions based on those groups. So how can it be helpful to put yourself into a box before others do it for you? Can defining yourself be a positive thing rather than a negative when there’s so much stigma attached to needing help?
People with disabilities make up between 20-25% of the world’s population, but I would bet money that only a small percentage of these people would actually define themselves as having a disability. There’s so little understanding of the legal definition of the word and I believe that it stops people from accessing help.
Am I disabled?
The standard definition of disability here in the UK is: “If you have a physical or mental impairment that has a ‘substantial’ and ‘long term’ negative affect on your ability to do normal daily activities” and, in addition, The Equality Act has a 60 page document explaining what types of impairments or additional needs can be defined as disability.
In order to get protection under the law you might have to prove yourself disabled, which is nowhere near as simple as determining your race, gender, religion or any of the other protected characteristics of the Equality Act. You can become disabled, or become abled again after a disability. On official forms the question generally asks “Do you consider yourself to have a disability” putting the emphasis on the individual to decide if they do or do not ‘count’ as disabled.
[2] https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/570382/Equality_Act_2010-disability_definition.pdf
I see this as a positive thing. I am proudly disabled. I am vocally disabled. I have invisible and sometimes visible impairments and am confident in asking for specific things that will help me to manage my pain and fatigue levels. If I am shown to a table in a restaurant with chairs that I know will cause me lots of pain I’ll happily ask to sit somewhere else. I’ll use disabled parking spaces and toilets whether I have a walking aid with me or not and, generally, don’t ‘perform’ my pain for people anymore, though I sometimes find myself having to actively avoid doing this. I don’t need to explain my health conditions to everyone that I meet and sometimes struggle with the judgement of strangers, as they take it in their own hands to become the disabled parking or toilet police. What I’m trying to do, when I do choose to explain my needs, is to educate people that disabilities come in all shapes and sizes. The variety is massive; just watch the Paralympics and see how many categories there are for each sport!
But being disabled is still perceived as negative.. Disabled people are very often looked at with pity and it is often assumed that our lives will be dreadful and sad. This isn’t the case at all.
We’re just like everyone else
People with disabilities can still do amazing things and we also do really normal things. We get up, go to work, parent our kids, support our friends and family, go out and get drunk, make good choices and we make bad choices. We do everything that everyone else does, but we also have something else to contend with.
Disability isn’t the sum total of me as a person, but it has become a part of me, and it affects parts of my life that I never considered that ill health might. Although I understand why some people don’t want to define themselves as disabled, It also makes me sad. I think that the more of us there are then the more normalised it will become to talk about our struggles and to ask for help.
If everyone with a long-term health condition ‘came out’ as disabled then we would be the largest minority group in the world. Representation wouldn’t be such a hot topic as it is now and we could actually make some impactful changes to the systemic ableism that defines our society. People less confident than myself could ask for a different seat or advocate for themselves if their condition or symptoms get noticed in public and making reasonable adjustments could be something that employers do as part of a person’s induction into a new job, and inbuilt into yearly reviews.
I’d love to live in a world where people weren’t stigmatised by disability .Especially as it’s likely that we all know someone who has one. More members in our ‘club’ would open up the conversation and get people talking about what they need and figuring out ways to make things work around disabilities instead of us having to fit in and conform to societal norms.
The pandemic has seen a big rise in people’s awareness of and the use of sunflower lanyards, stickers, bracelets and cards to indicate that you have an invisible disability and may be exempt from wearing a mask, or require extra assistance in some way. I’m really pleased about this and I hope that it gives some people the confidence to accept the term of disabled as well as giving them a bit more confidence in being able to ask for the assistance that they need or explain about their conditions to others.
Why should you declare yourself to be disabled?
I believe that learning how to effectively advocate for yourself when you have a disability is vital. It gives you confidence in your diagnosis or symptoms, enables you to explain them to the relevant people and ensure that you aren’t forced into situations which could make your symptoms worse or you have to ‘push through’ till you can get to a safe environment. Discrimination or poor accommodations don’t usually happen out of malice or from a people being uncaring, but from a lack of awareness. It’s difficult to understand the mechanics of disability unless you have experienced it… and every application of disability support will need to be unique, which complicated the issue.
I was diagnosed with ME at 15 and as a precocious teenager I was able to self-advocate with teachers and other adults telling them when I couldn’t do something anymore as I was too fatigued. As as a disabled adult who was a disabled child, I’d say that knowledge and confidence in yourself, that your disability is simply an aspect of who you are, can help. Knowing that disability is something that you need to be able to explain to others was important for me to learn. Learning how to frame things so that others could understand helped to build my identity. And being proud of the entirety of who I am and not having one aspect hidden has helped to build confidence and self-acceptance.
But still, I know lots of people with long term health conditions who meet the criteria of the definition of having a disability, but who choose not to use the label for themselves. For some it’s because of preconceived ableist sensibilities and the fear of what other people would think of them. They don’t think that disabled describes who they are, or that their symptoms or conditions aren’t ‘bad enough’ to be classified as a disability. Some believe that, because no-one has said that they are disabled, like a doctor, that it isn’t true.
Who decides?
Should someone be giving out the term disabled to people, either at birth or alongside a diagnosis? Would it be more acceptable to us as individuals with health conditions and to society if Doctors had the final say in whether you have a disability or not?
I like the thought that someone should tell you. I had to figure it out for myself. But it’s not that clear cut. Whilst my diagnosis of ME happened at 15, I didn’t become disabled ‘enough’ to use the term until I was in my 30s and having a difficult time at work, with an employer who wouldn’t support my periods of ill health, when I needed a little more help. What happens when people’s diagnosis means they’re just muddling through. When do they know they’re struggling ‘enough’ to qualify?
I’ve told quite a few people that they do actually meet the criteria, even if they don’t think that they do, but who am I to determine if someone should state that they are disabled?
I wish that more people would use the term in order to increase awareness and understanding that we are not an anomaly or an inspirational story. We are all just people trying to get on with our lives and the more disabled people there are becoming visible then the better that I think life will be for everyone. Making things more accessible helps everyone, not just those of us with disabilities, and doesn’t everyone just want to live in an equitable society?
I’ve now got a sunflower bracelet and have bought them for friends and family who have disabilities. Some of whom would say that they are disabled and some of whom wouldn’t use the term to describe themselves. I hope that by wearing it they become more confident and positive about having health conditions and that ‘fessing up’ to being disabled is seen as a positive thing!
My life is certainly better since I learned to own it and ask for the help that I need.