Disability badges: the complexity of making invisible illness visible

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To pin the shiny blue ‘Please offer me a seat badge’ to my coat or not?

This is a question that I ask myself almost every time I travel on public transport in London. It’s part of the morning routine alongside wondering if an umbrella would be a good idea, just in case, and checking several times to make sure I have my house keys. A few years ago an initiative was set up so that people with a disability can apply for a badge or card that states ‘Please offer me a seat’. Alongside this, certain seats on trains and station platforms became designated ‘priority seats’ with a notice stating that a person should give up one of these seats if someone with a disability requires it. Hearteningly, the notice includes the statement that ‘some disabilities may not be immediately obvious’ — a clear victory for those of us with so-called ‘invisible illnesses’.

A year or so ago I applied for the ‘Please offer me a seat’ badge. It surprised me that I found it to be a slightly emotional experience. It brought up a lot of questions — was I disabled enough to warrant a badge? Would people stare at me if I wore it? Would I get the often-voiced accusation ‘but you don’t look sick’ if I asked for a seat? After receiving my badge it sat in its envelope in a cupboard drawer for a few months. Then I put it my bag, and then my wallet. It was as though I was slowly letting it make its way to the lapel of my coat and into my life.

So why didn’t I just use the badge right away?

My main reason for my hesitation has to do with the simple, but emotionally complex, act of making myself visible as a person with chronic invisible illness. I requested the badge as I have issues with standing for any prolonged period of time due to postural tachycardia and painful joints due to hypermobility syndrome. These conditions are invisible. I look no different to the other slightly harassed commuters on the train next to me, although if you look closely enough the fatigue will be obvious as no amount of make-up can conceal the dark circles under my eyes and I will definitely be furtively looking around for a free seat any time we stop at a station. But I don’t look sick. I am invisible. I blend in with the crowd. And, in all honesty, I like that. I want people to think I am just like them, even though I am aware that I should be brave enough to ‘own’ my health, body and life just the way it is. That perhaps I am doing a dis-service to others with disability by wanting to keep it to myself and not be proud of all that I am. Maybe that bravery and pride will come with time, but for now I want to be perceived of as just another commuter on my way to work to stare at a computer screen for the best part of the day.

Wearing a badge disrupts that illusion. It makes me visible. The shiny blue circle on my coat means that I stand out from the crowd and no longer blend into the background. There’s clearly something different about me. And that difference, and the visibility of my difference, means that something deeply personal, my health, is no longer just mine, but can be seen by others. What was private now becomes public. All of sudden the strangers around me who I know nothing about, know something about me. My disability, or questions as to what my disability could be, is on show for them to acknowledge and perhaps mull over.

There is a long history of people with disabilities having their health issues scrutinised, and its ‘reality’ called into question. While one in five persons in the UK is disabled, and 19% of the working-age population is disabled (Department for Work and Pensions, 2018), a House of Commons Report described how disabled persons regularly report being called ‘benefits cheats’ and ‘scroungers’, and those who post online experience a ‘culture of fear’ due to a ‘real risk of being falsely accused of faking their disability to gain social security benefits’ (2018: p18).[1] Against the backdrop of such abuse, the question of wearing a disability badge and making my invisible illness visible to all is disconcerting to say the least. I sit there wondering what others think. Do they believe that I am disabled? Or that I am faking? To say it makes me anxious is an under-statement, and it is yet another reminder that I am different to the (wrongful) social norms that surround assumptions of a ‘normal’ person. I keep my head down when I wear the badge, pretending to be engrossed in my phone. Not looking up to meet the eyes of any, in my mind, accusatory looks or stares. It is always a relief to get off the train and unclasp the badge as soon as I can.

This may come across as a criticism of the initiative to supply the badges. Believe me, it isn’t. In fact it is quite the opposite. What it is, instead, is a criticism of the societal culture that makes invisible illness (and visible disability or illness) a taboo, and often makes the people who suffer conditions that fall into this category feel self-conscious of their need to ask for accommodations for their disabilities. We shouldn’t need to ‘prove’ our health status, and yet this is necessary in our society today. Nor should we feel embarrassed by our health, yet stigma and taboo often means that we are. And we definitely shouldn’t fear abuse or accusations for something as simple as needing a seat on the train or bus. Hopefully, initiatives such as the ‘Please offer me a seat badge’ will be expanded and new initiatives to assist all people with disabilities will be put into place. It is only with such changes that social norms will begin to shift, and people with invisible illnesses won’t need to worry about making them visible in order to receive assistance.

[1] House of Commons Petitions Committee. ‘Online abuse and the experience of disabled people’. First Report of Session 2017–2019.

Chronic illness blogger at throughthefibrofog.com and on Instagram @through.the.fibro.fog

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