Two of our writers reflect on their experiences of hidden impairments or conditions and on the impact of becoming visibly disabled. Rebecca Shewell on how life changed when she suddenly became visibly disabled.
I have lived with my condition, Congenital Dislocation of the Hip, since I was born and prior to recent surgery to reconstruct my hip, I faced lengthy spells dealing with pain and immobility. Of course, I knew this was an issue, those close to me knew this was an issue, but nobody else did. When I went out I didn’t have a chair or walking aids and I didn’t hold up a big sign saying: “I have a condition”, despite the pain. Nobody could see, nobody could tell and in all reality, nobody did anything because my disability wasn’t visible.
I remember thinking: “What if my condition was visible…How would it change me or how others looked at me?” Maybe, if people could see my condition, they would understand more. I remember at work, I was given a lift key to help support my decreasing mobility, about a year before surgery. Not everybody was allowed one and I would find myself faced with comments from other staff: “How did you get a key? I’ve worked here for ten years and haven’t got one…that’s not fair”; “Gosh, you are so lazy, why don’t you take the stairs?” Each time, I had to explain myself to their and, of course, my embarrassment.
Equally, when I would go out, nobody gave up their seat for me or offered help with the day-to-day things I found difficult. Why would they? They couldn’t see that anything was wrong. In essence, going out was rendered more exhausting, painful and difficult, because I didn’t get treated differently.
But now that my condition is visible after the surgery and I am using walking aids, things have changed dramatically. People hold doors; ask me if I need help; carry things or give up their seat for me in an instant. I do find myself appreciating the support and kindness from those same strangers who would never have thought about offering a helping hand when I did not have this visible sign of a problem.
It pains me then to think that those who may need it are left without support and sometimes even judged. For example, the assumption may be made that the person sat on the priority seat on the train, who has an invisible condition, is being lazy or malicious by not leaving it vacant for somebody who visibly does need it. And where does this leave those with mental health conditions? Would anybody know to ask them how they were or if they needed help?
Yet, living with a visible condition is not easy. For while now that I use crutches, I am frequently offered the support and understanding from others that I was so often denied before, there is a darker side to this visibility, which can be equally challenging.
I won’t ever forget my first experience on leaving the strange world of hospital. Calling in at the services on my long journey home, I remember the stares; the people scattering out of the way and the comments from complete strangers: “Are you okay there?”; “Aw, what did you do to yourself?”, as I made my way around. I was not used to this kind of attention and it only increased once I needed to use a wheelchair. I was overwhelmed. Yes, I was using crutches. Yes, I was using a wheelchair, but I wasn’t any different and I could still do the things that I needed to do, just in a different way. I didn’t particularly want to be ogled at like a prize turkey at Christmas.
Although I don’t doubt that the majority of these reactions are meant in goodwill, there is a delicate balance between being sympathetic and patronising. Recently, after I enquired about going back to a choir that I used to be a part of, now that I am using crutches, I received an email stating: “with floor-work being so soon, [the director] thinks it best that you don’t sing at this stage”. I didn’t realise that having crutches meant I couldn’t sing.
Indeed, over the past six weeks, there have been times where I have been rendered incapable or denied the things that I want to do because my condition is visible. I can’t imagine what it must be like for those living with visible conditions their whole lives. I would get tired of random people assuming that they know what’s best for me, before they even know my name.