I think it’s fair to say that we live in an ocular-centric society, people are obsessed with sight, and we equate that with knowledge, just think of terms like “I see” to mean “I understand”.
Equating sight with knowledge is dangerous, especially for those who feel an entitlement to “know”. “Why is your arm like that? Were you born like that? How do you tie your shoe-laces with just one hand?” These are all questions I have been asked on countless occasions due to one of my disabilities, and they are provoked by its visibility. You see, knowledge and sight work in tandem. I reply, “I was born like this, yes I can tie my shoe-laces, I’m sure if you were born like this then you would figure it out too… it’s a case of adapting to circumstance.” My reply would change of course, with age, depending on the people who asked, and how they asked. My mum always told me they were just curious, but I of course wished they’d keep that curiosity to themselves.
When it comes to a disability, visibility of difference is a two-sided coin, it can be the focus of prejudice and the focus of acknowledgement and therefore understanding. Although I found it at best annoying and at worst painful to be called out on my visible difference from others, it also meant that people more instinctively knew how and when I needed help. I would be somewhat ‘visibly’ struggling and they would see this and offer to help.
In a somewhat bizarre turn of events, at the ripe old age of 20, I obtained another disability, this time an invisible one, a brain injury. This disability effected all aspects of my life; for the worse I might add! But interestingly these difficulties I was now facing were made much harder because they were so invisible. I had to “come out”, multiple times, in moments of need, to the same people who would “forget” my new circumstance. I would have to quite traumatically explain in great depth the different aspects of my new life to people just so they could understand something they couldn’t see, or indeed to convince them it was a serious enough issue to make changes to the environment and ways I was working within.
A teacher once told me that she took my brain injury more seriously in part because my physical disability of my ‘little arm’ was so obvious. I am sure she meant no harm by it, but it struck a chord with me. That my physical disability of my arm somehow legitimised my invisible brain injury.
By Nadine Lesniarek-Hamid, Disabled Leaders Network member and Snowdon Scholar – studying Masters in Architecture at the Royal College of Art