I inhabit a world of looking twice. Every step is double-checked, to make sure that I am not going to spontaneously find myself on the floor. That said, I still do from time to time. Living with a disability that isn't immediately visible is similar to membership of an exclusive club: instead of a secret handshake, there is a chorus of “me too!” responding to the most mundane things.
Most of the time, I choose not to tell people that I have Cerebral Palsy, because I find it difficult to find one clear definition for it: what CP means to me could be quite different from what it means to someone else with the same condition. Every visit to a new place is preceded by a phone call, or an eagle-eyed perusal of the website. It is always a surprise to find out that many places do not offer information regarding access.
People are often surprised when I say that I walk, but that I still have problems with stairs. I was recently informed that the venue where I wanted to access a workshop had 13 steps – 'but you will be fine'. I might have been, but they were slatted. Those are the situations where I tend to need more support, but people around me don't know how to react.
More than anything, that is what I would like to change. The most important thing to remember when communicating with someone who has a disability is this: they are still a human being. Your reaction has the potential to shape their entire day, and their sense of how they are perceived will be affected for some time to come.
We are taught not to judge books by their covers, or people by first impressions. Nonetheless, we often seem to do just that. Conversations about disability present their own challenges, of which few in the able world are aware.
In conversation with Laura Perna, of the Coalition for Texans with Disabilities, she informed me that, in her opinion, the three biggest issues facing young people with disabilities today are access to healthcare and services, education, and employment.
Whilst transparency is less of an issue when it comes to the healthcare sector, it features highly within the fields of education and employment. Although there is no obligation to disclose a disability, feeling as though one has to be upfront about his or her circumstances can lead to great difficulty in feeling comfortable with these particular dimensions of social life.
For some, disability is a part of identity, certainly. In some cases, we would rather open up a dialogue than be put in a position where we have to explain what is needed every time. Disability itself is a spectrum, with individuals at various points and levels of ability. Overcoming discomfort with the topic helps those who live the experience every day to overcome theirs.
Words: Casey Bottono
Illustration: Sketches of figures by George Jones, courtesy of Tate collection
Copy edited by: Elena Stanciu