We met Lisa at the first Sensational Museum retreat in January in Belfast. She helped us understand why we always need to provide a flexible and varied range of different ways to participate. Our Project Lead, Hannah, and Lisa had an in-depth conversation about identity, so we asked Lisa to write about it.
Identity’s a funny thing. Some identities are forced upon us. Some we claim for ourselves, and others we attain. The words we use to describe ourselves, internally and externally, change as we grow and age. They may even change from day to day.
Being unable to hear poses specific challenges with identity. ‘Deaf’ is a cultural term. It implies a Deaf education and a preference for BSL. By contrast, ‘Hard of hearing’ (HOH) and ‘hearing loss’ simply mean the clinical inability to hear.
I don’t use ‘hearing loss’ or ‘HOH’. I was born deaf, so I don’t have ‘hearing loss’. As I’m unable to hear speech— including my own—without hearing aids, HOH is inaccurate, and could be counter-productive. It implies I just need extra volume, which is untrue. Even with hearing aids I can’t understand speech without lip-reading, follow conversation in a group, watch TV without subtitles, or listen to the radio.
Growing up, I described myself as ‘partially hearing’ because I attended a Partially Hearing Unit (PHU) at primary school, and I had no sense of difference. This changed when I entered mainstream at 11, and that’s when I became deaf. I was never embarrassed or ashamed of being deaf, but it was a negative. Transferring to the Mary Hare School for the Deaf at 15 changed that. My years there made me proud to own my deafness and be Deaf, although I prefer the ‘small d’: deaf.
University was a culture shock—a crash landing back into the hearing world. As I progressed through academia, I moved away from D/deaf, and for the first (and only) time in my life I downplayed my deafness. An invitation from a Deaf friend to a primarily Deaf party was revelatory. I realised I was cutting off my nose to spite my face, and making my life more difficult in consequence.
Today my identity fluctuates between Deaf and deaf. When I’m with friends with acquired hearing loss, or who are HOH, I become more Deaf; I’m not a hearing person whose ears don’t work. On the other hand, my first language is English, I have good speech, and my family and some friends are hearing. This means that in Deaf settings I become deaf/‘HOH’ by default. In effect, I’m stuck in the middle.
My D/deaf identity has undergone another change in the past decade. Multiple retinal detachments and a haemorrhage have left me with compromised vision. I’m increasingly using accommodations intended for partially blind people—but this isn’t straightforward.
When it comes to disability accommodations there’s a general assumption that you’re one thing. Or not and. The combination of deafness and compromised vision means that I’m often faced with conflicting ‘support’ solutions that are ineffective. This isn’t unusual. Elderly people frequently have combinations of sensory and mobility needs. Approaches to disability need to be flexible and nuanced; to accept that one model can’t possibly suit everyone. Every disabled experience is unique, just as every disabled person is unique.