Do you know your deaf from your Deaf?

If someone wrote to you saying “does your Extra Care Housing cater for Deaf people?” would you know what they meant? Would you notice that Deaf had a capital D? Would you know about the differences between the Deaf and the deaf?

They are two very distinct groups, in many ways, with different needs. Let me explain.

I’ll start with the deaf, with a lower case d, because that’s my tribe. I started to lose my hearing in my twenties, got my first hearing aid when I was forty and the second not much later. I then needed stronger and stronger versions until, by my sixties, I was severely/profoundly deaf in both ears. Life got extremely difficult, but now I have a cochlear implant and things are hugely easier again.

People like me - deaf with a small d - have usually lost our hearing in adulthood. Our type of deafness is sometimes described as adult-onset, or age-related. We might also be described as “deafened”, implying that we could once hear but now we can’t. A medical term you sometimes hear is post-lingual deafness – we became deaf after the acquisition of speech and language.

Very often, in fact, people in my tribe don’t use the word “deaf” to describe ourselves at all. Partly that’s because adult-onset hearing loss is often (not always) a gradual process, passing through stages from the really very mild to the really very severe. At the milder levels people may say they are “hard of hearing” or “have hearing problems”. Lots of us think that "hearing loss" is a very good term to describe our situation. We could hear, then we lost that ability. Some of us don’t like to use the term “deaf” in case it implies that we can’t hear anything at all, when we can. Some of us, especially when our hearing loss is severe, like to use the term. I adopted it as my standard self-descriptor when I decided that none of the other terms adequately got over the seriousness of my situation. I was really very deaf indeed, and needed people to know that.

My tribe don't use sign language (in the main, there are always exceptions). Our friends, families, work colleagues and social network contacts are people who hear; learning sign language wouldn't help us communicate with them. We have, at one stage or another, been fully paid up members of the hearing world and it is that world we seek to connect with and remain within.

There are a lot of us. More than 70% of people over 70 have a hearing loss and more than 80% of people over 80. NHS England estimate that around 500,000 people living in care settings by 2032 will have a hearing loss.

Deaf people – Deaf with a capital D – have usually been deaf since birth or childhood. They define themselves as being part of a Deaf community. They sign. They are very unlikely to use the term "hearing loss" and may argue, instead, that they experience Deaf Gain. They are proud to be Deaf, proud of their beautiful, expressive language and proud to be part of a rich Deaf culture. Often, they would not see deafness as a disability. They just speak a different language, in the way that some people speak French.

It’s estimated that by 2035 there will be around 11,500 to 27,000 Deaf people in the UK over the age of 65 and around 2,500 to 2,800 over the age of 85.

As with all definitions there are exceptions. Some people with adult onset deafness learn to sign and join the Deaf community. Some people who have been deaf since childhood or birth prefer to lip read rather than sign. But the differences between the groups are real.

The problem is that people often confuse one of these "tribes" with the other, when, in practice, their needs and demands are very different, with a profound impact on how staff should be trained.

If you are thinking about housing people from the Deaf community you MUST already have (or rapidly gain) strong links with that community in your locality. They will tell you what they need. As a person who doesn’t walk in those shoes I wouldn’t presume to speak for them. Read Craig Cowley’s Housing LIN guest blog, ‘A DEAF UTOPIA - 'Extra Care Village' for Deaf and Hard of Hearing older people’, on this as a first step. Craig’s organisation, Action Deafness (opens new window), is trying to develop an Extra Care Housing scheme specifically for the Deaf community, ensuring that the communication needs of people using British Sign Language are fully met and their culture celebrated.

I can’t say “if you are thinking about housing people from the deaf community” (small d) because those of you catering for older people already are. My blogs on this website (the first about hearing aids, the second about how good design can make hearing easier) are talking about my tribe – what works for us in terms of staff training and expertise, what helps or hinders us in terms of design. Next time, I’ll be writing about hearing loops – what they are, what they do, what they don’t do and how to make sure you get the best out of any loops your housing schemes already have.

Do you know your deaf from your Deaf?