Julie Gennery: Why I’m creating a plan of action for Deaf people’s care provision

For many of us, there comes a time in our lives when our loved ones become elderly, ill or disabled and difficult decisions have to be made about their care.

There may be a time when we are unable to deal with challenges that we are faced with and the reasons for this are numerous.

It could be due to geographical reasons, emotional, physical, logistical or any number of reasons that we have to conclude that our loved ones need to be cared for by someone other than ourselves.

Speaking from personal experience, I went through this with my own mother and know all too well how difficult those decisions can be.

Towards the end of my mother’s life, she had to reside in a care home and whilst this is undeniably a very upsetting situation to find yourself in, there is also a lot of comfort in knowing that such a facility exists.

It’s not an option we willingly take, however, sometimes circumstances dictate that you are just not able to provide all the care yourself and a shift in thought process has to be
adopted.

How grateful we then become that care homes are there to provide us with a safety net and to be able to care for our loved ones, keeping them safe and well.

Our society is very fortunate that we have these facilities to care for everyone when they are at their most vulnerable and can receive care from professionals. Except it’s not there for everyone.

It is not there for our Deaf Community.

Deaf people belong to a cultural minority group and they have usually been submerged in Deaf culture all of their lives, attending specialist schools for the Deaf, attending Deaf clubs and meeting with Deaf friends for their social life, going on holidays with Deaf friends, and so on.

And at the heart of Deaf culture, is their own language. British Sign Language (BSL).

It is a shocking fact that very, very few care homes for the Deaf exist. Deaf people are therefore being placed in mainstream care homes where, quite simply, their needs cannot be met.

Because of the language barrier, they are not able to convey their needs, from the simple things in life such as expressing what they would like to eat or drink, to the more serious aspects such as not being able to communicate if they are uncomfortable, need attention, are in pain, any number of things which we may take for granted every day if we have a readily available method of communication.

When someone goes into a care home, apart from receiving medical care and personal care, the main ethos of care homes is socialisation.

Families find comfort in the fact that their loved one may no longer be living alone, and can socialise with others and reap the benefits of having company from others.

Care homes promote their services by saying they offer peace of mind to families as they will take care of their loved ones. Fun is at the heart of this, games, classes, outings, shows, visits from schools and entertainers and general conversation – all to keep everyone’s spirits up, just as everyone benefits from such social activities throughout their lives.

Imagine Deaf people being surrounded by people who they cannot even chat to, let alone express their needs and desires.

Not being able to participate in activities and outings, not easily being able to express if you want coffee or orange juice.

Not being able to be comforted and reassured at a time in their lives when this is more important than ever before.

And yet, this is the cruel reality that many Deaf people are facing now.

Imagine if you were living somewhere amongst other people and no one spoke your language. How would you cope? How would you cope with the isolation, frustration, sadness, and immense fear?

My husband who is Deaf and severely disabled is in need of 24 hour care and I simply cannot imagine the situation, if, for whatever reason, he had to reside in a mainstream care home. My heart breaks for him and our Deaf community and I have to try and do something to address this.

I have started to put together a plan of action in the hope of creating a unit within a care home that is designated for Deaf people.

The ethos of this unit is that everyone would have an understanding of Deaf culture and BSL. The staff would all be sign language users, preferably Deaf themselves, and/or hearing staff with a good understanding of BSL.

The residents could easily communicate their needs and not have the constant fear and depression they currently have in mainstream care homes. The residents could chat to each other and engage in activities. There would be no delay in receiving treatment due to being able to express at source, their discomfort or pain.

My proposed project is a challenge as Deaf people are spread out across the country and of course there are many financial implications and I am under no illusion about the challenges ahead.

However, I cannot simply dismiss the idea as it being too difficult or too expensive. This would come at the expense of our Deaf community, both now and for many generations to come.

Change has to happen and progress has to be started somewhere. Otherwise, our wonderful Deaf community who have contributed to our society all of their lives, are resigned to live their days in fear, isolation and unbearable sadness. This is my motivation to trying to make a change.

Progress cannot happen overnight and I know this may take many years to become a realisation. However, I think one of the main obstacles is lack of awareness. So I am making it my mission to raise awareness and explain how Deaf people, who are in need of care, are not having their needs met.

That safety net, that I talked about at the beginning, is just not there. Care provision for Deaf, BSL users simply does not exist. This is not just a moral issue but a legal one and one I feel passionately about and it’s time for change.

My name is Julie Gennery, I am 53 years old and as well as being a freelance BSL/English interpreter I am a carer for my husband Matthew who is Deaf and severely disabled. We live in Lincoln and there is very little care provision for Deaf people and this breaks my heart.  I have decided that it’s time for change and have set myself a challenge to improve the lives of Deaf people needing care.