I normally listen to the Radio 4 programme called A Point of View but missed it on 2nd April so I was really pleased that Sarah put the link in her newsletter last week, so that I could catch up with it on iPlayer. The subject was the need to Reframe Dementia as a Disability rather than a Disease. The speaker was the distinguished disability rights campaigner Tom Shakespeare, senior lecturer in sociology at the University of East Anglia and himself a wheelchair user.
It was one of those programmes where I found myself shouting at the radio – or in this case my phone – saying “Yes”, “I agree” and most importantly “We are doing that at Tibbs Dementia already”.
I really hope you heard it. If you didn’t you can still find it on iPlayer. I just checked.
Tom Shakespeare made the point that people with dementia are not included in the 8 million strong world-wide community of disabled people, although their rights are theoretically covered by the Equality Act in the UK. Public attitudes to dementia are still overwhelmingly negative and as Tom Shakespeare said, “People are frightened out of their wits by dementia even though 1 in 3 of us will develop it.” This leads to all the problems of denial on the part of the person with dementia and their carer with which we are all very familiar. This fear grows from ignorance and stigma and the really dangerous thing is that it prevents people from accessing the services which can help them. We in the Bedford area are offering the help which people need, as recommended by Tom Shakespeare I am proud to say; the creative arts particularly music, physical activities and above all solidarity and friendship. If we can just persuade people to give us a try we can be pretty sure that we will be able to offer them a place where they can belong and thrive. It’s getting people to cross the threshold which is the biggest challenge.
I thought I’d road test the recording on the Clear Voices group this week and played it in three sections on my phone. The discussion which followed was interesting. One person said that she gets really irritated when others offer to help her when she doesn’t need it “If I need help I’ll ask for it” she said with great force. What she does need is more time to complete tasks because her cognitive problems lead to slow processing. Someone else told how, as soon as he received the diagnosis, he and his wife decided to tell everyone in their social circle that he has Alzheimer’s and as a result they have never had any negative responses to deal with from other people at all.
I have long believed that we need to see dementia as a disability. People with disabilities have rights and therefore power. Think of the Paralympics. Think of the adaptations which now must be made by law to all buildings used by the public so that they can accessible by wheelchair users. These changes are now part of mainstream culture. We don’t think twice about them. But they arose out of years of campaigning by people with disabilities and their allies.
My biggest cheer for the programme however was reserved for when Tom Shakespeare cast doubts on the term “Dementia Friends”. This scheme was marketed as somehow being the best way to change public attitudes and remove stigma through education. But it always made me uneasy and I did not know why until I heard this broadcast. Tom Shakespeare said that it is the wrong language. Being a friend to someone because they are living with a medical condition implies an imbalance of power. It puts the one offering friendship in a dominant position – above the one who needs befriending. Instead, he suggests we should be using the phrase “Dementia Ally”. Allies stand side by side and fight injustice together. They are equals. This is a particular challenge when our allies are living with cognitive impairment but it can be done. It is being done.
The Scottish Dementia Working Group was one of our inspirations when we first decided to build our new organisation and they are an example of this. It was good to be reminded of this by Sarah. And it is good to know that prestigious research bodies such as the Mental Health Foundation and the Joseph Rowntree Trust are thinking along these lines. We are already part of DEEP (Dementia Empowerment and Engagement Project) and some of us played an active part in the “Dementia Diaries” project in the past. So far so good.
I for one would be very proud to describe myself as a Dementia Ally and – if required – to wear a badge to prove it.