‘I’m not sure i like that…’

A man recently explained to me that he had told a couple of shopworkers about his wife’s dementia out of earshot when she was trying on a dress in a shop. His wife was not impressed when she found out. ‘I’m not sure I like that. You should ask my permission first. why do I need to be flagged up?’

This question arose again last week at a research exchange event organized by the excellent RICA where i found myself in a discussion around how to identify people with additional needs. Our discussion began by focusing on the onus of individuals to ‘self-declare’  (or ‘share,’ which is clearly a less loaded expression). I could hear the lady again ‘I’m not sure i like that…’

OK invisible disabilities are just that, but why should someone have to share intimate information about themselves in public – either through a lanyard or label or card? For some, that may work. Nevertheless,  if we ask people to label themselves or share their diagnosis so we can be dementia friendly, then I would argue we are NOT being dementia friendly. Time and again we hear the phrase ‘if it’s friendly for people with dementia then it’s friendly (accessible, navigable, clear, undaunting, supportive) for everyone’.

Isn’t this just good customer service? shouldn’t everyone be treated equally? here are a couple of examples where the presence and friendliness were beneficial to ALL.

2 case studies:

West Yorkshire Playhouse, under the guidance of the fabulous Nicky Taylor, now put on regular ‘relaxed dementia-friendly’ performances. Looking at the whole experience of the trip to the theatre, not only was the performance slightly adapted (without losing any artistic integrity) but staff and volunteers were out in force with bright coloured t-shirts – approaching and available to anyone. It was easy and provided a great atmosphere. Similar, I felt to the presence of the 2012 games makers – that animating, interested, enthusiastic and helpful force during the Olympics.

There’s a Hardware shop in York called Barnitts. It is a labyrinth of doors, floors, multiple entrances and shelves stacked to the rafters with the most complex array of materials and gadgets – a real assault on the senses. The York Minds and Voices DEEP group all agree that it is the most ‘dementia friendly’ place in York. Why? – not because it has a sticker in the window, or that the staff have undergone some awareness programme – no. But because staff are everywhere, because it is disorientating for EVERYONE who enters. The staff know this and will take you to the item you need and even run upstairs and fetch stuff, regardless of any disability or diagnosis.

A question was asked in our group about how we could get to understand the experiences of people living with dementia. Although we are talking about invisible disabilities, we are not talking about invisible people! – the voice of people with dementia is growing louder across the UK. DEEP – the UK Network of Dementia Voices now has over 80 groups UK wide; the dementia diaries programme captures voices and experiences of individuals constantly and has become a rich source of current and up to date information. The DEEP guides have been produced by and in consultation with people living with dementia.

 

So let’s move away from putting people in a position where they feel pressured to expose themselves and shift the onus on the potential helpers to identify themselves (big badges, luminous t-shirts).  If there is a hunger  to properly serve customers, then customer facing staff everywhere will be actively watching and listening, picking up on small cues and making themselves more visible and approachable, knowing as everyone should that it is more often the situation that disables not the condition. Now i’d like that…’

 

 

 

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