‘Understanding the Lives of Older People with Vision Impairment’ (VI).

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A blog for the small event held at the Thomas Pocklington Trust on May 9th 2017 and co-funded by the BSG.

Sight loss affects people of all ages but is more prevalent with increasing
age: from midlife onwards developing age-related long sight
(presbyopia) and wearing reading glasses becomes common. Many
people live with more complex vision impairment alongside other health
and welfare issues that can be disabling in later life: an area that is still
under-researched (Zimdars et al, 2011). RNIB report that one in five
people aged 75 and over are living with sight loss. This blog describes a
BSG small event where a number of participants from a study of the
everyday experiences of older people living with ‘disabling’ sight loss
joined researchers and practitioners working in the field to discuss the
findings of a study funded by Thomas Pocklington Trust and carried out
by an Open University team: Jeanne Katz, Sheila Peace, Caroline
Holland and Rebecca Jones.

We had talked to fifty older people living with vision impairments (VI) and
some family members and practitioners. For some sight loss had
occurred gradually, for others suddenly or accelerated. Only three
people had been vision impaired since birth or from early childhood. The
participants included the ‘oldest old’ aged in their high eighties and
nineties; and older people from Black and Asian Minority Ethnic groups,
whose voices are rarely heard. Through in-depth interviews we learned
what it is like to try to maintain personal autonomy when circumstances
may undermine your ability, how people live both inside and outside their
homes, and the relationships that are important to them. Talking to those
who work alongside older people showed how complex the service
system can be but also the value of local and national organisations for
people with VI. Further details of the research findings are given in a
research report in the next Generations Review.

The thirty people who came to the small event included 10 people with
VI ( 8 of whom were research participants) as well as interested
academic researchers and members of voluntary organisations for VI.
We interspersed roundtable discussions with presentations of the
research findings. People with VI talked about living in their homes,
going outside, and what assistive technology (AT) they found useful or
would find useful, while others asked questions and made suggestions
about useful technologies. Interestingly, those attending the event were
more vocal on AT and IT and the scope for further development than the
study participants, and here we report some of the issues that they raised.

Image 1

Before moving to discussion of AT and IT, some participants with VI
talked about the general lack of facilities to help people to maintain, or
start, new hobbies and the need for more courses for people with VI.
Some people described equipment provided when they were first
diagnosed with VI, but as adjusting to ageing and sight problems is a
life-long process people need on-going reviews of their circumstances
and access to home adaptations, AT and IT. Financing adaptations could
also be an issue, and without local VI groups to organise access to
exhibitions of equipment and to gadget-learning sessions they would not
know where to start. Access to good information currently depends on
the area you live in because service provision varies. Who you know and
how you know is crucial, so linking to local groups and making your
voice heard was vital – but this could be especially difficult in rural areas.

Of course, the discussion led people to share ‘ways of doing things’, talk
about gadgets they knew about, and some that may or may not exist
that people with VI would find very useful. First, for daily life indoors:

  • Something to help you pour liquids into a cup without missing the
    cup altogether (as opposed to the ‘liquid level monitors’ you can
    already get – those depend on you being able to get the liquid into
    the cup in the first place).
  • Something to tell you when your kitchen worktops are clean.
  • Something to spot stains on your clothes (having stained clothes in
    public is very stigmatising and leads to you being seen as not
    coping).
  • Something to help men shave without missing bits
  • Self-injecting pens for diabetics – so District Nurses don’t have to
    come out for such a routine task. There would have to be strict
    safety features build in.
  • One person really wanted an App on her phone with lots of
    information relevant to sight loss from which she could choose the
    bits most relevant to her, to create ‘a kaleidoscope of information’
    personalised to her. Other people with VI in the group said they
    didn’t use their phones for anything other than phoning people and
    wouldn’t use anything like this. It’s really important to recognise
    that older people with VI are not all alike and that one solution will
    never suit everyone – there needs to be choice.
  • Another person said ‘I can’t turn on washing machine even with
    ‘bump ons’? ’- gradually worsening sight having a huge effect on
    what she can do.

Image 2

The group then discussed daily life outdoors and here are some issues and ways of being assisted:

  • Be my eyes – a Smart phone with a camera; link to a volunteer
    someone to direct you by voice – and e.g. can identify for you what
    you are pointing the camera at (e.g. when shopping). http://
    bemyeyes.com
  • Road crossings where people know about the toggles on Pelicans
    etc.
  • Touch and hearing vibrating iPhone router
  • Recognition of what the white stick is for – does everyone know?
  • Night services with appropriately trained staff.
  • Safety and communications people – understandings about guide
    dogs crossing roads.
  • Problems when Zebra Crossings are removed to make shared
    spaces
  • Shopping – retail centres that change the layout – do they think
    this through with VI people in mind?
  • Self-service tills are expected to be used by more people and yet
    no support for VI.
  • What can you wear to tell you where you are? Some examples:

Cities Unlocked (in development) https://news.microsoft.com/en-gb/
2015/11/25/cities-unlocked-a-voyage-of-discovery
RNIB in your pocket http://realsam.co.uk/ for information on
demand
Wayfindr – audio-based wayfinding https://www.wayfindr.net/ Still at
a developmental stage but potentially very useful
Glass – a new version of the defunct Google Glass which is now
aimed at industrial use https://blog.x.company/a-new-chapter-forglass-
c7875d40bf24

  • Booking trains in advance helps when going to the train station
  • Help at stations by transport services/airport staff who get training
  • Taking photos of landmarks
  • When travelling, sudden changes of platform and destination
    changes are difficult – could technology help?
  • People weren’t very keen on the idea of buildings that speak their
    names out loud when you pass them, or press a button or
    whatever. They wanted something that was private to them and
    didn’t advertise the fact they had VI.
  • Uneven pavements – ‘we need some GPS way of reporting them
    because the council requires you to specify which slab it was,
    which is really hard to do, especially if you are VI! ‘ ‘We should get
    Health Economists to cost the falls caused by bad pavements and
    then that might make the case for spending the money to build
    pavements differently’
    .

These were just some of issues discussed, and as suggested at the
event we will forward these ideas to the Helen Hamlyn Centre at the
Royal College of Art. Further details on the research will be found in a
forthcoming article in Generations Review with links to the Research
Findings. This was a good event and the level of involvement was
outstanding. Thanks to participants and to BSG for your support.

Sheila, Jeanne, Caroline and Rebecca