Social, cultural and historical context
Molly, a white British woman aged 77, lives in a private 3 bedroomed house. She moved there 15 years ago with her fiancé. He died 11 years ago and she has lived alone since then. She is divorced from a previous partner. In her youth, Molly had an office job; she travelled widely on adventure holidays, visiting many countries.
Participant's experience of ageing and ill health
Molly was diagnosed with macular degeneration two years ago. At the time of diagnosis the doctor said she would be blind in a few months but in fact she was blind within weeks. She tearfully describes the day she was diagnosed as the worst day of her life, and describes herself as “depressed” since. Before she went blind she used to read magazines (and do competitions in them), write letters and stories, correspond with pen friends, drive, and cook her own meals. She cannot do any of these things unaided now. Because she can no longer write things down or use a diary, she finds it harder to remember things. In addition she has high blood pressure and a bad back. Her fingers are not as nimble as they used to be. For example she fumbles with a bunch of keys: “They say when you’re blind you can feel very well. But that doesn’t work in my case”.
People in this participant's life
Molly has three children living a few miles away who visit regularly – one once or twice a week, the others approximately fortnightly. She has three grandchildren, two of whom see sees rarely. She describes one son as “very good at telling people what to do” and the other son as “the one who does”. A brother, of whom she is fond, comes to stay sometimes. She has no other help except a fortnightly cleaner whom she likes and trusts; this person came via a family member whose child was in the same class at school as the cleaner’s child. Previously, agency cleaners had stolen from her.
What matters to this participant?
Molly finds she needs a lot of help now, and is grateful to family and friends. Most people have been very accommodating but one set of neighbours have not spoken to her since she went blind, not even to say hello. This has upset her. Molly struggles to retain a sense of independence, which she values greatly (and the loss of which would symbolise “the end”):
“I could do with someone being in the house [when I bath] but I don’t want bathing…..or in the next room even. … I feel if I got to that stage the end is getting near. I do honestly. It’s like sort of taking away my last bit of independence. Even if it takes me twenty times as long, it preserves my independence, at least I’m washing aren’t I? ”
Privacy matters. Molly’s physical need to have help with aspects of personal care involves a loss of privacy and autonomy. “When I go away [son] will sort out my clothes for me, but it’s embarrassing having your son sort your knickers out”. One son cooks meals and brings them round. When someone takes her out, “it feels like a dog being taken walkies”.
Whilst Molly is grateful for her children’s help, she does not want to impose too much on them since all have busy lives and jobs. One son is self-employed, so she knows that time spent with her is interfering with his income. Sometimes she can go days without seeing anyone “because, let’s face it, they’ve all got their own lives”.
Adventure matters. Molly loves taking on physical challenges and going on train trips, though the journeys make her anxious as she can’t see who is in the carriage and has to wait for a stranger to meet her. She finds the journey frightening but likes overcoming her fear. On a recent sailing holiday organised by a charity, she steered a boat for over an hour with someone telling her what to do; she enjoyed the teamwork. She would like to go on a trip down the Amazon or do a parachute jump, though she thinks landing would be a problem with her being blind, so she would do it in tandem. She goes out (via the Link bus) to a weekly chair based exercise class. She has been a few times to a local “social club for people who need company”, but found the activities (dominoes) dull.
Molly describes many examples of adaptive actions by other people that enable her to remain independent and feel valued. For example, the Link always has the same driver, and he’s “very nice”. He pips the horn and then comes to the front door to help her to the bus. When he picks her up from the club he comes right into the hall for her and then when they get to her house, he takes her to the front door. Molly went to a museum with her son and granddaughter recently. Whilst there was an audio description, her 13-year-old granddaughter was very good at describing the exhibits so Molly listened to her granddaughter’s description of things. She really enjoyed this.
Before she went blind, Molly loved listening to music but since she lost her sight she listens to music less because she prefers to hear the human voice. She greatly values the radio and talking books.
Safety matters. Molly’s family are concerned about the risks related to her blindness. One son thinks she should get a guide dog; the other worries that it would restrict her going away and she might trip over it. Her children have suggested she move to live closer to them, but she thinks this would be a “nightmare” as she would lose friends, memories and familiar landmarks.
Molly is ambivalent about declaring her blindness in order to get help. Her son suggested she uses the Registered Blind label on journeys but Molly feels it might advertise the fact to the wrong people.
Molly met a gentleman on one of her outings; he has since been round to visit. She likes him company. His daughter brought him round on the first visit and Molly’s son was there too, to “check out” the man. She felt it was ridiculous having their children “guard” them, they felt like teenagers with parents.
One of Molly’s own worst fears is being overlooked by the doctors: “I’m scared of them closing a drawer and forgetting me”.
Technologies in participant's home and life
Molly has a telephone, television and DVD player, a computer (which her family bought her 7 years ago), a talking watch and a pendant alarm (which she is wearing). Some TV channels have audio description. Her home is fitted with various rails and a bath seat. There is an alarm button in the hall and a flood warning device on the kitchen floor. Molly wears her alarm pendant every day. She doesn’t like to wear it but as she’s paying £18.50 per month she feels she should wear it.
Materiality and capability
Molly finds the phone impossible to use except for stored numbers (mostly family members). If she dials using the buttons she gets the wrong number repeatedly. The buttons are the size of a 2 pence piece but they aren’t raised so she can’t tell what numbers they are. The phone’s memory can only store a few numbers, so she had to remove her friend’s number to add the local Link bus. Molly says people visit from the hospital but nobody has mentioned a phone that is adapted for the visually impaired. Because of her blindness, she can no longer use the computer; before she went blind, using it (for writing letters and stories) was “a doddle”.
Her three children all have different skill levels and interests in relation to technologies, and they also vary in their available time and motivation. When her children come round and “tidy up”, it can take days for her to find things again.
Her family have helped adapt some of the technologies. For example, her son has covered the TV remote with cardboard and tape to make sure she can only change the channel buttons. In the past she has pressed lots of buttons trying to change channels and ended up not being able to get the TV back on.
Adaptations to technologies in Molly’s home made by her son
One reason for taping over the buttons on the technologies is to restrict the number of choices, since Molly’s inability to see the options means that otherwise, she would end up pressing the buttons at random:
She puts her fingers over the washing machine control panel. She’s not sure what the buttons are. It’s set for a cold wash, she washes everything on a cold wash. He [son] has taped the setting over since she’s gone blind so that she can put different clothes in together. She says she can’t mess about with all different things. (Field notes fomr home visit)
When touring Molly’s house, the researcher notices an alarm clock with blue tape on it. She asks, is this a speaking alarm? Molly says it isn’t, but the researcher can see ‘talking’ on it. Molly didn’t know that. “Well, it hasn’t spoken to me yet!” The researcher asks what the blue tape on the alarm clock is stopping her doing. She doesn’t know.
Molly’s son bought her a big toaster but the size of the bread slice he gets her means they sink down into the toaster and she can’t get them out. She has to switch off the electricity and get a fork to pull the toast out. There are also some technologies that have been bought by her children but are rarely used, either because Molly is unfamiliar with them or because she finds them “fiddly”:
There is ‘one cup’ machine at the side of the kettle which produces hot water to make a cup of tea or coffee at the touch of a button. Does she use it? She does but then she forgets to use it for a while. [Son] got it for her and he always uses it when he comes.
There is a very large flask on the left hand kitchen surface. [Son] fills this with tea when he comes so she has got tea for the rest of the day. It’s too stewed to use the following day. She finds it a bit cumbersome but she says she can’t complain because it was a present.
She goes to pick up a mug of hot tea and misjudges the distances and burns her fingers in the tea. She runs cold water over her burnt fingers. She says she has a device in one of the drawers that makes a noise when the mug is full. She does use it when she remembers.
(Field notes from home visit)
Real incidents of using (or choosing not to use) an ALT
Molly once activated her Tunstall alarm by mistake and she didn’t know she’d done it. “All of a sudden there was loud voice saying ‘Mrs B’ - it scared the ruddy life out of me, I thought what’s happening in the house, I thought it was a ghost or something! That’s for fire, police or ambulance, and I didn’t want any of them.” She dreads the thought of them coming round if she had fallen before getting dressed.
On one visit, the researcher noticed that Molly was not wearing her pendant alarm. “I’ve lost it, I haven’t told [son]. I couldn’t find it yesterday morning and I always put it by my bed. I’ve been going round all the ledges, in the bathroom. Sometimes I forget to take it off and if I’m going for a bath I think ‘oh my pendant’s on, I’ll put it on the top [shelf in the bathroom]’” .
Between the series of research visits, Molly had a bad fall while out walking with her son; she “went flying” and was partially caught by her son before falling heavily against a wooden barrier. She went home but woke in the night in severe pain and activated her alarm. The call service immediately summoned an ambulance and also contacted Molly’s son. She spent a few days in hospital with heavy bruising and was discharged via the Supported Discharge service. She will be visited daily by re-ablement support workers for six weeks.
The last alarm story above illustrates how assistive technologies can work very well in people who are at risk and still have the cognitive capability to use them.
Many of the technologies in Molly’s life were bought before she went blind. They were fit for purpose then but are not fit for purpose now. There are also examples of technologies bought for her by sighted people that require vision to be operated effectively (e.g. the toaster); because of her blindness the toaster becomes impossible to use safely. Almost all technologies in Molly’s life have needed adapting and/or operating by her relatives, and different relatives play different roles and have different skills in this regard.
Molly previously used technologies to be creative and to keep in contact with friends and family. Now, her physical inability to use certain technologies (phone, computer) has exacerbated the contraction of her social world. Whilst her blindness has also reduced her ability to explore and interact with the world around her (she has gone from adventure holidays all over the world to dull games of dominoes), she still strives to make her mark and despite a significant increase in the risk and inconvenience of travelling outside the home, she still does so (“If I want to go out I’ve got to go out of my comfort zone”).
Molly’s blindness makes her vulnerable; a significant problem is finding people whom she can trust, for which personal contacts are crucial. She sometimes feels infantilised by her protective children but knows that there is a trade-off between support and independence.
Another important theme in this case is how remaining independent with severe impairment such as blindness depends on on-going work by the people closest to Molly to customise and adapt activities and technologies to fit her capabilities and constraints. Examples include the various modifications to devices made by her son, the little routine followed by bus driver, and the work of the re-ablement support workers and the wider acute care team. All these things work because the people know Molly (i.e. they know her capabilities and they know what matters to her).
(Sadly, Molly’s eldest son died during the course of this study. As well as dealing with her grief, she will no longer have his support.)