In my last post, Selfie Sabotage, I reported that Dylan seemed anxious about people taking photographs by camera or mobile phone. This is now written into Dylan’s care plan so he is no longer exposed to photography at the care home or while he is with me. Although this has involved a change in practice, I have found it surprisingly easy to put my phone away while I’m with Dylan. Last week I took Dylan to Marske-by-the-Sea for his summer holiday. As well as spending time on the beach we visited places I would previously have photographed but which I didn’t even consider getting my camera out for. It’s reassuring to me that habits can be quickly and painlessly changed when necessary.
My impression is that the ban on photographs has made Dylan more comfortable and I’m pleased I spotted that this was an issue for him. Something that struck me last week, however, is that anxiety about photographs could, in time, be replaced by something else. Because I wasn’t able to take photographs, I made written notes about our trips and the places we visited instead. By the end of the week Dylan was shouting ‘pen, pen’ at me every time I got my notebook out.
Turkle and Technology
I was minded of Dylan’s phone-phobia recently while reading a Jonathan Franzen essay on Sherry Turkle (a ‘technology skeptic who was once a believer’). Children, Turkle writes, ‘can’t get their parents’ attention away from their phones’. The decline in interaction within a family, Turkle suggests, inflicts social, emotional and psychological damage on children, specifically ‘the development of trust and self-esteem’ and ‘the capacity for empathy, friendship and intimacy’. Parents need to ‘step up to their responsibilities as mentors’, Turkle argues, and practice the patient art of conversation with their children rather than demonstrating parental love (as Franzen puts it) ‘by snapping lots of pictures and posting them on Facebook’.
Turkle’s points about the impact of technology on child development could perhaps also apply to Dylan. If patience is a necessary quality when engaging a child in conversation, this is even more the case when communicating with someone who is non-verbal. Although Dylan is an adult in terms of chronological age, cognitively he is around five years of age (according to best attempts to assess this). Certainly, I would identify the development of empathy, trust and self-esteem as relevant to his nurturing and care.
If there is any chance at all that exposing Dylan to technology could be limiting his opportunities for development then of course I should follow Turkle’s advice. But perhaps Dylan intuitively knows this? His protests about my phone were maybe because he wants my undivided attention – in which case, having to wait while I write in my notebook might be just as irritating to him as waiting for me to take a photo. Reading Franzen’s essay brought to mind another technology-related issue that I’ve had to deal with in relation to Dylan’s care recently. Rather than Dylan being the one protesting about the technology (as with phones and cameras) however, in this instance I have been the one doing the sabotaging.
Dylan has been using an iPad for years, primarily to access CDs and films he has purchased and downloaded and which he can watch offline. Previously, Dylan had portable DVD and CD players for this purpose but the iPad proved a better option practically and for promoting independence. Although initially intended for use during journeys and holidays, Dylan became increasingly attached to his iPad and built it into his daily routine, often preferring it to his TV or over other activities.
Recently, however, a problem emerged. On a number of occasions, Dylan managed to ‘lose’ the music he had purchased. This happened every three months or so, always while Dylan was at his care home. Staff didn’t notice Dylan’s music had disappeared but they did report ‘challenging incidents’ for which there was ‘no apparent trigger’. Dylan would, however, show me that his music was missing when he came on a home visit and I would then have to set about fixing the problem. This was more complicated than Dylan merely ‘hiding’ the purchases (for which there are retrieval instructions) and required Apple technicians recovering the music so that it could be re-downloaded to Dylan’s iPad. The technicians were always professional, efficient and impressively competent but the process was time-consuming and frustrating.
After the third fix, I asked if care home staff could provide more support to Dylan while he was using his iPad and suggested that they check it regularly, particularly if Dylan seemed frustrated or upset. When Dylan presented me with the problem again, just a week later, I decided a different solution was required. Fair enough to fix something once or twice, but Dylan’s iPad seemed to have become a source of stress rather than a resource. How had this problem developed and why was it happening more regularly? I checked the stats to see how long Dylan had been spending on his iPad. Quietly aghast, I opened my secret drawer – the one where Dylan doesn’t know to look – and slipped the iPad inside.
Intellectual Disability and Technology
It is very hard to remove something from an adult, even when they lack the capacity to make decisions and need someone to act in their best interests. Dylan had been using an iPad for years and it had a key role in his life. I was aware that in removing it I could create more problems than I solved. The iPad, however, was itself the source of some of the difficulties which Dylan was encountering.
Tech companies do not have intellectually disabled adults at the forefront of their mind during research and design and, as consequence, even the most intuitive apps and products are not always accessible, particularly to those adults who do not use speech to communicate (i.e. who are not literate and who cannot process spoken language). Although there are some great pre-school and pre-linguistic resources on the market, Intellectually disabled adults are not pre-linguistic children, they are adults who do not (and probably are not going to develop) spoken and/or written language.
Like the school curriculum, technology is language-based and thus inaccessible to people who do not use language to communicate. It is sometimes possible to adjust a setting on a device so that it uses visual information. For example, Dylan is perfectly able to choose between the album covers of his music downloads. Apple’s default setting, however, is to display his music alphabetically, by artist/CD name. Dylan cannot read the text so he has no idea where to click. If his iPad defaulted to the text-based rather than visual setting (which it did, with every upgrade) Dylan would become disoriented and distressed.
This has always been an issue for Dylan, but the problem seems to have become more acute since January when Apple rolled out a major upgrade to their music streaming service. Of course, what Apple want is for people to use their Music streaming service rather than purchase albums as Dylan does. However, Dylan is not able to use the streaming service because it is language-based. He needs his pre-purchased music, visually displayed. When it isn’t available to him in accessible format, Dylan tends to press keys and click icons and hit whatever message (language-based, which he can’t read) appears on the screen. I assume that it is at these times that Dylan manages to alter his settings and services.
The Apple Scruffs (my affectionate name for the wonderful telephone support guys) are happy to support me to recover Dylan’s music as often as he needs, but clearly it would be better if he wasn’t able to lose it in the first place. One of the Scruffs advised that I send some feedback to Apple, suggesting that they put an option for preventing the removal of downloaded music on Parental Controls. I never had a response to that request – presumably it isn’t a priority as Apple want to encourage the use of their subscription streaming service rather than downloaded purchases. So, as things stand, Dylan has hundreds of pounds worth of films and music which he has bought via iTunes, but which he cannot use. These will, of course, remain his personal purchases and at some time in the future, hopefully, he will be re-united with his iPad and able to enjoy these again. At least, that’s what I’m telling myself …
Support and Technology
What the recent problem with the iPad has demonstrated is that, given the built-in obstacles in the technology, Dylan requires support to use it. Dylan generally recognises when he needs support with something language-based and will request this. However, the personal usage data suggests that Dylan had been spending significant amounts of time on his iPad. The reality is that if staff are not available (or able) to support Dylan with the technology, rather than a resource it becomes a source of frustration and anger, leading both the technology and Dylan to breakdown.
When I confiscated Dylan’s iPad I was aware this would be difficult for him. I told Dylan the iPad was ‘broken’ (which Dylan knew because he had shown me that the music had disappeared). This time, I told him, it had to ‘go to the shop’ to be fixed, but for how long would he accept that story? Confiscating the iPad would also be challenging for support staff. Not only would they have to field Dylan’s questions and manage any incidents arising from my removal of the iPad, they would need to find something else to occupy Dylan’s time. Turkle might approve of what I had done, but I wasn’t sure the care staff would.
I held my breath as I explained to the team leader that I was returning Dylan to the home without his iPad. To my surprise, she reacted positively; she’d had a hunch, she said, that many of the ‘incidents’ involving Dylan were caused by his frustration with his iPad. Perhaps removing it would reduce Dylan’s stress and mean there were fewer incidents of ‘challenging behaviour’?
Dylan and Technology
At the time of writing (11 weeks after I confiscated the iPad) there is some evidence to suggest that the iPad had become a source of distress for Dylan rather than a support; certainly there has been a reduction in the total number of incidents when Dylan has become upset at the care home. I’ve been most struck, however, by the ease with which Dylan has accepted the change. Just as I quickly got used to life without my camera phone, so Dylan has adapted to life without his iPad. He asked about it a few times in the early days but hasn’t mentioned it (at least to me) for weeks.
Going on holiday last week presented me with a dilemma, however. Dylan would need access to his music and films while we were away. Should I produce his iPad (music restored)? If I did, Dylan would expect to keep it on our return from holiday and the cycle would begin again: staff not available to supervise – Dylan spending too much time on his iPad – music lost – Dylan frustrated – challenging behaviour – me back on the phone to the Apple scruffs. Nothing about that felt positive. So instead, I bought a portable DVD/CD player for Dylan to take on holiday with a selection of discs. Old technology it may be, but it worked a treat.
In terms of new technology, the dream for the future is that tech companies give more thought to designing (or adapting) products so that they are accessible to adults who are non-verbal with intellectual disability. Perhaps that’s a pipe dream. In the meantime, it surely isn’t too much to ask that all disabled adults in care receive the support they need to access technology safely and effectively?
The photos of Sherry Turkle and the iphone are free stock images. The other photos are of Dylan’s iPad and were taken by me. The final photo is the view from a window of our holiday cottage in Marske-by-the-Sea, taken opportunistically one morning while Dylan was still sleeping.
Johnathan Franzen, ‘Capitalism in Hyperdrive (on Sherry Turkle)’, pp 67-74, in The End of the End of the Earth: Essays (Farrar, Straus and Giroux, 2018)