For most of my clinical career I worked with people with intellectual disabilities, and if you spend any time at all with people who find reading difficult, you soon realise how much literacy matters. Assessing decisional capacity, I listened as people accused of breaching contracts or tenancy agreements, stumbled through them word by word and sometimes syllable by syllable, arriving finally at the end with no idea of what it all meant. I also saw the blank faces at meetings where, despite supplementary documents being produced using EasyRead to maximise inclusivity, understanding was limited. People were distracted by the images used to support the words, and the words never gave as much information as the documents everyone else had.
But I knew from talking to many of the same people how adept they could be at expressing themselves. Tone of voice said more than the word itself, and the spaces between their words were only about assembling the information they needed, not about ignorance of language per se. Often, they knew the words when they heard them, they just couldn’t read them.
Much the same went for fiction. Not so important you might think but if there’s nothing to read that you can identify with and doesn’t dumb you down, why would you bother trying? Where were the genre stories for adults with intellectual disabilities? The crime, the romance, sci fi, fantasy, horror? I searched and came up blank, yet almost everyone I knew followed the soaps. I could get people to role play if they could be characters from EastEnders, and I needed to be on the ball myself or I could easily be duped. One woman with Down’s did just that; flaked out across the chairs in my office, she looked the picture of imminent collapse. The GP advised an ambulance and paramedics were scrambled. They were there in minutes, took pulses, put her into their cardiac ambulance no less, and attached electrodes. She checked out fit as a flea so they called her carers, and off she went home. That night, I saw a clip of a previous EastEnders episode showing that exact scenario.
People clearly want, consume, and enjoy fiction. Many are actors and some, like Sarah Gordy and Tommy Jessop, achieve prominence in prime time TV shows. Others write copious accounts of their lives via volunteers, and some have had their poems and stories transcribed and put into book form. But then that’s it – if they can’t read what’s been written on their behalf it becomes ephemeral and it’s lost to them.
Technology hasn’t been hugely helpful, despite developments that have shown early promise, as most have so far ended up being too complicated for everyday use. But screen readers are improving and the NHS increasingly uses videos to show procedures patients might need to undergo. But people are easily bored when an activity is passive and even a short film with no interactivity, especially if the person doesn’t feel involved in it, can lead to rapid switch-off.
We tried a different approach to preparing people for a hospital admission. We took volunteers with intellectual disabilities into a virtual world and let them navigate rooms based on their local hospital. They loved it. They wanted to go back. They liked the seafront and wanted to see if their own houses were there, or their favourite shops.
But the programme, Second Life, was a step too far for an organisation such as the NHS. It had to be downloaded onto computers and it seemed to have no rules. It could also be buggy, laggy, and unstable and required someone on hand who knew how to nurse it better and make it work. Not an ideal use of people’s time.
So that’s on hold (never say never) but what was clear from that experience was that our participants, some with quite severe intellectual limitations, ‘got it’. They understood the semi-fictional nature of the environment, they engaged with it to the extent that one managed to get himself out of the hospital build altogether and onto what seemed to be a space station! They made up stories about things they saw when memory failed them, and they told other stories about their own hospital experiences triggered by seeing the operating theatre or the waiting room. We should keep this in mind; virtual reality is coming on in leaps and bounds and its potential for clinical, social and many other applications is phenomenal.
For now though, and back to the reading problem, we have a new opportunity, something so simple it seems ridiculous – pop a QR code onto a leaflet, the top of a short story, someone’s poem, and link it to an audio file of the words being spoken.
I’ve argued elsewhere for this in the interests of privacy. Too many times I saw vulnerable adults having sensitive information read to them by someone else. Usually it was a benign individual – a parent or sibling; but occasionally it wasn’t; it was a young child, a new carer, or sometimes a person I strongly suspected was an abuser who might use the information to further belittle or exploit the other person.
This doesn’t need to happen if people can have such material read to them privately any time they want via one of the many, almost ubiquitous, smart devices now available. These are already being used to help people travel independently, to get texts about their bus service and check the route as they go, or to alert specific people if they feel unsafe. A free scanner app to hear someone read an information leaflet about your cervical smear test or testicular cancer examination is barely any more complicated.
My personal campaign, #QR4PR, (a QR code for a Personal Reader) is a first step to getting QRs on as many NHS and other public information leaflets as possible. If you’ve ever sat in the doctor’s waiting room with a leaflet you’ve been given to read before you go in and you forgot your glasses, you’ll know how it feels to be disconnected from what you need to know. But a quick scan and you’d be back in touch with no need for an embarrassing scout around for someone willing to read it for you.
The final bonus; beyond privacy, dignity, inclusivity, and accessibility; is readability. One thing writers of fiction know full well is that reading your work aloud leads to better writing on the page. So apart from anything else, if the professionals who write these things have to record them too, they’ll certainly write something that is easier to read!