Author: Priscille Geiser is a consultant in rights-based, disability-inclusive development, and a Research Associate with the ALL Institute’s SHAPES project.
Research Stream: Social Technologies
As I visited my grandparents in the north of France earlier this year, I arrived by train at the nearest station and my grandfather, 96 years old, was to proudly drive me home. As he was not there yet, I sent him a text message, and he arrived shortly after. Yet he told me he had not received the message, because he does not know how to use this function.
He added that with almost everything shifted to the internet or mobile phone, from the bank services to the mail, life is getting challenging for older people, and that older people are treated like second-class citizens worthy of lower quality of services.
A few months later, as I started collaborating with the Smart and Healthy Ageing through People Engaging in Supportive Services or ‘SHAPES’ project (coordinated by the Assisting Living and Learning Institute of Maynooth University), I recalled this anecdote and approached the potential of digital technologies in transforming older people’s lives with a dose of scepticism. Over four years, SHAPES coordinated the joint efforts of a wide range of universities, private companies and civil society partners to respond, among others, to the following question: how can we make the most of technological progress to support the objectives of living longer, better and more autonomous lives at home? While I was very interested by the initiative, the challenges to older people’s engagement with smart tech to support their health were what most easily came to mind.
Digital literacy, tech appetite and requirements surely vary among older people, and this diversity is only amplified by the fact that more than 46 percent of older persons worldwide have an impairment. Over twenty years of professional engagement in promoting the inclusion of persons with disabilities have also taught me about the risks associated with innovations that do not centrally recognise people’s perspective and priorities from the design stage. The digital revolution has happened mostly without consideration for persons with disabilities. Standards such as the WCAG are essential, yet over twenty years after their introduction, about 90 percent of websites are inaccessible to people who rely on assistive technology. Advocacy for Universal Design and systematic enforcement of accessibility standards looks like an endless catch-up strategy. The new Artificial Intelligence (AI) revolution now also threatens to perpetuate digital exclusion or worse, to aggravate stigma, if machine learning is to be fed with existing datasets that largely stigmatise and discriminate against persons with disabilities and older persons. Using these innovations to enable access to care and support services, that are for many people the preconditions for their autonomy and participation, seemed to bring rather grim prospects. Not to speak of the fear of losing human contact and relations while social isolation is already a significant issue.
My concerns for protecting human rights were precisely what the SHAPES project wanted me to use as goggles to screen through the programme’s proposed approach and outcomes. Since AI has opened its doors to the wider public, every morning brings dozens of smart innovations all eager to shape our futures. Digitalisation of services, from banking to teaching has been on its way for decades and the global Covid-19 pandemic only accelerated its fast pace. The question is no longer whether to accept the transformation of services through technology, but how to ensure that these evolutions transform our lives in a positive manner, that is, one that protects our rights as human beings. The promise of the 2030 Agenda for Sustainable Development of leaving no one behind is at risk of not being fulfilled for many disadvantaged groups, including persons with disabilities and older persons. From the Summit of the Future, the new European Care Strategy, to a possible treaty on the rights of older persons or ongoing debates around the reform of care, the next few years will be critical in designing the future we want, and bring the urgency to know better what to ask for.
So, what should tomorrow’s systems for rights-based support services look like and how can digital technologies support a positive shift? For persons with disabilities and older persons more than others, care and support services are a precondition to live and be part of their community. Availability of human assistance, assistive technology, accessible transportation all can be decisive to get out of home, reach school or work, enjoy a social life, or be cut out from all this. Too many people who need such services struggle to access these. This situation is part of a larger pressure on the economy of care, which revealed more bluntly its limits during the Covid-19 pandemic. Services systems put to the test revealed disconcerting discriminations towards persons with disabilities and older persons, while professionals, particularly women, are increasingly overburdened and underpaid. In other words, for both people requiring services and people delivering services, current systems do not work, and the demographic trends of ageing societies will only increase the pressure.
Therefore, the digital spurge which prompts us to rethink tomorrow’s services should be an opportunity to rethink systems in depth. As the potential of robots or apps in health and care is being explored, it is not only technical change that should be looked at, but their potential to improve all aspects of services as a system. Will smart technology in the home decrease the pressure on care staff and improve access to at least some services for people who need these? Will apps facilitating remote access to services result in isolation or enhance people’s independent living? Will they be designed in ways that promote their use by the widest possible range of people, including the diversity of women and men with disabilities? Will smart technology bring more, and more reliable data on the person’s situation to better personalise services to their needs, priorities and preferences? Will greater access to individual health data lead to more empowered decisions and to exercising voice, choice and control, addressing the power imbalance in healthcare? What digital and health education is needed to increase people’s agency? Will this change free some time for the carer to engage in fewer administrative tasks and, instead, be more available to do further humanly engaging work?
Harnessing the potential of technology to advance human rights should be accompanied by, and grounded in, a shift in how we think systems of services, with particular attention to those most at risk of being left behind. Formulating the right intentions is important before embracing technologies as ‘solutions’. The SHAPES programme took initial steps in this direction, which deserve recognition: setting up an ethics committee and protocols, integrating Universal Design and accessibility standards as requirements, involving representative organisations of persons with disabilities and older person’s rights, and adopting a person-centred approach, among others. Looking ahead, further investments will be needed to deepen and connect efforts to orient policy and service reforms towards person-centred, inclusive, quality, tech-enabled services and systems that effectively support the right to live independently and being included in the community.
If used for the right purpose and if well integrated into a system that truly seeks to support all people, technology can positively support the transformation of power relations in care towards more citizen control and better access to services for all. It requires consulting older people, especially those most at risk of being left behind, about what they want, and co-producing solutions together with formal or informal care workers. In another words, embracing technology as a contributor in systems that are conceived with and for people. We owe it to our grandparents, parents and ourselves, ageing day by day, to anticipate and purposefully design and control how smart societies will support our rights and autonomy tomorrow.