‘Design is not just what it looks like and feels like. Design is how it works.’ These words from Steve Jobs have echoed as my mantra to creating new ‘assistive technologies’ from research since the moment I picked up my first iPod in 2002 and wanted to understand why this technology and the iPhone and iPad that followed have been so groundbreaking, that globally they been adopted into mainstream life. Technically these wonderful ‘gadgets’ can be classified as assistive technologies, yet we don’t perceive them in the same light as the cold, often elusive umbrella term that we use to define a range of applications to support individuals with various disabilities. Why? Because we see them as facilitators to improve our lives, not as a crutch or something that will play negatively on our self-image and consequently any perceived stigma we may feel to living with a disability. This is the essence of great assistive technology design, that we understand and develop positively the experience of the user, through technology that does not cause increased stigma or social exclusion for any disability.
Diagnosed with multiple sclerosis in her late 20s, my grandmother spent six decades battling the condition that left her paralysed from the waist down. At the age of fourteen, I popped in to see her after school one day and explained I was interested in studying psychology. With the scene set, I plucked up the courage and said ‘Granny, you haven’t walked in years (nearly 40 at that point), how do you cope?’ She looked at me, smiled and said, ‘John you may not have seen me walk and many haven’t, but in my head I can run.’ And it hit me, that I had wrongfully judged her experience of living with a disability on my perception of the condition, rather than her reality of the experience. This conversation shaped my career to understand perceptions behind illness and disability and how we can use models of behavioural change with effective AT to improve the lives of these disabled and/or chronically ill individuals.
As researchers we need to ask, ‘How do we make people feel more confident using AT?’ Core to answering this question is the ability to provide an empowered, personalised experience through the use of the technology. Indeed, successful technologies will always aim to provide great experiences as part of their intended outcome to improve the lives of individuals. The aim of assistive technology development in ID, as we progress into an era of connected and mobile health, should be to translate AT research to practice to improve and empower the lives of people with intellectual disabilities in all domains including education, health, recreation and employment—as well as advance and maximise the opportunities for social inclusion, active citizenship and independent living. In essence we need to capture the complete living experience. This is in line with ‘UN Article 26 – Habilitation and Rehabilitation’, which promotes that all appropriate measures should be used to enable persons with disabilities to attain and maintain maximum independence, full physical health, mental health, social and vocational abilities including improved social inclusion. It further states that all measures should be used to ‘promote the availability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation’ as part of a person’s experience of daily living.
To successfully achieve this vision, we face a number of key challenges. Firstly, design must involve understanding of a person’s biological/functional, social and psychological needs, as well as the environment or context in which the technology is to be used. Secondly, we need to create technologies that provide a personal experience; the catch, however, is that we also want to design for widespread adoption and use. Thirdly, the technology must be able to assist lifestyle modifications and change behaviour. Finally, to ensure societal adoption, the design and development of AT must not be done in a silo around the personal user, but delivered as part of a model that links in with key stakeholders in the user’s ecosystem—including health services, family and community-based supports.
In the world of ‘smart’ technologies (such as the iPhone) the opportunity has never been greater to collect and analyse data in ‘real time’ to better inform our knowledge of this ecosystem and the experience of individuals living with disability. Collecting and understanding this wealth of new data will allow researchers and technology developers to maximise and refine better assistive technology (AT) use, as well as to predict and overcome any barriers to adoption of the AT, which will hopefully create new sustainable and scalable ecosystems of AT use in ID.
Finally, a recent Irish example of the use of a simple website as an assistive technology to understand the experience of the individual with ID was created by the IDS-TILDA (Irish Longitudinal Study on Ageing – Intellectual Disability Supplement) team led by Professor Mary McCarron, at Trinity College Dublin. Stemming from a project entitled ‘Scenes of our Lives’, which asked individuals to use art to express their experiences of living with ID, the IDS-TILDA homepage (please visit: www.idstilda.tcd.ie) was transformed to create an accessible website to provide information on diet and health, employment, learning, health services, exercise and social connectedness (‘keeping in touch’) for individuals with ID. This is important, as the 2011 wave 1 of the IDS-TILDA report showed that out of 743 individuals with ID over the age of 40, 56.5% had not received easy-to-read information on keeping healthy; 69.1% had never received easy-to-read information on healthcare services; and 75% never wrote, texted or used social media. Uniquely, the project focused on peer learning as a motivational tool for people to engage with the site, as individuals with ID acted out scenarios to scripted pieces from their common experiences. This project provides a great example of a simple AT platform providing much needed and relevant information to individuals, shaped and delivered by their experiences.