Social Lives
Author: Mohamed Maalim – PhD Researcher at the ALL Institute, Department of Psychology, Maynooth University, and Senior Occupational Therapist at Stewartscare
Persons with disabilities, people with functional limitations resulting from chronic conditions, and older adults often experience physical, psychological, and social challenges restricting their participation in society. Moreover, individuals with disabilities often experience direct and indirect societal discrimination, as mentioned in the report Disability and Discrimination in Ireland. The right of the person with disabilities to the full and equal enjoyment of all human rights and fundamental freedoms, as well as to the protection and promotion of their inherent dignity and respect, is enshrined in Article 1 (Purpose) of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)
The Global Report on Assistive Technology (GReAT) launch recognises Assistive Technology (AT) as a significant measure and a precondition for promoting the fundamental rights of people with disabilities and advocates for equal enjoyment of human rights as per the provisions of the Convention. The value of AT as an enabler for participation and the realisation of people’s social, economic, political, and cultural pursuits has frequently been championed by the World Health Organization (WHO) and advocated through the Global Cooperation Assistive Technology (GATE) initiative. Notwithstanding the benefits of access to AT, matching the right AT with the person and user acceptance and satisfaction with the AT is paramount to ensure the use and are not abandoned. The reasons identified in the literature for AT abandonment include a lack of accessible environment for AT use and the stigma associated with AT usage because it may project vulnerability. Additionally, multiple factors may influence AT acceptance, including personal choice and social-cultural influences resulting in social exclusion.
An essential element of my discussion here is the influence of the broader theme of AT acceptability and, more specifically, how aesthetics is a core factor for optimising AT benefits and reducing AT abandonment. A clear example of the importance of AT aesthetics from a personal choice, freedom, and social inclusion perspective is the proliferation of mobile phones and wearable technologies. The opportunity for customisation of these technologies leads to feelings of self-identity and self-expression for the user. Similarly, incorporating aesthetics and individualised design features for the devices that society more commonly views as signifiers of disability, such as wheelchairs and canes, enhances users’ self-confidence, self-expression, and identity.
As a practicing Occupational Therapist, I often support my clients in accessing AT in general and, more specifically, assessing and recommending functional mobility devices such as wheelchairs. As a holistically focused discipline, Occupational Therapy is a profession that adopts a philosophical and practical perspective, using person-centred ideology to support people in doing what they want or need to do. However, practitioners like myself are sometimes hampered by systemic constraints such as low staffing, inadequate funding, and procedural red tape. Consequently, we tend to focus on function over form, thus reducing our interactions with clients to superficial encounters that lack the holistic approach we purport.
The process of accessing AT is designed, and still operates from, a medical viewpoint and has been slow to adapt to the progressive focus adopted under the UNCRPD. We often, for instance, focus on wheelchair functionality such as comfort, positioning, and functional mobility requirements, which, albeit very important, are not as holistic as our profession demands. We neglect other personal preferences such as the device’s aesthetics and outward projections as valued by the user. In doing so, we contribute towards the abandonment of the device, which would impact the user’s lifestyle and ultimately has huge substantial cost implications. By operating in this way, we inadvertently contribute to systemic discriminatory practices.
As part of my ongoing PhD research project, I explored people’s lived experiences of access to AT. One of the issues highlighted was the lack of user engagement and consideration of people’s needs and preferences in the provision of AT. The participants expressed issues with, for instance, limited wheelchair choices in the market as one of the factors that some AT personnel, including Occupational Therapists, quote to justify the provision of substandard devices. Additionally, the AT personnel would intensely focus on the functional elements of the devices and would sometimes disregard users’ explicit preferences regarding the functionalities and aesthetic requirements of the seating systems they need. The AT users strongly emphasised the significance of AT aesthetics in terms of the confidence and self-identity traits it provides. Furthermore, incorporating personally appealing features, especially for wheelchairs, was reported to translate into user satisfaction and peoples’ feeling of social inclusion due to societal expectations. Contrarily, disregarding the task of appropriately matching a person with the right AT leads to a considerable waste of time and financial resources and, above all, impacts users’ quality of life.
Consequently, AT, with all its benefits, including enabling participation in various aspects of life and promoting equal enjoyment of human rights, requires adopting a holistic approach to its access. Societal barriers, including non-participatory medical model approaches to AT provision systems, could further marginalise people who may benefit from it. The GATE initiative identified the five strategic pillars to access AT comprising ‘Person, Policy, Products, Personnel, and Provision (5P)’ with the person (P) placed at the core of AT decision-making process. Therefore, I appeal to my professional colleagues, and everyone involved (Personnel) in the facilitation of AT (Product) Provision to carefully reflect on our practices and ensure the inclusion of users’ needs, preferences, and contextual factors (Places). We have an opportunity to positively and collaboratively work with users and potential users to end systemic discrimination and ensure the benefit of AT, as ‘written on the tin,’ is realised by all.