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Joan Antoni Guerrero Vall
Innovation and research are putting disabled, chronically ill and elderly people at the centre so that their needs are better met
The initiative seeks to promote transdisciplinary research on human beings' ability to cope with the physical, mental and social challenges that affect the more vulnerable members of society
According to the experts, any one of us can be affected at some time in our lives by disability, chronic diseases or ageing with functional limitations. The goal is to "put more life in our years"
The UOC and the Spanish Confederation of People with Physical and Organic Disabilities (COCEMFE) will start the new COCEMFE-UOC Chair in Personal Autonomy and Digital Health in 2021. Its goal is to advocate the concept of personal autonomy to facilitate decision-making and independent living during all stages of life.
The new Chair will work to eradicate the stigma commonly associated with disabled people, from the understanding that anyone can experience periods of functional limitation at some time in their lives. According to WHO, we are only fully independent during 60% of our average life span. During the remaining 40%, we are impaired by illness, accidents, age, recognized disability or functional limitations.
Accordingly, the Chair proposes to research how healthy habits, technology and social factors can help improve lifelong autonomy. The goal is to live life to the full for as long as possible and delay institutionalization.
A vision that goes beyond the dichotomy generated by the concept of disability-ability. As the International Convention on the Rights of People with Disabilities tells us, the necessary support to ensure that everyone can have the same opportunities and live a full life must come from within society itself.
COCEMFE Barcelona's involvement in the Chair is important, given its role as leader and promoter of knowledge on the subject and its direct connections with organizations that work with disabled people. The new Chair was presented at the Workshop on the Right to Personal Autonomy, organized by Barcelona City Council to commemorate the International Day of Persons with Disabilities, on 3 December.
The new Chair's academic director is UOC eHealth Center researcher Manuel Armayones, holder of a PhD in Psychology. The initiative will put the focus on a new gaze: Armayones explained that many people do not know that the Spanish law of 2006, popularly known as the "dependence law", is actually called the "Law to promote autonomy in situations of functional limitation". As Armayones highlighted: "Personal autonomy refers to people's need to be able to choose how they want to live, what they want to do with their lives and what decisions they want to make". As with the concept of health, he also viewed personal autonomy as a "continuum", since "during our lives we go through periods of greater or lesser dependence".
Guided by this idea, the new Chair, affiliated with the eHealth Center, will ask a number of significant questions, one of which will be "how technology can be used to enhance the perception of maximum possible personal autonomy," Armayones said. The challenge is to see "how we can use this technology at different times of our lives to guarantee that each one of us attains and maintains the greatest possible level of autonomy". Here, the idea would that technology would not just be used "on a physical level" but would also help "people feel more independent and capable". Armayones advocates a concept of health which goes beyond WHO's definition as "the absence of disease", conceiving it as "our ability to cope with all the physical, mental and social challenges that we face during our lives". As the Chair's academic director insisted: "We don't want to just be healthy, we want to feel well, and that feeling well is conditioned by many social factors".
In this sense, health is a basic component of personal autonomy, Armayones explained. The researcher stressed that it is necessary to broaden the gaze in the use of the new technologies and develop applications with the aim of making them accessible for everyone: "We tend to divide people into two categories, able or disabled; perhaps it may be useful for public administrations to calculate a percentage of disability associated with a particular level of financial support, but life is much more complex". The Chair aims to subvert this dichotomy and focus "all effort on keeping people as autonomous and healthy as possible". This, Armayones added, is related with the concept of "salutogenesis, in other words, our focus is not so much on what makes us ill, not even on what makes us better, but on how we can stay healthy". "We want to break this separation between disability or non-disability, and between healthy and non-healthy; the reality is that we are constantly moving along a continuum," the researcher reiterated.
The goals pursued by the Chair closely align with many debates that have been opened as a result of the COVID-19 pandemic. Faced with the limits imposed by governments on the free movement of people, that is, everything that people are allowed or not allowed to do at a given time, personal autonomy in a lockdown situation is a crucial issue. The initiative proposes a transdisciplinary endeavour, as the questions that must be answered "are relevant for everyone". "We must work with humility, because everyone must make their contribution. It is not just about doing things for disabled people, but doing things with a little common sense, because that can create opportunities for building a more accessible society, with more autonomy for everyone," said Armayones.
2021 work plan
The new Chair has already drafted a first work plan for 2021, consisting of six initiatives. One of them is to design a School of Life based on a UOC innovation project that involves the intensive use of technology as a tool for citizen empowerment. A research project is also in the works with COCEMFE and the Barcelona Municipal Institute of Disability on unwanted loneliness, disability and health. The proposal is also on the table to design a Habits Workshop on physical activity and disability, specifically targeting the COCEMFE organizations. The Chair will also design co-creation seminars on topics related with personal autonomy and e-health. In addition, it will promote a collection of books on the subject with EDIUOC and will propose a communication strategy for the Chair, using a website and social media to disseminate projects and results.
Antoni Serratosa, a member of COCEMFE Catalonia's Governing Board, highlighted that the new Chair is the culmination of a collective effort made by many people. Their contributions were channelled through the scientific committee led by Manuel Armayones and the associations affiliated with COCEMFE and the Spanish pensioners' confederation Mayores UDP and presented at the 1st National Congress on the right to personal autonomy: disability, ageing and chronicity, with Serratosa as the congress's commissioner. This congress was held in Barcelona on 21 and 22 October 2019. Serratosa pointed out that, during the COVID-19 lockdown, a series of contributions were made to the Pact for Barcelona related with innovation and collaborative work among the different stakeholders. "The outcome of all this," he underscored, "is the wish to continue working together through this Chair to offer innovative solutions to increase people's autonomy and delay their institutionalization".
Record number of disabled students enrolled at the Catalan universities
The new UOC-COCEMFE Chair comes with the confirmation that the number of disabled students enrolled at the Catalan universities is the highest since the register was created, in 2002. During the 2018/19 academic year, 3,684 students with some kind of disability were enrolled at Catalan universities. Of these, 1,640 were studying at the UOC.
Manuel Armayones Ruiz
Lecturer in the Psychology and Education Sciences Department
Researcher of the eHealth Center
Expert in: E-health; the Internet and health; e-patients; health in the future; the psychological impact of ICT; patient social networks; addiction; the Internet and new technologies; health and robotics; rare diseases and the Internet; online psychological intervention strategies; rare diseases and ICT.
Knowledge area: eHealth, eSalut, health and ICTs.