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A novel approach to disability studies
Full Professor Iscte Sociology and Public Policy
Researcher CIES-Iscte
Coordinator Disability Studies Centre
The area of Disability Studies and Human Rights is one of the most recent in Iscte's research and specialised training. For the team that organises it, public policies influence the lives of people with disabilities.
What need does the Centre for Disability Studies within Iscte fulfil?
The Centre came about because Iscte has the knowledge, ability, resources, and tradition to extend its disability studies from a human rights perspective. It is an opportunity to develop a critical research, teaching, and service provision area. Iscte has this tradition, from the time when Professor João Ferreira de Almeida and I were involved in drawing up the technical proposal for the National Rehabilitation Plan in the early 1990s to the evaluations of programmes working in the field of disability, such as Horizon (1991/1999) and Integrar. Later, other studies were conducted with the Gaia Vocational Rehabilitation Centre on integrating people with disabilities.
This "tradition" developed even further with a doctorate defended at Iscte, which had disability as its theme and early intervention as public policy 1. There is also a series of studies that we have been conducting with an institution called Inovar Autismo, such as the evaluation of the European project "Young Mediators for Inclusion" and others. This project promotes the participation of children/young people with autism in activities developed by community structures on an equal footing with their peers through the support of "young mediators for inclusion". We have taken part in the construction of tools for integration, such as the "Human Rights Kit" - Portugal Inovação Social or "Digitool" - Digital Inclusive Tool, and in a more extensive study: the evaluation of the Independent Living Support Model (MAVI).
MAVI is an innovative policy with immense potential for people's lives and social security, creating a dynamic that Iscte's rectory has now decided to develop and extend by promoting the Centre for Disability Studies.
1 "Public policies and the quality of life of families with children with autism: the case of early childhood intervention". PhD thesis by José Miguel Nogueira, defended on 6/3/2019, under the supervision of Luís Capucha.
Concerning MAVI, was Iscte's intervention to evaluate its application?
Exactly. The Independent Living Support Model is guided by a new generation of public policies geared towards fulfilling human rights and promoting people's autonomy. It is a policy that puts a disabled person in a relationship with a support person or a personal assistant so that they can make up for some of the shortcomings in a wide variety of areas: transport, leisure, work, and education. Disabled people often solve the problems resulting from their disability simply by having the support of a person who helps them carry out a range of tasks. This policy is still in its infancy; it has been under development for less than five years, although there has already been some consolidation of the model, and it has been evaluated to see its potential development. The main conclusion of the evaluation is that the policy has been fundamental; it has effectively changed the lives of people and their families, making it possible for people to return to work and to have leisure time, in short, basic things that both disabled people and their families have been finally able to do.
Some aspects could be improved regarding salary, the development of the personal assistant profession, and how the service is provided. However, there is a remarkable consensus that this project is fundamental and that this policy can fundamentally change people's lives.
From the point of view of the methodology, what stands out?
This evaluation project was also exciting. I say this from the point of view of a researcher and the point of view of the methodology. We surveyed disabled people, carers, families, and technicians. We went through the system with high participation rates, over 90%. Moreover, we followed a principle: that no one answers for anyone. In other words, people with disabilities, if they were cognitively able to answer, would answer without technicians or family members speaking "on behalf of" them. It was an important innovation from the point of view of scientific methodologies.
Another rare aspect is that all the instruments were discussed in detail with the technicians involved and the people who were the beneficiaries of the measures. We checked these instruments with people once we built the survey tools based on our expertise. It allowed us to do two essential things: firstly, to confirm that people trusted that the right questions were being asked and, therefore, that they were not omitting essential aspects, and secondly, that all the questions were there and that the questions could be formulated in such a way that they were understood by everyone, without misunderstanding or doubt. This methodology was implemented not with a small group but with the whole universe of people. The process of participating in the construction of the survey tools was fascinating, and it was rigorous from a scientific point of view.
A new generation of public policies is oriented towards fulfilling human rights and promoting people's autonomy.
How is the Centre for Disability Studies planned to develop?
The Centre is conveniently located at CIES and the School of Sociology and Public Policy. However, it is a very open structure, as people not from Iscte are already participating. We held an initial meeting with more than 20 people interested in participating in the centre's specific activities, and we held the first International Seminar in May, which was very well attended. I am pleased to note that there is a great diversity of people joining: from the fields of medicine, biomedical sciences, neurology, law, psychology, architecture, social work, sociology in different branches, and people from the arts. It makes it possible to envisage a significant multidisciplinary development in studying this social problem.
They, therefore, opt for a very open approach.
All social problems always benefit from contributions from different scientific areas. That is how we build multidisciplinary objects, such as those that concern the transition between cycles in people's lives instead of just studying the family, the city's architecture, illness, school, work, and rehabilitation. Transitions are always moments of crisis. For example, how does the transition from family to school take place? And at school, between cycles? People will organise themselves according to their study area and develop applications for national and European funding programmes. We are also available to respond to any external requests and lend our academic expertise to the service of social integration and human rights policies.
The Centre also has two other areas: education and the dissemination of knowledge.
Research is the central dimension of the Centre for Disability Studies, but we have an area in which its direct consequence is disseminating scientific knowledge. Two conferences are planned for 2023. In May, we are organising a discussion on the Independent Living Support Model, its autonomy and its potential. Later in the year, we will dedicate another international conference to education issues. We also have a teaching programme, and applications are open for a postgraduate course. We are full of ideas and initiative. It has always been Iscte's prerogative to innovate in research and teaching. In our country, there is still a massive deficit in this area of science in universities. Foreign universities already have a disability studies area, but only one or two researchers are doing scattered, isolated things in Portugal. At the Centre, we can produce scientific information that can be used universally, monitor policies and leading indicators, and provide annual reports on developments in this area. We know that there is a trade-off between knowledge and public policies, and therefore, the more knowledge there is in these areas, the greater the tendency for good social policies.
The postgraduate course "Disability Studies and Human Rights" aims to prepare technical professionals, recent graduates who want to professionalise in the area, and leaders of public bodies, local authorities, and social solidarity institutions. The course is the first postgraduate course in Portugal to be accessible to deaf people and people with other disabilities, which is a clear sign of its inclusive logic.
How is the Disability Studies Centre organised?
The Centre will be joined by an Advisory Board, to which we will invite municipalities, associations standing for the sector and the public bodies that manage policies (ISS, INR, and others). We want the Centre for Disability Studies to be a space for meeting and collaboration, a space that lives off the initiatives of individuals or institutions, and a space for meeting and sharing for people working in this area. We are open to suggestions for work proposals and to transferring knowledge. We will also apply for an online course, including for people with disabilities, as it is always part of our plans and our way of working. We want them to join the Centre and take an active part in it at all levels.