The emancipation of disability studies in Portugal

Despite the interest of the social sciences in issues of exclusion and inequality, the question of disability, as a key issue of reflection, remains absent from many academic areas. The emergence of disability studies owes much to contexts in which the activism of disabled people has revealed the structural conditions that oppress and neglect experiences of disability. Bearing in mind the specific features of the Portuguese socio-political environment, two lines of inquiry are developed in this text. Firstly, what are the challenges faced by Portuguese academics in making disability a central issue, enabling it to confront the silencing of the voices and experiences of disabled people in society? Secondly, how important is it for research to engage with an ethical and political paradigm that supports the rights of disabled people?     

The exclusion of older people in disability activism and policies — A case of inadvertent ageism?

Using Sweden as a case, the article discusses the tendency within disability activism and policies to overlook elderly people. From an analysis of a major Swedish government investigation on disability it is clear that disability policies in Sweden have come to rest upon stereotyped age norms that divide the life course into set stages, and there has been a tendency to define elderly disabled people as elderly rather than disabled. It is argued that this exclusion is partly the result of a successful endeavor to provide disabled people of younger ages with rights that are typical of non-disabled citizens. Justice and equality have been defined in comparison to citizens of similar ages: children, youth and adults of “active age”. Based on the analysis of the paper it is argued that activities of movements struggling to liberate oppressed populations may contribute to ageism, and that anti-ageist research must go beyond the idea that ageism is a simple matter of attitudes towards older people.     

Female researcher safety: the difficulties of recruiting participants at conventions for people with dwarfism

Disability research often favours the use of disabled researchers carrying out research with disabled participants. It is believed to empower disabled people and create results that are more valid. However, little consideration has been given to the ethical implications of this type of research process, including in relation to female researcher safety. This paper provides an autoethnography of my experience of being sexually assaulted when recruiting participants for my doctoral research, at a convention held by an association for people with dwarfism (The term used to refer to someone with this impairment often differs. In this research project terms participants preferred included; dwarf, person with dwarfism, short stature and restricted growth. I use the term ‘person with dwarfism’ as it fits in with the social model of disability by demonstrating that a person is ‘dwarfed’ by a built environment, which is constructed for the average sized person and is therefore disabled). Focusing on gender, disability and sexuality, situated in space, this paper explores the problems encountered when trying to recruit participants within a particular space. This paper suggests that the safety of the researcher, needs more consideration and offers recommendations to increase researcher safety.     

Autonomy in Everyday Life,for Whom?

A disability reform came into force in Sweden in 1994 which emphasises the importance for disabled people to increased autonomy and self determination in everyday life. Interviews with disabled women and men have shown that while there are those who, because of the legislation, have increased control in their everyday living, there are also those who in no way have benefited from this reform. Some of the disabled participants have not even heard of the legislation before the time of the interview. They are in a situation that they require support, which they do not have, in order to apply for services of their choice and, if necessary, appeal against 'negative' decisions with regard to the applied for services. The paper concludes with a discussion about the Janus-faced nature of individual rights.     

Public health,research and rights: the perspectives of deliberation panels with politically and socially active disabled people

Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.     

Risky bodies in risky spaces: disabled people’s pursuit of outdoor leisure

Risk is used to deny disabled people access to many parts of mainstream life. Using qualitative data we explore disabled people’s views and experiences of outdoor recreation, bringing together ideas from two areas of sociology – disability studies and risk using the concepts of edgework and psycho-emotional disablism. Many people felt that the outdoors represented a risky environment. For some, risk was one of the main drivers for going out into the countryside; whilst for others, risk was a major cause of their reluctance to venture into the countryside. Engaging in risk both can disable and can challenge disablist views.     

Making disability conferences more actively inclusive

In this article I explore how generic disability conferences can become more inclusive of participants with intellectual disability. Increased inclusivity entails adapting to the support needs of people with intellectual disability, in line with the principles and practice of inclusive research. In the article I consider three specific areas where there can be more inclusion – access to information related to the conference, access to knowledge imparted during the conference, and financial issues. While many good practices have been developed in these areas, it is important to ensure that inclusion is catered for in a systematic and pro-active manner, so that people with intellectual disability have increasingly more meaningful and active roles within disability studies and disability research.     

Physically disabled women and sexual identity: a PhotoVoice study

The issue of sexuality for young disabled women is not often talked about in society. Our study aimed to explore four young physically disabled women’s experiences and perspectives regarding sexuality and disability. We used PhotoVoice, a participatory action research method which uses photographs, to capture and convey our participants’ concerns. Through their photographs they showed that everyday interactions with others, particularly strangers or meeting people for the first time, were made difficult by how they were always seen as having a disability. Other parts of their identity were not recognised. The change the young women wanted was for people to see them as young women and not just as disabled.     

Seeing the Invisible Children and Young People Affected by Disability

This paper presents a brief review of literature relating to children in families with a disabled member, including the 'young carers' and disability studies literature, and relevant works from the social psychology and sociology of childhood. Key themes identified in the literature are then illustrated by findings from two exploratory research studies that sought to explore the experiences and service needs of children in families with a disabled member, within two Scottish areas. The authors suggest that, although young people affected by disability in the family, including young carers, face significant problems, particularly in socially disadvantaged areas, there are other issues that need to be addressed. Alternative conceptual frameworks are proposed, which challenge the dominance of the young carers research paradigm.     

Telling about something that you do not really know: blind people are talking about vision!

In Turkey, the laws which define disability have become increasingly harsh, and require disabled people to be assessed in order to determine ‘how disabled’ they are. For blind people, as for other disabled people, these assessments have real consequences. This article aims to discuss an appealing piece that arose during a project, which has bearing on how disabled people tend to answer these questions. The participants are legally blind adults. We, as sighted researchers, asked totally blind individuals to describe their vision. Interestingly, they all answered this question without hesitation. The paradoxical nature of this question was only realized during the analysis. We requested the participants to talk about something they do not really know. This might be a reflection of our over-visualized world and might be due to our subtle prejudices. This type of questioning not only has implications for research, but also for assessments of disability in Turkey.     

‘Unjust,inhumane and highly inaccurate’: the impact of changes to disability benefits and services – social media as a tool in research and activism

This article details research carried out as part of an MA in Social Research at the University of Leeds (UK). The research was concerned with two key issues: documenting the impact of recent cuts in benefits and services on disabled people; and the role of disabled people’s organisations in responding to this impact. It also explored the use of social media in recruiting research participants. Working with Hammersmith and Fulham Action on Disability, the experiences of 95 disabled people were gathered using focus groups and an online questionnaire distributed via social media. The use of social media to gather participants is something I felt was particularly interesting in relation to disabled people, especially in light of social media’s role in current disability rights campaigns, and a method I feel should be explored further.     

We did it together: a participatory action research study on poverty and disability

This article presents the perspective of both non-disabled and developmentally disabled people working together in a research project on poverty and disability. Our study used a participatory action research approach that challenges the norm of exclusion in the research process. Control of the research agenda has been inclusive and shared to varying degrees in accordance with the needs and desires of the members of an advisory committee of developmentally disabled people living with low income. We reflect on our process of working together according to four principles of participatory action research with disabled people. We discuss our successes and challenges enacting these principles in the hopes that future researchers can build upon our experience to be more inclusive of developmentally disabled people in their work.     

Tensions and unity in the struggle for citizenship: Swedish disability rights activists claim ‘Full Participation! Now!’

This article analyses the claims of contemporary disability rights activists mobilising in a context where de facto second-class citizenship co-exists with legal and political declarations about the rights of disabled people. As an empirical case, it focuses on the blog ‘Full Participation.Now’, which was initiated by disability rights activists in Sweden. Drawing upon citizenship research, the article points to the tensions and dilemmas featuring the bloggers’ demand for participation and equality, as well as the challenges relative to their struggle. Although the bloggers formulate contrasting arguments, the article highlights that the activists share a common aspiration for ‘full citizenship’.     

Counselling Disabled People: a counsellor's perspective

For many years professionals have assumed that disability is a problem for impaired individuals and that it is the disability that causes emotional or psychological problems. Whether this is true and whether a specific model of counselling is needed to help disabled people to cope with the emotional effects of their disability has not been widely researched and this is examined in this piece of research. The causes of psychological distress are discussed and the ways in which counsellors work are studied. Using a grounded methodological approach, disabled and able bodied counsellors of disabled people were interviewed as this was considered to be the most sensitive way of exploring this area. The findings show that more often than not it is the client's lack of control over their physical and social environment and not the impairment that causes emotional difficulties. Counsellors indicated that, through the facilitation of counselling, a sense of self empowerment in practical, emotional and social areas could be achieved and this was the central theme emerging as the most distinctive aspect of counselling clients with physical impairments.     

Epistemological journeys in participatory action research: alliances between community psychology and disability studies

This paper seeks to explore emancipatory disability research possibilities through the use of participatory action research and the cross-fertilisation of ideas between British disability studies (DS) and community psychology (CP). First, we consider the psychology in CP and suggest that it is far removed from mainstream psychology's pathological vision of disabled people. Second, we draw on Burrell and Morgan's (1979) model of paradigms to interrogate research practice in DS and CP. Third, we compare and contrast research narratives from DS and CP through reference to some examples of our own research. We argue that CP pays particular attention to the development of community selves and cultural identities within the participatory action research process: which we feel to be a key concern for the development of an emancipatory DS. We conclude that recognising the radical humanist element of participatory action research (PAR) permits us to navigate an enabling journey for disability research.     

Harried by Harding and Haraway: student–mentor collaboration in disability studies

Exploring the friendships of disabled youth in forthcoming doctoral research raised many unsettling questions. Members of academic and disability communities thoughtfully asked how the researcher could legitimately understand, interpret and represent the experiences of disabled youth. The initial impulse was to rely on nearly two decades of clinical practice with children and youth with disabilities; however, the futility of this strategy quickly surfaced. Uncertainty about how to proceed arose. A colleague and mentor suggested that a careful reading of Sandra Harding, Donna Haraway and Mats Alvesson and Kaj Sköldberg might provide the conceptual tools required to address these concerns. This paper presents a student’s stumbling, hesitant and sometimes ‘harried’ attempts to grapple with their unfamiliar arguments while simultaneously exploring tentative connections with disability studies. The evolutionary cycle of queries, responses and reflections from a series of e‐mails demonstrate a transition in thinking about research and representation.     

Personal and Political: A Feminist Perspective on Researching Physical Disability

Feminist theory and methodology have much to offer in understanding how disability research has been experienced as alienated research by disabled people. However, feminist research has failed to apply its principles to disability and disabled women's subjective reality has found no place in mainstream feminist work. The paper identifies the challenges for feminism in addressing the interests and reality of disabled women, asserting that it is not helpful to focus on 'double disadvantage'. Disability research itself has much to learn from feminist methodology, in particular the principle of making the personal political. The role of non-disabled researchers as allies of disabled people is discussed, and the importance of research which turns the spotlight on the way in which non-disabled society oppresses disabled people. Finally, it is asserted that disability research and politics are of general relevance because the experience of disability is an integral part of a society characterised by fundamental inequalities and ideologies which divide people against each other.     

The Researched Opinions on Research: disabled people and disability research

Thirty-five disabled people with a range of physical, sensory and mental impairments were interviewed about (1) their experiences of research; (2) their general opinions concerning research; (3) whether they thought research had served/was serving disabled people well; (4) how research on disability should be conducted; (5) who should conduct research on disability; and, finally, (6) what they would like to be researched. In this paper, the results of aspects two to five are reported. It was found that the opinions of disabled people mirror quite strongly the recent arguments forwarded by disabled academics concerning the need for emancipatory and empowering research strategies. In particular, the respondents articulated a need for inclusive, action-based research strategies, where disabled people are involved as consultants and partners not just as research subjects, There were few arguments, however, for an exclusive approach, where disability research would be conducted solely by researchers who were themselves disabled.     

Navigating the ethical maze in disability research: ethical contestations in an African context

Despite changes in how disability is viewed, ethical requirements for disability research have hardly changed. Some ethical clearance procedures, processes and practices still consider persons with disabilities as not able, creating unease among researchers and research participants with disabilities themselves. This paper considers five ethical contestations arising from research in the area of disability in an African context: positionality, vulnerability, signed consent, anonymity, and research committee composition. We argue that ethical requirements in practice are still largely based on a medical model of disability and propose that culturally sensitive social and human rights models should influence disability research ethics.     

Fatness as a disability: questions of personal and group identity

Both fat people and disabled people share common barriers to full societal participation and acceptance. While there has been a substantial amount of literature relating to these two groups as separate entities, there is a lack of contemporary research that investigates the relationship between fat and disability identity formation. The purpose of this qualitative study was to engage in a dialogue with fat individuals and explore the construction of their identities – whether or not they identified with having a disability and, if so, whether or not they viewed their fatness as a disability. Interviews with a sample size of seven participants who self‐identified as ‘fat’ revealed an unwillingness to adopt a disability identity based on their fatness.