Learning Disabled People Research Articles

Building Community Through Queer Learning Disability Amateur Filmmaking: Oska Bright Film Festival and Queer Freedom

Much has been written on the intersection of disability and sexuality since the publication of <i>The Sexual Politics of Disability</i> (Shakespeare et al., 1996), however scant literature refers to these issues as represented on the screen, where it can be argued representations have the most power to shape perceptions. Disabled characters in media narratives are invariably represented as lacking in any sexuality or negation of heteronormative gender and sexual expressions.<br /> In 2017, Brighton-based learning disability film festival Oska Bright (OBFF) launched their Queer Freedom (QF) strand as an intervention in this lack of queer representation within learning disability narratives. In 2017 and 2019, QF featured films made by or featuring queer people with learning disabilities and autism, including Glasgow-based queer femme filmmaker Mattie Kennedy. Devised by OBFF Lead Programmer and queer filmmaker Matthew Hellett after meeting Kennedy at a previous OBFF, Hellett believed he had a responsibility to create a space for these unheard voices.<br /> This article mobilises Bonnie Honig’s feminist refusal method of inclination and bell hooks’ theory of talking back to explore how OBFF and QF have enabled Kennedy and Hellett to create space and claim their visibility as queer learning-disabled filmmakers through a process of mutual affirmation. Learning-disabled people have historically been segregated from society, so in the spirit of Foucault’s heterotopia, by coming together to form a community of people who affirm and encourage other queer learning-disabled people to make their voices heard, they are refusing their assigned societal segregation.

Getting inside histories of learning disabilities

ABSTRACT This paper reports on the novel methodology used in a participatory project called ‘Inside the History of Learning Disabilities.’ Through engaging learning-disabled people as co-researchers with valuable insider knowledge and expertise to share, the project sought to disrupt hegemonic discourses around both the history of ’learning disabilities’, and of the lived experience of learning disabilities today. The overall objective was to make an important contribution to the growing field of interdisciplinary and emancipatory research about learning disabilities. The year-long project used a bespoke, two-step methodology in addressing this objective, combining archival research with a series of participatory focused workshops. Traditional methods and academic expertise in archival research and textual analysis were combined with less orthodox approaches to elicit insider knowledge about learning disabilities, which was then expressed in a range of ways. These expressions provide preliminary indications of how emancipatory and transformational research aims may be met. The paper makes a contribution to the discourse around new and emerging action research methodologies which seek to promote social justice. It describes away to not only recognise and challenge the oppression and exclusion encountered by disabled people, but to advocate for appreciation of disability and the insider-knowledge learning-disabled people have.

Positive You: a self-advocate’s arts-based approach for building self-esteem

abstractPositive You is an inclusive arts project supporting learning disabled people to explore self-esteem through art-making. The project was developed by self-advocate Leah Jones who observed a gap in service provision after struggling with her own confidence and self-esteem for many years. This article has been co-written by Leah and her support Jade French using a life-story approach. Leah hopes that by sharing her story, this article will not only demonstrate the value of art-making in developing self-esteem, but also that learning disabled people can develop their own employment opportunities with the right support.

Citizenship and Learning Disabled People: The Mental Health Charity MIND's 1970s Campaign in HistoricalContext.

Current policy and practice directed towards people with learning disabilities originates in the deinstitutionalisation processes, civil rights concerns and integrationist philosophies of the 1970s and 1980s. However, historians know little about the specific contexts within which these were mobilised. Although it is rarely acknowledged in the secondary literature, MIND was prominent in campaigning for rights-based services for learning disabled people during this time. This article sets MIND’s campaign within the wider historical context of the organisation’s origins as a main institution of the inter-war mental hygiene movement. The article begins by outlining the mental hygiene movement’s original conceptualisation of ‘mental deficiency’ as the antithesis of the self-sustaining and responsible individuals that it considered the basis of citizenship and mental health. It then traces how this equation became unravelled, in part by the altered conditions under the post-war Welfare State, in part by the mental hygiene movement’s own theorising. The final section describes the reconceptualisation of citizenship that eventually emerged with the collapse of the mental hygiene movement and the emergence of MIND. It shows that representations of MIND’s rights-based campaigning (which have, in any case, focused on mental illness) as individualist, and fundamentally opposed to medicine and psychiatry, are inaccurate. In fact, MIND sought a comprehensive community-based service, integrated with the general health and welfare services and oriented around a reconstruction of learning disabled people’s citizenship rights.

Do we all agree what "good health care" looks like? Views from those who are "seldom heard" in health research, policy and service improvement.

ContextThe aim of this study was to ask whether there are shared ideas about what good health care looks like that apply across different populations and conditions. Do priorities among “seldom heard” groups differ from mainstream views and, if so, how might we understand these differences?DesignFocus groups were recruited with the help of our study patient representatives. Participants discussed and prioritized a set of eight “core components” of good care. We recorded and transcribed the data for thematic analysis.Setting and participantsWe recruited people who are seldom heard in health and policy research for separate focus group discussions (one each with illegal drug users, Irish Travellers, migrant workers, young men and learning disabled people). We also ran a reference group of educated, older adults and an online group with people with long‐term conditions.ResultsThere were few differences in what participants thought was important in health care but considerable differences in their expectations that they might personally receive good care. Differences related to participants' previous experiences. The drug users group reported particularly poor experiences and low expectations of good care.DiscussionDifferences in what is regarded as an entitlement or privilege in health care underline the persistence of structural and relational differences in how services are experienced. While we can be reassured that core aspects of care are similarly prioritized across different patient groups, including those who are seldom heard, a more intractable challenge remains: how to provide equitable health care for marginalized groups in an unequal society.

Exploring Partnership Work as a Form of Transformative Education: "You do your yapping and I just add in my stuff"

This paper details the work of a group of learning disabled people (people with intellectual disabilities) who contribute to the teaching of students undertaking a degree program at one of the UK's most elite universities. Traditional notions relating to knowledge production within academia are examined and we demonstrate how the participation of learning disabled people in classroom teaching challenges these. Drawing on the work of Freire (1972) the paper demonstrates how co-teaching by learning disabled people has a transformative impact on educational experiences. Finally, the current changes impacting the UK higher education sector are detailed and we explore how these changes are negatively impacting on courses that seek to move away from traditional approaches to pedagogy.

Ambiguity in practice? Carers' roles in personalised social care in England.

Carers play an ambiguous role within the personalisation paradigm currently shaping adult social care practice in England. Although carers have rights to assessments and support in their own right, these rights sit uneasily alongside the practices of assessment, support planning and personal budget (PB) allocation for older and disabled people. This paper reports how 14 dyads of older and learning disabled people with cognitive and/or communication impairments and their carers viewed the roles - desired and actual - played by carers in PBs. Interviews with carers and with older and disabled people were conducted during 2012 as part of a wider study into carers' roles in assessment, support planning and managing PBs. The interviews complemented a survey of reported practice in two English regions - interviews with adult social care services senior managers and focus groups with front-line care managers. Talking Mats(©) were used to support interviews with some service users. Interviews were transcribed and data analysed using the Framework approach. The interviews indicated that carers played important roles in service users' assessments and support planning, but were less likely to report receiving assessments or support of their own. While carers had the potential to benefit from PBs and support arrangements for service users, this did not reflect practice that aimed to enhance choice and control for carers. The paper draws on Twigg's typology of service conceptualisations of family carers and concludes that, despite the important social rights won by carers in England, current practice continues to regard carers primarily as a resource or a co-worker, rather than a co-client.

Social inclusion through football fandom: opportunities for learning-disabled people

In Britain, within the contemporary drive of using sport to tackle the isolation of socially excluded groups, association football (football) fandom has been implicated in many policy documents as a possible site for learning-disabled people to become more socially included. However, whilst there is some evidence of the benefits of playing football for learning-disabled people, there is little evidence to support these claims. Drawing on empirical data, this paper aims to provide a critical analysis of the opportunities to tackle social exclusion that football fandom provides to learning-disabled people. Evidence suggests that whilst football fandom offers social benefits to learning-disabled people – including a sense of belonging and a shared social identity – that go some way towards tackling their social exclusion, football fandom is unlikely to result in the ‘social inclusion’ characterized by the government.

Adult sibling experience, roles, relationships and future concerns – a review of the literature in learning disabilities

This paper provides a review of the literature related to adult siblings of learning-disabled people. Siblings of learning-disabled people are often looked upon as next of kin when older parents die; however, there is little research regarding sibling views and wishes. A literature review of published peer-reviewed empirical research was undertaken. Electronic databases and citation tracking were used to collate data using key terms such as adult siblings and learning disability. Relevant articles were analysed, compared and contrasted. Six key themes emerged suggesting a varied impact of learning disability upon sibling lives in areas that include life choices, relationships, identity and future plans. Some siblings report a positive impact upon life, others state their lives are comparable with other adults who do not have a learning-disabled sibling and others still report a negative impact. Sibling roles and relationships are varied. Evidence suggests that sibling roles, relationships and experience are affected by life stage. Parents often have a primary care role for the disabled person, whilst siblings perform a more distant role; however, sibling involvement often rises when parents are no longer able to provide previous levels of support. Many factors appear to affect the sibling experience and uptake of roles including gender, life stage and circumstances, level of disability, health status and relationships between family members. Siblings are concerned about the future, particularly when parents are no longer able to provide support, and many appear to have expectations of future responsibilities regarding their disabled sibling. As siblings of people who have a learning disability are often expected by society to provide support, it is important that health and social care practitioners are aware of issues that may impact on this relationship.

The importance of ethics

Applied or normative ethics is a branch of philosophy that includes righteousness, rules of conduct, virtues and ones responsibilities in actions, thinking, behaviours and relating with others. Ethics is extremely important in working in a practice or caring capacity, or in undertaking research with learning disabled people as it can offer guidance on what ought to be done in given situations.

Accountability: the ethics of devising a practice-as-research performance with learning-disabled practitioners

This article discusses the dilemmas encountered by non-disabled performance researchers and practitioners working with learning-disabled people. I demonstrate how the ‘accounts’ of empirical social scientists informed my PARIP [practice-as-research-in-performance] project, BluYesBlu, and how Judith Butler's reformulation of the concept of ethics, from the responsibility of the individual to negotiations within social relations, has revealed the complexity of the tensions between ‘othering’ and ‘normalising’ tendencies within this practice.

People with learning disabilities admitted to an assessment and treatment unit: impact on challenging behaviours and mental health problems

This study describes the evaluation of an assessment and treatment unit for people with learning disabilities. Results showed the main reasons for admission for the 48 people admitted to the unit were because of challenging behaviours and mental health problems. Valid and reliable scales were used to measure the behaviours and mental health problems of those admitted across three-time periods: pre-admission, during admission and post-admission. The analysis found significant reductions in challenging behaviours and mental health problems following admission to the unit. The unit was staffed by a multidisciplinary team with nurses making up the largest group of staff. A number of issues of concern are discussed including access to mental health services for people with learning disabilities, the need for robust community services and areas that require further research. In conclusion, the study found evidence supporting the value of the unit and how it may lessen distress in learning disabled people who are behaviourally disturbed. It is suggested that nurses played a key role in the unit but they need to make the support and caring they provide more visible. Nurses need to harness and make explicit the caring they provide for people with learning disabilities.

Special problems: Adults and elderly

Summary A first seizure out of a clear blue sky can be a major life‐changing event. Careful history‐taking and appropriate investigation together with a clear explanation provided to patient and family are an essential requirement. Although for most patients, pharmacotherapy can be withheld and events awaited, there are circumstances where introduction of antiepileptic drug (AED) therapy should be considered. Medical causes of seizures should also be sought and treated. In addition, a first seizure in HIV‐positive patients and in those with underlying neurocysticercosis should usually provoke the introduction of AED therapy. Particular problems can occur in patients with a single episode of provoked status epilepticus, a first tonic–clonic seizure during pregnancy and, particularly, an unprovoked event in older and learning disabled people. Treatment following a first seizure should balance risk factors for recurrence with the informed opinion of the patients and their family.

Dance

Anjali Dance ompany consists entirely of dancers with learning disabilities and is the only company of its kind in the UK. Anjali creates and tours entertaining, high-quality work which is performed by professionally trained dancers. The company also has an education programme which includes regular dance classes, an accredited training programme for people with learning disabilities, and training for teachers who work with learning disabled people. Anjali is based at The Mill Arts Centre in Banbury, north Oxfordshire.

Improving the general health of people with learning disabilities

People with learning disabilities suffer an increase in common morbidity, communication difficulties, a high prevalence of serious conditions such as epilepsy, and specific patterns of health needs associated with the aetiology of their disability. Unfortunately, this combination of need is mirrored by a consistent picture of poor health promotion uptake, inadequate care for serious morbidity, unrecognised health need and poor access to health care. Consequently, there is a great disparity between the health of learning-disabled people and that of the general population. Psychiatrists can address this disparity in clinical practice by focusing on these patients' mental health, epilepsy management and the impact of behaviour on health. They can also influence health planning and service development.

Learning Disability as a Refuge from Knowledge

In this paper the author finds that an important factor preventing learning and development in learning disabled people is the way in which their learning disability can act as a refuge from knowledge. He begins by discussing how the very term 'Learning Disability', through obscuring the distinction between organic and psychological difficulties in learning, can itself become a refuge for those who use the term from facing the reality of damage and deficiency. Following this, he considers the development of psychological impairments to learning from a psychoanalytical perspective. He places particular emphasis on how the emotional consequences of a child's handicap, to the child him/herself and his/her parents, can affect the development of curiosity and learning. The author illustrates these ideas with clinical material from individual psychoanalytic psychotherapy with an adolescent boy with a learning disability.

Are antipsychotic drugs the right treatment for challenging behaviour in learning disability?: The place of a randomised trial

People with learning disability sometimes display challenging behaviour. This can be managed by use of antipsychotic medication or behavioural therapy or both. There is no solid evidence, however, that these...

The use of antiepileptic drugs in learning disabled people with epilepsy: an audit of adult in-patients in a treatment and continuing care service

The primary aim of the audit described was to examine antiepileptic drug use among adult in-patients with learning disability. A secondary aim was to examine investigation in those patients . For the purposes of this paper ‘Learning disability’ is synonymous with ICD-10 ‘Mental Retardation’, ‘Mental Handicap’ or ‘Intellectual Impairment’ and should not be confused with the North American use of the term which refers to discrete, specific problems in mental abilities such as reading. A total of 75 adult patients on both the Northgate and Prudhoe sites (managed by Northgate and Prudhoe NHS Trust) were identified as being treated with antiepileptic drugs (AEDs) for postulated epilepsy. Only 12 (16%) patients were being treated with three AEDs or more, the remainder being on either one or two AEDs. All patients with a history of status epilepticus were prescribed rectal diazepam or, more rarely, intranasal midazolam. The number and type of investigations performed on patients varied widely and was sometimes limited by the patient’s ability to co-operate with procedures. Overall, 28 patients were identified who might benefit from a reduction in the number of AEDs prescribed. In 15 of these patients antiepileptic drug regime was currently being reduced. The increased utilization of sleep/sedated electroencephalogram (EEG) and magnetic resonance imaging (MRI— for partial seizures), where practical, may also increase diagnostic accuracy in identifying epilepsy and its aetiology. Audit will be repeated in 12 months.

Marginalization and its effects on the sexuality- related potentials of the learning disabled person

Prejudice exists at all levels of society, finding its basis in over-generalized, learned attitudes towards those individuals who do not conform to what is perceived to be normal within that society. This prejudice has, within learning disability services, found expression in the marginalization of learning disabled people away from the mainstream of society, and their admission into long stay institutions. It is the experience of the authors that such marginalization continues to exist in both the UK and Ireland, at a functional and attitudinal level, within many contemporary learning disability services. This conceptual paper seeks to examine the effects of marginalization on the development of learning disabled people in Ireland, within the context of a proposed, integrative approach to personhood.

A journey to take together and with optimism: working with learning disabled people who have complex needs

A journey to take together and with optimism: working with learning disabled people who have complex needs