Alex McClimens

The Organization of Difference: People With Intellectual Disabilities and the Social Model of Disability

In this article I propose that the experience of people categorized as having intellectual disabilities is inadequately represented by current disability theory, premised, as much of it is, on the socially constructed duality between disability and impairment. I argue that representation of intellectual disability within the wider world of disability in general will only be achieved by thinking of disability on a continuum. This should preserve individual identities while reducing categorization and the attendant essentialist versus constructionist conflict. Debate can then move to a consideration of what methodologies are appropriate to the inquiry.

How do people with learning disability experience the city centre? : a Sheffield case study

The use of city centre spaces by people with learning disability is not much debated in the literature. Here we include the thoughts and opinions of groups of people with learning disability as we undertook some guided walks through Sheffield city centre. We found that few of the participants had independent access to the city centre. Many cited concerns over personal safety and the most, on few occasions when they did visit, did so with family and/or paid staff for pre-planned purposes, usually linked to shopping. The need for appropriate support figured prominently. There is also a need to re-assess what we mean by social inclusion for this cohort.

These self-evident truths: Power and control in intellectual disability research

Thomas Jefferson, rejecting the prevailing doctrine that monarchs enjoyed a ‘‘divine right’’ to rule, thought it a self-evident truth that all men are created equal. Years later George Orwell added to the rhetoric when he said that all animals are equal. As the reality of this position unfolded in Orwell’s parable, the author had the characters impart some spin by adding ‘‘but some animals are more equal than others.’’ Of course he was writing a political satire rather than a commentary on intellectual disability research, but do parallels exist? Are all researchers equal or do some of us have a tendency to display our self-importance? In the UK, dissatisfaction with the research process as experienced by people with physical disability was articulated by Paul Hunt in 1981 when he referred to the researchers who were invited to examine the institutionalised living he inhabited as ‘‘parasites.’’ They adopted a detached approach that ignored the lived experiences of the very people who had instigated the research in the first place. Their final product was politically biased and methodologically insensitive. The by-product, however, was more enduring: it introduced a realignment of thinking that forced academics to confront the inherent power relations in their dealings with supposedly subaltern populations. The cause was taken up worldwide and pursued with vigour in the ‘‘Nothing about us, without us’’ movement. The self-advocacy movement and the social model of disability have combined to persuade enquiry to dance to a different drum. Words like ‘‘inclusive,’’ ‘‘shared,’’ ‘‘collaborative,’’ and ‘‘emancipatory’’ are now in common usage. Suddenly participatory research has become the new black. Black is an excellent colour for covering over stains

Intellectual disability, consumerism and identity: to have and have not?

Here we consider the consumer society as it currently exists in the UK and examine its relationship and relevance to the population of individuals with intellectual disability. We do this through a reading of the associated literature on theories of shopping and consumption which we then contrast with research evidence as it applies to the lives of people with intellectual disability. By brining together these two perspectives we hope to shine some light on ideas around identity and choice. We then transfer these arguments to the health and social care sector. Here we ask whether an economic model which has been exposed as divisive and exclusionary should be used in the administration of social secutity benefits of the kind accesed by people with a range of disabilities. We conclude that the unchallenged advance of marketisation within health and social care may benefit those who are financially able but for those who are economically disadvantaged the choices offered are illusory at best.

A problem with inclusion in learning disability research

People with severe learning disability are particularly difficult to include in the research process. As a result, researchers may be tempted to focus on those with learning disability who can be included. The problem is exacerbated in this field as the political agenda of inclusion and involvement is driven by those people with learning disability who are the higher functioning. To overcome this we should first detach the notion of consent from ideas about autonomy and think instead of it as a way to avoid wronging others; this fits the original historical use of consent in research. This allows us to think in terms of including participants to the best of their abilities rather than in terms of a threshold of autonomy. Researchers could then use imaginative ways to include the least able and to ensure they are not wronged in research or by exclusion from it.

Presentation of Self in E-Veryday Life: How People Labelled with Intellectual Disability Manage Identity as They Engage the Blogosphere

Very little is known about the online habits of people labelled with intellectual disability. What little information there is focuses more on demographic descriptors rather than any analyses of issues specific to that group. Hence the vast majority of the literature is firmly focused on more generic issues as they affect the general population. Some very few disability dedicated studies, however, have examined homepages maintained by individuals who live with Down syndrome. Here at least is evidence of a field of inquiry that recognises there may be particular aspects of web based communications that deserve special interest. The dynamics of web based communications are fast moving and the relatively static homepage has subsequently given way to Web 2.0 technologies. Here the recent and exponential increase in the popularity of blogging as a means of mass communication has attracted much comment in both popular and specialist quarters. Its ease of use and near universal availability has prompted massive sociological inquiry. But again the profile of people living with intellectual disability is absent from the debate. Our study reports on a project in which adults with intellectual disability were assisted to access the web in general, and the ‘blogosphere’ in particular. Our focus is on the means and methods by which the participants were able to manage their off and online identities. We look at the language employed, the layouts used and the way the online messages and postings reflected or distorted the actual lived experiences of these proto-bloggers. Notions of authorship and audience also contribute to the debate as these issues raise questions about sense of self, disability as a cultural construct and our ability to negotiate the increasingly important virtual world of the web.

The anatomy lesson of Dr Nicolaes Tulp: what can it teach us today?

We report on the use of a high fidelity patient simulator (SimMan) within a clinical lab setting to teach learning disability nursing students about epilepsy management. We had previously prepped the students with verbal discussions on epilepsy management and, when the simulator began to undergo a seizure, small groups of students managed the unfolding scenario. We received written feedback from the students on the experience, and with reference to this and to the wider literature we consider the benefits of this approach to patient care. We surmise that lessons learned here will be applicable to trainee professionals from other parts of the register and in other fields allied to healthcare. We anticipate that this will improve care for people with intellectual disability in line with recommendations in Health Care for All (2008).

Evaluation of a new mental health liaison team in a general hospital. Part 2: exploring the themes and their effect on practice

Hospitals and emergency departments (EDs) are caring for increasing numbers of patients who present with underlying mental health issues. Managing these patients can be challenging for clinical staff who often lack the specialist knowledge and skills required to provide appropriate care. This article, part two of two on the evaluation of a newly formed mental health liaison team (MHLT) working in a general hospital, focuses on the perceptions and experiences of the MHLT participants, and explores three sub-themes derived from the interview data. The article considers the effect of these themes on practice, and the relationship between MHLT members and staff in EDs and the wider hospital.

Breast cancer information and support needs for women with intellectual disabilities: a scoping study

To examine the compass and nature of relevant research and identify gaps in the current evidence in order to determine the priority of future research about breast cancer and intellectual disability (ID).

Dr Tulp attends the soft machine: Patient simulators, user involvement and intellectual disability

Simulation as a way to teach clinical skills attracts much critical attention. Its benefits, however, might be significantly reduced when the simulation model used relies exclusively on patient simulators. This is particularly true if the intended patient population for students taught is characterized by intellectual disability. Learning to care for people with intellectual disability might be better supplemented when the simulation model used incorporates input from ‘real’ people. If these people themselves have intellectual disabilities then the verisimilitude of the simulation will be higher and the outcomes for learners and potential patients will also be improved.