Co-constructed caring research and intellectual disability:an exploration of friendship, intimacy and being human

For this paper, emotional and socio-political questions lie at the heart of relationships in understanding intellectual disability and what it is to be a human. While the sexual and intimate is more often than not based on a private and personal relationship with the self and (an)other, the sexual and intimate life of intellectually disabled people is more often a ‘public’ affair governed by parents and/or carers, destabilizing what we might consider ethical and caring practices. In the socio-political sphere, as an all-encompassing ‘care space’, social intolerance and aversion to difficult differences are played out, impacting upon the intimate lives of intellectually disabled people. As co-researchers (one intellectually disabled and one ‘non-disabled’), we discuss narratives from a small scale research project and our personal reflections. In sociological research and more specifically within disability research it is clear that we need to keep sex and intimacy on the agenda, yet also find ways of doing research in a meaningful, caring and co-constructed way.

Intellectual disability and being human:a care ethics model

This pioneering book, in considering intellectually disabled people's lives, sets out a care ethics model of disability that outlines the emotional caring sphere, where love and care are psycho-socially questioned, the practical caring sphere, where day-to-day care is carried out, and the socio-political caring sphere, where social intolerance and aversion to difficult differences are addressed. This book draws from an understanding of how intellectual disability is represented in all forms of media, a feminist ethics of care, and capabilities, as well as other theories, to provide a critique and alternative to the social model of disability.

Anticholinergic burden in older adults with intellectual disability; relationships with multimorbidity and adverse effects

Background: Anticholinergic medications may be associated with adverse clinical outcomes, including acute impairments in cognition and anticholinergic side effects, the risk of adverse outcomes increasing with increasing anticholinergic exposure. Older people with intellectual disability may be at increased risk of exposure to anticholinergic medicines due to their higher prevalence of comorbidities. We sought to determine anticholinergic burden in ageing people with intellectual disability. Methods: Medication data (self-report/proxy-report) was drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a study on the ageing of 753nationally representative people with an IDC40 years randomly selected from the National Intellectual Disability Database. Each individual’s cumulative exposure to anticholinergic medications was calculated using the Anticholinergic Cognitive Burden Scale (ACB) amended by a multi-disciplinary group with independent advice to account for the range of medicines in use in this population. Results: Overall, 70.1 % (527) reported taking medications with possible or definite anticholinergic properties (ACBC1), with a mean (±SD) ACB score of 4.5 (±3.0) (maximum 16). Of those reporting anticholinergic exposure (n=527), 41.3 % (217) reported an ACB score o fC5. Antipsychotics accounted for 36.4 % of the total cumulative ACB score followed by anticholinergics (16 %) and antidepressants (10.8 %). The most frequently reported medicine with anticholinergic activity was carbamazepine 16.8 % (127). The most frequently reported medicine with high anticholinergic activity (ACB 3) was olanzapine13.4 % (101). There was a significant association between higher anti-cholinergic exposure and multimorbidity, particularly mental health morbidity, and some anticholinergic adverse effects such as constipation and day-time drowsiness but not self-rated health. Conclusion: Using simple cumulative measures proved an effective means to capture total burden and helped establish that anticholinergic exposure in the study population was high. The finding highlights the need for comprehensive reviews of medications.

A case of bilateral perisylvian syndrome with reading disability

Bilateral Perisylvian Syndrome (BPS) often presents with epilepsy and significant behavioral impairments that can include mental retardation, dysarthria, delayed speech development, and delayed fine motor development (Graff-Radford et al., 1986 and Kuzniecky et al., 1993). While a small subset of BPS cases have been described as having relatively isolated language delays (Leventer et al., 2010), BPS is not expected in children with dyslexia. As part of a Medical University of South Carolina, IRB approved multi-site study involving retrospective and de-identified dyslexia data, we unexpectedly identified a 14.05 year old male with evidence of BPS whose father had been diagnosed with dyslexia and dysgraphia. This child had been recruited for a neuroimaging study on dyslexia from a school specializing in educating children with dyslexia. The T1-weighted MRI scan from this child demonstrated a highly unusual perisylvian sulcal/gyral patterning that is a defining feature of BPS (Fig. 1). BPS cases exhibit bilateral dysgenesis of the Sylvian fissure and surrounding gyri, which appears to occur because of a limited or absent arcuate fasciculus (Kilinc, Ekinci, Demirkol, & Agan, 2015). This BPS case also had a relatively enlarged atrium of the lateral ventricle that is consistent with the BPS anatomical presentation and reduction of parietal white matter (Graff-Radford et al., 1986, Kilinc et al., 2015 and Toldo et al., 2011).

The effects of government disability benefits, accessibility laws and rehabilitation on employment choices by individuals with spinal cord injuries

Greater inclusion of individuals with disabilities into mainstream society is an important goal for society. One of the best ways to include individuals is to actively promote and encourage their participation in the labor force. Of all disabilities, it is feasible to assume that individual with spinal cord injuries can be among the most easily mainstreamed into the labor force. However, less that fifty percent of individuals with spinal cord injuries work. ^ This study focuses on how disability benefit programs, such as Social Security Disability Insurance, and Worker's Compensation, the Americans with Disabilities Act and rehabilitation programs affect employment decisions. The questions were modeled using utility theory with an augmented expenditure function and indifference theory. Statically, Probit, Logit, predicted probability, and linear regressions were used to analyze these questions. Statistical analysis was done on the probability of working, ever attempting to work after injury, and on the number of years after injury that work was first attempted and the number of hours worked per week. The data utilized were from the National Spinal Cord Injury Database and the Spinal Cord Injuries and Labor Database. The Spinal Cord Injuries and Labor Database was created specifically for this study by the author. Receiving disability benefits decreased the probability of working, of ever attempting to work, increased the number of years after injury before the first work attempt was made, and decreased the number of hours worked per week for those individuals working. These results were all statistically significant. The Americans with Disabilities Act decrease the number of years before an individual made a work attempt. The decrease is statistically significant. The amount of rehabilitation had a significant positive effect for male individuals with low paraplegia, and significant negative effect for individuals with high tetraplegia. For women, there were significant negative effects for high tetraplegia and high paraplegia. ^ This study finds that the financial disincentives of receiving benefits are the major determinants of whether an individual with a spinal cord injury returns to the labor force. Policies are recommended that would decrease the disincentive. ^

Disability Tourism Dollars in Western Australia Hotels

As the Western Australian hotel sector continues to look for new opportunities, people with disabilities are being acknowledged as a consumer group with considerable revenue earning potential. The authors report on findings from the initial stages of a three- part methodology aimed at investigating current awareness of and provision for the disability issue within the Western Australian hotel sector.

A multimodal and adaptive real-time human -computer interface for peoples with severe motor disability

This dissertation introduces the design of a multimodal, adaptive real-time assistive system as an alternate human computer interface that can be used by individuals with severe motor disabilities. The proposed design is based on the integration of a remote eye-gaze tracking system, voice recognition software, and a virtual keyboard. The methodology relies on a user profile that customizes eye gaze tracking using neural networks. The user profiling feature facilitates the notion of universal access to computing resources for a wide range of applications such as web browsing, email, word processing and editing. ^ The study is significant in terms of the integration of key algorithms to yield an adaptable and multimodal interface. The contributions of this dissertation stem from the following accomplishments: (a) establishment of the data transport mechanism between the eye-gaze system and the host computer yielding to a significantly low failure rate of 0.9%; (b) accurate translation of eye data into cursor movement through congregate steps which conclude with calibrated cursor coordinates using an improved conversion function; resulting in an average reduction of 70% of the disparity between the point of gaze and the actual position of the mouse cursor, compared with initial findings; (c) use of both a moving average and a trained neural network in order to minimize the jitter of the mouse cursor, which yield an average jittering reduction of 35%; (d) introduction of a new mathematical methodology to measure the degree of jittering of the mouse trajectory; (e) embedding an onscreen keyboard to facilitate text entry, and a graphical interface that is used to generate user profiles for system adaptability. ^ The adaptability nature of the interface is achieved through the establishment of user profiles, which may contain the jittering and voice characteristics of a particular user as well as a customized list of the most commonly used words ordered according to the user's preferences: in alphabetical or statistical order. This allows the system to successfully provide the capability of interacting with a computer. Every time any of the sub-system is retrained, the accuracy of the interface response improves even more. ^

The influence of simulated disability slides and audiotape messages on college students' attribution of personality characteristics

The purpose of this study was to examine the attitudes college students have toward those with physical disabilities and what personality characteristics they attribute to physical appearance. One-hundred-one introductory psychology students at FIU were randomly assigned to one of three groups: control--no disability group, a group that viewed five slides of peers with disabilities, and a group that viewed the disability slides and heard their voices. All subjects rated the individuals' perceived personality. A one-way ANOVA revealed that those in the visual and audio disability group rated those with disabilities significantly higher in friendliness, attractiveness, and assertiveness than those who rated the individuals without disabilities. Those in the visual and audio disability group rated them higher in self-esteem than those in the visual only disability group. Since voice can have such positive effects on first impression, an occupational therapist can work on improving communication skills of those with disabilities.

The effects of government disability benefits, accessibility laws and rehabilitation on employment choices by individuals with spinal cord injuries

Greater inclusion of individuals with disabilities into mainstream society is an important goal for society. One of the best ways to include individuals is to actively promote and encourage their participation in the labor force. Of all disabilities, it is feasible to assume that individual with spinal cord injuries can be among the most easily mainstreamed into the labor force. However, less that fifty percent of individuals with spinal cord injuries work. This study focuses on how disability benefit programs, such as Social Security Disability Insurance, and Worker's Compensation, the Americans with Disabilities Act and rehabilitation programs affect employment decisions. The questions were modeled using utility theory with an augmented expenditure function and indifference theory. Statically, Probit, Logit, predicted probability, and linear regressions were used to analyze these questions. Statistical analysis was done on the probability of working, ever attempting to work after injury, and on the number of years after injury that work was first attempted and the number of hours worked per week. The data utilized were from the National Spinal Cord Injury Database and the Spinal Cord Injuries and Labor Database. The Spinal Cord Injuries and Labor Database was created specifically for this study by the author. Receiving disability benefits decreased the probability of working, of ever attempting to work, increased the number of years after injury before the first work attempt was made, and decreased the number of hours worked per week for those individuals working. These results were all statistically significant. The Americans with Disabilities Act decrease the number of years before an individual made a work attempt. The decrease is statistically significant. The amount of rehabilitation had a significant positive effect for male individuals with low paraplegia, and significant negative effect for individuals with high tetraplegia. For women, there were significant negative effects for high tetraplegia and high paraplegia. This study finds that the financial disincentives of receiving benefits are the major determinants of whether an individual with a spinal cord injury returns to the labor force. Policies are recommended that would decrease the disincentive.

The socialization of teachers who teach young students experiencing physical disability in physical education

The purpose of this study was to explore the socialization of teachers in physical education, with a focus on their experiences of teaching and learning to teach children living with physical disabilities. Data were collected using qualitative interviews and through analysis of program calendars for publicly-funded institutions offering pre-service teacher education programs. Despite being largely viewed as the least effective form of socialization, pre-service teacher education has the potential to influence a teacher’s confidence and performance in the classroom. Results of this study indicate that the socialization experiences of teachers continue to be strong indicators of performance, and that both specialist and generalist teachers lack positive socialization experiences that include students with physical disabilities in physical education. This limits the experience, knowledge and skills they have to draw on in their physical education teaching practice. Coupled with a lack of resources and expertise available, teachers are left under-prepared and without enough resources to provide high quality physical education to children living with physical disabilities.

What does disability have to do with Christian ethics? : Why its absence matters

Peer reviewed

What does disability have to do with Christian ethics? : Why its absence matters

Peer reviewed

Predicting functional disability : One year results from the Scottish Early Rheumatoid Arthritis Inception Cohort

Peer reviewed

Dependence and Masculinity in Contemporary French Writing about Disability

Peer reviewed