Cripping Safe Sex

Life Goes On (1989?C1993) was the first television series in U.S. history not only to introduce a recurring teenaged HIV-positive character but also to feature an actor with Down syndrome in a leading role. Drawing new connections among disability studies, queer theory, and bioethics, I argue that Life responded to American disability rights activism and the AIDS epidemic of the early 1990s by depicting sex education as disability activism. By portraying fulfilling sexual relationships for its disabled protagonists, Life challenged heteronormative and ableist underpinnings of marriage, sexuality, reproduction, and sex education and imagined transgressive queer/disabled alliances that often surpassed those of activists of its cultural moment. By representing homophobia, AIDS-phobia, and ableism as intertwined oppressions, the series conjured an expansive vision of sexual justice and pleasure, one that included and united teenagers, intellectually disabled people, and seropositive people??populations whose sexualities have generally been regarded as pathological or nonexistent.     

La nouvelle Loi handicap

Although, over the centuries, disabled persons have been successively considered to be an image of evil, pity, or sin, what image and what rights are provided by the French law of 11/02/2005 on equal rights, participation and citizenship of disabled persons? Isn’t there still an enormous gap between written laws and what really happens in everyday life, as dozens of laws have been added since the first law voted in the 19th century? The vocabulary has also changed over the years from mutilated, to handicapped, to disabled. The marked differences between official figures and figures derived from the HID (Handicap Independence Incapacity) survey conducted between 1998 and 2001, clearly illustrates the difficulty of defining disability. With ageing of the French population aging and improvement of technologies, the number of disable persons will increase considerably over the years to come. Does the new law of 11/02/2005 provide a solution to this urgent situation? Has it identified all of the problems concerning accessibility, human assistance, schooling, rights of the disabled or is it just another law on disability, which is more useful to the legislator than to the people concerned? The new law focuses on four points. First of all, the right to compensation by creating a disability pension, which replaces third party benefits and professional fees benefits and adult disability pension, the right to schooling for all disabled children, the right to employment, and finally the creation of departmental disability centres, staffed by the various actors currently involved in the care of the disabled (Conseil Général, DDASS, CPAM, CAF, etc...). Creation of the disability pension is now based on five main types of assistance: human assistance, technical assistance, adaptation of the home and the vehicle as well as excess transport costs, animal assistance, and finally exceptional and specific aids. Apart from direct assistance to disabled persons, the new law is also designed to improve accessibility (law and decrees already in application since 1991 and 1994) to transport, public places, etc. However, the law also gives another definition of accessibility by extending its scope to all aspects of disability (motor, sensory, cognitive, mental, etc.). This accessibility must be implemented within defined deadlines: 3 years for transport, 5 years for universities and prefectures, and 10 years for other public buildings. Another innovation of this law is that of the initial training and continuing education of healthcare professionals of the medical and social sector (cause of disability, therapeutic innovations, educational innovations, reception and supportive care of disabled persons, announcement of disability, etc.). However, as so little progress has been made the over the centuries, many disabled people will be left by the wayside. Although politicians have now become aware of the problem, the errors, delays, and imperfections of this new law will allow tolerance rather than insertion of the disabled in the years to come. We must develop a different vision of disability, as illustrated by the creation, in 2002, of a European Commission network called “Design for All” to develop systems that can be used by healthy as well as disabled persons. Disabled persons are also trying to find solutions concerning parenthood and childbirth, as although the law has defined “all” aspects for healthy parents with a disabled child, no measures have been taken for disabled parents. The Mother-Child Department of the Institut Mutualiste Montsouris is developing a programme for these future parents with the help of ESCAVIE (Espace Conseil pour l’autonomie en milieu ordinaire de vie) in collaboration with the occupational therapist and social worker. A disabled parents association has also been formed in the Mother-Child Department. A last point does not directly concern the new law, but the bioethics law of August 2004 and preimplantation diagnosis, which was the subject of a recent debate concerning its revision. The old myth of birth control has resurfaced. Unfortunately politicians collude with the media to present this stereotyped image of the perfect, beautiful, normal baby.     

Deciding on Death: Conventions and Contestations in the Context of Disability

Conflicts between bioethicists and disability theorists often arise over the permissibility of euthanasia and physician assisted suicide. Where mainstream bioethicists propose universalist guidelines that will direct action across a range of effectively disembodied situations, and take for granted that moral agency requires autonomy, feminist bioethicists demand a contextualisation of the circumstances under which moral decision making is conducted, and stress a more relational view of autonomy that does not require strict standards of independent agency. Nonetheless, neither traditional nor feminist perspectives have fully engaged with the critique of disabled people that they are consistently subjected to discriminatory, even life-threatening, practice and policy in biomedical and health care. The paper revisits some of the issues that drive the often highly polarised debate between bioethicists and disability theorists around the question of end of life decisions involving disabled people. While many bioethicists have doubtless been indifferent to the difference that disability makes, I am also concerned that the very proper demand of disability activists and theorists to scrutinise all end of life decisions for signs of discrimination and even violence has segued into something damagingly restrictive that silences internal dissension and stifles external debate. Given that euthanasia and physician assisted suicide may be issues where conventional argument on either side will founder on deeply felt convictions, I make the radical move to speculate on an entirely different, quasi-Deleuzian, approach to the value of life in order to shake up entrenched positions, and begin to think differently.     

Respective Contribution of Chronic Conditions to Disability in France: Results from the National Disability-Health Survey

Background

Representative national data on disability are becoming increasingly important in helping policymakers decide on public health strategies. We assessed the respective contribution of chronic health conditions to disability for three age groups (18–40, 40–65, and >65 years old) using data from the 2008–2009 Disability-Health Survey in France.

Methods

Data on 12 chronic conditions and on disability for 24,682 adults living in households were extracted from the Disability-Health Survey results. A weighting factor was applied to obtain representative estimates for the French population. Disability was defined as at least one restriction in activities of daily living (ADL), severe disability as the inability to perform at least one ADL alone, and self-reported disability as a general feeling of being disabled. To account for co-morbidities, we assessed the contribution of each chronic disorder to disability by using the average attributable fraction (AAF).

Findings

We estimated that 38.8 million people in France (81.7% [95% CI 80.9;82.6]) had a chronic condition: 14.3% (14.0;14.6) considered themselves disabled, 4.6% (4.4;4.9) were restricted in ADL and 1.7% (1.5;1.8) were severely disabled. Musculoskeletal and sensorial impairments contributed the most to self-reported disability (AAF 15.4% and 12.3%). Neurological and musculoskeletal diseases had the largest impact on disability (AAF 17.4% and 16.4%, respectively). Neurological disorders contributed the most to severe disability (AAF 31.0%). Psychiatric diseases contributed the most to disability categories for patients 18–40 years old (AAFs 23.8%–40.3%). Cardiovascular conditions were also among the top four contributors to disability categories (AAFs 8.5%–11.1%).

Conclusions

Neurological, musculoskeletal, and cardiovascular chronic disorders mainly contribute to disability in France. Psychiatric impairments have a heavy burden for people 18–40 years old. These findings should help policymakers define priorities for health-service delivery in France and perhaps other developed countries.     

Disability as identified from general practice records.

Thirty eight doctors who attended a postgraduate educational course provided information about disabled patients identified in a search of 7000 records. Disablement was defined as a major disruption to the normal lifestyle of patients in appropriate age and sex groups. Altogether 242 people were identified as disabled, equivalent to 32 per 1000 population, which is closely similar to that published by Harris, who identified patients by postal questionnaire. Among adults aged 15 to 64 more men were identified than women, and we suggest that a higher rate of disablement might be expected in men. Disablement among women may be underestimated because of underrecognition by doctors of disability in housewives. Fifty two per cent of all disabled people were able to attend the doctor''s surgery, and 72% were receiving regular medication; 79% were dependent on relatives, but only 30% were dependent on statutory services. In the opinion of the recording doctors medical and nursing needs were well met, though not the social needs, where the importance of living alone is noteworthy.     

Living with disabilities in Austria--with a special focus on the capital

Life expectancy, especially in the older age groups, is growing enormously due to better social and medical care. According to published data on disabled people (1997), about 30 % of the total population (7,119,000) in Austria suffer from at least one physical disability. In this study, data from a micro census as well as a report from the Federal Ministry for Social Security and Generations is analyzed to illuminate the situation of impaired people with a focus on the capital Vienna. Among other results, it is anticipated that a large number of disabled people receive no help at all. About every 7th person regularly receives care, every 10th receives daily support. Care intensity increases with age showing a clear progression from the age of 60 onwards. 88% of the main supporting individuals are related to the handicapped person being supported. Women generally exhibit a much higher participation in nursing. The socio-political developments are discussed.     

Factors Related to Social Support in Neurological and Mental Disorders

Despite the huge body of research on social support, literature has been primarily focused on its beneficial role for both physical and mental health. It is still unclear why people with mental and neurological disorders experience low levels of social support. The main objective of this study was to explore what are the strongest factors related to social support and how do they interact with each other in neuropsychiatric disorders. The study used cross-sectional data from 722 persons suffering from dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson''s disease, schizophrenia, stroke, and substance use disorders. Multiple linear regressions showed that disability was the strongest factor for social support. Extraversion and agreeableness were significant personality variables, but when the interaction terms between personality traits and disability were included, disability remained the only significant variable. Moreover, level of disability mediated the relationship between personality (extraversion and agreeableness) and level of social support. Moderation analysis revealed that people that had mental disorders experienced lower levels of support when being highly disabled compared to people with neurological disorders. Unlike previous literature, focused on increasing social support as the origin of improving disability, this study suggested that interventions improving day-to-day functioning or maladaptive personality styles might also have an effect on the way people perceive social support. Future longitudinal research, however, is warranted to explore causality.     

Assisted Dying & Disability

This article explores at least two dominant critiques of assisted dying from a disability rights perspective. In spite of these critiques, I conclude that assisted dying ought to be permissible. I arrive at the conclusion that if we respect and value people with disabilities, we ought to permit assisted dying. I do so in the following manner. First, I examine recent changes in legislation that have occurred since the Royal Society of Canada Expert Panel on End‐of‐Life Decision‐Making report, published in this journal. I suggest that these changes are likely to only strengthen opposition to assisted dying from disability rights activists and people with disabilities. Second, I focus on respect for people with disabilities and in particular, respect for their autonomy and decision‐making abilities. Third, I explore the opposition to assisted dying that focuses on risk and the vulnerability of people with disabilities. Here I suggest that this risk ought not to be of special concern. Ultimately, I conclude that upholding respect for the disabled requires the legalization of assisted dying, rather than the denial of access in a misguided effort to protect people with disabilities.     

Life expectancy and life expectancy with disability of normal weight, overweight, and obese smokers and nonsmokers in Europe

The goal of this study was to estimate life expectancy (LE) and LE with disability (LwD) among normal weight, overweight, and obese smokers and nonsmokers in Western Europe. Data from four waves (1998-2001) of the European Community Household Panel (ECHP) were used; a standardized multipurpose annual longitudinal survey. Self-reported health and socioeconomic information was collected repeatedly using uniform questionnaires for 66,331 individuals in nine countries. Health status was measured in terms of disability in daily activities. Multistate Markov (MSM) models were applied to obtain hazard ratios (HRs) and age-specific transition rates according to BMI and smoking status. Multistate life tables were computed using the predicted transition probabilities to estimate LE and LwD. Significant associations were observed between disability incidence and BMI (HR = 1.15 for overweight, HR = 1.64 for obese, compared to normal weight). The risk of mortality was negatively associated with overweight status among disabled (HR = 0.77). Overweight people had higher LE than people with normal-weight and obesity. Among women, overweight and obese nonsmokers expect 3.6 and 6.1 more years of LwD than normal weight persons, respectively. In contrast, daily smokers expect lower LE but a similar LwD. The same patterns were observed among people with high education and those with low education. To conclude, daily smoking is associated with mortality more than with disability, whereas obesity is associated with disability more than with mortality. The findings suggest that further tobacco control would contribute to increasing LE, while tackling the obesity epidemic is necessary to prevent an expansion of disability.     

Tracking subtle stereotypes of children with trisomy 21: from facial-feature-based to implicit stereotyping

Background

Stigmatization is one of the greatest obstacles to the successful integration of people with Trisomy 21 (T21 or Down syndrome), the most frequent genetic disorder associated with intellectual disability. Research on attitudes and stereotypes toward these people still focuses on explicit measures subjected to social-desirability biases, and neglects how variability in facial stigmata influences attitudes and stereotyping.

Methodology/Principal Findings

The participants were 165 adults including 55 young adult students, 55 non-student adults, and 55 professional caregivers working with intellectually disabled persons. They were faced with implicit association tests (IAT), a well-known technique whereby response latency is used to capture the relative strength with which some groups of people—here photographed faces of typically developing children and children with T21—are automatically (without conscious awareness) associated with positive versus negative attributes in memory. Each participant also rated the same photographed faces (consciously accessible evaluations). We provide the first evidence that the positive bias typically found in explicit judgments of children with T21 is smaller for those whose facial features are highly characteristic of this disorder, compared to their counterparts with less distinctive features and to typically developing children. We also show that this bias can coexist with negative evaluations at the implicit level (with large effect sizes), even among professional caregivers.

Conclusion

These findings support recent models of feature-based stereotyping, and more importantly show how crucial it is to go beyond explicit evaluations to estimate the true extent of stigmatization of intellectually disabled people.     

Work-related low back pain: secondary intervention.

A review of the literature indicates that non-specific low back pain is basically an age-related disorder that is affected by differences in occupation, genetics and personal behavior. The cause of low back pain is unknown in most cases, and most of the treatments in routine use are ineffective. There is no evidence that low back pain has decreased in recent years. Consequently, there are a growing number of investigators who believe that efforts at preventing low back pain are futile; that low back pain is an unavoidable consequence of life that will afflict two thirds of the adult population at some point in their lives. These investigators believe that programs aimed at reducing low back disability are likely to be more effective and less costly. Only a small percentage of people with low back pain become disabled, but this small percentage consumes most of the cost. The literature pertaining to the reduction of low back disability is reviewed and discussed. It is concluded that low back disability can be reduced, and that management (not the health care provider) has the primary responsibility for reducing disability.     

The greying of Europe.

About a quarter of the population of Europe is now of pensionable age. Facilities for caring for very old or disabled people differ throughout Europe in scope and means of funding, and the countries of the European Union are far from equity in the status of pensioners. Health expectations have increased in older people--most of the calculated gain in life expectancy is likely to be without disability. Most countries now have specialist geriatric medicine facilities, and international research programmes are under way.     

Stigma, community, ethnography: Joan Ablon's contribution to the anthropology of impairment-disability

Joan Ablon has helped establish the anthropology of impairment-disability and significantly contributed to the role of anthropology in disability studies. In this article, we review the development of and situate Ablon's ethnographic research in the anthropology of impairment-disability. We then address various methodological issues in her work including her ethnographic approach, her grounding in action anthropology and her support for the development of the academic study of disability in anthropology and the careers of disabled anthropologists. The next section of the article examines Ablon's use of the notion of stigma, her understanding of community, and her engagement with disability rights. As examples of themes important to disability studies, we present her discussion of the implications of the ideal of the body beautiful, and gender differences in negotiating intimacy for people with physical differences. We close with a discussion of the future of an anthropology of impairment-disability. [disability, impairment, Ablon, genetics, ethnography]     

Estimating national disability risk

In this article, I provide a method to rebuild the active and disabled life expectancy (ALE and DLE) on the basis of 'current' death and disability risks, and to measure disability risk. This method uses national-level data, and is based on two main assumptions. The first is the Gompertz assumption that death rate rises with age exponentially, and the second is the Cox assumption that death rates of active status are proportional to those of disabled status across age. Applying this method to the US data, I find that the disability risk has increased between 1970 and 1990 for both men and women aged 40 and older. Situations in which above assumptions could be removed are also discussed.     

Genes, embryos, and future people

Testing embryonic cells for genetic abnormalities gives us the capacity to predict whether and to what extent people will exist with disease and disability. Moreover, the freezing of embryos for long periods of time enables us to alter the length of a normal human lifespan. After highlighting the shortcomings of somatic-cell gene therapy and germ-line genetic alteration, I argue that the testing and selective termination of genetically defective embryos is the only medically and morally defensible way to prevent the existence of people with severe disability, pain and suffering that make their lives not worth living for them on the whole. In addition, I consider the possible harmful effects on children born from frozen embryos after the deaths of their biological parents, or when their parents are at an advanced age. I also explore whether embryos have moral status and whether the prospects for disease-preventing genetic alteration can justify long-term cryopreservation of embryos.     

Between recognition and redistribution: disability, (human) rights,and struggles over welfare in Serbia

This article analyses the discourse surrounding, implementation of, and struggles over the new disability policy in Serbia to show how its founding principles of human rights became partially co‐opted by neoliberal welfare restructuring. As a result, it sought to make disabled people not only equal but also economically ‘independent’ in the sense of relying on wage labour instead of welfare. Owing to its inadequate assumptions and instruments, the policy has largely failed to deliver on these objectives. Disabled people mobilized against neoliberalization by defending material welfare entitlements inherited from Yugoslav socialism. At the same time, they appropriated the register of human rights to demand a substantive political and civic equality. This points to the possibility of rights‐based projects that fuse rather than oppose the politics of recognition and redistribution.     

Utilitarianism and the disabled: distribution of resources

Utilitarianism is more convincing than resource egalitarianism or welfare egalitarianism as a theory of how resources should be distributed between disabled people and nondisabled people. Unlike resource egalitarianism, utilitarianism can redistribute resources to the disabled when they would benefit more from those resources than nondisabled people. Unlike welfare egalitarianism, utilitarianism can halt redistribution when the disabled would no longer benefit more than the nondisabled from additional resources.
The author considers one objection to this view: it has been argued, by Sen and others, that there are circumstances under which utilitarianism would unfairly distribute fewer resources to the physically disabled than to nondisabled people, on the ground that the disabled would derive less benefit from those resources. In response, the author claims that critics of utilitarianism have fallaciously exaggerated the circumstances under which the disabled would benefit less than the nondisabled from additional resources. In those limited circumstances in which the disabled really would benefit less from resources, the author argues, it does not seem unfair to distribute fewer resources to them.     

Disability in young people and adults one year after head injury: prospective cohort study

ObjectiveTo determine the frequency of disability in young people and adults admitted to hospital with a head injury and to estimate the annual incidence in the community.DesignProspective, hospital based cohort study, with one year follow up of sample stratified by coma score.SettingFive acute hospitals in Glasgow.Subjects2962 patients (aged 14 years or more) with head injury; 549 (71%) of the 769 patients selected for follow up participated.ResultsSurvival with moderate or severe disability was common after mild head injury (47%, 95% confidence interval 42% to 52%) and similar to that after moderate (45%, 35% to 56%) or severe injury (48%, 36% to 60%). By extrapolation from the population identified (90% of whom had mild injuries), it was estimated that annually in Glasgow (population 909 498) 1400 young people and adults are still disabled one year after head injury.ConclusionThe incidence of disability in young people and adults admitted with a head injury is higher than expected. This reflects the high rate of sequelae previously unrecognised in the large number of patients admitted to hospital with an apparently mild head injury.     

Effects of 92% oxygen administration on cognitive performance and physiological changes of intellectually and developmentally disabled people

Background

The present study addressed how 92% oxygen administration affects cognitive performance, blood oxygen saturation (SpO₂), and heart rate (HR) of intellectually and developmentally disabled people.

Methods

Seven males (28.9 ± 1.8 years) and seven females (34.4 ± 8.3 years) with intellectual and developmental disabilities (disabled level 2.1 ± 0.5) completed an experiment consisting a 0-back task with normal air (21% oxygen) administered in one run and hyperoxic air (92% oxygen) administered in the other run. The experimental sequence in each run consisted of a 1-min adaptation phase, 2-min control phase, and 2-min 0-back task phase, where SpO₂ and HR were gauged for each phase.

Results

The administration of 92% oxygen increased 0-back task performance of intellectually and developmentally disabled people, in association with increased SpO₂ and decreased HR. Our results demonstrate that sufficient oxygen supply subserving cognitive functions, even as a short-term effect, could increase cognitive ability for the intellectually and developmentally disabled people.

Conclusions

It is concluded that enriched oxygen can positively affect, at least in the short-term, the working memory of those with intellectual and developmental disability.