Disability - special issue

Sarah Supple takes a look at the portrayal of disability in the psychological literature. Lisa Woolfson discusses the challenges facing the parents of disabled children. Rebecca Lawthom and Dan Goodley urge psychologists to enable rather than disable. Laura Gorfin and Alex McGlaughlin write on the importance of the service-user voice. Rudi Coetzer describes working for a brain injury service in North Wales.

Getting our house in order

Sarah Supple takes a look at the portrayal of disability in the psychological literature.

 Physical impairment seems to have always been part of human existence. In the oldest of remains archaeologists find evidence that humans incurred severe, deforming injuries and still went on to live for many years. At some point this physicality took on a social meaning, and at least as far back as the first century ad, physical impairment has been stigmatised (e.g. as challenged by Jesus in John 9:1–12). As I am a disabled woman who is registered blind, I decided to investigate how contemporary society perceives disability; and because I was training to be a counselling psychologist at the time, I thought the field of psychology was an appropriate place to look. What beliefs, implications and assumptions regarding disability are revealed by and embedded in modern psychological research? One of the first things I discovered was that there is an alternative to the traditional medical model that seems to dominate our society’s understanding regarding disability. Shakespeare (1993) differentiates between physical impairment and disability, asserting that the former refers to the embodied restrictions of a certain physical state, whilst the latter is the consequence of a society that categorises the former into a socially devalued and disempowered position. Such oppression stems from an environment that is hostile towards disability, in which physical and social barriers inhibit personal choice. This conceptualises disability as diversity within the human condition, rather than as a lack of ability (Oliver, 1996).
This view has been adopted by the disability movement, which has grown
in opposition to negative medicalised representations of disability. Historically, disabled people came to be perceived as sick and as in need of a cure (see for example Oliver, 1996, and Barnes, 1991). As disability was likely to be untreatable
in the conventional sense, disabled people came to be seen as tragic and less valued than those who could recover from illness (French Gilson & Depoy, 2000).
As psychology developed, it played an inadvertent part in the predominance of the negative view of disability. Burman (1994) asserts that as developmental psychology participated in the establishment and measurement of norms, it created and perpetuated the concept of ‘abnormality’, which was applied to disabled people. This led psychology to focus on the guilt, shame and loss associated with the tragedy of being disabled (Lindemann, 1981), and on the presumed outcomes, such as maladaptive personalities and behaviours (Hersen & Van Hasselt, 1990).
In this article I will look at several different areas of psychological research, starting with how affect and cognitive style were linked to level of impairment.

Affect

Much of the research seems to emphasise the role that negative emotions play in the psychology of disabled people and how this may affect the way in which they experience their physical impairment. Depression seemed to be commonly associated with physical impairment,
and Abberley (1987) suggests that such negative representations have given disabled people a detrimental status. Dennis et al. (2000) considered how emotional distress (rather than physiology) affects a person’s level of impairment. The study constructs stroke patients as being prone to emotional problems and links this to outcome after a stroke, measuring this using self-rated questionnaires complemented by information from medical professionals. Similarly, Hansen et al. (2001) suggest that the severity of
an individual’s impairment is linked to their mental state. Also, Hommel et al. (2000) propose that psychological factors are as integral to disability as physical factors, suggesting that cognitive appraisal may affect the management of rheumatoid arthritis.
This seems to move towards an assumption that level of impairment is intrinsically linked to an individual’s emotional and cognitive characteristics. This focus on subjective qualities maintains a traditional focus on the individual as deficient, which minimises the need for change on an institutional or social level, as well as overlooking any contextual or societal factors affecting level of impairment. Also much of the research relied upon professionals’ assessments of the participants, which seems to place them as passive subjects. Often recommendations were made to change the individual’s way of behaving or thinking in order to facilitate improvement or rehabilitation. This may reflect psychology’s individualistic focus, as well as its assumption that disability will have a negative impact upon a person, which needs to be ‘cured’.

Quality of life

Quality of life (QoL) has been adopted by psychology as an outcome measure even though some assert that the concept remains poorly defined (Holmes et al., 1997). Research often seems to make a direct link between impairment or disability and QoL, implying that the former affects the latter. Much of the research (e.g. Koplas et al., 1999; Wahl et al., 1999) does not incorporate the participants’ own perspectives on their quality of life, relying instead on clinically or physically defined criteria. Meyers (2000) asserts that research on QoL displays a historical bias, focusing on the destructive nature of physical impairment. He feels areas such as health satisfaction and positive affect should be incorporated, as even people with the most notable impairment show high levels of happiness. Perhaps the positive aspects of physical diversity need to be explored more, through listening to disabled people’s personal accounts.

Sexuality and reproduction

Sexuality has been included in psychological measures of QoL, such as the World Health Organization’s Quality of Life Scale. However, sexuality is often omitted from the representations of disabled bodies and thus estranged from the identities of disabled people. It has been suggested that disabled people are treated in an asexual way by their parents and healthcare workers (Hallum, 1995), and that this is fuelled by the belief that disabled people are incapable of having or being interested in sex.
Berman et al. (1999) examined sexual knowledge, sexual behaviour and beliefs about sexuality among adolescents with congenital physical impairments. They felt that the lack of research in this field was disturbing, because sexuality is a central concern of adolescents and their families, and because its absence in the literature reinforces the myth that disabled people are not sexual. They found that adolescents with physical impairments are generally uninformed or misinformed about sexual knowledge and how it relates to their impairment.
The picture doesn’t improve in the area of reproduction. Collins (1999) highlights the paradox that women with physical disabilities are being denied equal access
to reproductive technologies, whilst being controlled and threatened by them. The paper sees that many disabled women will have pregnancy – usually a private domain – publicly controlled for them.
Perhaps there is a more sinister reason why sexuality is not associated with disabled people – the idea that disabled people should not procreate or increase
in number. Even women who are against abortion in principle will have prenatal testing to screen for impairment and would have an abortion if it is found (Kyle et al., 1988). In fact, the law in Britain allows a pregnancy to be terminated at any stage if the fetus is shown to be ‘seriously handicapped’ – perhaps a reflection of the attitude that Swain and French (2000) suggest underlies Western culture: ‘you are better dead than disabled’.
Research dealing with sexual oppression should acknowledge that some physical impairments may have a profound affect on women’s ability to conceive or carry a child, whilst avoiding a presumption that this is problematic for all disabled women. Physical restrictions are quite different from social ones and are not necessarily detrimental to one’s sexuality. There also seems to be a focus on heterosexual disabled men and women in the research, overlooking any diversity in sexuality.

Therapy

The last theme I considered was how disability issues impact on the practice of therapy. The way in which disability is dealt with by psychologists, and in turn by institutions that train them, shapes how disabled people are theorised about. Such theorising contributes to how disabled people are perceived and categorised; that is, as deviant or abnormal (Burman, 1994). This will in turn impact upon societal representations of disability and therefore on the experiences of disabled people.
Fuertes et al. (2001) undertook research considering how counsellor multiculturalism competency impacts on the practice of therapy. This is an approach that recognises the existence of multiple belief systems and perspectives, asserting the need for counsellors to attend competently to the culture and context in which clients operate. Disability can be conceptualised as such a cultural identity (Sue et al., 1992), and the disabled movement itself conceptualises such a cultural identity as stemming from a common experience of societal oppression (e.g. Abberley, 1987; Swain & French, 2000). However, although a multicultural approach is potentially liberating, leading to a deeper understanding of the phenomenology of disabled people, it needs to be further explored, ensuring that disabled people themselves are involved in the research process.
Another issue (considered by Chaudhuri, 1999) concerns how a disabled psychotherapist may affect the therapeutic alliance. He suggests that personal contact and interaction are essential between non-disabled and disabled colleagues, but that this can be affected by anxiety and an avoidance reaction stemming from a fear
of losing one’s own bodily integrity (e.g. Anisfeld, 1993). Furthermore, Chaudhuri postulated that the wheelchair becomes a sign of the psychiatrist’s mortality and thus provokes fears about the mortality of those around him or her. This clearly
perpetuates historical prejudice using psychotherapeutic theory in a way that legitimates and continually constructs disabled people as different and intimidating. Chaudhuri also considers how the client may perceive the disabled body as indicative of cognitive or emotional problems, which may affect the therapeutic relationship. This seems to echo the presumption that disability fundamentally affects one’s personal attributes, which is evident in much psychological research. However, Chaudhuri goes on to assert that the therapist can work with their disability, using it to explore transferencial issues and facilitate a much-needed opportunity to consider the impact a therapist has on therapy. He feels that psychoanalysis needs to find a better understanding of disability, moving away from a purely negative concept of it as symbolic of death and castration anxiety.

Still much to do?

The research I looked at was only a tiny sample of the work undertaken regarding disability, and my search stopped at 2001.
I wonder if the picture has changed significantly in the last four years, or whether this is still an indication of some of the attitudes present within psychology? Are traditional medical perspectives of disability still predominant? Is disability still perceived as a largely negative phenomenon, associated with negative affect, lowered quality of life and diminished sexuality, as well as provoking anxiety in others? Or is disability research finally catching up with work done regarding other socially oppressed minorities in the areas of race, gender and sexuality?
Overwhelmingly, the assumption seems to be that disability is a physical problem, affected by an individual’s thoughts and behaviours. The research rarely considered any social or contextual issues that may contribute to the experience of being disabled. Furthermore the research seemed to treat disabled people as a homogeneous group, sharing traits and experiences, with little or no consideration given to how such a category is defined or what diversity may exist within it.
The paradox is that psychological theory regarding disability will not evolve without fresh perspectives provided by research. But the research seems to be based on, and thus perpetuates, traditional, largely negative presumptions about disability and disabled people. Therefore, psychological practitioners need to be aware of what representations and assumptions they hold regarding disability, as well as how the institutions they train and work in deal with the topic of disability.
This is particularly important because psychology as a discipline plays a central role in the diagnosis, treatment and rehabilitation of disabled people. Thus such reflection is necessary in order to avoid perpetuating the past pathologising of disabled people, which has reinforced their status as ‘other’ and abnormal. In order to challenge such discrimination, psychologists need to research issues that are relevant to disabled people based on their perspectives and which embrace diversity, making space for a variety of perspectives on disability.

- Sarah Supple is a counselling psychologist with the Northamptonshire Health Care NHS Trust. E-mail: [email protected].

Discuss and debate

Is the medical model of disability still prevalent within psychology and the NHS?
What do you think the implications of the Disability Discrimination Act are for psychologists?
Do you think disability issues should be treated as a separate field of study within psychology?
Have your say on these or other issues this article raises. Write to our Letters page on [email protected] or at the Leicester address – 500 words or less, please. Or you can contribute to our online forum on this or any other topic – go to www.thepsychologist.org.uk.

References

Abberley, P. (1987). The concept of oppression and the development of a social theory of disability. Disability, Handicap and Society, 2, 5–19.
Anisfeld, L. (1993). The therapist’s disability at an adaptive context. In J. Aronson (Ed.) Listening and interpreting. New York: Schribners.
Barnes, C. (1991). Disabled people in Britain and discrimination: A case for anti-discrimination legislation. London: Hurst, in Association with the British Council of Organisations of Disabled People.
Berman, H., Harris, D., Enright, R., Gilpin, M., Cathers, T. & Bukovy, G. (1999). Sexuality and the adolescent with a physical disability: Understandings and misunderstandings. Issues in Pediatric Nursing, 22, 183–196.
Burman, E. (1994). Deconstructing developmental psychology. London: Routledge.
Chaudhuri, R.M. (1999). Dynamic psychotherapy and the disabled psychiatrist. Journal of the American Academy of Psychoanalysis, 27, 239–251.
Collins, C. (1999). Reproductive technologies for women with physical disabilities. Sexuality and Disability, 117, 299–307.
Dennis, M., O’Rourke, S., Lewis, S., Sharpe, M. & Warlow, C. (2000). Emotional outcomes after stroke: Factors associated with poor outcome. Journal of Neurology, Neurosurgery and Psychiatry, 68, 47–52.
French Gilson, S. & Depoy, E. (2000). Multiculturalism and disability: A critical perspective. Disability and Society, 15, 207–218.
Fuertes, J.N., Bartolomeo, M. & Nichols, M. (2001). Future research directions in the study of counsellor multicultural competency. Journal of Multicultural Counselling and Development, 29, 3–12.
Hallum, A. (1995). Disability and the transition to adulthood: Issues for the disabled child, the family, and the pediatrician. Current Problems in Pediatrics, 25, 12–50.
Hansen, M.S., Fink, P., Frydenburg, M., Oxhoj, M.L., Sondergaard, L. & Erisken, M. (2001). Mental disorders in medical inpatients and the association to severity of illness, self-rated physical disability and health perception. Psychosomatics, 42, 41–47.
Hersen, H. & Van Hasselt, V.V. (1990). Psychological aspects of development and physical disabilities. A casework. London: Sage.
Holmes, S., Coyle, A. & Thomson, E. (1997). Quality of life in survivors of bone marrow transplant. Journal of Cancer Nursing, 1, 106–116.
Hommel, K.A., Chaney, J.M., Mullins, L.L., Palmer, W., Wees, S. & Klein, H. (2000). The contribution of attributional style to perceived disability in rheumatoid arthritis: A longitudinal study. Journal of Clinical Psychology in Medical Settings, 7, 113–120.
Koplas, P.A., Gans, H.B., Wisely, M.P. et al. (1999). Quality of life and Parkinson’s disease. Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 54(4), M197–M202.
Kyle, D., Cummins, C. & Evans, S. (1988). Factors affecting the uptake of screening for neural tube defects. British Journal of Obstetrics and Gynaecology, 95, 560–564.
Lindemann, J.E. (1981). Psychological and behavioural aspects of physical disability. London: Plenum Press.
Meyers, A.R. (2000). From function to felicitude: Physical disability and the search for happiness in health services research. American Journal on Mental Retardation, 105, 342–351.
Oliver, M. (1996). Understanding disability: From theory to practice. New York and Basingstoke: Palgrave.
Shakespeare, T. (1993). Disabled people’s self organisation: A new social movement? Disability, Handicap and Society, 8, 249–264.
Sue, D.W., Carter, R.T., Casas, J.M. et al. (1998). Multicultural counselling competencies: Individual and organisational development. Thousand Oaks, CA: Sage.
Swain, J. & French, S. (2000). Towards an affirmation model of disability. Disability and Society, 15(4), 569–582.
Wahl, A., Moum, T., Hanestad, B.R. & Wiklund, I. (1999). The relationship between demographic and clinical variables and quality of life aspects in patients with psoriasis. Quality of Life Research, 8, 319–326.

Weblinks

Disability studies archive: tinyurl.com/6puwu
Disability Now: www.disabilitynow.org.uk
British Counsel of Disabled People: www.bcodp.org.uk

 

Disability and the parenting paradox

Lisa Woolfson on the challenges facing the parents of disabled children.

Parents of disabled children face all the usual challenges of parenting: how to teach their child to sleep through the night; how to help them develop independence; how to ensure they are successful, academically and socially. But because we live in a society that views disability as a tragedy (e.g. Barton, 1996), parents of disabled children are likely to experience additional parenting challenges, such as coping with family and friends’ responses to disability. Furthermore, caregiving demands can provide a daily challenge, with child behaviour problems frequently reported (e.g. Roberts & Lawton, 2001). What help is available to them from psychological theory?

Importance of cognitive change

Recent research has focused on effective use of cognitive change in adapting to parenting a disabled child. For example, Lustig (2002) found that cognitive reframing of problematic events as manageable, rather than passive acceptance that parenting a child with a disability is problematic, was associated with family adjustment. Parents in another study (Scorgie et al., 1999) reported learning to think of their children as ‘children’ rather than ‘disabled children’, and viewing themselves as parents rather than therapists. Scorgie and Sobsey (2000) reported changed perception of what was important in life in three areas: personal growth, relations with others, and overall values. Parents in this study reported greater compassion, stronger marriages, expanded friendship networks, and making the most of each day.
But why is cognitive change required? Perhaps sharing societal beliefs about disability being a tragedy isn’t compatible with effective parenting of disabled children. Parents of disabled children may have a particular set of social-cognitive dimensions to address and may need to develop new attitudes and beliefs about disability in general and their child’s disability in particular. For example, when considering the area of problematic behaviour in disabled children, I have suggested (Woolfson, 2004) that viewing behaviour problems as part of the disability can hinder parents from teaching their children discipline as they would with typically developing children. 

Which frameworks might help?

It is important then for us to understand parents’ beliefs about disability and about child-rearing. Only in this way can proposed interventions be tailored appropriately to parents’ needs. Psychological frameworks that have been applied to other areas can usefully be applied to this field.
For example, the self-regulation model (Leventhal et al., 1992) provides a valuable framework for exploring patients’ views of their illness and how these regulate coping outcomes. The key idea here is that patients’ beliefs about their illness, for example what impact it will have on day-to-day living or whether it can be cured, play an important role in how they cope with that illness and in health outcomes. It is currently being used in the field of adult chronic illness, for example with Huntington’s disease (Helder et al., 2002) and irritable bowel syndrome (Rutter & Rutter, 2002), to investigate patients’ cognitions about the nature, length, cause, outcomes and curability of the conditions.
These dimensions may provide a useful framework for exploration of representations of disability, as for illness. Furthermore they may be applicable beyond regulation of self, as in the model, to regulation of other, where the focus is on parents’ beliefs about disability not in themselves but in their children. Parents’ beliefs about their child’s disabilities across the dimensions of nature of condition, causes, consequences and extent to which the condition might be cured or controlled, might similarly impact on parental coping, parenting behaviour and child well-being outcomes (such as child behaviour and social adjustment).  
Another valuable framework for examining people’s beliefs about what has caused a particular outcome is Weiner’s (1985) attribution theory. Attributional causes are classified as to locus (due to self or circumstances?), stability (typical of me or just chance?) and controllability (can I do something to change this?). Attributional analysis has been used in a number of areas related to, but not directly focused on, the parenting of developmentally disabled children. For example, there are several studies on the attributions of children with learning difficulties (e.g. Robertson, 2000); on parent attributions and child achievement (e.g. Georgiou, 1999); parent attributions and child behaviour (e.g. Bugental, 1987; Miller, 1995); and parental attributions and child-rearing practice (e.g. Himelstein et al., 1991).
Applying an attribution framework to parenting developmentally disabled children, Chavira et al. (2000) found that most of the mothers in their sample did not perceive their disabled children as being responsible for any problematic behaviour. However those who did experienced negative emotions. This finding extends beyond the study’s Latina mothers to other populations and to children without disabilities (e.g. Bugental et al., 1989). 

A parenting paradox

So we have a thorny situation. On the one hand, attributing responsibility to the child for problematic behaviour is linked with parental negative emotional reaction thatis itself associated with harsh parent behavioural responses (Graham et al., 2001), and aggressive child behaviour (Dix & Lochman, 1990); on the other hand, in order to begin to effect change in their children’s behaviour, parents need to view their children as having some responsibility and control over their behaviour.
Like parents of typically developing children, parents of children with developmental disabilities can also try to teach their children how to behave in more socially acceptable ways. Of course, many parents will not require professional interventions to address this; but for those who do, involvement can focus on three key areas. Certainly advice on strategies for management of their child’s behaviour will be a key area. But in order to help parents effect change in their child’s behaviour, psychologists may also need to help them identify cognitions about responsibility and control that may be barriers to planned strategies. Where parents view difficult behaviour as a necessary part of the child’s disability, psychologists can work to persuade them that behavioural improvement is something that parent and child can try to address, even though goals for change may be modest. Parents of children with cerebral palsy reported examples of such cognitive shifts following an early intervention programme (Woolfson, 1999), e.g. ‘I try now not to let her get away with things because of the cerebral palsy’, ‘I do check her now because she’s got to learn’. Parents in this study reported the positive effects of taking an active approach with their children: ‘I feel as if I’m actually doing something to help her. I feel much better about her and me.’
For some children with severe disabilities, behavioural change will be difficult to effect and even small changes will require considerable parental perseverance. Some of my most recent research suggests that parents of children with learning disabilities who used behaviour control in their parenting experienced more stress than parents who were more laissez-faire in their approach. Trying to achieve behavioural change, with its implications of parental and child responsibility and the negative affect that may be associated with this, suggests that a third key area for psychologists is provision of emotional support for parents who are engaged in such an emotionally demanding task.

- Dr Lisa Woolfson is a senior lecturer with the Department of Psychology, University of Strathclyde. E-mail: [email protected].

Weblinks

Dr Woolfson’s homepage: www.strath.ac.uk/Departments/Psychology/
staff/woolfson.html
ParentView: tinyurl.com/6slaq

Discuss and debate

What does responsibility and control mean for a child with severe learning difficulties and communication impairments?
To what extent can psychological models of illness be applied to disability?
Have your say on these or other issues this article raises. Write to our Letters page on [email protected] or at the Leicester address – 500 words or less, please. Or you can contribute to our online forum on this or any other topic – go to www.thepsychologist.org.uk and follow the links.

References 

Barton, L. (1996). Sociology and disability: Some emerging issues. In L. Barton (Ed.) Disability and society: Emerging issues and insights (pp.3–17). London: Longman.
Bugental, D. (1987). Attributions as moderator variables within social interactional systems. Journal of Social and Clinical Psychology, 5, 469–484.
Bugental, D., Blue, J. & Cruzcosa, M. (1989). Perceived control over caregiving outcomes: implications for child abuse. Developmental Psychology, 25, 532–539.
Chavira, V., Lopez, S., Blacher, J. & Shapiro, J. (2000). Latina mothers’ attributions, emotions and reactions to the problem behaviours of their children with developmental disabilities. Journal of Child Psychology and Psychiatry, 41, 245–252.
Dix, T. & Lochman, J. (1990). Social cognition and negative reactions to children. Journal of Social and Clinical Psychology, 9, 418–438.
Georgiou, S. (1999). Parental attributions as predictors of involvement and influences on child achievement. British Journal of Educational Psychology, 69, 409–429.
Graham, S., Weiner, B., Cobb, M. & Henderson, T. (2001). An attributional analysis of child abuse among low-income African-American mothers. Journal of Social and Clinical Psychology, 20, 233–257.
Helder, D., Kaptein, A., van Kempen, G., Weinamn, J., van Houwelingen, H. & Roos, R. (2002). Living with Huntington’s disease. British Journal of Health Psychology, 7, 449–462.
Himelstein, S., Graham, S. & Weiner, B. (1991). An attributional analysis of maternal beliefs about the importance of child-rearing beliefs. Child Development, 62, 301–310.
Leventhal, H., Diefenbach, M. & Leventhal, E. (1992). Illness cognition. Cognitive Therapy and Research, 16, 143–163.
Lustig, D. (2002). Family coping in families with a child with a disability. Education and Training in Mental Retardation and Developmental Disabilities, 37(1), 14–32.
Miller, S. (1995). Parents’ attributions for their children’s behaviour. Child Development, 66, 1557–1584.
Roberts, K. & Lawton, D. (2001). Acknowledging the extra care parents give their disabled children. Child: Care, Health and Development, 27, 307–319.
Robertson, J. (2000). Is attribution training a worthwhile classroom intervention for K-12 students with learning difficulties? Educational Psychology Review, 12(1), 111–134.
Rutter, C. & Rutter, D. (2002). Illness representation, coping and outcome in irritable bowel syndrome. British Journal of Health Psychology, 7, 377–391.
Scorgie, K. & Sobsey, D. (2000). Transformational outcomes associated with parenting children who have disabilities. Mental Retardation, 38, 195–206.
Scorgie, K., Wilgosh, L. & McDonald, L. (1999). Transforming partnerships. Education and Training in Mental Retardation and Developmental Disabilities, 34(4), 395–405.
Weiner, B. (1985). An attributional theory of achievement, motivation, and emotion. Psychological Review, 92, 548–573.
Woolfson, L. (1999). Using a model of transactional developmental regulation to evaluate the effectiveness of an early intervention programme for preschool children with motor impairments. Child Care, Health and Development, 25(1), 55–79.
Woolfson, L. (2004). Family well-being and disabled children: a psychosocial model of disability-related child behaviour problems. British Journal of Health Psychology, 9, 1–13.

 

Community psychology - Towards an empowering vision of disability

Rebecca Lawthom and Dan Goodley urge psychologists to enable rather than disable.

Is psychology a source of oppression for disabled people, or a resource for enabling individual and collective empowerment? Historically, psychology’s impairment focus has risked presenting a personal tragedy view of disabled people. This must not remain the case.
British disability studies – the radical academic and social movement

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Comments

I have started a group in our community for all this.

Register at https://www.mpapro.co.uk/community/registration

Then find https://www.mpapro.co.uk/community/groups/29-eawg and apply to join (it’s a closed group)

And then see this discussion https://www.mpapro.co.uk/community/groups/29-eawg/apps/27-discussions/item/35