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Using the “Spina Bifida and Hydrocephalus: Our Heritage” exhibition as a case study, the purpose of this paper is to look at how heritage exhibitions can be used to address social isolation and also serve as a way to give an identity to a community with a disability.

The paper reviews the process of creating the exhibition, some of its most significant elements and its impact.

A heritage exhibition can be an effective way to address social isolation and inclusion.

This was a unique exhibition with considerable impact on members of the Spina Bifida and Hydrocephalus community and with the potential to have a broader value in promoting change in attitudes towards disability.

Students with physical and health impairments represent a small but growing group of individuals with diverse educational needs. They are those students whose physical limitations or health problems interfere with school attendance or learning to such an extent that special services, training, equipment, materials, or facilities are required. Therefore, the purpose of this chapter is to discuss some of these impairments and acquaint both general and special educators with interventions for helping students with physical and health impairments succeed.

In Great Britain in the 1960s and 1970s, a physician (Lorber, 1971) developed criteria that would exclude from treatment many babies born with spina bifida (“open spine”) based on what he perceived to be a poor projected quality of life. In the US, the parameters of the modern debate developed around the case of “Baby Doe,” a child born in the early 1980s with Down syndrome and duodenal atresia, an intestinal blockage. Without surgery to correct the blockage, the baby would not survive. Because the infant also had Down syndrome, which typically includes some degree of intellectual disability, the parents decided not to consent to the surgery. The parents’ decision was met with outrage by disability advocacy groups, as was a similar decision a few years later to forego surgery to repair a myelomeningocele (spina bifida) in the case of “Baby Jane Doe.” The publicity surrounding these and other non-treatment decisions resulted in the US in the passage of the Child Abuse Amendments of 1984, largely through the efforts of then Surgeon General C. Everett Koop. This legislation effectively mandated universal treatment of newborns with disabilities. However, several court cases since have resulted in rulings allowing parents to discontinue life support based on quality-of-life issues, resulting in the establishment of state standards in addition to the federal ones (Clark, 1994). Still, the norm in the case of Down syndrome and spina bifida, two of the most common childhood impairments apparent at birth, continues to support the treatment of virtually all children born with these conditions. As a result, most post-natal decision making today involves infants with other, often more serious, impairments that result from perinatal complications or from extreme prematurity. Even in those cases, a bias toward treatment seems to prevail (Levin, 1990).

The purpose of this paper is to comment on the article “Spina Bifida and Hydrocephalus: Our Heritage – the role of heritage exhibitions in tackling social isolation.”

This provides some further reflection and points for discussion on topics arising from the themes in the original article.

Issues are raised about the medicalisation of conditions and the ways in which a social and cultural model of disability challenges preconceptions and assumptions about personhood and victim status. Reference is made to the broader context of hidden histories and the ways in which people with learning disabilities are now taking active roles in reclaiming the story of their lives in the past and now.

The paper aims to raise awareness of critical issues of learning disability history prompted by the original paper.

Scientists have long suspected that deficiencies of folic acid may contribute to defects such as spina bifida and hydrocephalus, both known as neural tube defects. Twenty‐five years ago it was suggested that deficiency of folic acid, one of the B vitamins, might be the culprit. Now it has been proved.

This article describes the use of the National Health Interview Survey-Disability Supplement (NHIS-D) to estimate the prevalence and general characteristics of persons with intellectual and/or developmental disabilities in the non-institutionalized U.S. population. It provides estimates of the populations of non-institutionalized persons with intellectual disability (defined categorically), with developmental disabilities (defined functionally) and with both. It describes how the prevalence of intellectual and/or developmental disabilities varies by age, poverty status and other demographic variables. It describes how intellectual disabilities and developmental disabilities are operationally different, and how the people identified in those groups differ substantially both in number and in demographic characteristics. An analysis of poverty status among adults reveals that poverty is significantly more common for women, people who were not white, people with intellectual or developmental disabilities, adults with less than 12 years of education, and people living with a spouse or alone (as compared to people living with relatives such as parents or siblings).

FOLIC ACID AND NEURAL TUBE DEFECTS All women planning pregnancy should increase their intake of folic acid to help prevent the risk of their child being born with spina bifida, says Dr Kenneth Caiman, the Government's Chief Medical Officer. In July 1991, the results of a Medical Research Council trial on the effects of folic acid in preventing recurrence of neural tube defects in subsequent pregnancies were published in The Lancet. The trial showed that the chance of a further child having the defect was much reduced where women had taken 4 milligrams of folic acid daily before conception and through to the 12th week of pregnancy.

Many youth with a disability would like to work but encounter challenges finding employment. Vocational interventions can help youth with disabilities gain employment skills and jobs. In this chapter, we assess: (1) how vocational programs for youth with physical disabilities influence employment-related skills and outcomes; and (2) the common components of vocational programs for these youth.

Our research team conducted a systematic review of peer-reviewed literature with six major databases: Medline, PsychInfo, Scopus, Web of Science, CINAHL, and Embase. Publications selected for inclusion met the following criteria: (1) peer-reviewed journal article, dissertation, or conference paper, published between 1990 and January 2014; (2) addresses vocational program or intervention for youth with physical disabilities; and (3) sample includes at least 50% youth (aged 15–25) with an acquired or congenital physical disability.

Of the 4,588 studies identified in our search, 8 met the inclusion criteria. In six of the studies, the majority of participants gained paid or unpaid employment after participating in a vocational program. Five studies showed improved knowledge and perceptions of employment. Most studies showed improvements in at least one vocational outcome such as knowledge about job searching, job interviews, advocating for workplace adaptations, and how to access services and supports. Common intervention components included: experiential learning, mentorship, and family involvement. Most programs took place in the community or rehabilitation centers that varied in length and were delivered by a variety of professionals. Most programs had a combination of group and individual components.

There is some evidence to suggest that vocational programs can influence employment outcomes for youth with physical disabilities. However, further research is needed with more rigorous and longitudinal designs.

For most people, especially those with fixed incomes, household budgets have to be balanced and sometimes the balance is precarious. With price rises of foods, there is a switch to a cheaper substitute within the group, or if it is a food for which there is no real substitute, reduced purchases follow. The annual and quarterly reviews of the National Food Survey over the years have shown this to be so; with carcase meat, where one meat is highly priced, housewives switch to a cheaper joint, and this is mainly the reason for the great increase in consumption of poultry; when recently the price of butter rose sharply, there was a switch to margarine. NFS statistics did not show any lessening of consumer preference for butter, but in most households, with budgets on a tight string, margarine had to be used for many purposes for which butter had previously been used. With those foods which have no substitute, and bread (also milk) is a classic example, to keep the sum spent on the food each week about the same, the amount purchased is correspondingly reduced. Again, NFS statistics show this to be the case, a practice which has been responsible for the small annual reductions in the amount of bread consumed per person per week over the last fifteen years or so; very small, a matter of an ounce or two, but adequate to maintain the balance of price/quantity since price rises have been relatively small, if fairly frequent. This artifice to absorb small price rises will not work, however, when price rises follow on one another rapidly and together are large. Bread is a case in point.

To understand how young men with disabilities react against overarching narratives of independence during the transition to adulthood in independent living and interdependent living arrangements with parents in order to address the gap between transition policy and real lived experience.

I use life history interviews and ethnographic “go-alongs” with nine men with mobility impairments to understand how they experience and make sense of independent living and interdependence during the transition to adulthood. Transcripts and field notes were analyzed using grounded theory methodology.

Data reveal diverging pathways participants took to interdependent living situation, rooting before transition, and returning during transition. These pathways are shaped by logics of residential decision-making: accessibility expectations and individual adaptability. Those who rooted before transition developed accessibility expectations that motivated them to remain living their parents’ homes while those who returned during transition relied on individual adaptability to overcome physical inaccessibility. Individual adaptability did not overcome inaccessibility – all returned to their parents’ homes. Pathways shape how each group of participants experienced and made sense of interdependent living arrangements and independent living. Those who rooted before transition found interdependence to be a route to increased independence, and did not consider independent living a marker of adulthood. Those who returned during transition found that the interdependence they experienced increased feelings of dependence.

Experiences and meanings emerging adults with disabilities have during the transition to adulthood reveal the complexity of interdependence and independent living. The pathways and the social forces shaping those pathways to interdependent living arrangements have implications for life course theory and disability policy.