Sociology of Down Syndrome

Advocates for people with Down syndrome stress that affected individuals have the same human rights and emotions as any other human beings. The abuse and forcible institutionalization of people with Down syndrome was closely linked to early twentieth-century racial and eugenic theory, culminating in the killing of many people with Down syndrome and other disabilities by the Nazi government in Germany in the 1930s-1945, and the creation of compulsory sterilization programs around the world which targeted the mentally disabled.

Today, Down syndrome is considered grounds for abortion in an increasing number of countries. The number of children born with Down syndrome is decreasing due to the large number of abortions following an early diagnosis of Down syndrome during pregnancy. In a hearing before the German Parliament, doctors stated that 90% of all fetuses prenatally diagnosed with Down syndrome are aborted. This number is consistent with the official statistics, wherein 1500 children with Down Syndrome should, statistically, have been born per year (at a prevalence rate of 1:600), but only 63 per annum were listed in the 1995 birth register.

Advocates for people with Down syndrome also point to various factors, such as special education and parental support groups, that make life easier for parents of children with the disorder.

In most developed countries, since the early 20th century many people with Down syndrome were housed in "mental sub normality" institutions or colonies and excluded from society. However, nowadays parents, educators and other professionals generally advocate a policy of "inclusion", bringing people with any form of mental or physical disability into general society as much as possible. In some countries, people with Down syndrome are educated in the normal school system, if practical.

Despite this change, the reduced abilities of people with Down syndrome pose a challenge to their parents and families. While living with their parents is preferable to institutionalization for most adults with Down syndrome, they often encounter patronizing attitudes and discrimination in the wider community.

Although some people with Down syndrome are able to run their own household, apply for a regular job, get a driver's licence and take care of insurances, etc, by themselves, most need some degree of assistance. Whilst preferable to institutional living, the 1980's and 1990's experiments with group homes were not especially successful, and a number of new models are emerging. In the past few years the independent (supported) living model has found favor with UK governments. With Direct Payments, some people are able to employ their own staff. Individuals can take on their own tenancy, and receive support from a skilled caregiver in organizing their own life, studies, career, and outside interests.

Many children with Down syndrome in the UK are now educated in mainstream schools, learn to read and write, and are likely to live productive and valued lives as part of their families and communities. However, full-time mainstreaming proves difficult after the first few years of schooling, because the intellectual gap between children with and without Down syndrome widens at this age. Complex thinking as required in sciences but also in history, the arts, and other subjects is often beyond their abilities, or achieved much later than in most children. Therefore, if they are to benefit from mainstreaming without feeling inferior most of the time, special adjustments must be made to the curriculum.

Another issue is the danger of underestimating their abilities. This was more common in institutions, where Down Syndrome children often failed to reach their potential despite being capable of much more, but this issue is often present in school as well. For example, a recent study successfully taught 3 year olds with Down Syndrome, who would be developmentally at an 18 month old level, to read, and found their speech development was accelerated. A few people have even suggested that children with Down Syndrome may have normal intellectual potential, but are greatly underestimated.

Some European countries such as Germany and Denmark advise a two-teacher system, whereby the second teacher takes over a group of disabled children within the class. A popular alternative is cooperation between special education schools and mainstream schools. In cooperation, the core subjects are taught in separate classes, which neither slows down the non-disabled students nor neglects the disabled ones. Social activities, outings, and many sports and arts activities are performed together, as are all breaks and meals.

Individuals with Down syndrome share many of the characteristics of their parents, with an average life expectancy of 49 years in the USA versus 77 years for the whole population, having increased from 25 years. This increase is credited mainly to improved diet, housing, and health and social care. Many children and adults with Down syndrome enjoy a satisfactory quality of life, and the extra chromosome may even confer some health benefits, such as reduced incidence of certain cancers caused by double immunity. Lung cancer, for instance, is virtually unknown in people with Down syndrome. Conversely, leukemia is more common than in the general population.

Men with Down syndrome are usually infertile, but some women with Down syndrome have had children. A woman with Down syndrome could pass Down syndrome to her children.