Excerpts

Introduction

Yesterday in a rural village in Taiwan, Huang, a widow in her fifties, rose just after 7:00 in the small home she owns and shares with three of her four children. She took a walk after breakfast – she has a good appetite, eats most foods, and does not take any regular medication. As usual, she cycled to carry out her day’s work. Cycling and walking are her main forms of exercise. The money she earns from collecting boxes and waste paper for recycling supplements her income. In addition, she receives a government disability allowance, contributions form her children, and a survivor’s pension, as her husband was a soldier. She does not worry about being alone or uncared or in the days to come because she feels her children will always be around. Yesterday was much the same as all of the other days since her husband’s death a few years ago. She rates her own health as good, and overall she feels happy. She can see her children every day, so she does not feel lonely.

Yesterday in a town in Norway, Kristin awoke in the group home she shares with three housemates. As usual, she washed, dressed, and prepared breakfast. Later, like her counterpart in Taiwan, she took a walk. Kristin walks more slowly these days. She wears a hearing aid and uses earphones to listen to the radio. She did some knitting, went window-shopping, and watched television after supper. Kristin talked to her friends, washed her hair, and tidied her room before going to bed. She says she has “trouble understanding” and supposes that the phrase intellectual disability best describes her major difficulty. Kristin relies on others: a home helper, staff living nearby, and neighbors. Although she receives a regular government social insurance benefit, she does not know what her annual income is.

Kristin was born in a rural area nearly 60 years ago and recalls her early years doing farm work and babysitting. The best aspects about this were “being outside in the summer and doing important things.” The worst was that that it was heavy, often dirty, work. Kristin left home early:

After 12 years, I was in an institution and visited them (my family) at holiday times, and they visited me. It was said to be away from them, especially when they took my daughter away. Friends and staff were nice when my father dies. Sad when they took my daughter away, but everyone said it was good for her.

When asked what the secret to her life is, she is not sure but says, “Now I know I am okay, like normal.” She wonders about the future:

Maybe when I get older I can no longer live here because of the stirs and I live on the second floor. To live alone or to have my daughter live with me, but that is a dream.

Separated by geography and culture, one more reticent, the other more voluble, these two women with intellectual disabilities have each shaped a successful life for nearly six decades. Huang relied on an early marriage to lend status and protection, and she has never used formal support services. Rather, she intends to live with her adult children, and they are her main supports now and, she suggests, in the years ahead. Even now, she works to contribute to her own and her family’s livelihood. In Norway, Kristin has a long history of involvement with various health, social, and housing agencies and lived for many years in an institution. She, too, is a parent, but she was separated from her child many years ago. That child will play no part in her mother’s old age. Millions of women like Huang and Kristin spent the day yesterday engaged with parents, siblings and other kin, friends, neighbors, or professional support workers. A small number, 167, are represented in this book. Yesterday, some attended sheltered workshops in France, Belgium, Ireland; nearly all of these women are single. Many women were otherwise occupied – they traveled by ferry to an advocacy meeting in New Zealand, helped to care for young children in the family home in Argentine, worked in a small shop in Finland, went out for shopping and afternoon tea in Scotland. Women in Norway regarded the sinter landscape, recalling their youth on skis and dreaming of the summer to come.

This book tries to capture different facets of experience: being an individual woman in late middle and older adulthood, being identified as having a disability, being a member of a distinctive culture, having been born during the middle decades of the 20th century. Older women recall the Second World War and even their parents’ accounts of the First World War. Younger women are mindful of current affairs in the Middle East. In this chapter, we adopt a global view to introduce the study, offering reasons why it is important to understand more about the experiences of growing older for women with intellectual disabilities. We mark the books’ limitations and set the scene for the stories to follow.

A Global View

How many women worldwide have intellectual disabilities? Is their status similar across countries? What are their family circumstances? Even now, answers to these essential questions remain unclear. First, it is estimated that about 10% of the world’s population may have some sort of disability, and accordingly, it is expected that about 300 million women are in this group (World Health Organization, 2002). If between 1% and 3% of all individuals worldwide have intellectual or other developmental disabilities, then the two women in rural Taiwan and Norway belong to a cohort that is at least 30 million strong. And most of these women live in developing countries. It has been suggested that current patterns of gender bias in a few countries where adult women are estimated to be missing in the general populations arose because women in those countries are less likely to live to maturity as the result of policies favoring the survival of boys (Sen, 1999). We cannot say with confidence whether there are fewer women than might otherwise be expected in this special population of people with intellectual disabilities.

Second, the absence of reliable data about the population of people with intellectual disabilities is linked to disparities in methods used to define and record the presence of individuals in this group. Countries vary markedly in their practices, even in an apparently homogenous region, such as Europe (see Chapter 3). Not all countries have the inclination or resources to carry out a national census of the general population, let alone a separate tally of individuals with disabilities. It is likely, too, that many women are simply invisible to official scrutiny in their countries. Those with a mild level of intellectual disabilities may grow to adulthood without being diagnosed and lead marginal lives shadowed by poverty, dependency, stigma, or seclusion. Cultural differences both stem from, and exert influence on, the ways in which disabilities are construed. Many social and economic factors contribute to local practices. Patterns of employment – as a consequence of labor migration for example – may alter family composition if the breadwinners must leave home for long periods to seek employment. Their absence will in turn limit the capacity of a family to care for a member with a disability. One consequence may be a swelling demand for special programs for people with disabilities and thus a new social category in a culture in which such men and women had hitherto been unremarkable (Ingstead & Whyte, 1995).

Cultural expectations and practices are diverse. In a multinational study of attitudes, it was evident that the public opinion about whether individuals with intellectual disabilities should live with their families varied form country to country (Siperstein, Norrins, Corbin, & Shriver, 2003). In a very large survey with 8,000 participants in 10 countries, including the United States and Ireland, the vast majority of all surveyed believed that individuals with intellectual disabilities should attend special schools, and one third endorsed separate or sheltered workshops (Siperstein et al., 2003).

A historical survey of the status of people with disabilities reveals great diversity in how people are identified and what places they have taken up in their own cultures. Social constructions have affected the status of people with disabilities in different ways over the years. In much of Europe, for example, their treatment as cared for but marginalized people during the Middle Ages evolved into contemporary themes of rehabilitation and specialized institutions (Stiker, 1997). In the United States, the sheer size and number of regimented institutions during the 19th and 20th centuries grew alongside a corresponding conceptual process that Trent (1994) called “inventing the feeble mind.” The tide in favor of large, separate institutions turned only relatively recently, and traces persist in many countries.

Within this global context, the identities and experiences of people with disabilities as men and women in their own societies have been muted. This muffled silence is perhaps most striking among older women with intellectual disabilities.