Excerpted from Chapter 1 of Aging, Rights, and Quality of Life: Prospects for Older People with Developmental Disabilities, edited by Stanley S. Herr, J.D., D.Phil., & Germain Weber, Ph.D.

Copyright © 1999 Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Concepts and Global Perspectives

Older people with developmental disabilities were born into a world that had far different expectations for them than those of Western societies at the turn of the 21st century. For most of the 20th century, they were not expected to have access to education and habilitation programs that were individualized and guaranteed by law, nor were they expected to be able to make choices or to enjoy the benefits of self-determination. Few were expected to enter the labor market at all, let alone compete with people without disabilities for mainstream jobs. Until the 1970s, few residential options existed for people with developmental disabilities. Many societies did not even expect these individuals to survive past childhood, let alone until old age. Before the advent of self-advocacy and the disability rights movement in the early 1970s, people with developmental disabilities were viewed as people who needed to be sheltered and sequestered from society. Through myths and stereotypes, they were often regarded as "eternal children" who needed to be dealt with in a paternalistic way and to have all decisions made for them by others. New philosophies and newfound facts that emerged at the end of the 20th century eroded the limiting expectations of the past. As one family member of an individual with developmental disabilities expressed it, "They told us my brother, who has Down syndrome, would not live past 4. Now he's 43 and going strong. They told us he would always need to live in an institution. Now he's in a group home" (M. May, personal communication, September 1998). In contrast with the era before disability rights, when adults with disabilities were expected to go directly from the schools or makeshift substitutes to the welfare rolls, many more individuals with mental retardation are prepared for the labor market and do in fact enter it. In Sweden, for example, the number of such individuals receiving benefits (called pensions in Sweden) dropped by 70% over a 22-year period, with the decline being attributed to an increase in job placements (Grunewald, 1997). Thus, this expression of normalization can be justified on economic as well as humanitarian grounds.

A Global Perspective

In some parts of the world, the old paradigms of dependence and despair persist. In developing nations and the emerging states of Eastern Europe, people with developmental disabilities are often viewed, if they are lucky, as objects of charity. They often struggle for a measure of subsistence. Their concerns and aspirations are scarcely visible to the general citizenry. Some are hidden in family members' homes; others are forced to become beggars in the streets.

With the United Nations' (UN's) designation of 1999 as the International Year of Older Persons, disability rights movement activists have an opportunity to focus the international community's attention on the plight of older people with developmental disabilities. Indeed, the Larnaca Resolution (1998) and efforts by the American Association on Mental Retardation (AAMR) and other national and international nongovernmental organizations (NGOs) seek to do just that. They call on the UN and national committees to direct global attention specifically to the rights and needs of older adults with developmental disabilities in countries at all stages of socioeconomic development (Herr, 1998). Although developed countries can focus on raising the quality of life and the level of compliance with sometimes subtle and sophisticated rights of older adults with disabilities, elsewhere the problems that these individuals face are stark. Sheer survival and access to the most basic supports still loom large for many people with disabilities because of their devalued status in their countries and their dire poverty.

Older people with developmental disabilities constitute one of the most vulnerable segments of one of the world's largest minorities: the 500 million adults and children with disabilities. In developed and developing countries alike, older people with developmental disabilities as part of this minority face what UN Secretary-General Kofi Annan termed a "silent crisis" of discrimination compounded by their disproportionate placement "among the poorest strata of society" (1997, unpaginated). The publication of this book during the UN's 1999 International Year of Older Persons offers a resource for mapping the dimensions of this particular crisis and articulating positive alternative futures for older adults with disabilities.

Prospects for A Good Old Age

This book primarily focuses on the prospects for the population with developmental disabilities to reach and enjoy a good old age in relatively affluent countries. It explores some of the major advances in improving the quality of life of older adults with developmental disabilities while ensuring respect for their human and legal rights. It analyzes the relationship between these two areas of concern and shows that they are inextricably connected. Indeed, many measures of quality of life have explicit rights dimensions (see Chapter 6), and many rights require conditions and supports that meet at least a minimum quality standard (see Chapters 2 and 5). The achievement of those rights and quality-of-life benchmarks poses major challenges both to the developmental disabilities field and to society as a whole. The international scope of this enterprise — and of this book — underlines the need to communicate and exchange innovations across national boundaries. Just as normalization and integration concepts once emerged in northern Europe and then influenced practices in many parts of the rest of the world (Hanamura, 1998), so further innovations in theory and practice can spring up anywhere in the world and be disseminated rapidly.

These challenges are exacerbated by well-established, even explosive, demographic trends. Through advances in health care and improvements in living environments, more people with developmental disabilities are living longer and more vigorous lives. More than 2,000 years ago, Cicero commended old age as "the crown of life, our play's last act" (Falconer, 1958, p. 23). For many people with developmental disabilities, the concepts of inclusion, self-determination (Sands & Wehmeyer, 1996), and person-centered planning (Wehmeyer & Sands, 1998) contain the promise of a better last act than the conditions that they experienced in their youth and their younger years. Toward this end, our book presents some examples of good practice in the field of aging and developmental disabilities. As the case studies in this book demonstrate, however, good practice often comes as the product of hard-won lessons after human tragedies and policy confusion have already occurred. In too many cases, the crown of life rests uneasily until vigilant advocacy takes place and succeeds.