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UN Programme on Disability   Working for full participation and equality

International Day of Disabled Persons
3 December 1998

International Day of Disabled Persons, 8 December 1998Panel Discussion on
Independent Living of Persons with Disabilities
(United Nations, 3 December 1998)

Planning for Disability

By Robert L. Metts, Ph. D.*

Panel Discussion Excerpts:

Today I wish to approach the topic of "Planning for Disability" from two new - and some may say - radical perspectives. Radical or not, they are nonetheless accurate and essential to an understanding of ANY disability issue.

The first is the premise that disability is normal. By normal, I do not mean that disability is the most common state in which people live. It isn't. Instead, I mean that all kinds of disabilities happen to all types of people at all stages in their "normal" human lifecycles.

Disabilities can occur at conception as a result of coincidental occurrences in the uterus. They can even be predetermined long before conception through the genetics of parents. Once born, all human beings are then subject to a myriad of disabling possibilities for the rest of their lives. And, for those of us lucky enough to reach old age, disability actually does become common, in addition to normal.

If you accept this premise, you are then confronted with two categories of implications: 1) Implications at the personal level; and 2) Implications at the family level.

The most fundamental implication at the personal level is that disabilities can happen to anybody at anytime. The most fundamental implication at the family level, is that the disability of one family member will affect all of the other actively engaged family members. At the family level, these two implications lead to the following conclusions:

1) Like individuals, families can be affected by disabilities at any time. 2) The probability that a family will be affected by disability increases as family size increases. (Members of a family of nine are three times as likely to be affected by disability than members of a family of three.)

In order to successfully plan for disability an individual or family must develop a strategy to meet the needs that disabilities bring. It is important, therefore, to understand that there are three distinct but interrelated stages of physical and social integration through which a person must pass in order to successfully overcome a disabling condition, each with its own set of specific needs.

  1. The first stage is surviving the disability and beginning to recover. The needs associated with this stage include basic information, physical and mental restoration, physical therapy, assistive technology, prosthetic appliances and devices, personal assistance, advocacy, and training in all of the activities associated with surviving and beginning to overcome a disabling condition.
  2. The second stage is becoming as self-reliant as possible and gaining social access. The needs associated with this stage include assistive technology, mobility training, housing, transportation, education, and recreation.
  3. The third and most advanced stage is gaining access to activities that give life meaning and purpose. For most people with disabilities, this translates into some combination of productive employment, contribution to family and community, and active participation in society as a whole. The needs associated with this stage include access to education, training, employment, social participation, and recreation.

Proper planning for disability is more difficult then it appears because the nature of a family's response to a disability will also depend on which family member it is that experiences the disability and at which phase it happens in his or her life cycle. A disability incurred by an infant or child presents a family with a very different constellation of needs than a disability incurred by a family's primary income earner or child raiser; and a disability incurred by an aging parent or grandparent presents yet another set of needs

Planning for disability is further complicated by the fact that the ability of individuals and families to successfully overcome disabling conditions also depends in large part on the physical and social environments in which they live. Which brings me to my second premise; The normalcy of disability is not recognized by most people in society, including those who are responsible for social policy.

Having experienced disability first hand for most of my life, I cannot help but believe that societies would have never created such bizarre and inappropriate disability systems if the able- bodied majority had realized that they or their family members might be forced to use them. After all, cultures and societies routinely subject people with disabilities to everything from institutionalized economic discrimination and social isolation to involuntary incarceration, infanticide and involuntary euthanasia.

Shortly after I contracted polio at the age of 18 months, my parents had to fight to keep me in the family because the so called experts wanted to put me into a state hospital for the rest of my life. Then my family had to fight the system to get me out of a "handicapped" elementary school where I was receiving a weird form of baby-sitting and no education whatsoever. When I was in middle school, my family had to fight the system again to keep me out of a class for retarded kids when school officials thought that I would be safer there than in the general school population where I might get knocked down.

And I was one of the lucky ones fortunate enough to live in a prosperous country at a prosperous time and to have an enlightened family willing to fight for my rights. A friend of mine with cerebral palsy had his life ruined when he was held back from graduating from middle school because he was given an "F" in handwriting. My wife and I also know of an institution for people with disabilities in California where a little disabled girl we knew was routinely shaved from head to foot because she was easier to wash that way. Would normal people allow these kinds of things to happen to a class of people they thought they had a reasonable chance of joining? OF COURSE NOT! Furthermore, if society understood that disability is normal its physical infrastructure would not be so needlessly difficult to use. There would not be multistory public buildings like schools and government offices without elevators, and architects would be forced to seek forms of artistic expression other than grand staircases. Lets face it, the hole in the floor toilet was not designed by a disabled person or by someone who actually considered the possibility that he or she might have to use it as a paraplegic or blind person.

The simple fact of the matter is that today's world presents a myriad of unnecessary obstacles to people with disabilities, both physical and social, that can only be explained by a collective disinterest on the part of the able-bodied majority born out of an ignorance of the fact disability can happen to anybody at any time.

Some of you may be thinking that problems for disabled people in developing countries stem more from a lack of resources than from ignorance. This is partially, but not completely, true. It is, of course, undeniable that limited resources in developing countries severely restrict the ability of disabled people to acquire the medical and rehabilitation services and equipment they need to meet the needs associated with Stage I of the process of integration. It is also true that limited resources make it harder for developing countries to overcome barriers in the natural environments. It is, however, a blessing in disguise that developing countries cannot afford the types of expensive parallel disability systems pioneered in the world's most affluent countries since these systems are simply inappropriate and ineffectual appendages tacked on to society by the ignorant majority in a vain effort to mitigate the consequences of the aforementioned unnecessary social and environmental inadequacies.

If developing countries become enlightened about disability issues, they will have most of the same opportunities that the rich countries do to improve the circumstances of disabled people. As a matter of fact, in many ways developing countries are in a better position because, unlike most rich countries, they will not have to tear down pre-existing ineffectual systems in order to build the new and better ones.

So, What are the implications of all of this for the discussion at hand? The fundamental conclusion that I draw from all of this is that it is virtually impossible in any country in today's world for an individual or family to adequately plan for disability.

The first reason for this is statistical. The shear number of disability related contingencies for which a family must prepare starts to become unbelievably huge when all possible disabilities are applied to all of the possible lifecycle stages of all members of a family. Though the probability that some member of a family will experience some form of disability is significant, due to the huge number of possibilities the probability of any given disability occurring at any given stage in the lifecycle of any given family member is so small that it is basically not worth planning for. The only exception to this rule is disability due to old age, which is so highly probable that it can and should be planned for.

The second reason that planning for disability is difficult is that many of the most important obstacles that disability presents to individuals and families are cultural, social and environmental. These obstacles (e.g. architectural barriers, inaccessible transportation systems, inadequate rehabilitation systems, negative social stereotyping, discrimination, restricted access to education and employment) simply cannot be overcome by proper planning on the part of the vast majority of individuals and families. Though the rich may be able to buy their way around some of them, most families can't.

Then, Where Do We Go From Here?

The current situation suggests a combination of personal and social interventions to mitigate the negative consequences of disability. On the personal level, individuals and families in relatively affluent circumstances can significantly improve their chances of successfully passing through stage one, which involves physical restoration and rehabilitation, by making wise decisions about medical insurance coverage.

Beyond that, however, individuals and families should base their planning for disability on the simple understanding that (1) disabilities can happen to them and their families at any time; and (2) social institutions will not be of much help, and may even be detrimental to their attempts to deal with the consequences of disabilities. If a family is privileged enough to have earnings beyond current consumption (the exception, not the rule) it would, therefore, be wise to set something aside in case of disability.

The facts that I have presented today also suggest that individuals and families should prepare for disability by supporting the efforts of people who have already experienced disabilities to educate the public about the normalcy of disability, and by supporting the emerging movement toward policies and strategies designed to remove the unnecessary architectural and social barriers that currently exist.

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* Robert L. Metts, Ph D. is an Associate Professor of the Department of Economics, College of Business Administration, University of Nevada at Reno (United States). Presentation at the "Panel Discussion on Independent Living; life cycle approaches to sustainable and secure livelihoods 0f persons with disabilities (United Nations, 3 December 1998)". The views expressed are those of the author and do not necessarily represent the views of the United Nations Secretariat.

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