By Anne C. Woodlen

There are two vantage points from which to view disability. One is public policy and the other is personal practice.

Public policy covers finances, transportation, housing, employment and health care. Personal practice, in addition to those things, includes all that sticky stuff about wanting to help but not knowing what you’re getting into.

Three groups of disability

Before we talk about either public policy or personal practice, we should recognize a fact that is largely ignored: people with disabilities fall into three separate and identifiably different groups. Both public policy and personal practice should be informed by the needs and goals of the different groups.

Born disabled. The born-disabled group has always been disabled. Disability is their normality. How they handle it is largely determined by what their parents and other adults taught them as children. If their significant adults taught them that they are just as good as anybody else, and what matters most is intelligence and spirit, then they will grow up to become contributing members of society. They will go to college, get jobs, get married and buy houses. They need public policy that will, literally, open doors for the incompetent bodies that carry their great spirits.

If, when they were impressionable children, adults taught them that they are losers, then their spirits will be broken. Public policy can’t fix that. Personal practice might. If adults taught them that they are “special” then they may develop a lifestyle of entitlement: they think they are entitled to have people wait on them and take care of them. Members of this subgroup can be unpleasantly demanding.

Too often, what parents and other adults are most apt to teach disabled children is that they are vulnerable and can’t quite cut it. Too many people who are born disabled are raised to see themselves as weak and in constant need of extra protection. These are people who become dependent on personal care.

There is an astronomical amount of public money available for products and services for the born-disabled. There is a simple reason for this: disabled children have parents who advocate for them. If a child is born deaf or blind or with cerebral palsy, the parents know it before the child is old enough for kindergarten and they set out to do everything they can to ensure that their child has the best life possible.

A multimillion-dollar genetic research corporation came into being because a Harvard graduate’s children were born with a genetic disease. Parents of children with disabilities bring all their strength, intelligence and money to bear on solving the problems their children confront. One of the most powerful things these parents do is organize, lobby and get legislation passed that will fund a life-time of services and products for their children.

One married couple, in which both partners have cerebral palsy, worked enough to make a down payment on a house. After they moved in, government funding was available to spend $50,000 rehabbing the house to meet their needs, including putting in an elevator and moving interior walls.

Disabled and returning. The disabled people in the second group had a typical upbringing, then became disabled as adults but intend to regain a full life. One (frequent) manifestation of this group is the guy who was riding in a car and not wearing his seat belt. There was an accident, he suffered brain or spinal cord injury, did his time in the ICU and rehab, and now is working his way back.

Unlike the born-disabled group, people with adult on-set disability have a good memory of life as an able person. They know what they are missing and they want it back. These people have particularly strong needs for independence, respect and control. They want to do it themselves. They embrace the challenge.

There is pathetically little public funding for this. We are a society that celebrates sickness and does not understand that health is more than the absence of sickness. We are prepared for people to get worse, not better. For example, if you are very sick and cannot walk then the government will buy you a wheelchair. If you get better and start to walk a little, the government will not buy you a cane—because they already bought you a wheelchair. You are supposed to stay in it.

Additionally, disabled-and-returning adults receive very little personal support. Their parents are aging out and can provide emotional support but very little in the way of physical energy or intellectual advocacy. The siblings of people who are disabled-and-returning are busy building their careers and raising their children. The friends of disabled people drop them when they start to use wheelchairs.

People with disabilities are severely limited in creating change for themselves because they have little time or energy to devote to advocacy, fund raising and legislation. Their time and energy is devoted to the challenges of getting a shower in the morning, getting dressed and having breakfast.

Disabled and failing. The third group consists of people who are neither stable nor getting better. A lot of these people have autoimmune diseases, such as rheumatoid arthritis, muscular dystrophy or multiple sclerosis. They are looking at years—often decades—of slow disintegration.

More often than autoimmune diseases, a lot of the people who are failing have mixed disabilities. People are rarely disabled by a single thing. The physical, intellectual and emotional being is integrated and holistic. When one part of a person is disturbed, it has a ripple effect that causes disturbance in other areas. People in wheelchairs are rarely suffering from one thing. Muscle or skeleton problems lead to weight gain that leads to respiratory problems that roll over into cardiac problems. Having no feet can lead to bed sores that lead to systemic infections that result in death.

Many people who are multiply disabled are abandoned by their families. It is easy to turn the disabled ones over to government agencies and be done with them. It is hard to be faithful and steadfast in the care and support of someone whose physical wreckage slowly turns into mental and emotional ruin. In the last hundred years, American personal practice has moved steadily forward in the abandonment of people who are disabled. As the government does more, the family does less; guilt is assuaged by the belief that the government will provide adequate care. (News flash: it doesn’t.)

Public policies are fully supportive of people getting worse, and public monies are spent with righteous abandon. There is an easy transfer process from independent living to assisted living to skilled nursing to hospitalization to hospice care. There is no comparable reverse process for getting out of skilled nursing and into assisted living, or out of assisted living and into independent living.

For disabled people, there are day care centers and truckloads of supportive equipment to be gotten. Medicare and Medicaid will pay for you to go to a different doctor every day of the week. (Private insurance with a co-pay makes this unaffordable for the able person.) Denied access to restaurants, churches and movie theaters, going to the doctor’s can become the social life of the disabled person.

Choice. Disabled people from all three groups can choose to be dependent and victims. They can choose to sit in their wheelchairs and say, “I can’t.” I can’t work; I can’t help others; I can’t be nice.

Alternatively, they can choose a life of responsibility, discipline and maturity. Disabled people can work with physical and psychological therapists, nutritionists, equipment suppliers and healers. If you choose to recover from devastating illness, you will have to fight the entire medical industry, which is backed by society and public policy.

America is less a proponent of health and recovery and more an advocate of sickness and death. To use a spiritual metaphor, the crucifixion has more reality than the resurrection. A third of all Medicare money is spent in the last thirty days of a person’s life. It is spent to prevent death, not to create health.

Most disabled people have the capacity to be productive; many do not choose to be. There is adaptive equipment that enables the blind to have access to the written word, the deaf to get spoken messages, and the mobility impaired to travel with people who walk. The American’s with Disabilities Act requires transportation and access to employment for people with disabilities.

Almost every disabled person can be part of the community and do something to contribute to the good of others. People who are not even capable of supported employment are still capable of doing volunteer work. Even a person who can’t get out of bed can still volunteer on a support line or knit blankets.

It is a matter of mind. Do you choose to be aware of others and their needs? Do you choose to care for others? Do you choose to accept responsibility for yourself? Do you choose to be a part of the community?

More properly said, the three groups that people with disabilities fall into are (a) those who do, (b) those who can’t do, and (c) those who won’t do. Public policy and personal practice should be guided by the choices of people with disabilities, not by their disabilities.