Disabled and failing. The third group consists of disabled 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 a 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.