These last six months have been very hard. First, I was in the hospital and endured two bloody debridements. Second, I was on enforced bed rest and dependent upon my family to care for me for months. These two major events say nothing of the tremendous expense wound care has involved. The biggest expense was the purchase of a clinitron bed and the extended rental of a KCI wound vacuum. Even with all this I consider myself very lucky. I had a family that sacrificed and cared for me in my own home. For this, I am eternally grateful. But what I am most relieved about is that I am home and have been since I was released from the hospital. Accordingly, I am lucky times two because I escaped a nursing home. Most paralyzed people are not so lucky. Nursing homes are a necessary evil. Most such institutions are a place people go to die. Death in my estimation takes place long before the heart stops beating. Death in institutions is caused by inertia or lackthereof. The routine, the needs of the institution are paramount. No action takes place, indeed inaction is desired. Routine is serene and secure. People that rock the boat, ignore the routine are trouble. The routine is mind numbing if not deadly. What is worse, far more troubling, is that the age of people entering nursing homes is dropping. Paralyzed people often end up in nursing homes. Look at the history of the disability rights movement--some of the biggest advances originated in the halls of nursing home pushed by young people. Young people locked away and unable to have a social life. This is how the battle for mass transportation, specifically buses in Denver, started and spread across the country int he late 1970s.
The above thoughts came to mind when I read an article in the Houston Chronicle about the number of people with disabilities now living in nursing homes. According to the article, people age 31-64 have entered nursing homes at a higher rate than those 65 or older. People under 65 now constitute 14% of the nursing home population. I find this figure stunning, shocking in fact. Why do people under 65 end up in a nursing home? Simple: money. Most people cannot afford home care services. Young people end up in nursing homes because of traumatic injuries while others are institutionalized because they have chronic conditions. Enduring life in a nursing home at a young age is for me unimaginable. I have surely struggled since I have been stuck in bed and isolated. However my struggles pale in comparison to a person my age that finds himself or herself in a nursing home. I find it hard to fathom why we do not rely more on home based care. It is a far more humane way to live. One can maintain a level of dignity the best institution in the world cannot provide. I think it is not in dispute that community based long term care is the ideal. However this ideal is not well funded, long waiting lists are common in most states and the nursing home industry yields great clout within political circles. We as a people should be outraged. We should demand appropriate home based care that is not only available but affordable. No such demand exists. Sure groups like ADAPT forcefully push for community based care but how many Americans even know ADAPT exists. Sadly, not many. Part of the problem is that people do not want to consider much less seriously think of life with a disability. Like it not though most of us who live long enough will have to cope with some sort of disabling condition. What is also not considered is the social isolation that is often associated with disability. Why are people with a disability isolated? American society both socially and practically is not designed to be inclusive. Stigma is still attached to disability in spite pf the fact the ADA was passed 20 years ago.
I will be the first person to admit the social plight of people with a disability is markedly better than it was 30 years ago when I was paralyzed. This is a far cry from saying I am considered equal to my fellow Americans that wake up in the morning and stand up. Wheelchair use and disability in general remains a quasi tragedy in the estimation of most people. See my last post about Mr. Lakeman int he NY Daily News to see how this message is delivered in a routine everyday fashion. It is not hard for me to conclude we can reduce the number of people, young and old alike, in nursing homes if we valued the elderly and people with disabilities. The fact is we do not value disabled lives or the lives of the elderly. If we did, adequate social supports would exist. Supports that would have made my fear of a nursing home a thing of the past.