CEO

Is this as good as it gets?

By Al Condeluci, Ph.D., CEO
The Voice, Summer 2000

The economy is humming, people are working and many people who have been in institutions are now out. More and more, folks with disabilities are out and about in the community.

We even see advertising and popular culture identify and include people with disabilities in the fold.

So on the surface things seem pretty good. In fact, someone recently suggested to me that maybe what we have is about as good as it gets when it comes to social advances and more particularly to disability issues. This same implication seems to be evident even in the arena of racial politics. We now hear all the time that affirmative action programs are not as necessary today because we have seemingly addressed discrimination issues. So the question is, regardless of the issue of race relations or disabilities relations, is what we have today as good as it gets?

As I think about this question I am amazed at the relevance it poses. Yes, we have made real advances in disability politics. There seems to be some heightened sensitivity, but when held against the basic “as good as it gets” questions, it seems we have barely touched the surface.

This conclusion came home to me in a face-slapping way when I had a recent opportunity to hear Dr. Wolf Wolfensberger speak at a symposium held in Pittsburgh. Some of you might remember that Dr. Wolfensberger was a key player (some argue a primary player) in the deinstitutionalization movement in the late 60’s early 70’s for people with mental retardation. In his writings and practice, Dr. Wolfensberger exposed our cultural bias against people with retardation and led the charge for reform.

I am highly sensitive to all of this because I was an early disciple of Wolfensberger’s work. In 1973, using his concepts outlined in his book “Normalization”, I advocated actively for change and reform in the Pittsburgh community. I attended every lecture and read every book I could by Wolfensberger. We adopted the principles of Normalization and then, later, Social Role Valorization in our work.

Now, three decades later, I returned to hear Wolfensberger. It was a sobering experience for many reasons. Like most advocates, we became service providers when our ideas became accepted and over these many years our services have become institutionalized. In some ways, the forest has obscured a view of the trees.

Wolfensberger broke the day into three tracks. First, we looked at the “bad old days”, a historical reminder of the past. Next, he explored and acknowledged some of the reforms that have become the focus of our current service structure. And then we looked at the present. This is where I woke up.

In his implosive style, Wolfensberger identified the following issues that were penetrating to me. Look at each of these things and honestly consider what your thoughts are on them:

1. Negative attitudes still prevail about disability. Folks are developing living wills so not to be a burden to families if they become disabled.
2. Negative imaging persists.
3. Professional qualifications are being lessened in service to people with disabilities. This is personified with extremely low salaries.
4. Dumping and abandonment continues. Many homeless folks have mental illnesses that are ignored.
5. Institutions still prevail, but in smaller forms. They are still governmentally funded and abound with rules and regulations.
6. Expectations for people with disabilities are low.
7. Little opportunity for early focused educational programs
8. Valued social connections are minimal for many people with disabilities
9. New mega-trends are developing around the world. The most prominent is “modernism” which is about individual over community, material possessions as an indication of success and sensual aspects in arts, literature and popular culture.
10. Shrinkage of resources. With managed care (a code word for averaging and cost containment) we are settling for less and less.
11. Insanity seems acceptable. Even the bizarre does not seem to faze us much.
12. Human service systems are collapsing. Rules are contradictory. Paper work prevails and seemingly simple answers are impossible to find.
13. People with disabilities face grave obstacles. Far too many lead idle lives in deplorable conditions and are lonely, and loneliness has given way to bad company. Jails and prisons are now filled with people with some type of disability.
14. Dr. Singer and Dr. Kevorkian have ushered in a new era of eugenics where the life expectancy for people with disabilities is still an extreme challenge.
15. We now see a backlash that is promoting institutionalization as a viable alternative
16. Families still experience serious problems.

Is this as good as it gets?
If not, what do you plan to do about it?

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