Human Exceptionalism

Wolf Wolfensberger, Protector of Equal Moral Worth of People with Disabilities, has Died

Dr. Wolf Wolfensberger, who created the “social role valorization” (SRV) concept, has died.  From a death announcement published in the NDIS Good for People With Disablities blog:

Dr Wolfensberger had a strong commitment to people made vulnerable in a society where individualism, utilitarianism and hedonism reign. He made a huge contribution to people with disabilities…In 1999, seven major developmental disability organizations in the US proclaimed Dr Wolfensberger one of the 35 parties that had been the most impactful on “mental retardation” worldwide in the 20th century. Dr Wolfensberger’s work was also recognised by the US magazine ‘Exceptional Parent’ as one of the great 7 contributions to the lives of people with disabilities, along with Salk and the polio vaccine, braille, Americans with Disabilities Act and the wheelchair.

Wolfensberger was best known for SRV:

He was perhaps best known for developing social role valorization theory from his, and Nirje’s, concepts of normalisation. Social role valorization has been taught to many using and running disability services, and applied to various degrees, in government policies and service practice.

I spoke for a Wolfensberger-sponsored symposium several years ago, where I found him engaging but, I must say, a bit prickly (or maybe, I was he prickly one).  We had a pretty loud–and heated–argument after my speech over a tactical disagreement about how to best protect the vulnerable, surrounded by wide-eyed attendees. But it wasn’t personal and we ended my time there fine pals in the knowledge that our goals of protecting the vulnerable were identical, if not necessarily, our means.

For the issues discussed here at Secondhand Smoke, I think Wolfensberger’s best legacy is the Social Role Valorization Implementation Project–for which I have made a couple of speaking swings in MA and CT.  SRVIP activists protect people with profound disabilities in the medical setting.  From one of my posts about the SRVIP:

The SRVIP, among other matters, trains people to serve as advocates for people with disabilities when they are hospitalized. In essence, they literally stay with “devalued” patients–primarily people with cognitive or developmental deficits–to ensure that they are treated properly–and not, for example, given medically unwarranted morphine drips. The stories I have been hearing from these valiant advocates would curl your hair, with some successes in saving lives, and some outrageous losses. I won’t repeat them here since they are hearsay, but I am sure you can imagine.

I have heard many such stories as I travel and in private communications. I still believe (hope) they are the exception, and without question must be prevented and punished. In any event, this idea of a creating a cadre of trained advocates and protectors for the devalued in the health care system is a very good one. I would love to see the concept spread throughout the country.

Wolf  Wolfensberger made more than a few waves in his long career, and stepped on even more toes.  But he also saved many lives and protected those least able to defend themselves.  That’s a pretty darned good resume to take on the journey to whatever comes next.


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