In a recent perspective in Mental Retardation, Ashbaugh (2002) cast a critical eye in the direction of self-determination efforts to redirect control over the funding of services and supports into the hands of consumers, families, and their chosen allies. Critical though that glance may be, this attention should be welcome in that it makes visible two long ignored elephants in our collective human service room: the “commodification” of people with disabilities and the roles we, both as citizens as well as professionals, play in their perennial segregation. However, Ashbaugh's commentary and conclusions do not engage us in moving forward any type of dialogue that may serve to help us get these and other elephants out of our collective living room. Rather, the drum beaten here seems to resonate more with old arguments that justify continued segregation based on the lack of our collective will to refuse to address the critical issues of why we have the systems we do and how we could organize ourselves better to voluntarily achieve what over 30 years of litigation and legislation have sought to put in force.
The initial premise upon which our current system is based was to serve or to segregate, depending on the version of history to which one subscribes. That this service element was ultimately subsumed by and continues to be controlled by segregationists remains the primary elephant that those who seek autonomy over their own lives and destinies far too frequently and politely sidestep. At the same time, they are confronted by the elephant of commodification. In the realm of long-lasting and professionally condoned segregation, our societal investment in supports and service systems seems to have become an entitlement for the provider, rather than a measurable benefit to the persons who continue to be thrust on the auction blocks of our funding mechanisms. Those who have promoted the notion and realities of self-determination seek to not only point out the presence of these elephants in our living room, but to provide us with a means to serve them with a notice of eviction and posthaste departure.
In our collective living room, the masses of persons who direct and provide supports to individuals with disabilities have been admonished frequently in the past to avoid garden paths and bandwagons alike. Yet, important as cautionary voices may sound, the warnings and incremental approaches for avoiding thorns and dodging the traffic in our industry of human service have resulted in the creation of a band-aid collection of what we euphemistically label “best practices.” These best practices are only available to the accidental tourist or most vociferous advocate and professionally proscribed as only beneficial for some. Further, these same cautionary voices that promote the status quo never articulate the real destructive and dehumanizing structural problems arising from the organization of services. Finally, and far worse, other voices that do rise up to question the continued sanity of developing, marketing, purchasing, and deploying antediluvian approaches to helping someone create an authentic life that he or she directs are quickly marginalized.
My rebuttal to Ashbaugh's (2002) arguments in the interest of maintaining status quo “options” in order to protect people with disabilities and families from real or imagined future fiscal fickleness, with its resultant relegation of self-determination as a place to which “dissatisfied customers” can be shuttled off, is unrepentantly liberal and idealistic. As Pollyanna as this rebuttal sounds, it is based on my day-to-day experience with real people who already are involved in the business of claiming and exerting control of the government funding of their services and supports. These people's stories have yet to be published or “oversold.” Without apology, I submit that the power of story-telling is most certainly, and by necessity, the true “economic engine” of the self-determination movement. Until now, stories are the only coin that people with disabilities and families have ever had in the realm of the richest service delivery system on our planet.
The current organization of delivering services and supports thrusts the government and us as taxpayers into the eternal role of Santa Claus or Scrooge. As Santa Claus, often despite our best intentions, what ends up under the tree is not necessarily what was on the individual's list. As Scrooge, we perpetuate miserly methods of charity-derived rationing whenever we are able to or disposed to dispensing any presents at all. Self-determination may, in fact, result in the necessity for shorter service request lists in order assure a more truly equitable distribution of resources. But, if the stories are to be believed, what is ending up on those lists is access to what the people themselves feel is most necessary to an authentic life rather than bundles of services that they do not need, want, or cannot or will not use.
The current organization of services and supports is, in and of itself, one of the primary ways with which individuals who have disabilities and their families are “taxed to the hilt.” Individuals and families spend incalculable and inordinate amounts of time, energy, and personal resources attempting to access and utilize the limited items that our current system has in its catalogue. In other areas of our capitalistic society (if one wishes to perpetuate the myth that people with disabilities are indeed consumers), the consumers would have long ago taken their business elsewhere. Self-determination affords consumers the means with which to do so and, if need be, go into business for themselves.
The current organization of services and supports robs us all of the responsibility and opportunity to share our true gifts and talents freely. Instead, it depersonalizes both the server and the served by requiring us to focus our individual strengths on constructing and regulating walls of pseudo-protection, with the end product being the further constriction of our own creativity and collective conscious. Self-determination thrusts all of us back into the role of reaching out to one another and reopens the dialogue of re-engaging our communities in the lives of its formerly most disenfranchised citizens.
Finally, the current organization of services and supports results in the segregation and oppression of us all. It exploits our deepest fears of differentness with its concomitant images of impending disaster and despair—and yet, we are the system. If we believe that those among us with disabilities, their families, and allies will always be subject to and overwhelmed by the capricious whims of misfortune and ill fate, then these very beliefs will forever hold our collective spirits captive. We will cease to envision and give life to those very things that are needed to move us all forward from being victims of our own past successes to champions of our futures. As of today, self-determination is only one possible solution in an entire set of yet to be conceived array of solutions that will open the gates and let some of our elephants amble aimlessly to other pastures. However, if we are successful at releasing one or two of them into the wild now, we will, hopefully, have room in our living room for other, less cumbersome guests to join us.
In closing, and as a very modest illustration, I offer a story. It is not a success story about a person “getting” self-determination. It is a story about us as the leaders and sometime followers in what is becoming a procession rather than a parade. I submit that we are not on a garden path; we are, as Myles Horton, founder of the Highlander Research and Education Center would say, making a new road by walking.
Tonight, at 6:45 p.m., as I struggled while writing five double spaced pages to contain my anger and frustration with the slow pace and poor acceptance of the work to liberate people, the phone rings. Background: the caller is a state bureaucrat/official/friend. I had asked him, together with another volunteer, to co-facilitate a PATH (person-centered plan) session (Solicited Act 1) for a 36-year-old friend of mine. After the PATH, I had asked him to give my friend a ride back to the nursing home (Solicited Act 2) that became her safety net a year ago when her traditional services and supports had unraveled.
“Why do you always do this to me?” demands the caller.
“Do what?” I disingenuously answer.
“You know what I'm talking about,” the caller admonishes.
(I paused long enough for effect and offered) “ask you to. . . ”
“Get involved!” my caller shouts into the phone. “You know. . . touch people.”
“You did a good job at the PATH!” I offer. (PATH facilitation has only recently debuted in Tennessee, and we are all still feeling quite “Newbie.”)
“Well, with her permission (my friend's), I talked to the nurse and read her record (Unsolicited Act 1). The medications you all weren't sure about looked OK, except for one, and, they are documenting the physical therapy she's supposed to get three times a week.”
“Thanks for checking,” I tell him.
“I also told the nurse that I'd be picking her up on Friday and you'd bring her home.” (Aside: one aspect of the PATH had resulted in him asking my friend if she'd be interested in going to upcoming state Brain Injury Conference (Unsolicited Act 2).
“Great!” I reply. “See you on Friday!”
“I also talked to Ms. G. (another state bureaucrat) this morning (Unsolicited Act 3). It shouldn't be too hard to get her back into the system once her microboard is ready,” he relates.
“Well, I need to get to the library. Let me know if there's anything else I can do.”
“I will,” I assure him.
“I know you will,” he responds, “somehow you always do!”
We are the System
I maintain that we are the system. So, stop giving out business cards and give everyone your home number. Ask a bureaucrat to lunch and sign him up as a volunteer. Tell your own stories of liberation to your friends and neighbors. Solicited acts of kindness lead to unsolicited acts. De-falsify hope. Do not let sleeping elephants lie.
Author: Ruthie Marie Beckwith, PhD, Executive Director, Tennessee Microboards Association, 1509 Van Cleve Lane, Murfreesboro, TN 37129. ( EMPFANATIC@aol.com)