Wednesday, June 2, 2021

Against Science as Such: A Tribute to Direct Support Professionals

by Jefferson Hansen 

On this blog yesterday was a poem by Cece, my nonspeaking autistic adult daughter. Tomorrow will be paintings by her. Today, I am posting an essay by me that is a tribute to those who have helped her so much—group home workers, also known as Direct Support Professionals. In writing this, I honor not only others, but myself as well. I worked both part-time and full-time in a series of group homes between 2012 and 2017. I was a Direct Support Professional. I emptied colostomy bags. I brushed teeth. I shaved men before they went off to work at their disabilities employment center. I cooked. In caring for people, you gain knowledge. This knowledge is not as valorized as science, but it is much more important. Science "nails down" and "gets a grip on." Notice how it tightens, reduces, forces, dominates. Caring knowledge allows beings and things to breathe, fosters them, allows them to grow. It doesn't clamp down. It's fluid.


Cece has been blessed with an extraordinary DSP for a couple decades now. I have frequently told this African immigrant how wonderful she is and how much she has meant for our family. She responds shyly by just saying she is doing her job. Yet she does her job better than anyone I know.


For instance, science tells us, officially, that my daughter is cognitively delayed, a euphemism for mentally retarded. The man making this determination, and it is usually a man, generally observes Cece for about 20 minutes and then gives her an assessment test—all in a sterile office environment. His determination is official and carries legal weight. At meetings at the house, the nurse represents this medical and scientific knowledge. Cece's DSP—calmly, politely, effortlessly—reports that Cece is "really smart." This takes extraordinary nerve. After all, to conventional society, this group home worker is just an immigrant; she is just a DSP. Where does she get this effortless nerve? I believe the answer to this question will reveal a way of knowing that is one of many possible alternatives to science and its concepts—which pin down, nail down, and grasp.


To be clear, I don't believe she would ever make such an analysis. In my experience with her, she focuses on other, equally important things. However, I am a trained thinker, with a Ph.D. minor in philosophy. And I have honed this training over years of reading, experience, and writing. My access to what gives her the nerve will be through introspection, through thinking about myself, because, strangely enough, in spite of our vast differences—racial, immigrant-status, cultural, gender—we are a lot a like . We both worked as DSPs. We both have a lot of nerve. We are both marginalized. In this context, I will refer to my marginalization as neurodivergence. In other contexts, under an assumed name, I am more revealing in my writing. I do this to protect my possible future employment prospects. It is practical and strategic.


By conventional standards, I am such a failure it's horrifying to some people, and absurd to others. I am a doctor, a Ph.D. Yet I worked for 11 and 12 dollars an hour in group homes. I did try for other more lucrative jobs and did work a well-paying second job as a part-time professor and then a tutor for a while. But nobody wants to hire an aging intellectual. They wonder what's wrong with me that I'm not teaching. I am, I think, closed out of teaching jobs because, with my degree and years of experience, I am too expensive.


So I am clearly an utter failure. My current job in the mental health field requires only a high school education. Essentially, it is working class. Yet, I am confident as can be. I am as nervy as Cece's DSP. Where does my nerve come from? I suspect it comes from a roughly similar place as does Cece's DSP's nerve. 


We begin with the metaphor of roots.


We all have roots that extend way down and out—far, far into multiple cultures and the ecosystem. We all draw on these great roots. However, the experience of being marginalized often necessitates the awareness of and development of these roots. Why? They are not conceptually known. They are sensed, viscerally and intuitively and intimately. They cannot be directly spoken about. They can only be approached and indicated metaphorically, as I am now doing in this writing, in referring to the metaphor of "roots."


These roots are outside conventional, normative concepts. They are outside the grasping and domineering of science. They connect me to strange undersides of culture—improvisational, in process, forever incomplete, forever on the move, essentially fluid. They connect me to the ecosystem, to the grass and trees, yes, but more importantly to the processes that move in and through these places. Those processes move through me, too. Sometimes I can feel as a blade of grass. Sometimes I can feel how much I utterly depend on the sun, a slight breeze, and a green pepper (as symbol of all food). I couldn't live without any of them.


The visceral and intuitive sense of my connection to everything through these roots gives me my nerve, gives me my confidence. It makes me question science. When we first started Facilitated Communication with Cece, kind and well-meaning friends warned us against it because it was "discredited" by science. These friends were all conventionally successful. They all were rewarded in their lives by thinking and behaving according to normative concepts.


To me, their faith in science looked like blindness—the blindness of success. I was badly hurt by normative concepts because of the stigma that unnecessarily attends my neurodivergence. Of course I look elsewhere for intellectual and psychological sustenance! Science calls me disabled and Cece developmentally delayed. My visceral and intuitive senses are more fully developed as a result of a profound shock that threw me out of fully believing in conventional conceptual categories.


What might this shock have been for Cece's DSP? In the decades before her birth, her home country was brutally colonized by a European country, partially in the name of science. The effects linger. Also, she's Black. She's an immigrant. Of course she's going to learn to rely on nonnormative ways of thinking and knowing to feel her worth, to give her nerve, to assert my daughter's full worth right into the stiff wind of science. And she does it so naturally, so effortlessly.


I believe she has a dep sense of rootedness because of the way she combs my daughter's hair without hurting her. I also see it when she rubs lotion on my daughter's hands when she is upset. Her knowledge of my daughter is deep—intimate, bodily, interactive. I not only observe this sort of knowledge, I have enacted it. Remember, I am not only a Ph.D., I have been a DSP. I, too, have developed techniques for calming the profoundly "disabled," although I can't put lotion on them because I am a man, and men aren't allowed to touch as much as women are. One such technique involved my voice. I learned, over time, to purr, like a kitten. It worked wonders with some people. The ways of knowing developed by DSPs are profound and far-reaching and applicable broadly to life in general.

The scientist's knowledge is shallow, and concepts by their nature are shallow. They cannot get down into the roots because they clutch and grab and stymie. The scientist spent 20 minutes with my daughter in a clinic. Whose knowledge contributes more to human culture, the DSP's or the scientist's? The answer is clear: the one making diddley-squat, whose insight is never officially recorded, whose deep knowledge only floats on the air as sound at a meeting, and is determined to not be worth writing down, and does not become part of the official record of the meeting.


Science says FC is bunk.


Science says my daughter has mental retardation.


Science's declarations come clanking down with the force of conceptual domination and legal authority.


We DSPs foster, care, and allow to breathe, allow to grow. We get out of the way. We do not press down.


Of course, I am not absolutely against scientific knowledge. I avidly read popular books and magazines on natural science. My problem with it concerns its all-pervasive authority which shuts down other forms of knowledge, some of which are much more valuable and useful in most contexts. Indeed, I wish DSP knowledge, formed by the marginalized status of DSPs and honed by their practice of care, should be accorded more value and importance than science.


Cece's DSP is a deep person, very deep. I suspect it comes from her well-honed visceral and intuitive sense of her place among all beings and things. I hope I haven't embarrassed her too much, but I probably did. And, yes, I will give her a copy of this essay.


As for other people, I have known many other deep people in my life. Rarely have they held a Ph.D. One such deep person I have known is a White woman. She has a name. 


It is Cece.


"The meek shall inherit the earth."




I am not even Christian in belief, though I am in culture, but this Biblical line always speaks to me because it celebrates people like Cece and her DSP and, well, me. I don't like the notion of "inherit." If we meek did come into power, there would be no property to inherit. Property is clearly a destructive and violent idea. And there would be no head of the table because there would be no hierarchies. That's destructive, too. We meek are too practical to tolerate destruction because we have usually been the ones who pick up the pieces after the destroying is over. 


Will we meek win out? Probably not. But our ecosystem may depend on it. Without various forms of rooted knowledges, science will hold sway, and its white-knuckled conceptualization will continue to reduce minerals to mere resources, beings to products, and so on. I believe this domineering conceptualization is one of the primary factors behind the current environmental crisis. We DSP's think so differently. Listen to us. Watch what we do.


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