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Susanne Pohl-Zucker (Germany) and Jagdish (Jags) Chander (India) offer reflections on their work from their respective countries. What makes someone take up research on a subject that constantly needs to be justified and explained? How do they use and stretch existing institutional frameworks to accept not just scholarship but a paradigm that is new and sometimes threatening? And how do they blend scholarship and activism? Together they suggest our international scope and the vastly divergent roads that lead to doing this work.
Disability History as Empowerment: Strategies for Parents with Children with Learning Difficulties?
Susanne Pohl-Zucker, University Of Tübingen, Germany
susanne.pohl-zucker@uni-tuebingen.de
I am based in Germany, currently preparing a research project on historical constructions of Downs Syndrome, and am a recent DHA member. I am a great fan of the newsletter always, but last fall’s focus on teaching was especially helpful for me, because I was teaching my course “Introduction to Disability Studies/Disability History” for the first time as a lecturer at the university of Tübingen. I am quite grateful to Cathy Kudlick, Phillip Ferguson and Penny Richards for making their syllabi available on the DHA website. I “borrowed” some of their readings to complement the German material. The students had a great time with the English articles, despite dire warnings from other faculty members about the impossibility of getting them to read in a different language. It was not only the great choice of readings which I found helpful. The comments about teaching the material that accompanied the syllabi in conjunction with the notes on teaching disability history by Phil Ferguson and Kim Nielson provided much food for thought as well.[1] In this short piece, I want to add to these discussions a few observations from my own teaching experience last term.
Both Philip Ferguson and Kim Nielson wrote about memorable “moments” in the class room when history and personal experience merged in ways meaningful to class discussion. The common theme was how disability history can be successfully introduced to students as what one might call ‘applied history,’ as research that enables different perspectives on life outside the class room – without harping too much on the “lessons of history” as Phillip Ferguson put it.[2] Throughout the term, I kept devising strategies to make this happen, some were more successful, some less so. Once it happened quite naturally: one of the things we discussed during the class which had a focus on historical constructions of intellectual disability from the nineteenth century to the present, was the use of intelligence testing in the early twentieth century as an instrument of social control. The unit ended with a German book on the tests used in the 1970s and 1980s, and students were appalled to discover that a lot of the tests from the beginning of the century, with their degrading language for ranking people with learning difficulties, were still in use at that time. Their amazement and their questions led on the spot to an interesting discussion about the very real barrier testing continues to represent today to German parents’ wishes for inclusive schooling for their children with learning difficulties. Knowledge of the historical contexts of these tests and the uses they had been put to, offered a critical perspective on the numbers and figures that many contemporary professionals still work with. Here, in Phillip Ferguson’s words, disability history allowed students to reconsider “what had previously seemed objective.”[3]
While I was delighted to see how the students became more and more expert at deconstructing naturalized definitions of disability, this incident made me reflect on my own experience as a mother of a child with learning difficulties in particular and the meaning disability history has for me and might have for other parents in general. I thought for example about the times when I struggle to maintain coherence between different roles – particularly those of activist and mother. Ruptures might occur when a specific challenge leaves me more vulnerable and less ready to fight back than the activist part in me would like. Without turning this piece into “Susanne’s story,” I want to mention just one example. During a Kindergarten meeting two months ago, I lacked confidence in interactions with parents of typically developed children who are the gatekeepers to a friendship between their children and mine. I acted confused and almost apologetic over those aspects of my child’s behaviour which I usually just consider “differently normal” and expressive of his authentic self. In this instant, it was more difficult to be indifferent to the reactions of my surroundings. However, I realized quickly that such confused responses on my part do but confirm negative judgments about “mental retardation,” judgements that are reified for example by the very intelligence tests we had discussed in class. From my regular engagement with parent support groups, I know that such inadequate responses are often enough a part of daily life. They may happen when the fear which makes you most vulnerable - that your child may experience rejection – endangers a self-confident stance against the pressures of the medical model and existing prejudices. Disability History helps me navigate such pit falls and bring my actions as “mother" and “activist” into coherence, because I can understand these actions and those of the people around me in a historical context of marginalization of people with learning difficulties.
I also find that historical research has positive effects on efforts to resist those bureaucratic decisions which narrow the possibilities of children with learning difficulties. Lately, the support group I am a part of was asked to write an appeal against a decision of the local social services. A significant part of a child’s early intervention program had been curtailed. The reason given was that the child was already six years old, and that it was not to be expected that she would make further significant progress because of the severe “mental retardation” caused by Downs-Syndrome. Our anger about this kind of genetic determinism and a priori denial of an open-ended future, a denial which interprets children’s every move as “a reflection of syndrome,” as Dan Goodley so aptly puts it, was fueled by bits of historical knowledge.[4] I had recently read an article by C.F. Goodey on the origin of definitions of intellectual disability in John Locke’s writing, an article which I like especially because it is written to familiarize professionals with the historical contingency of such definitions.[5] While we resisted quoting John Locke against the government official, we stressed this contingency as a background to our insistence on a social model of disability which leaves no room for narrow definitions of a child’s potential. It may not have been the brief historical allusion that won the appeal, but our discussion of history helped us focus and sharpen our arguments – in sum strengthened our self-assurance.
Such self-assurance is important when interacting with professionals. Let me stay with the example of intelligence testing. These tests are a standard part of the application procedure when parents wish inclusive schooling for their children with learning difficulties. Often, parents become more hesitant about this wish when the tests result in a recommendation to send the child to a special school. It could be liberating for parents to know more about the historical contingency of these intelligence tests. Perhaps such knowledge would make it less difficult for some to muster the courage to abandon a traditional automatism which associates certain scores with certain schools and certain pedagogical strategies. The race to enforce a perceived “normalcy,” which often leads to anxious comparisons and strained relationships between parents and children, could be left behind. Awareness of the historical strategies of marginalization of people with learning difficulties might help parents a) to avoid the traps of the medical model and b) take some pressure off themselves and off their children in order to experience more freely that spontaneous, unjudging delight in a different self.
When the class discussion about the history of intelligence tests triggered these kinds of thoughts in me, I thought – why not inject a dose of history into parent training workshops? And to take this further, why not involve the students? Next time, I am teaching the class, I hope to invite local representatives of activist groups. Perhaps these sessions could conclude with a workshop. Students and activists could develop suggestions on how to go about communicating parts of history that could be used strategically in interactions with professionals and bureaucrats. All this could be taken further even. Our group is currently putting together a presentation on inclusion for high school students. We could include a section on Disability History…There are many different possibilities. It is of course naïve to think that bits of historical knowledge alone can smooth the stony road towards inclusion for children with learning difficulties. Lots of parents might consider history exotic, too academic, or simply too far removed from their current struggles. However, it would be worth a try to see if it might not be empowering to some. At the very least, I found that teaching disability history not only teaches students something, it also made me consider and process my own actions and reactions in ways meaningful to my efforts to empower my son.
- “Teaching Disability History in the Contemporary United States.” The Disability History Association Newsletter, Fall 2007, Volume 3, Issue 2. p.7-22.
- Phillip Ferguson, “A Selective Historical Glimpse at How American Society Has Tried to Educate, Rehabilitate, or otherwise Intervene in the Lives of Disabled Children and Adults, and Their Families, and How Some of Them Have Always Resisted.” Ibid, p. 20.
- Ibid.
- Dan Goodley, „Learning Difficulties, the Social Model of Disability and Impairment: challenging epistemologies.“ Disability and Society, Vol. 16, No. 2, 2001, pp. 224.
- C.F. Goodey, What is Developmental Disability? The Origin and Nature of Our Conceptual Models.” Journal on Developmental Disabilities, Volume 8, No.2, p. 1-8.
© The Disability History Association, 2008