(Ostmeyer, K., & Scarpa, A. (2012). Examining school-based social skills program needs and barriers for students with high-functioning autism spectrum disorders using participatory action research. Psychology in the Schools, 49(10),p.932-941.doi: 10.1002/pits.21646
Ever since learning about participatory action research (PAR), and particularly the work of the Council of Youth Research at UCLA (check out their work here), I’ve been obsessed with the idea. The term itself–participatory action research–doesn’t sound quite as exciting, as novel, as potentially revolutionary, as it is. For the uninitiated, the goal of PAR is to “develop interventions with the direct input of stakeholders” (Ostmeyer and Scarpa, 2012, p. 932). Although PAR-based studies often are designed according to traditional Western evidence-based, if-it-can’t-be-measured-it-doesn’t-exist values, the goals of PAR can intersect with the goals of indigenous research methodologies, in that the PAR studies “take into account the ideas and perceptions of the population directly affected by the problem” (Ostmeyer and Scarpa, 2012, p. 932), just as advocates for indigenous research methods embrace a form of research where “what is acceptable and not acceptable research is determined and defined from within the community” (Denzin and Lincoln, 2008, p. 6) and “they [indigenous people], not Western scholars, have first access to research findings and control over distribution of knowledge” (Denzin and Lincoln, 2008, p. 6). The Council of Youth Research, for example, empowers “youth of color attending city high schools [to] become lead agents in the process of research” (Bautista, Bertrand, Morrell, Scorza, & Matthews, 2013, p. 2). In this model, the people with the most at stake in these critical questions are actively involved in the process of research–and they are the immediate beneficiaries of its findings.
Man. This is exciting stuff. The thrill of it can’t be stated more succinctly than it was by Dr. Melanie Bertrand, who worked with the Council of Youth Research at UCLA and has written and published about its work, upon her visit to our class last night: “The most amazing thing about [it] is that the students who are most marginalized … have the most wisdom to share” (M. Bertrand, personal communication, June 5, 2014).
If I could include sound effects in this blog, right about now I’d embed that old record-scratch sound effect. Wait. Stop. This is exciting stuff, but think about the world I live and work in. The students I teach at my exclusive, prestigious, expensive suburban private school are not the underserved, marginalized urban youth involved with the Council of Youth Research. What place could PAR or, thinking more broadly, indigenous research methodologies have in my world? But then I come back to Dr. Bertrand’s comment: “the students who are most marginalized have the most wisdom to share.” “Most” is relative. No community is without its center and its fringe, its powerful and its less-so.
Although not an indigenous people by the textbook geographic, ethnic, or historical definition, disabled people have been turned “into an essentialized ‘other’ who is spoken for” (Bautista et al., 2012, p. 5). Therefore, indigenous research methodologies may be a viable way to locate disabled people themselves “at the location where research is conducted and discussions are held [to] serve as a major link between fully understanding the historical vestiges of discrimination and the present day manifestation of that discrimination” (Parker cited in Dunbar, 2008, p. 98). It was not so long ago, after all, that Josef Mengele performed his sadistic “experiments” on people with dwarfism (just one example of a heartbreaking many) or, right here in the United States, “researchers injected cancer cells into 19 old and debilitated patients” (Stobbe, 2011) at a New York Hospital, without the informed consent of the patients themselves, to see if their bodies would reject them . And if anyone wants to argue that that, in addition to being a post-racial America, we’ve moved past discriminating against people with chronic illness or disability, I’ll point out that “less than one-half of individuals aged 21 to 64 with a disability” (Brault, 2012, p. 10) are employed, and those who are working earn less than those without disabilities (Brault, 2012, p. 12). As many people have pointed out before, the depictions of disabled and chronically ill people in the media continue to come from a narrow menu of reductive options: the scary, disfigured villain; the noble, sexless saint; the angry, vengeful victim. But that’s a blog post for another day. What about participatory action research, this private school of mine, and students with disabilities?
Cue the record scratch again: There isn’t a huge population of (physically) disabled students at my school. That’s always struck me as weird. After all, according to the U.S. Census Bureau, 8.4 percent of Americans under the age of 15 have a disability, and 10.2 percent of Americans between the ages of 15 and 24 do (Brault, 2012, p. 5). And yet, a casual conversation with a couple of colleagues who have worked at my school for about 75 years between the two of them yielded only a handful of names of kids with disabilities. As far as I know, in the six years I’ve worked at my school of 700-ish students, there has never been a student who used a wheelchair or other assistive mobility device. There have been, and are, a few students with hearing impairments, vision impairments, and chronic illness (asthma, juvenile arthritis, seizure disorders) but not at all in proportion with the census data. That, too, is a blog post for another day: Is this disparity particular to our school or is it perhaps seen in other independent schools? And why?
What we do have is a big–and, I would say, growing–population of students with attention deficit disorder, attention deficit hyperactivity disorder, autism spectrum disorders, dyslexia, learning disabilities, or other disabilities associated with executive functioning. I’m going on observation, not school data, here but I would guess that In this regard, our school is at least representative of the census data, which, as of 2010 reported that “2.3 million children had difficulty doing regular schoolwork (6.2 percent)” and that “about 692,000 had a learning disability, 1.9 million had Attention Deficit Hyperactivity Disorder (ADHD), and 1.7 million had an intellectual or developmental disability or condition” (Brault, 2012, p.13). These students struggle in school. I might even argue that their struggle is made all the more difficult by the competitive, high-pressure, college-focused, and achievement-driven culture of a school like ours.
There’s Dr. Bertrand again: “The students who are most marginalized have the most wisdom to share.”
Our school is in the midst of a great deal of change. Three years ago, we moved to a block schedule. This year, we’re rolling out the use of Canvas, a learning management system that will digitalize teacher-student communication, assignment submission, collaboration, and assessment and grading. Next year, we will shift all instructional materials and texts to electronic tablets. We are in the midst of a comprehensive curriculum review and redesign, including exploring a new capstone project/experience for our graduating seniors. I have served or currently serve on the committees at the center of these activities, and I can say without reservation that we have been thorough, sincere, and utterly student-focused in these efforts. My colleagues have asked, at every turn, “How will this benefit the students? What do they need?” even when the proposed changes threatened discomfiting change for the teachers themselves. I am proud of my school, my colleagues and myself. And yet: Perhaps are we missing an opportunity to involve the students themselves? Sure, student representatives have visited those committee meetings; the administration is dutiful and sincere in connecting students and soliciting their input. A student served alongside me, the headmaster, parent representatives, and members of the board of trustees on the recently completed strategic plan committee. We ask the students questions, and we listen to their responses. But we haven’t (yet) created a space where the students themselves design the questions, protocols, and experiences of research for themselves, targeting what’s most meaningful to them. And we certainly haven’t specifically sought the students with intellectual and learning disabilities–arguably among the most marginalized students in our school–to share their wisdom. Maybe we should.
So that’s my 1,300-word preamble to the article I cited at the top of this entry. I am so electrified by PAR that I decided to explore the ways that PAR projects have been used with students with disabilities. This article reflects only one such project. In this study, the authors used PAR to examine the degree to which an elementary school was succeeding in imparting social skills to its students with high-functioning autism spectrum disorder (HFASD). The study is predicated on the idea that “one of the central roles of schools is to prepare students for life in the work force or postsecondary education and help produce competent adults” but that “many skills beyond academics are needed to succeed in college and/or the work force, including adaptive social skills” (Ostmeyer and Scarpa, 2012, p. 933). These social skills include “listening to others, following steps, following rules, ignoring distractions, taking turns, asking for help, getting along with others, staying calm, taking responsibility for one’s own behavior, and doing nice things for others” (Ostmeyer and Scarpa, 2012, p. 932). These are crucial skills for making one’s way in the world, and they are central to my own pedagogy. However, children with high-functioning autism spectrum disorder struggle with these very skills, and with disastrous results: “Although children with HFASD score in the average or above-average range on intelligence measures, 70% to 90% of these children underperform academically in at least one domain, including math, reading, and spelling” (Ostmeyer and Scarpa, 2012, p. 933), suggesting that “social skills play an important role in … academic performance and that social enhancement may positively impact academic skills” (Ostmeyer and Scarpa, 2012, p. 933). The stakes are higher than that for these students: deficits in social skills can lead to low self-esteem, depression, and anxiety (Ostmeyer and Scarpa, 2012, p. 933). Children who haven’t developed these skills “are also more likely to be rejected, teased, and bullied by peers” (Ostmeyer and Scarpa, 2012, p. 933). Which, as anyone can tell you, leads to anxiety and depression, which don’t incline a kid to get out there and get cracking on buffing up those social skills. It’s a particularly vicious cycle.
The authors engaged a process of PAR to “gather information on the need for social skills interventions in schools, potential benefits, and barriers to school-based implementation.” True to the values of PAR, the researchers involved stakeholders–in this case, not students themselves but 14 school staff members (“the school principal, a school psychologist, general and special education teachers, special education aides, and teachers of ‘specials’ (i.e., art, library)”) (Ostmeyer and Scarpa, 2012, p. 935) and two mothers of children with HFASD at an elementary school. I’ll be brief in summarizing the research design, results, and discussion here, because I want to get to the real takeaway, which is the potential for this study as a template for a PAR study at my school.
- Participants attended either a focus group or an individual meeting, each lasting 60-90 minutes.
- At the meetings, researchers defined social skills, emphasized their importance, and shared current research about social skills.
- Participants completed a questionnaire and then participated in guided discussion about how social skills programming could be implemented in their community.
- Classroom observations were conducted of two male students.
- Qualitative and quantitative results were compiled and presented to the school stakeholders.
- A tentative plan for the implementation of a social-skills program was designed.
Results from the Interviews:
- Participants agreed that social skills were important.
- School staff participants were wary of programs or interventions that removed students from the classroom.
- Staff participants were worried about taking time away from core academic subjects.
- Staff participants were worried about the time needed to train staff.
- Staff participants urged a model that was inclusive; that is, it didn’t target the students with HFASD but included the whole class.
- Parent participants indicated that their students might need individualized social-skills instruction.
- Parent participants worried that teachers would be uncooperative with a new program because of the time crunch for training or other classroom responsibilities.
Results from the Observations
- The observed students demonstrated deficiencies in most of the skills listed as important social skills in an earlier part of this discussion (following directions, etc.).
- Peers of students with HFASD were observed to be patient, understanding, friendly and inclusive but may have inadvertently reinforced some of the disruptive behaviors of the students being observed.
- Stakeholders agreed that social-skills training was both wanted and needed in the community.
- Stakeholders agreed that lack of social skills negatively affected academic performance.
- Stakeholders believed that educating peers about how to treat their peers with HFASD and educating them about the HFASD characteristics would help the social interaction.
- Stakeholders worried about time away from core academic instruction.
Although this article gave me some very practical insight about how to design a mixed-methods PAR study (How many participants, how many meetings, of what kind? What methods, what instruments?), I’m left with so many questions at the end: the article does not discuss the specifics of the program tentatively designed by the research participants and presented to school decision-makers, nor does it discuss to what extent the program was implemented. As for the observational element of the study, the article uses a mysterious passive voice (“observations of two male students with HFASD were conducted” [emphasis mine]) (Ostmeyer and Scarpa, 2012, p. 936), suggesting that that component of the research wasn’t so participatory after all, but rather conducted by the “official” researchers. Finally, and most importantly, I’m wondering if a study like this, which includes as participants not the marginalized people themselves but people one step removed from the marginalized people, is really true to the purpose of PAR as I understand it.
To me (a newbie to the subject, I grant), this seems like PAR-lite. This study doesn’t locate the power of research with the people on the low(est) end of the power differential; it didn’t yield any actionable, concrete, findings that could be or were implemented to immediately and in real ways benefit the children with HFASD; and because it doesn’t fulfill the goal/promise of PAR, which is to empower the very people who have been disempowered. Students with HFASD, like students in urban schools, can be “dehumanized, denied agency, and not allowed to speak on schooling conditions from their perspective,” students with HFASD. To address this marginalization with underserved urban youth, the Council of Youth Research “works to empower students to become agents of change” (Bautista, Bertrand, Morrell, Scorza, & Matthews, 2013, p. 4). The people who stand most to benefit from the research into social-skills programming for children with HFASD are children with HFASD, and here they are being spoken for here by the adults in their lives. This, of course, brings me right back to Aurora Levins-Morales’s Medicine Stories (1998), in which she argues that “the disempowerment we all experienced as children has little outlet. We are taught to obey until our own turn comes, with few opportunities to politicize the experience and critique it” (p. 51). Of course, the parents and staff who participated in this research love the children and want to support and serve them, but they are not, ultimately, the true stakeholders at the center of this line of inquiry. Aurora Levins-Morales’s (1998) again: “The fact that many parents are deeply loving, fair and committed to their children’s well-being does not change the fact that this is largely a matter of luck for the child, that she or he has almost no control over the conditions of daily life” (p. 52). I would imagine that control is further diminished when you’re a kid with HFASD who struggles with social skills.
But PAR is–or has the potential to be–precisely that opportunity for children to politicize and critique their experiences as students! To me, this study is PAR by proxy. I think true PAR depends on that essential tension between the power a person or group has historically held and the power presented by the very act of PAR. It has to challenge, if not invert, the power differential. If you’re doing PAR with people close to the people who stand to benefit most, people related to the people who have been the most silenced, I’m not sure it works. Yes, teachers and parents are to some extent powerless; they can’t make sweeping curricular change on their own without OK from the top–and there are many layers of top on top: the school administration, the school district, the board of education, the state government, the federal government. But I assume that teachers and parents have some voice and some kind of venue–PTAs or staff/faculty interactions–that the children at the heart of this issue do not. I don’t know how old children have to be before they can be involved in meaningful PAR (in fact, a classmate of mine asked this very question last night! Thanks, Jeff!), but I suspect the answer has to do with what you want out of the PAR, as well as who has to “buy in” to the findings to effect change and how those people feel about children. I also suspect that the answer might be “not that old.” I suspect that elementary-aged children can be meaningful participants in PAR.
So back to my school and the idea that’s hatching in my head: What if the students who have those intellectual challenges I listed were recruited to perform PAR at PCDS? What if they worked to design research protocols and to collect data, and then they synthesized and presented their findings to the headmaster, the board of trustees, the faculty body, the parent body, the student senate, the student body? What if their findings had real and immediate impact on the questions we’re asking ourselves now, which include pressing questions about learning management systems, class size and teacher load, technology implementation in the classroom, elective offerings and student choice in curriculum, graduation requirements, capstone projects, college counseling, and community-building, to name only a few? I imagine these students might have some real, heretofore under appreciated wisdom to share that could have immediate impact on the decisions we as a school are making. And I think the very process could serve to empower these students, who I think may be among the most marginalized students in our generally-not-so-marginalized school.
There are some steep-seeming logistical concerns. Here’s a non-comprehensive list:
- What would be the criteria for inclusion as one of the participants? Would students have to have an official diagnosis, or would self-identification suffice?
- How could I recruit students in an ethical, sensitive, appropriate way?
- Would students be reluctant to participate, for fear of “outing” themselves? Would their parents worry about stigma?
- Would students be inclined to take on additional work of PAR, on top of schoolwork that might already be challenging because of their intellectual or cognitive challenges?
- Would students be incentivized to participate without a grade? Could they get class credit for participating? Is that ethical?
- Would my school administration support or embrace such a project?
I don’t now the answers to those questions, but I think they’re worth exploring. After all, The timing seems perfect (as a school, we are in a period of self-reflection, reevaluation, and change) and the student-centered goals of PAR are absolutely consistent with the values and mission of PCDS. But if I did this, it would have to be the students’ voices front and center–not their parents’, not their teachers’, not their doctors’/therapists’/tutors’/coaches’.
No PAR by proxy at PCDS.
Bautista, M.A., Bertrand, M., Morrell, E., Scorza, D., & Matthews, C. (2013). Participatory action research and city youth: Methodological insights from the council of youth research UCLA, 115(100303), 1–23.
Brault, M.W. (2012). Americans with disabilities: 2010: Household economic studies. Current Population Reports. Washington, D.C.: U.S. Department of Commerce, Economics and Statistics Administration, U.S. Census Bureau. 1-23
Denzin, N., & Lincoln, Y. (2008). Introduction: Critical methods and indigenous inquiry. In Denzin, N., Lincoln, Y., & Smith, L.T. (Eds.) Handbook of critical and indigenous methodologies. 1-20.
Dunbar, C. (2008). Critical race theory and indigenous methodologies. In Denzin, N., Lincoln, Y., & Smith, L.T. (Eds.) Handbook of critical and indigenous methodologies. 85-99.
Levins-Morales, A. (1998). Medicine stories: History, culture and the politics of integrity. Cambridge, MA: South End Press.
Ostmeyer, K., & Scarpa, A. (2012). Examining school-based social skills program needs and barriers for students with high-functioning autism spectrum disorders using participatory action research. Psychology in the Schools, 49(10),p.932-941.doi: 10.1002/pits.21646
Stobbe, M. (2011, February 27). AP impact: past medical testing on humans revealed. The Washington Post. Retrieved from http://www.washingtonpost.com/wp-dyn/content/article/2011/02/27/AR2011022700988.html