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Reflections of an Undergraduate Participatory Action Research Group: Exploring Disability Service in College

Dr. Courtney Wilt

Dr. Courtney Wilt graduated with her PhD from the Department of Special Education, University of Kansas in 2021. Since graduating, Courtney has been working at the University of Wisconsin at Whitewater as an Assistant Professor in the College of Education and Professional Studies. It is her enthusiasm for teaching and engagement with students that prompted this action research project! Within the UWW community, Courtney and her colleague Dr. Matthew Wolfgram mentor an undergraduate action research collective, which began in Fall of 2021, to better understand the experiences of students with disabilities at UWW specifically. Their work is highlighted here and serves to give insight into the potential and process of undergraduate action research collectives with a focus on informing university supports and services for students with disabilities. 

Ashley Peterson

As a campus tour guide at the UW-Whitewater (UWW), communication sciences major Ashley Peterson wanted to know: How does the experience of students with disabilities at UWW align with our university ethos of accessibility and inclusion? In other words, guiding potential students and their families through the UWW campus while highlighting the accessibility features and inclusive programming of UWW, Ashley, who does not identify as disabled, was curious about the realities of this particular ‘selling point’. 

Ashley was not alone in contemplating these questions, McKenna Meyer and Maggie Tienor, also undergraduate students in the College of Education and Professional Studies at UWW, came together to form the initial action research group, asking: 

What factors shape the college experience for students with disabilities at UWW, and how can supports and services be improved to better address their needs? 

McKenna Meyer
Maggie Tienor

The action research group formed to address these questions is titled the Intersectional Action Research for Disability Justice (IARDJ), which is an ongoing effort to center students with disabilities broadly, meaning members and participants are not required to have (or have had in the past) formal diagnosis or means of support, such as special education services in K-12 or accommodations through UWW’s Center for Students with Disabilities. This framing is purposeful in seeking nuanced and intersectional understandings of college students with disabilities and their experiences. Thus, the IARDJ holds space for expansive perspectives on disability and engages a multi-dimensional analysis that accounts for intersecting identities and social forces in the context of college life. 

The IARDJ holds space for expansive perspectives on disability and engages a multi-dimensional analysis that accounts for intersecting identities and social forces in the context of college life

Given this framework, recruitment demanded multiple means of outreach–from campus clubs, such as Active Minds, a student-led organization focusing on mental health, to personal contacts of individual researchers. Student researchers read literature, developed interview protocols, conducted individual interviews, wrote researcher notes, and came together in a process of coding and analysis. Each of these dynamic processes, guided by Dr. Wilt, challenged and supported students to think critically about the data and their own relationship to it. Below, we describe four emergent themes, followed by individual researcher insights that illuminate the power and potential of attending to the research process itself. 

Findings: Key Takeaways

The findings of the group are preliminary, based on a modest sample of interviews (n=6), which are nonetheless both rich and illustrative of some of the challenges and other experiences faced by students with disabilities. Preliminary analysis indicates four emerging themes: (a) gender and disability intersections, (b) extra labor of obtaining services and navigating siloed university entities, (c), impact of space and place and (d) the importance of advocacy and representation. 

Theme 1: Gender and Disability Intersections

Gender identity and expression was found to intersect with how students with disabilities were perceived by others when advocating for themselves and their needs. For example, male participants experienced fewer barriers when enacting self-advocacy with professors, instructors, and advisors when requesting accommodations. In particular, female students experienced barriers to having their accommodations recognized as valid in the context of advising. Often, female students enlisted a legitimizing source to have their voices heard and needs met. These legitimizing sources could be a male classmate advocating alongside/on behalf of the female student or a ‘higher up’ person in the advising office stepping in. Furthermore, female participants were more likely to be positioned as less believable or too emotional when advocating for their well-being and educational support needs. For example, one participant described her professor’s reaction to her sharing her course-related anxiety,  telling her to stop crying and saying, “No one will take you seriously.” 

Theme 2: Extra Labor of Navigating Siloed University Entities

This theme asserts that the atomization of university entities (i.e., the process or state of fragmentation or disintegration into smaller parts) creates gaps that, in our findings, students with disabilities are left to bridge on their own. For example, one participant described difficulties receiving answers from offices across the UWW campus to related questions, such as how to register with a reduced course load accommodation, plan a course of study, and apply financial aid with full time student status. This creates extra labor, both physically and emotionally, that their peers without disabilities may not experience and compounds the challenges faced by students with disabilities in university settings.

Theme 3: Impact of Space and Place

Campus life holds multiple, intersecting cultures that differ across the various places (e.g., offices, colleges, living spaces) and the people/groups who occupy them. We found that campus spaces had a significant impact in shaping experiences for all participants. Spaces were defined by their physical and tangible aspects, and the interactions and experiences that took place within these specific places. Physical characteristics of accessibility did not inherently generate inclusivity. For example, one of the newest buildings on campus boasts accessibility as a core feature, yet that particular building was also viewed as less comfortable socially than other, less up-to-date buildings on campus. Ultimately, this theme highlighted the socially constructed nature of space and illustrated how messages of accessibility may not align with actual student experiences. 

Theme 4: Importance of Advocacy and Representation

Participants noted the value of disability representation in the student body generally and in student leadership specifically. Greater equality and understanding amongst faculty and peers was of high importance. Participants expressed the need for greater understanding of ‘invisible’ disabilities and wished to be treated as competent individuals and not put on a pedestal for their accomplishments as a person with a disability. Finally, participants noted gaps between medical, or internalized, notions of disability and social notions of disability that recognize social and environmental factors as contributing to experiences of ableism. 

Together, these themes illuminate the need to approach inclusive university aims with an intersectional lens. Future directions for the research project include involving student researchers with disabilities and gaining more student perspectives.

Theme 5: The Benefit of Action Research 

The final theme relates to the research process itself. The iterative process of action research helped shape, deepen, and disrupt researcher knowledges, assumptions, and ideologies. In the process, researchers gained training and practice in research skills. Below, each of the undergraduate researchers describe their individual perspectives on the research process. 

Undergraduate Researcher Insights

Ashley: In this project I have had a part in designing the research, collecting and analyzing the data, and writing research reports and presenting findings equal to that of my faculty mentors. I helped organize the recruitment of participants, scheduled and conducted interviews, transcribed audios, and analyzed the results. This has allowed me to develop as a research professional and will help me in future projects. Also in this research process I have identified and worked with the interesting aspects of diversity that are different to each individual person. This intersectional perspective will help me to contribute to the diversity and success of future projects as well as in my professional career.

Maggie: With this project, I have had the opportunity to be a part of an equal opportunity team in which all researchers and mentors get to play an important role in the design, organization, and execution of the study. I enjoyed being able to conduct interviews and meet with participants to learn about their individual perspectives regarding accessibility. This particular feature of the project helped me further recognize the multifaceted nature of identities and the importance of acknowledging and advocating for diversity in all forms. Both of these aspects will greatly influence my work as a researcher and the services I provide as a future healthcare professional. Regarding the theme of advocacy and representation, for instance, I am committed to serving my future clients to the best of my ability and in a way that respectively and accurately acknowledges each of their individual identities. I learned more about the process of gathering and analyzing data as well, which are additional skills I can utilize in future professional opportunities.

McKenna: Through this project I have gained many useful skills. I have learned how to conduct interviews for research purposes which can be applied for other interviews I may do in the future. This research has strengthened my knowledge of how students navigate their own disabilities personally and academically which has made me more confident in having conversations with people about their own disabilities experiences and stories for my personal life and future career. As a future educator, it is important to me to understand all my students and adhere to their struggles. This research project has opened my eyes to students with disabilities and has made me more equipped to help in future situations in my classroom. I understand that there is more than one factor to a student’s struggle, whether that be gender discrimination, socio economic exclusion, or spatial factors. From this project, I have more knowledge surrounding what shapes student success and will be able to use that knowledge in my future as an educator. 

Recommendations

Our five recommendations below draw on these findings to advance disability justice through centering the diverse voices and experiences of students with disabilities.

  1. Universities should consider policies that impact opportunities for students with disabilities to be recognized for their academic contributions. For example, Dean’s Lists and/or other forms of academic student recognition should include academically qualifying students who receive reduced course load as an accommodation.
  1. Universities should provide opportunities for instructors to reflect on their gender-based assumptions of student needs as it intersects with disability. For example, how might instructor responses to students seeking support for anxiety and depression be impacted by student gender expression? How might instructors’ own histories and experiences shape responses to student requests or emotions? This recommendation also applies to other forms of student expression and identity, such as race, language, and sexuality. 
  1. University offices (e.g., registrar, centers for disability services, health centers) should coordinate to decrease the extra labor experienced by students with disabilities and reduce risk of attrition or failure.
  1. Universities should promote disability representation in all aspects of university life through strategic recruitment and pathways to leadership roles. 
  1. Universities should explore expansive notions of space in the student experience, recognizing spaces are impacted by both social and physical domains. For example, in acknowledging that accessible spaces do not necessarily equate to inclusive spaces, universities can curate social and cultural aspects of inclusivity.  

In closing, we reflect on the generativity of this work, developed and enacted by undergraduate student researchers attending UW Whitewater, the University of Wisconsin system school that enrolls the highest percentage of students with reported disabilities. UWW has tremendous dedication to accessibility and inclusion and yet following national trends, students seeking services from the Center for Students with Disabilities at UWW are more and more frequently reporting mental health-related diagnoses and support needs, such as anxiety and/or depression. This research collective (and future collectives) serves as a means to reflexively identify and address current and future concerns of the largest university constituents–undergraduates–leveraging their important voices and affording opportunities and contributing to a rich research community.

Finding Your Professional Home – Consider AAIDD!

There are so many things to navigate as a graduate student (like class assignments or maybe theses and dissertations), but one of the more fun activities is exploring different professional organizations to see what suits your interests and feels like the network you want to be a part of!

Dr. Sheida Raley
Dr. Sheida Raley

As you think about different options, I encourage you to consider the American Association on Intellectual and Developmental Disabilities or AAIDD (https://www.aaidd.org/). AAIDD has existed since 1876 and is an international leader in the field of intellectual and developmental disabilities (IDD). 

One of the parts of AAIDD I like the most are all the opportunities for students and people early in their career to connect. In particular, AAIDD has a Student and Early Career Professionals (SECP) Interest Network which is led by students and early career professionals and hosts a range of events and opportunities to network and become involved in the IDD field. For example, every year at the annual conference, AAIDD SECP hosts a pre-conference event called the Research Colloquium in which students and early career professionals can submit a proposal to share a topic or research project they are interested in or moving forward for 7-8 minutes and then seek feedback from peers or people further along in their careers. When I was a doctoral student, I presented the results of a small pilot project focused on self-determination and I was amazed by how many people I connected with after the very short presentation who wanted to work together in the future. As we continue to navigate this pandemic, finding opportunities to connect with others who share similar interests and avoid feeling isolated is critical, and AAIDD might be one way to connect!

AAIDD also publishes three peer-reviewed journals (https://www.aaidd.org/publications/journals) you might find interesting to highlight your upcoming work, perhaps sign up to be a reviewer to provide service to an international organization, or read the latest research in the IDD field, including:

  • American Journal on Intellectual and Developmental Disabilities
  • Intellectual and Developmental Disabilities
  • Inclusion

I encourage you to consider AAIDD or at least look into it and see if it might be one of your professional homes! You might even check out attending the AAIDD Annual Conference (https://www.aaidd.org/education/annual-conference) with a particular focus on the opportunities for students and early career professionals. For 2022, the theme is Dismantling Systemic Barriers: Reenvisioning Equity and Inclusion, so you can count on spaces for self-advocates, researchers, practitioners, policymakers, and students and early career professionals to come together to reenvision our efforts to advance equity and inclusion in the IDD field.

Sheida K. Raley, Ph.D. is an Assistant Research Professor at the Kansas University Center on Developmental Disabilities and Assistant Professor in the Department of Special Education. Dr. Raley’s research focuses on assessment and intervention related to self-determination for all students, including students with extensive support needs learning in inclusive contexts. 

Opportunities for Involvement with TASH!

A Disability Advocacy Organization Focused on Inclusion

December is an exciting time!  Many of us are planning for the holidays, preparing for final exams, and wrapping up a busy semester.  For me, December is also an exciting time to reflect and prepare for the annual TASH conference.  TASH is an advocacy organization that is focused on inclusion for individuals with significant support needs.  Members of TASH include researchers, family members, self-advocates, educators, policy professionals and many more.  

Each quarter, TASH publishes two journals: Research and Practice for Persons with Severe Disabilities and Inclusive Practices.  Inclusive Practices is a new journal from TASH that focuses on research-to-practice considerations for individuals with significant support needs.  This journal is focused on topics across the lifespan, and it is intended to provide new insights and strategies in an accessible way for educators, families, self-advocates, and more.  I think one of the most exciting aspects of Inclusive Practices is that there are several different types of articles, which makes it possible for not only researchers to publish content, but also educators, family members, and self-advocates.  You can read more about the Inclusive Practices journal here: https://us.sagepub.com/en-us/nam/inclusive-practices/journal203704#submission-guidelines

If you are interested in getting involved with TASH, you can join one of the many Communities of Practice. There are many different groups within TASH that are focused on issues such as inclusive education, employment, communication access, and self-advocacy.  Additionally, TASH has an Early Career Researcher Network (ECRN).  I am the current Chair of the TASH ECRN, and it is a wonderful network of doctoral students and early career assistant professors who are committed to the TASH values.  We meet monthly, and we plan important activities that not only support each other’s research but also advance the TASH mission.  The TASH ECRN is open to TASH members.  If you are interested in joining the ECRN, please contact me, and I will add you to our listserv: zagona@ku.edu. Another way to contribute to TASH would be to make a donation on the website.  

Happy Holidays!

Alison Zagona is an Assistant Professor in the Department of Special Education.  Her research interests include inclusive education and identifying strategies for supporting students with extensive support needs to experience success and full inclusion in general education classrooms.

Alison Zagona, PhD

Are you brave enough to be inclusive?

Inclusion, equality and equity are hot topics these days here in the USA and internationally. We’re becoming more aware of inequalities and the need for equity, whether it’s in relation to race, ethnicity, disability, gender and/or socio-economic differences, and you too have a role to play. 

There are many human rights treaties signed and ratified by a majority of countries around the world, some of which include the UN Convention on the Elimination of all Forms of Racial Discrimination, the UN Convention on the Rights of Persons with Disabilities, and the UN Convention on the Elimination of Discrimination Against Women. Once these treaties are ratified, they become legally binding according to international law, and countries are required to embed them within national laws and policies. Unfortunately, the US is one of the few countries to have yet to ratify these treaties, but that’s a story for another day.

You might be thinking “ok, it’s nice that these human rights treaties exist”, you may feel a little disappointed that we haven’t yet ratified them in  the US, “but at the end of the day, I don’t work in the government or in policy-making, so what does this have to do with me?”. I invite you to consider that no matter what roles you play in your life, your contribution to the inclusion of all members of society does matter. Policies and treaties exist to address known inequalities, and inclusion and equity depends on each of us. 

Yes inclusion needs to be embedded within law and policies, but if it’s not consciously put into practice in our daily lives, and by leaders, organizations and institutions in the community and wider society, members of our community will continue to experience discrimination and exclusion. For example, at the UNESCO Chair in our training programs, we raise awareness of the global movement towards inclusive practice within physical education, physical activity and sport with a view to addressing the current participation inequalities that exist. We provide tools and techniques to facilitate inclusive practice, such as the  Inclusive Martial Arts Platform which provides resources for instructors on how to promote greater inclusion of women and girls, people with disabilities, and other marginalized groups in the practice of a variety of martial arts. The unit on the inclusion of persons with disabilities features a video by a current University of Kansas (KU) student in the Special Education Doctoral Program, Nicholas Hoekstra, with  Tips for coaches to include students with visual impairments and blindness.

The most important aspect of our work, at least in my view, is that we guide learners to explore their own implicit biases in relation to people with disabilities, women and girls, and any other marginalized group in the community. This potentially takes inclusion from a concept in our minds, to an embodied value that is expressed through our words and actions.

As children, our minds are like sponges and we absorb the conversations we overhear, especially from adults we admire including parents/caregivers, grandparents, teachers, spiritual/religious figures, media, peers and so on. These become our implicit – or unconscious – biases, and they subconsciously feed into our thoughts, words, actions and behavior. Sometimes these implicit biases even conflict with our explicit biases, which include our conscious values and beliefs. 

I’ve travelled a lot around the world and, everywhere I have lived, I have had conversations with people from the majority group in the community who believe they are inclusive – except towards one particular marginalized group. This is usually followed by a list of reasons to justify or rationalize their belief of why this group is worthy of exclusion. For example, in Ireland some people have prejudice towards the Traveller community, an ethnic minority. In New Zealand I spoke to people who expressed prejudice towards the indigenous Maoris – I’m sure there are groups in your community that are coming to mind right now. The problem is that these people are not fully acknowledging their biases or the social factors that have contributed to, and often even perpetuated, inequity towards the group they have expressed prejudice towards.

Sometimes it’s a lot more subtle than this, especially when we know we shouldn’t have prejudices or discriminate against a certain group. When it comes to disability inclusion, for example, it is not popular to express negative opinions. This can make it difficult to truly acknowledge our own implicit biases, however, because we have a judgement that it is “wrong” or “bad” to express these feelings. Yes it’s not ideal, but this judgement can prevent us from working through it. What we resist persists and, in this case, can lead to feelings of exclusion, disconnection, being misunderstood, disrespect and much more. 

When I was growing up, the narrative in relation to people with disabilities was that of pity. I recall adults saying things like “oh the poor things”. Once I truly acknowledged this and began to look at how it played out in my life, and in my relationship with a sister with multiple sclerosis (MS), I was able to shift from wanting to “help” the people with disabilities in my life and, later, in my career – as if something were “wrong” with them – to a more inclusive and mutual relationship based on respect, empowerment and support – if needed. 

It takes courage, understanding and compassion to start unpacking these biases. It’s not always easy to take a good long look in the mirror, but it is necessary if you wish to live in an inclusive society because, without self-awareness, you, I, we can be unknowingly contributing to discrimination. We all have biases, in one way or another, and I believe we have a moral obligation to overcome them and choose inclusion. 

I invite you to take a few minutes to explore your own biases. This exercise can be uncomfortable at times but what is on the other side of this discomfort is inclusion, humility, compassion, potential for more meaningful connections and relationships that ripple out to co-create an inclusive community. Will you find out about your own biases? https://ipepas.com/wp-content/uploads/2020/12/Implicit-Biases-and-IAT.-A.-Clardy.pdf

References:

UN Human Rights Office of the High Commissioner: https://www.ohchr.org/en/professionalinterest/pages/coreinstruments.aspx

Harvard Implicit Association Tests: https://implicit.harvard.edu/implicit/takeatest.html

About the Author

Aisling Clardy

Aisling Clardy is passionate about co-creating a healthy and inclusive society and puts this passion into action at her role at the UNESCO Chair at IT Tralee (soon to be Munster Technological University). The UNESCO Chair at IT Tralee works through international partnerships towards fulfilling human rights in and through Physical Education, Sport, Recreation and Fitness. Aisling (pronounced Ash-ling) primarily works on developing blended training and education resources for both practitioners and training providers to build their capacity to adopt inclusive practice, with a specific focus on the inclusion of people with disabilities. 

UDL: My home

I was introduced to Universal Design for Learning (UDL) in 2006. I jumped into the implementation of UDL in 2007 and have since found a home in UDL. The framework teaches me, challenges me, frustrates me, and brings me hope.

In 2006, I came across the book Teaching Every Student in the Digital Age by David Rose and Anne Meyer (2002). While I was really interested in the book, I wasn’t in the K-12 environment at that point. I was, however, leading a solo research project through the Indiana Department of Education. Three districts agreed to engage families and staff around a participatory action research (PAR) study looking at the participation of the families of students with disabilities beyond policy-based activities. I wanted to know whether families engaged with the schools outside of Individual Education Program meetings and meetings related to services. Did families want more involvement? And what would that involvement look like?

Participants at all three sites took advantage of the opportunity for open dialogue. One setting was a rural community that had always focused on activities like Muffins with Mom and Doughnuts with Dad, but through involvement with the study, participants came to realize that many families had conflicting obligations. The families of children with significant disabilities, for example, weren’t available in the mornings because they were involved in the transportation of their children (e.g., getting them on the bus), and so they were automatically excluded. The group worked on making the meals more inclusive by offering different times and sending out specific invitations to families who had not attended in the past.  As a result of the PAR project, families in an urban district began to show up to Book Night at one elementary school because they truly felt they and their child were welcomed. 

It teaches 

In retrospect, I now see how the Rose and Meyer book influenced my study. Multiple means of engagement, representation, and action and expression, hallmarks of the UDL framework, were woven into its design. Learning how the affective, recognition, and strategic networks processed information and how things like choice in content, tools, or context could make a difference helped to shape my thinking. While I was not providing instruction and I needed to maintain a researcher/participant relationship, I was still providing an environment where I wanted the participants to feel comfortable, understand the purpose of the study, and have the ability to express their thoughts in ways comfortable to them and within their own time. 

It was soon after that study that I was hired by the Bartholomew Consolidated School Corporation as their UDL Coordinator, the first known position of its kind in U.S. schools. This forward-thinking district was shifting to its current position of using UDL as its guiding framework for all academic and behavior support decisions. From textbook selection to teacher evaluation, anything that had to do with supporting the academic and behavioral needs of students was designed using the framework. Those four years of working with teachers, administration at the building and district level, and staff members challenged me. I believe my background as a special educator who leans heavily toward socio-cultural theory positioned me to adopt the framework quickly. I know, though, that educators work from other theoretical backgrounds, some of which can make adopting the UDL framework difficult for them.  While those are challenges others experience, the framework itself still challenges me.

It challenges 

While completing my post-doctorate at CAST (the creators of UDL), I authored my first book on UDL, Design and Deliver: Planning and Teaching Using Universal Design for Learning (Nelson, 2014). As my publisher and I talked through the design for the book, I asserted that it would have to be fully accessible and designed using the UDL framework. I took care to write in a conversational tone, narrow big ideas into digestible chunks, use story telling as a vehicle to understanding, and embed opportunities for choice, but the design of the digital book was of particular importance to me. Fully accessible e-books were not a guarantee in 2014. My publisher welcomed the opportunity to grow their knowledge and I welcomed the opportunity to answer questions about the application of UDL outside of the K-12 environment. Every book and product I have produced since 2014 has stemmed from the framework. This requires a different level of effort and focus. For example, I created a card game to help educators dig into the framework, but it is not yet in a digital format. That means it is still not fully accessible to all learners. The framework continues to remind me of the variability present in all learners and pushes me to provide for that variability.

It frustrates 

No framework encompasses everything. While it is true that an all-encompassing framework would have an unmanageable amount of content, the larger challenge is that a framework is inherently interpreted. As the field as seen with MTSS (multi-tiered systems of support), RTI (response to intervention), PBIS (positive behavioral interventions and supports) systems and supports can be usurped, misinterpreted and applied in ways that differ from their original intent. As UDL researchers and implementers seek to identify fidelity within the application of the framework, interest in the framework has expanded exponentially across the globe. This has led to a myriad of interpretations.  For example, it is understandable that most describe the framework using the three principles of engagementrepresentation, and action and expression. The framework, though, is grounded in the concepts of variability, flexibility, goals, rigor, and choice (Nelson, 2018). Ignoring, lacking knowledge of, or simply sidestepping these concepts within any design creates an environment void of opportunity. Finally, the application of the framework is intended to move learners toward one goal – to become expert learners. We want learners to become purposeful, motivated, resourceful, knowledgeable, goal-directed, and strategic. When educators enter an environment not understanding this intent or without believing that all learners can achieve growth toward these outcomes, they cannot truly utilize the UDL framework.

It brings hope

I have worked with educators across North America, Europe, Asia, Africa, and Oceana. During this time of COVID, I have been working with educators in Malawi to introduce UDL in ways that are applicable in rural settings and to share specific supports for learners with disabilities.

Malawi’s flag

As is true with every group I meet, these are motivated individuals who are seeking guidance in how to reach all learners. They recognize that there are gaps in learning, opportunity, and design for children with disabilities, as well as other children. They are looking to UDL to help them discover evidence-based strategies, techniques, and practices to bridge those gaps and create inclusive environments where all learners can become expert learners. I am happy to help.

Nelson, L. L. (2014). Design andDeliver: Planning and TeachingUsing Universal Design for Learning. Paul H. Brookes Publishing: Baltimore, MD. 

Nelson, L. L. (2018). A Tree for All: Your Coloring Book of UDL Principles and Practice. CAST Publishing: Wakefield, MA

Rose, D. H., & Meyer, A. (2002). Teaching every student in the digital age: Universal design for Learning. ASCD: Alexandria, VA 

Loui is a 2001 graduate of the University of Kansas, Beach Center on Disability. She is the president of The UDL Approach which provides educational consulting. She has authored three books about UDL as well as a card game. She also produces two popular podcasts: UDL in 15 Minutes, and UDL Research in 15 Minutes.

From War to Peace and Education for all… Rwanda

Elementary school classroom in Gicumbi, Rwanda.

When most people think of Rwanda, they cannot help but remember the country’s tragic history. In a period of 100 days in 1994, over a million Tutsi were killed in what is considered one of the worst genocides of the 20th century. Today, however, Rwanda is better thought of as a country of warm, welcoming people and diverse natural beauty. Known as the land of a thousand hills, the mountainous central African country is located just 75 miles south of the equator and boasts dense, equatorial forests in the northwest and a tropical savannah in the east, with five volcanoes, 23 lakes and numerous rivers (Government of Rwanda, 2020). 

One of the unfortunate consequences of the violence during the 1994 genocide was an increased prevalence of people with disabilities in Rwanda, a fact that has helped to shape a strong disability movement within the country (Njelesani et al., 2018). The government of Rwanda is now committed to protecting the rights of persons with disabilities, especially the right to education. This is reflected in the Special Needs and Inclusive Education Policy (2018), which  counts among its priorities the equitable access to education for students with special educational needs in mainstream and special schools. 

Children in a classroom with hands raised responding to their teacher.
Children in a classroom with hands raised responding to their teacher.

The promise of providing an equitable education to students with disabilities is not simple. The 2014 Rwandan school census estimated that around 24,862 children with disabilities were attending preschool, primary and lower secondary schools. This represents less than one-percent of all students enrolled at that time (UNICEF / Education Development Trust, 2016). According to the 2011 World Health Organization’s World Report on Disability, approximately 5.1% of children between birth and 14 years of age live with some type of disability. It is likely, therefore, that many children attending school in Rwanda have unidentified disabilities. This is further supported by the fact that it is often teachers who fill out the school census and the identification of children with disabilities tends to focus on those readily noticeable impairments.

A panel of teachers at a community of practice meeting.

To help Rwandan teachers meet the needs of all their students, including those who may have special educational needs but who have not been formally identified as having disabilities, Inclusive Development Partners (IDP) has partnered with the Soma Umenye project (funded by USAID and led by Chemonics International) on an inclusive education pilot.

In the period from January to March, 2020, the team provided training and follow-up support to 25 first grade teachers, head teachers, and sector education inspectors, on Universal Design For Learning (UDL) strategies that have been specifically considered for use in the unique context of Rwandan schools. 

Why UDL? 

UDL is based on the premise that by offering learners flexibility in the way information is presented (multiple means of representation), the way learners engage with materials (multiple means of engagement), and the ways learners express their understanding (multiple means of action and expression), teachers can better prepare for the variability in their students that is natural in human development  (Meyer et al., 2014). A further advantage of UDL is that it does not rely upon specific technologies or resources. This is important for Rwandan schools, where many classrooms do not always have consistent access to electricity and material resources are limited to those objects teachers can readily find in their environment. 

What does UDL look like in the Rwandan classroom? 

Engagement: To keep students engaged, teachers tried a number of different strategies, including using a visual schedule at the beginning of class to help students know the expectations for the lesson, singing the alphabet song while clapping or pointing at the letters they have already learned, and implementing classroom rewards wherein the teacher would dance or sing for the students when they successfully completed their work. 

Representation: To provide multiple means of representation, teachers sometimes made models of letters out of sticks or folded grasses that students could touch, brought in household objects to act out the events of a story (such as dirty vegetables and a bucket to demonstrate washing), or made a game of mixed syllable cards for students to build words out of. 

Action/Expression: In order to provide students with flexibility when demonstrating their understanding, teachers would ask students to walk around the room and point to objects that began with a target letter sound, match words with their pictures on the chalkboard, or work in pairs to share ideas. 

How do these activities differ from good teaching? 

Many of the UDL strategies introduced during this project may seem like “just good teaching”. Traditional teaching in Rwanda, however, relies heavily on a model in which students, seated in rows, follow along in unison as a teacher writes on a chalkboard.  This is a legacy that the Soma Umenye project has attempted to address more generally, through the provision of scripted lesson plans that build in evidence-based literacy strategies and student-centered methods.  Adding to this innovation, the UDL strategies observed in the early months of the pilot project in Rwanda represent a new way of thinking about how students engage with learning. A major emphasis across these strategies is the increased participation of students in the learning process, whether it be through more hands-on learning opportunities or small groups where the students support one another. As one teacher put it: 

“Before UDL, I didn’t know what to do with these students (students with disabilities); we just brought them in, but we didn’t ask them questions or anything. Now I know I can support these students. UDL has made all learners our friends.”

References

Njelesani, J., Siegel, J., & Ullrich, E. (2018). Realization of the rights of persons with disabilities in Rwanda. PLoS ONE, 13(5), E0196347.

Meyer, A., Rose, D. H., & Gordon, D. T. (2014). Universal design for learning: Theory and practice. CAST Professional Publishing.

Republic of Rwanda. (2020). Welcome to Rwanda. Republic of Rwanda. https://www.gov.rw/

Republic of Rwanda. (2018). Revised special needs and inclusive education policy. Ministry of Education. https://mineduc.gov.rw/fileadmin/user_upload/pdf_files/SNE_Policy__4.10.2018.pdf

UNICEF / Education Development Trust (2016). A study on children with disabilities and their right to education: Republic of Rwanda.  https://www.unicef.org/esaro/Rwanda-children-with-disabilities-UNICEF-EDT-2016.pdf

World Health Organization. (2011). World report on disability 2011. World Health Organization. https://www.who.int

Our Author…

Nicholas Hoekstra is a visually impaired martial artist who somehow found himself pursuing a PhD in special education. After several years working in international development in Ecuador, as an advisor on inclusion, and then with the World Intellectual Property Organization’s Accessible Books Consortium, Nick became interested in strategies for inclusive education in low-income and low-resource environments. He has worked on projects in over 20 developing and least developed countries in Africa, Asia and Latin America. 

Reflections of the 2019 Cohort: Navigating the Doctoral Program in Uncertain Times

The 2019 Cohort members were asked to provide a word(s) that summed up their experience, a few sentences and a symbolic picture!

GRATEFUL

This year was not what any of us expected, but I still find myself really grateful. I’m grateful for my cohort and the community we formed, grateful to my research team for providing me with so many new experiences, grateful to the KU Special Education Department staff for their wisdom and guidance, and grateful that I chose KU over other opportunities. In a time where I should be missing family back home in NM, I feel like I’ve found one here at KU as well. So very thankful for this experience and excited for the next three years, hopefully not in quarantine. 

BALANCE

My first year in the doctoral program taught me a lot about balance. Maintaining an equal balance between work, family, scholarship, and other life hiccups (like a global pandemic) wasn’t feasible for me. Some days I just had to be a parent and nothing more. Other days I killed it as a student. Often, there was no way to predict which version of myself I would have to be that day. My advisor and other faculty in the program really helped me accept this ambiguity, and gave me new skills for managing it; skills like setting reasonable expectations, creating milestones marking progress towards long-term goals, and prioritizing/re-prioritizing when needed. The people in this program care about you. They know you can be successful in the program, but they want you be successful in all aspects of your life.

My “desk” after a day of working from home with my three year old son.

EXCITING CHALLENGES

Starting my doctoral program at KU challenged me intellectually in ways I have never been challenged before. I am most grateful for the support from my advisor, family, cohorts, faculties, and friends who helped me get through every difficult period. My journey will be continued and I anticipate as much excitement as I have experienced in my first year.

NEVER-A-DULL MOMENT

Although the year has been full of change and unprecedented experiences and events, it has come with a lot of joy as well. From experiencing the charm of Lawrence, to making new friends and being challenged in my thinking, I am truly grateful for this experience and for the support from my peers, my instructors, and my family.

Finding a way to make doc studies a success when working from home 😊

ROLLER COASTER

Stepping into a new world can make you feel like falling through a rabbit hole. But our cohorts and professors provided me the perfect support and enlarged my world view. I am counting the days until I get back to our lively campus again.

Moving Beyond Policy: Embracing Social Equity Through Participation

We shall not fail or falter, we shall not weaken or tire – neither the sudden shock of battle nor the long drawn trails of vigilance or exertion will wear us down. Give us the tools and we will finish the job. 

Sir Winston Churchill

Sir Winston Churchill, British, Prime Minister

It was just about four AM on a warm August morning. I just landed in Kansas on my first visit here. My phone was discharged (dead), and I had no clue if the cab service I booked had shown up. This is because I was seven hours late. My flight which was scheduled to land at seven pm had now made it at four AM. Suddenly, I felt a tap on my shoulder and a man told me he was my cab driver. That was my welcome to the Midwest and Kansas. This driver had waited for me for over seven hours because he said, he couldn’t have left me alone. He also took calls from my family and ensured them that he was there on time to help me when my flight landed. This might be surprising and different, but I have always felt that if I believed, it happened.

My experiences in coming to the University of Kansas has been a magical ride that I can only picture as being a long and beautiful story. In late September of 2017, I was unhappy that in spite of having some of the best laws on enabling people with disabilities, there was a wide gap in implementation. I had already decided to change my doctoral program and work towards building a career around disability and challenges that students face. Having lost my vision at just two, I have always been comfortable as to who I am. Speaking to Dr. Skrtic, at that time was a revelation. We spoke about violation of policy, the difference between the letter and spirit of ADA as well as the implementation challenges that still remained in the twenty first century.

American with Disabilites Act of 1990

I have always faced challenges at school and at work. Back home, a policy barely exists to assist or help people with identified disabilities. It is the family who is responsible for the child. My parents were well educated and very open to experiences. They brought me up to the best of their abilities. I remember my father trying to explain the meaning of a triangle early in my middle school years. The elephant in the room was however wider acceptance. Like here in America, the problem was the mindset of the wider society. While some people accepted, most others did not. What however I found different in America was the laws already enacted to protect the rights of people with disabilities.

I have found that more people who participate in creating a system, the better it works. It is people who enact and implement policy that matter. MY road to success has been paved by teachers, leaders, professionals, university faculty and friends who have had faith and believed. The biggest thing that I have been allowed to do is to participate on an even field. This has been with the objective: I can do things differently and do them well. 

Back in India when I was just one, I was diagnosed with a tumor. Over the next two years, my parents fought to cure me of Leukemia. There were many who stood with us, but many also felt that living with permanent blindness meant I had no advantages in the world. In a country where education is valued and families give up everything so that their child can study, my parents had to struggle to find schools for me. It was a challenge in explaining to teachers and school leaders that I was no different from the average five-year-old. 

Something I learned from my psychology teacher when I was 15. She said “unless I let you do things on your own, how will you understand your limits and cross them? “

“Unless I let you do things on your own, how will you understand your limits and cross them?”

Alice Sheppard- Choreographer

When we did find the teachers who allowed me to participate , it was an experience, as it is here in Kansas. I have found that when people decide to participate to see change, we start seeing a difference. System wide change requires us to create a structure of idea of participation that influences and touches many.

Many people come up to me and ask how I live and manage so far from home. My only answer is that I am at home. I am not living away from it. My support systems are stronger here than they ever were. I have met some extraordinary people in my journey. These aren’t people whose names are in any textbook or hall of fame. They are simple folk who have removed prejudice and accepted social equity as a personal philosophy. Take the motel owner I met on my first day here. I stepped out and knocked on the door at five AM. My debit card did not work, and I was in danger of not finding an accommodation. Looking at me, he asked me to first sleep and freshen up before we decided what to do. Historically, powerful objectives have been achieved through a movement. A social movement consisting of people who have a message and then take this message into society. I feel that if we are to enrich ourselves, we need to be a part of this movement to instill belief in others. When I was looking for changing my job at the end of 2015, senior executives asked me how I could hold down a difficult position if I had a disability. These were executives from powerful fortune 500 organizations. I attended over 50 interviews with not a single successful placement. These are all multinationals with headquarters in America and the U.S.  It is more important to do something rather than just having a policy on diversity. It is important to let people participate in the process to build a system of acceptance.

Sumanrath Sumani, 2018 Chancellor’s Doctoral Fellow, Special Education

Suman Rath is a second year doctoral student in the department of special education working within Policy and Systems change. Prior to this, he has worked within the corporate sector particularly  human resources, teaching and the nonprofits. His experiences include implementation, policy formulation and building systems for change. In over 5 years of experience he has created and structured change initiatives across a range of sectors including education and schools.

Learning from Space Child and Mechanical Robby…in memoriam of Richard Whelan

In describing his most memorable student, Richard Whelan said, “…I had the opportunity to work with the Space Child. He believed he was a general in outer space who commanded countless space ships. He sailed to faraway regions of space, destroyed stars, and invaded numerous solar systems. Space Child was written up in the Bulletin of the Menninger Clinic in 1952. On cold winter nights, this youngster and I would go outside and, using a telescope he built, chart the heavens so he could have new conquests. His knowledge of the stars was accurate. I knew this because I was a lab assistant in a university astronomy class (a good opportunity to meet girls…or young women in 1951). As I have reflected about that star gazing though, I have often wondered aloud which of us needed long-term treatment. However, I was assured by the child’s therapist that folie a deux (a shared or transmitted psychosis) was not a possibility.”

Richard (Dick) Whelan was a gifted educator, mentor, and a pioneer in the education of children withemotional and behavioral disorders (EBD). His earliest professional experiences in the 1950s were at the Children’s Hospital (Southard School) of the Menninger Clinic in Topeka, Kansas where he was a recreational therapist, teacher, and director of education.

In 1962, Dr. Whelan began his career at the University of Kansas (KU), where he had academic appointments in Special Education, Psychiatry, and Pediatrics and was the Ralph L. Smith Distinguished Professor of Child Development. He served as department chair, Dean of the School of Education, and director of interdisciplinary clinical research programs at the KU Medical Center.

Whelan also directed several federal projects that supported leadership development in special education. In the mid-1970s – a critical time in the development of special education and before the passage of the Education for All Handicapped Children Act of 1975 – he served in Washington, D.C. as Director of Personnel Preparation in the Bureau ofEducation of the Handicapped, the precursor to the Office of Special Education Programs. After retiring from KU in 2000, Whelan continued to work as aprogram consultant, special education compliance investigator, mediator,  and due process hearing officer until his death on January 9, 2015. Whelan self-identified as a “humanistic behaviorist” who drew from multiple theoretical perspectives and approaches to educate students with EBD. He was instrumental in thedevelopment of special education as we know it today. In 1986, he was honored as the first recipient of MSLBD’s Outstanding Leadership Award.

The following account Dr. Whelan’s “most memorable student” illustrates his ability to draw from multiple conceptual models to understand and design treatments. No doubt his eclectic perspective was influenced by his early experiences at the psychodynamically-oriented Menninger Clinic and his later experiences at KU, where several of his colleagues conducted pioneering research in applied behavior analysis (ABA).

Whelan’s description of Robby recognizes that his aberrant behaviors reflected underlying disturbed emotions (intrapsychic perspective) and that efforts to change Robby’s behavior improved those underlying emotions (behavioral perspective).

It’s also apparent that Whelan understood Robby in the context of his interactions with larger ecosystems – the clinical settings of the Menninger Foundation and the public high school (ecological perspective). Dr. Whelan’s story of Bobby follows. 1

The Menninger Clinic

In 1925, Dr. Charles Menninger founded The Menninger Sanitarium (later Menninger Foundation and Clinic) in Topeka, Kansas. Southard School for Children opened the following year and offered an internationally recognized residential treatment program for children and adolescents, including an educational program. In the 1930s, Menninger expanded its programs to train mental health professionals including psychiatrists and psychologists; by the 1940s, Menninger’s School of Psychiatry had become the largest psychiatric training center in the United States.

Charles’ sons, Karl and William Menninger, succeeded him and together they had a huge influence on psychiatric practice, professional training, and public awareness and understanding of mental illness. Karl Menninger was author of several best-selling books, including The Human Mind (1930), Man Against Himself (1938), Love Against Hate (1942), Theory of Psychoanalytic Technique (1958), The Crime of Punishment (1968), and Whatever Became of Sin? (1973). His brother, Will, developed a system of hospital treatment known as “milieu therapy” which involved patients’ total environment in their treatment. Will also led a national effort to reform state sanitariums. In 1951, he appeared on Time Magazine’s cover as “Psychiatry’s U.S. Sales Manager.”

In 2004, the Menninger Foundation programs moved from Topeka to Houston, Texas where it is now affiliated with the Baylor College of Medicine and the Methodist Hospital. The move resulted from several factors: treatment models moving away from longer- term residential treatment to shorter, out-patient approaches; the movement away from intrapsychic to pharmacological and behavioral treatment approaches; and, most notably, health insurance companies’ increasingly restrictive reimbursement practices for mental health treatment. Menninger’s could no longer afford to provide costly residential, milieu therapy interventions.

When I was invited to describe my most memorable student, I found it difficult to select a single case because there were so many who were not only memorable, but who also helped me find solutions to complex problems which confronted me while working in our profession.

I selected Robby. According the 1952 Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association, Robby’s diagnosis was “schizophrenic reaction, hebephrenic type.” In today’s DSM IV, it would be called “disorganized type.” Both labels addressed shallow, inappropriate affect, unpredictable giggling, silly behavior and mannerisms, and delusions. At first impression, Robby was a mechanical boy, but only somewhat comparable to “Joey, a mechanical boy” that Bruno Bettelheim wrote about in the Scientific American in March, 1959. 2

I was selected to introduce Robby to the residential setting at the Menninger Foundation. I waited on the front porch of the huge Victorian mansion which served as the residence on the campus known as Southard School. My first impression was of a big, goofy-looking teenage boy with a bed sheet over his head and shoulders. The sheet was tucked into a wide western belt so tightly cinched that flesh overlapped the top and bottom. And he had on a set of oversized aviator sunglasses. He refused my suggestion to see his room. Instead we headed to a big, dark, and dusty basement to locate the electrical and mechanical equipment. You see, Robby believedhe derived his power from those objects. And he feared that if he lost control of that power, he would explode. Hence, he used the cinch belt to hold the power in for his use as needed.

After a few weeks at Southard, Robby shed the sheet and sunglasses because the recreational therapists, child care workers in today’s parlance, had helped him learn that he was in a safe place– one that did not punish the outward expression of the inward pain he was obviously feeling. His belt remained tightly cinched, but we knew that when the belt moved to a new, less restrictive hold he was making progress. That was a clear measure of his increased internal control.

Robby was good natured and giggled often unless frustrated or thwarted by others. His voice was wooden, lacking in affect. He mostly started conversations by saying something like, “Oh yeah, Dick Whelan!” followed by a question or a statement like “What happens when the fuse blows?” I usually replied something like, “You and I will go to the basement and replace the fuse.” This caused gales of giggles – Robby’s, not mine. Robby usually had a big smile on his face, but while looking in a mirror, he would often smile and cry at the same time – a distressing sight forsure.

Robby was intellectually capable in math and science, and I taught him advanced algebra. His computational skills were errorless, but like many students he found word problems difficult. While solving a problem, he shook his body up and down, making noises that mimicked the sound of a Monroe or Friden mechanical statistical calculator. (Those of you old enough to have used those will know what I am talking about.) Robby’s vocabulary was advanced, but his social skills were terrible. He blurted out words that did not fit the context and then collapsed in fits of giggles because he thought his comments were funny. For example,when discussing a story about President Taft, he said, “Oh yeah, he has a fat butt!”

One clear memory of Robby goes back to a hot day in summer school, and he was sweating profusely while solving a mathematical problem. He said, “Oh yeah, Dick Whelan, I am going to make an air conditioner tonight and bring it to school.” I said, “Robby that is great!” although my private thought was that he was having an episode of grandiosity, a characteristic of his diagnosis. Sure enough, the next day, Robby proved me wrong by showing up with a type of air conditioner – a small fan with a bowl of ice. It worked for a few minutes, and Robby just beamed because of his invention. However, reality soon set in and we had a great lesson about adding more humidity to the already humid air. Such was the curriculum and teaching approach in a psychoanalytic center!

Robby taught me that no matter the diagnosis or prognosis, each child deserves our best. Robby made great progress, even though the last time I checked many years ago, he was not on the list of NASA astronauts.

My retirement job qualifies me for a cubicle, which is great because it allows me to slide my chair to whatever I need. On my wall I placed a sign with big print saying, “Don’t believe everything you think!” This comes from my time with Robby. I initially believed he would be able to function with general educationpeers. My colleagues warned me not to have such delusional thoughts, but I decided to explore that idea. After several visitsmto a local high school and conversations with the high school staff (there was no special education in those days), Robby’s treatment team finally gave me the green light, so I enrolled Robby in a general class schedule including physics. He had no aide, no IEP, or any supplementary aids and services.

He was expected to meet class requirements, homework included. Of course, I checked with Robby’s teachers every few days. He did well, mostly because he held in some of his impulses.

We worked on social behaviors and I tried to teach him that not every thought needs to beexpressed. So, he held in those impulses until he returned to the residence where he felt comfortable enough to show symptomatic behaviors associated with his diagnosis. As he recorded multiple successes as a somewhat atypical high school student, the frequency of those behaviors decreased. During school hours Robby presented himself as the good natured, goofy boy that hewas. His peers liked him, probably because he was different in ways that did not scare them. And in hindsight, I believe that his peers watched over him.

One report from Robby’s physics teacher that has stuck in my long-term memory concerned a class discussion of absolute zero. The teacher asked Robby to describe absolute zero. Robby, being Robby, said this “Oh Yeah, that is when it’s cold enough to freeze your buns off” (giggle, giggle). So, that’s it. That is my story about Robby.

.  .  .

Whelan was one of the first persons interviewed by MSLBD’s Janus Oral History Project. His interview was wide-ranging, and he addressed many issues we continue to face today. What follows are a few excerpts from that interview.

Janus: How do you visualize the current state of the field in meeting the needs of students whohave emotional or behavioral disorders?

Whelan: I don’t think we have enough options in the schools. It’s difficult, given the schedules of our counselors and school psychologists to plan individual and group counseling which could address the needs of our children. Our teachers, in many instances, have caseloads that preclude planning group sessions to identify and deal with conflict in positive ways such as Nicholas Long’s work at the Rose School. When coping with adolescents who have severe problems, extra group session help is even more important. Adolescents, even those with severe mental disabilities, are not usually dangerous to others because they tend to leave a stressful conflict situation, unless we corner or otherwise challenge them. Those are not very good tactics because the end result could produce injuries.

But the teachers, from my point of view, feel frustrated that they are not able to provide more therapeutic learning experiences. The mental health centers are overwhelmed with family and individual problems. Juvenile justice centers, while helpful, are confronted with similar problems.

Historically, the children in our society have not been at the top of the agenda to address mental disorders, for whatever reason. Of course, when that happens, that’s disappointing. Prevention, as we know, doesrequire costly resources but over time that investment is recovered several times over. It’s hard to convince people to put that initial expenditure out there. I’m disappointed that we haven’t gone further into early identification and prevention as Eli Bower wanted us to do from the 1950s. It just didn’t happen, much to the disappointment of many in our field.

The other agenda item we’re still struggling with is the meaning of the least restrictive environment (LRE). When I am asked the LRE question, I may reply: “The fact that we might find a child in a general education classroom all day long with a para-educator teaching the child one-to-one is not the LRE in spirit or fact.”

But I am optimistic about the future, and I hope more and more people enter the field. In the 1960’s, when P.L. 88-164 passed, our field grew from infancy through adolescence to the maturity – with warts and other ailments of aging professions – it has today. We had many students enter the field because they were very interested in teaching and a career of service to others.Some came to EBD because they had family members struggling with a mental disorder and they wanted to understand and help them and others.

In terms of teacher education for educators of children with EBD, I know that Kansas has been criticized because it requires a general teacher education license prior to an endorsement to teach children with EBD. In my view, that general background is foundational for the knowledge and skills to be successful in our field. I also believe that a broad liberal arts education is extremely important for success in our field because it gives us an interdisciplinary perspective so important for life-long learning and doing. When new teachers get several years of experience in a general education setting, they’re going to encounter youngsters with emotional or behavioral disorders, and because of their general education background may adapt their instruction and management plan to meet their needs. On the other hand, the children’s many complex needs may motivate them to enter our field, and that is good news.

My longtime friend and colleague, Pat Gallagher, referred to this phenomenon as “general to specific to general.” This phrase contains few words, but conveys a wise message. It tells us  that it is important to be an effective teacher of general education students before we learn the specific knowledge and skills to understand and teach students with EBD. Only then will we come to know that EBD understandings and effective teaching strategies are equally applicable in the general education setting. Think of the prevention and early intervention strategies that can be used as alternatives to EBD classification and special education placement. If only such a practice were more wide spread!

Janus: What is your advice for practitioners entering the field?

Whelan: There are obviously very resilient teachers just as there are very resilient children. What’s amazing to me is that some children come through aversive experiences and still remain very productive, forgiving, and so on and so forth. As I recall, the one common thing that the resilient youngsters have is a mentor – a significant adult who helps them cope with life’s barriers and hurts; I believe that’s true with teachers too. If teachers go into our field with the right motivation and knowing that it won’t be grand and glorious every day, they will realize there will be times when they are so angry at the children that they can hardly stand it. But, they will also realize that families, parents, and children, are extremely gratefulfor their efforts and show that in many ways. I certainly found it to be worth the effort.

Dick Whelan recognized the necessity of both “knowing and doing.” And, he often observed that children are our best teachers. He said, “They will let you know if you are teaching correctly, and if you truly understand the message in their words and other behaviors.”

Jim Teagarden, Associate Professor, Kansas State University, mrt@ksu.edu

Robert H. Zabel, Professor Emeritus, Kansas State University, robertzabel@gmail.com

Reece Peterson, Professor Emeritus, University of Nebraska, rpeterson1@unl.edu

Endnotes

1 This is based upon a video recording which Whelan completed as a part of MSLBD’s educator stories of most memorable students (https://archive.org/details/RichardWhelan343), and an edited tran- script of a videotaped conversation with Dr. Richard Whelan conduct- ed by MSLBD’s Janus project (https://archive.org/details/RichardWhel- ansThoughts) which later appeared in Intervention in School and Clinic (Kaff, M. S., Teagarden, J., & Zabel, R., 2011, 46(3), 184-189). Portions of this interview are reprinted with permission.

2 “Joey, a Mechanical Boy” was one of several case studies shared by Bruno Bettelheim in the 1950s regarding his work at the Orthogenic School at the University of Chicago. According to Bettelheim, Joey did not communicate directly with others and believed he was a mechanical robot. He drew images of houses, vehicles, and machines and could fall asleep only after connecting himself toimaginary andreal “machines” which he believed sustained him. At that time before autism was recognized as a syndrome, Bettelheim, who was trained in Freudian psychotherapy, considered Joey schizophrenic. Today Joey might be diagnosed as autistic. Many years later, Bettelheim became very controversial for his views regarding the possible causes of autism and other issues. The “Joey the Mechanical Boy” case can be found in Bettelheim, B. (1959). Joey: A “mechanical boy,” Scientific Ameri- can, 200, 116-127. (Republished in Bettelheim, B. (1967). The empty fortress. New York: The Free Press.)

Used with permission of the Midwest Symposium for Leadership in Behavior Disorder mslbd.org and the editors of ReThinking Behavior https://www.pageturnpro.com/Midwest-Symposium-for-Leadership-in-Behavior-Disorders/93369-ReThinking-Behavior-Winter-2020/flex.html#page/1

Top 10 Things to Remember when A Student Engages in Challenging Behavior

It’s the time of the year when anticipation runs high…

Classrooms are dynamic places filled with students and teachers with a variety of preferences, opinions, goals, and expectations for what to do at school and how to interact with each other. Sometimes when the expectations of individuals do not align, or when an individual may not have acquired the skills necessary to meet the class expectations, challenging behavior can occur. 

Challenging behavior is defined as “any repeated pattern of behavior…that interferes with or is at risk of interfering with the child’s optimal learning or engagement in prosocial interactions with peers and adults” (Smith & Fox, 2003, p. 6). 

The identification of challenging behavior is contingent on the perceptions of “expected behavior” by the adult, which can be influenced by individualbiases and beliefs.

Sometimes challenging behavior looks like a student failing to follow a task direction; other times it can appear as unsafe behaviors such as physical aggression or property destruction. The identification of challenging behavior is contingent on the perceptions of “expected behavior” by the adult, which can be influenced by individual biases and beliefs. These individual biases and beliefs can also impact how teachers perceive or identify challenging behavior based on a student’s gender identity, race/ethnicity, language status, sexual orientation, socioeconomic status, or disability status. A teacher’s own preferences can also impact whether or not a behavior is considered challenging such as preferences about student positioning at desks (e.g., standing, sitting, kneeling). While I personally don’t mind if a student is standing, sitting, or kneeling at their desk as long as they stay in their personal space, another teacher may prefer students to stay seated in their chairs.

The topography (form-what it looks like), frequency (how often), and intensity (degree of escalation or likelihood of injury or harm) also define challenging behaviors. For example, a student may rip books (topography) when given a math book to read if it is provided at the introduction of a new math concept. New math concepts are introduced less frequently than a daily activity and ripping books, although likely to become costly for the teacher, is a low intensity behavior that does not result in harm to the student or others. 

Regardless of the topography, frequency, or intensity of challenging behavior, there are a few key things to remember when supporting a student engaging in challenging behavior. 

1. Stay calm; your reactions influence those around you. 

Students will rely on you to stay calm and support them as they (or others in the class) engage in challenging behavior. Staying calm will also support you in keeping a clear head to make decisions in your classroom that support all individuals present in the environment.

2. Define and label the behavior, rather than the child. 

Children and students are humans first, regardless of the behaviors they may present in the classroom. Rather than defining a child or student as aggressive, angry, noncompliant, or lazy, consider only descriptively defining the behaviors you see. For example, you could state a child balls their fists at their sides when asked to share materials with others at the table and screams “I don’t want to” when prompted to provide a material to a peer. Descriptions of what the challenging behavior looks like and the contexts under which it occurs will provide more information for you and your team/caretaker(s) as you plan to support a student. Furthermore, challenging behavior is not part of an individual’s identity, so avoiding describing it as such will support us in remembering students are humans deserving of dignity and respect, regardless of the behaviors they may or may not exhibit at school.

3. We’re not all perfect and making mistakes is a part of life.

We all screw up and make choices or engage in behaviors that others perceive as challenging. Students and children deserve the grace to not be perfect all the time. Teaching students strategies for taking space, de-escalating, recovering, and returning to work or social situations will be critical for their success as humans. Identify when you are feeling frustrated or angry and model those strategies for students, as well as explicitly teaching them, and reinforce and praise students for displaying strategies or recovering after a frustrating event in the classroom. 

4. Everyone’s doing the best they can with what they have. 

If a student is engaging in frequent or intense challenging behavior, remind yourself they’d be displaying different behaviors if they had the skills to use them in that situation. No one wants to be in crisis all day long; empathy and compassion are important things to remember, even when a student is running from work tasks in the classroom. Although these traits won’t end up teaching the student new skills or behaviors to use instead of the challenging behavior, it will help decrease the likelihood of you burning out or responding to the student in an escalated tone of voice or aggressive manner which would likely only make the situation worse. 

If it’s difficult to remember tips 3 and 4, our own personal beliefs or biases may be impacting our assessment of or reactions to a student’s challenging behavior. Teaming and collaboration are excellent ways to assess if our own personal biases or beliefs may be contributing to identifying or supporting a student with challenging behavior so others can evaluate the child’s needs and strengths, classroom environment, and our needs and strengths as a teacher. 

5. Challenging behavior is communication. 

Ask yourself what the student may be communicating—all behavior is communication. Perhaps a student calls a peer names only when a student is asked to share materials during a group activity such as a science experiment. Name calling then results in the student getting to work alone as they are removed from peers. If calling peers names consistently results in the student getting to complete tasks independently, the student may be engaging in the challenging behavior to work alone. Teaching the student to ask to work alone, providing choices (e.g., choosing partners), or providing opportunities to work in groups or alone, may eliminate this challenging behavior. Collecting data on the environmental and situational contexts before and after challenging behavior can provide you further information about what the student may be communicating via challenging behavior. This information can guide you to feasible strategies to decrease the likelihood of challenging behavior and provide the student access to what they were communicating they wanted or preferred in a particular context. 

6. Environmental changes can be easily made.

Sometimes the classroom environment or activity arrangement can be the trigger for challenging behavior to occur. As mentioned previously, collecting data on the contexts and environmental variables under which challenging behavior is likely to occur, as well as the events that occur after challenging behavior, can provide information about easy environmental changes that may decrease the likelihood of challenging behavior and increase the likelihood of prosocial behaviors. Low effort strategies such as providing a student a schedule for the day or a checklist of steps of an activity, or even attending more to prosocial and expected behaviors than challenging behaviors, may be enough to decrease the frequency or intensity of challenging behaviors. 

7. It’s possible the student does not have the skill required to be successful.

It’s a great idea to always explicitly teach (and re-teach) expected behaviors in the classroom rather than assuming all students know what to do during an activity or routine—even if you know you’ve taught the behaviors earlier in the school year. Sometimes students engage in challenging behavior because it’s been the only successful way to interact and gain desired outcomes, or they do not know the expected behaviors.

It’s best to always teach and re-teach the expected behaviors so students gain the skills required to be successful. Then, if the student is not displaying the skill you have data to indicate they have mastered, you can have a conversation about the presence of a performance deficit. If a student has a performance deficit (you have data to support the student has the skill, but they’re just not using it), then strategies from #6 should be implemented.

8. We are experts in teaching—that includes teaching expected behaviors.

We are teachers. We know how to teach social studies or music or reading. We teach expected behaviors the same way: explicitly name them, describe the conditions under which they should occur, model the behavior, provide examples and non-examples, create opportunities for guided practice with explicit feedback and more modeling if needed, and create opportunities for independent practice, with explicit feedback on what’s going well using behavior specific praise and providing redirection or reteaching when necessary. It doesn’t take a special degree or certification to explicitly teach expected behaviors in a classroom. 

9. Students can give us a wealth of information about themselves.

If a student begins engaging in challenging behaviors that are new or there is a sudden sharp contrast in their behavior, talk to the student. Students are humans with lives outside of school that impact their day to day performance just like our lives as teacher humans impact our job performance. If there are unmet needs for the student, partner with school and community staff (e.g., social workers) to support the student and their caretaker(s)/family in meeting those needs. Sometimes it’s this small critical conversation that can help us support and empower a student and their caretaker(s)/family. If you think another adult may be a better choice for that student, then have any trusted adult reach out and check in with the student to better understand the possible reasons why challenging behavior may be occurring. 

Note: if a student reports your lessons or activities are boring, be willing to accept that feedback and solicit ways in which the student may be more engaged. The consumers of our instruction can provide some very meaningful feedback on our performance as teachers, just as we provide feedback to students on their performance in the classroom.  

10. Caretaker(s) and families are valuable stakeholders.

Forming relationships with the caretaker(s)/family members of students are critical to our success as educators. Students spend a large portion of their time with caretaker(s)/family members who are experts on their student. When addressing challenging behavior in the classroom and creating plans to support students, be sure to ALWAYS include caretaker(s)/families as equitable members of the team rather than just individuals who are on the sidelines. Many great ideas and suggestions for supporting students may come from strategies caretaker(s)/families implement at home. Furthermore, partnership with caretaker(s)/families will also create a unified, wrap-around network of support for students to enhance their success in school, community, and home environments.

Remembering these statements may not automatically lead to decreases in challenging behavior is also important. Some students may require individualized supports you can collaboratively create with your school team and caretaker(s)/families. However, it’s important to remember students are growing, changing, learning, and interacting in novel situations on a daily basis. It’s our job to support them and work with their networks of support to ensure they can access all of the engaging instructional activities we provide in today’s innovative and effective classrooms.

Additional freely-accessible resources to support students with challenging behavior can be found at the following research-based websites:

References

Smith, B., & Fox, L. (2003). Systems of service delivery: A synthesis of evidence relevant to young children at risk of or who have challenging behavior. Center for Evidence-based Practice: Young Children with Challenging Behavior. Available: http://www.challengingbehavior.org.

Kathleen Zimmerman is an assistant professor in the department of special education. She is a former public school teacher for elementary students with and at-risk for disabilities in self-contained and inclusive classrooms. Kathleen’s research focuses on the identification of evidence-based instructional practices to improve classroom engagement for students exhibiting challenging behavior in inclusive, general education settings.