Many thanks to Arden Duncan Bonokoski and Jen Reiher, STEPS Forward inclusion facilitators, who put in many hours to create this reference handbook for new and current staff. Their passion for ensuring that people with intellectual and developmental disabilities live broader lives, full of the same opportunities afforded the rest of us, pervades the content of this document.
The vision of Inclusive Post Secondary Education would not have been possible without the inspiration, the profound understanding of the historical context of the lives of people with developmental disabilities, the dedication to families, and the mentoring of E. Anne Hughson, Director/Associate Professor Community Rehabilitation and Disability Studies Program, University of Calgary and Bruce Uditsky, CEO Inclusion Alberta.
The purpose of this guide is to provide information for:
Reflecting on the kind of training that is required, and with the insight gained from facilitating inclusion in the post secondary education sector since 2001, it became clear that there exists a gap in our work. We are failing to explain the ‘why’ behind the tools we use to facilitate inclusion. Staff who have an understanding of the ‘why’ have said that they gained it through a combination of experience, personal values, and iterations of conversations about deconstructing the norms and expectations society has for people with intellectual and developmental disabilities.
Irrespective of experience or expertise in the field of disability, the majority of professionals are unable to recognize the stereotypes and segregation that are practiced today and which pervade the support of people with intellectual and developmental disabilities. For many, segregation and congregation is the right thing to do for people because of their disability. We feel that being informed about the history and context that has created this dominant societal view, is a first step in supporting staff in being aware of when they may themselves be unintentionally replicating historical patterns and reinforcing stereotypes.
The following guide borrows from several theories and training methods that have been developed through social movements and social justice training, starting with anti-oppressive practice.
Anti-oppressive training, as well as the other topics covered, help us to think about how the day-to-day pieces of our work connect to the larger picture of changing society to think differently about the meaning of intellectual and developmental disability. We also draw on some facilitation tools from these disciplines that can be directly applied to working with allies and navigating challenges, while pushing the boundaries of inclusion.
As mentioned above, self-awareness and reflective practice are particularly important in work that is countercultural. Embedding reflection into daily practice supports facilitators to think critically and dynamically and safeguards against unconscious beliefs or practices that can impede inclusion.
The guide also introduces theory from the field of disability studies that looks at inclusion and exclusion using a critical lens. This theory articulates a vision for what an inclusive life means and how to support people to make it a reality.
We understand and respect that learning about inclusion is an ongoing process. Staff are not expected, in fact, are actively discouraged from, reading these modules and assuming that they can now tick a box that says they have learned “how to” be a facilitator. This information is intended to provide a foundational critical perspective for staff to build on in their day-to-day practice.
These conversations will be revisited often at regular regional meetings, with families, and with staff; when we learn from each other, our mistakes, and gain insight into the work that still needs to be done to bring communities along to embrace inclusion in natural ways.
In order to facilitate inclusive post-secondary education well, we must be clear about the vision that we are working towards. The realization of this vision will take time, intense learning, and iterations of conversations as we learn the unique ways in which a dynamic inclusive community is supported and the critical decisions that students and families make to stay on an inclusive pathway.
Although we are working in the context of post-secondary education, our true vision is one of life-long inclusion for people with intellectual and developmental disabilities. This means that while we are focusing on campus and employment, we are always thinking about how this connects to the life-long vision of full inclusion. Sometimes, the student's vision for inclusion may not match the family’s vision. This is okay. We recognize that students are the strongest voice for their own inclusion and that if we can support them to be engaged and valued members of the academic and campus communities, they will often be the catalyst for inspiring families to think differently about what happens after university/college is finished. Inclusion facilitators:
The work of inclusion is both complicated (understanding the rhythms and routines of student life) and complex (understanding how negative devaluing beliefs can pull students away from an authentic experience). The work does not have a defined work plan or instruction manual, it is work with real people in the real world. This comes with all kids of opportunities and challenges and when we are honest with ourselves, we actually do not know how to achieve the vision of inclusion all that well. This is where benchmarks come it. The following benchmarks, developed by Inclusion Alberta, are based on over 25 years of grounded experience working within post-secondary contexts. The bench marks help to guide us forward and ensure that we are constantly evolving and ensuring a quality of practice over time. As mentioned, the work is countercultural, so when left unchecked we are vulnerable to slip back into ways of supporting students that reproduce barriers to inclusion.
As an inclusion facilitator, you should refer to these benchmarks often, discuss them with co-workers and find critical friends who can point out your own blind spots.
As outlined earlier, there is no instruction manual for how to achieve the vision of an inclusive life. And so to there is not a "one-size-fits-all" description of what an inclusion facilitator does. The following section outlines some promising practices and competencies that we have identified as common to facilitators who are shifting communities and facilitating authentic opportunities for students. One of the core competencies that fall facilitators must actively cultivate is critical thinking. The video below provides an introduction to what critical thinking is, why it is useful and what it involves to cultivate this important skill.
Wikipedia provides the following definitions of a facilitator:
Adopting the title of facilitator, over support worker or helper, was an intentional decision on the part of the families who founded inclusive post-secondary education in BC. Support worker roles are often linked to disability services and/or defined programs of support, there is nothing inherently wrong with this title, but the reality is that for decades, support workers and disability programs have largely failed to produce positive outcomes for people with disabilities. One of the possible reasons for this failure is that the role of support worker often tends to create a dynamic of power and control over the person receiving support. A new approach was needed and so a new title was adopted.
Facilitation shifts the focus off of the individual and onto the community, which opens up many more possibilities for students and communities to transform to ensure that students with intellectual and developmental disabilities are valued members. Rather than assuming that it is the responsibility of the student to "fit in", the focus of facilitation is on building the capacity of everyone to build reciprocal relationships and natural supports for all members of the community. We are not saying that the students we support will not or should not require any support, but rather that this support can be built into their classrooms, workplaces, and the broader community.
Below you will find examples of how to approach facilitation. The common thread that you should notice through each of the examples is that everything is done in a very intentional way. It is often the case that natural inclusion requires a lot of "unnatural' background work to achieve. This is largely due to the reality that most people have little or no real experience knowing a person with a developmental disability outside of a devalued social role (more on valued social roles to come...).
Facilitators constantly negotiate and renegotiate their understanding of the group, the individual, their own role, and the context, in order to work towards crafting a community where inclusion can happen more naturally and sustainably the next time.
These examples illustrate the facilitation of:
When schedules are chaotic and deadlines are imminent, it can be hard to remember what the important parts of our jobs are. The following diagram provides a helpful framework for considering the different parts that make up an authentic experience.
Because we support students of a college or university, which already works to provide a safe environment for all students, facilitating a safe environment should be the easiest part of this job. On every campus, there exists departments of Student Affairs and Student Services dedicated to student safety and success.
But, work is still needed to facilitate positive relationships between ourselves and campus staff, and between campus staff and the students we support, if they are to access regular campus services and opportunities in a seamless way. This part of the work involves building relationships and finding ways to seek reciprocal ways of contributing to the work of college and university staff. Fostering strong relationships contributes to building campuses that are safe and supportive environments.It is also important to be clear and confident in our communication with families around safety on campus. We need to facilitate opportunities that demonstrate how students are safest when they belong and participate in the community, not when supports prioritize safety at the expense of inclusion.
Psychological and Emotional Safety
The overwhelming majority of 1st-year students we support were segregated in high school. This means that the 1st year can be both scary and an opportunity to let loose as there is less control exerted over the students decisions and how they spend their day. This provides an opportunity for students to take risks and benefit from experiencing authentic consequences for their choices. This can be a stark contrast from the support that tries to prevent and minimize risk. When students have the opportunity to make choices and take risks they begin to build confidence in themselves and learn about what they like and what they are good at.
For students who do not feel safe immediately, or whose experimenting may lead to some unique responses from the community, there may be a short term requirement for extra support. The nature of that support should be as minimal as possible, but not more so; and as invisible as possible. Invisibility is key as it provides the opportunities for the community to problem solve, to sort out their mutual relationships, as well as understand their own roles and responsibilities in creating an inclusive space. Invisibility done well, requires significantly more work and creativity than a hands-on approach, but leads to valued and self sustainable communities in the future.
Program space & furniture
Program space and furniture is provided by the post secondary institution through the shared use of common areas (coffee shops, printers etc) that are available for any other student. On occasion accommodations or supports may be needed to make sure these are accessible e.g. if a student who is blind needs special software to access school computers or a desk may need to be elevated to accommodate a wheelchair. When thinking about accommodations or adaptations to physical environments it is important to consider approaches that are harmonious with the space.
Sometimes professors may need extra information about emergency procedures to know how to include the student. For example, if the student is in a wheel chair and the classroom is not on the ground floor, the Professors need to be aware of emergency evacuation procedures and know where the nearest refuge area is so that student can be safely reached by campus emergency response personnel.
When facilitating a supportive environment we think about how to build a supportive relationship with the student as well as how to support the campus community to create a supportive environment for all students. We can do this by working with all members of the student’s post-secondary community to make sure they feel confident providing a supportive environment (in the classroom, club or workplace).
Note: we would never approach someone and say “As the leader in this space in order to include the student you must provide… [the list below]!" But, we would reflect on each situation to make sure that we think the leaders involved have whatever tools they need to provide what the individual student requires. For example, if a particular student felt more comfortable attending class for the first time if the professor said hello, we would communicate that to the Professor before the first class. If another student has a particular way that they learn best we might support the student to share that as well during the meeting.
We often find ourselves in the role of “cheerleaders” inspiring students when they are afraid to take a leap and try something new. Proactively building inclusive places and finding valued roles for the students is the best way to move away from our central role and empowering the student and members of the club, class, community to feel that they belong to a group with a common identity and have a sense of mutual support in reaching common goals.
Conflict might not just mean direct conflict, but could also include conflict between expectations (either their own or expectations by others). It may also come from a place that is not obvious at first. I.e. A student who is disruptive or confrontational is often one who feels disempowered and does not feel included and valued. Rather than working only on strategies to stop the student from engaging in conflict, the root cause can be addressed by working on creating meaningful roles with community members to build authentic mutually valued relationships.
Historically people with intellectual and developmental disabilities are trapped in an endless lifelong process of having to learn skills before they can engage in life. Our role is to resist the pressure to provide structures skill development. We have ample evidence to support that skills develop naturally when students belong and learn from their peers and through their experiences (just like the rest of us). Our role is to think creatively about how to support the student to get the most out of their classroom and campus experience. Part of that role is to discover the best ways to modify course materials for students so that the student can learn and contribute in the same ways as other students through group projects, engaging in discussions, asking questions.
Skills don't lead to opportunities, opportunities lead to skills!
Fundamentally the critical role of facilitators is to find ways that the learning moments above can become opportunities for relationship building and the exploration of new ideas and communities for the student.
Academic and Term Coherency
The student should be supported to have an academic, campus, and employment experience which is coherent with that of any other student. That is, during the day during the academic term they are engaged academically, socially, recreationally, and in the local culture of the campus. During the summer term, they are supported to find and retain summer employment coherent with what other students are doing this term. Seeking opportunities for them to enroll in practicums related to their studies or internships is another way to support their identity as authentic students.
The role of the Facilitators is to find ways for peers, professors, teaching staff, campus staff, and others to work together in identifying opportunities for the student to become an engaged student with a sense of belonging to their community. Often this means thinking about how a student can have a meaningful role in a group, project, or activity rather than being a passive participant or observer. Examples of this are discussed in the “interaction” section.
This seems like a given for any campus classroom or group activity, but unfortunately, it is not uncommon for others to need mentoring in overcoming their feeling of confusion about how to interact with someone who they may perceive as different. Sometimes others just need a bit of a nudge to remind them that acting in natural ways, as one would with anyone else, is OK. This factor is one of the reasons facilitators give an overview of inclusive post-secondary education to classes at the start of the semester.
It very important for facilitators to seek out opportunities for the student to interact in authentic ways with other members of campus communities.
Lead and mentor
When students have opportunities to be leaders and mentors of others it has huge power to change stereotypes. These opportunities can be few and far between and need to be carefully nurtured and sought out by facilitators.
Be in small groups
Small groups are the places where life-long connections are forged on post-secondary campuses. These come in the form of group projects, study groups, campus clubs, and campus parties.
Recognizing and Reinforcing Adulthood
Students we work for are adults and are peers with the other adult students. While this seems obvious, far too frequently adults with intellectual and developmental disabilities are perceived and treated like children. Seeking ways to reinforce their own image as an adult, as well as promoting the recognition by close family, friends, and advocates that their child is now an adult is important to the identity and independence of the student as they transition from their teenage years to adulthood.
This is the most powerful of all opportunities and one we must protect at all times. Students who have experienced exclusion often don't have an expectation of belonging. Authentic experiences, built on interaction & involvement in campus life, create a feeling of belonging and an expectation by others that the student belongs. I.e. if they are part of a group and they do not show up for an event are they missed, does someone from the group text or phone to see what happened? Invite them to the next event? If a peer sees a student being treated unfairly, they might stop up and help the student advocate for themselves.
EngagementInteraction and engagement are closely linked, the more confidence a student gains by having positive, inclusive interactions the more they feel empowered to be engaged. And, the less they feel like engagement is being imposed upon them. The three components of engagement below can only really be achieved once the previous foundational building blocks are established. It is not fair to expect that a student, who feels unsafe and has not had any authentic interactions or engagement, can plan, reflect or make choices in an authentic way.
It is important for facilitators to talk through upcoming events with students and that they learn to anticipate and support things that may disrupt plans.
Helping students to reflect on what is working and not working, and thus become aware and comfortable with of their own strengths and how to work around their weaknesses is a powerful tool for students to begin to advocate for themselves.
Often students come to university or college when they are newly adults, and the idea that they have the ability to make their own choices is new. Allowing students the space to make choices and support them through the consequences is the mark of a well-facilitated situation.
In Conclusion...A good facilitator tries to…
When we are supporting people to assume the role of post-secondary student, which is significantly different than imitating the role, we run up against barriers. These barriers may be practical barriers that are easily navigated, but most of the time there is an element of conscious or unconscious devaluation of the student that produces barriers. It is important to recognize these dynamics when we are standing in opposition to a history of segregation, exclusion, and stereotypes associated with the labels of the people we work for. Through understanding these dynamics we can work strategically to change people's minds and deconstruct stereotypes that limit students.
It is also important for us to understand the history and stereotypes that create devaluing beliefs in order to ensure that the way we are supporting a student is not unknowingly reinforcing a negative societal perception. As we become more experienced navigating and influencing these dynamics it becomes easier to anticipate situations and possible approaches to facilitation. Over time, we can build confidence through the process of continually increasing our understanding of how devaluation is influencing the different situations. Like everything we do, this is a constant process of reflection, and our conclusions will be different for each person and every situation.
Consider this Example:
A student who had graduated spent her summer working for the student union taking tickets at the movie theatre. When she graduated, the employer wished her well but could not hire her back because she was no longer a student, at the time they expressed openness to hiring someone in the future. We were thoughtful about this, and recognized that placing someone with a visible label in the same position might cause that position to be perceived as being "for people like that." Also, the shifts that we could support during the school year were primarily matinees, which were movies targeted to kids, and might reinforce the idea that people with developmental disabilities are inherently more interested in child-like things. We asked the employer if they could provide a reference and connect us to the hiring manager for the coffee shop down the hall about a position for another student instead.
IQ and adaptive functioning assessment tools are the mechanisms used to diagnose intellectual and developmental disabilities, which is a rather ubiquitous term that covers a range of other diagnoses of disability (Eg. Down syndrome, Autism). The field of psychology has a history of pathologizing and medicalizing disability. However, it has been argued that intellectual differences are a naturally occurring phenomenon within humankind. Furthermore, labeling people often sets them up for a life path that underestimates their potential.
The following quote from Tim Weinkauf sums this idea up well.
Below is a first-person perspective about the ways that stereotypes and labeling are acted out in small ways for the daily lives of people with intellectual and developmental disabilities.
Example: Although it can feel weird initially not to disclose someone's label when it will become obvious upon meeting a student, we find that doing so does conjure up a certain set of expectations, and that those expectations are typically low. When we are asked the question "can I ask what their disability is?" we try to answer with what they are really trying to ask: "what do I need to know about this person to include them well?"
Eg. 'He learns best through images, and needs step-by-step instructions for each task. He loves interacting with others, especially when he has something to contribute to what is going on." (Much more helpful than a label!)
Long Ago History:
There is a long recorded history of disability. Throughout time the definition of disability and the roles associated with disability have been fluid. However, the overarching themes that has come to define disability have mostly been object of pity/charity, sick/diseased, menace and other devalued social roles. These assumptions and beliefs about disability have guided the development of such things as freak shows, medicalized treatments and treatment centers, large-scale institutions, and the practice of eugenics. The following excerpt summarized a provincial policy that guided the classification of individuals admitted to the Woodlands School in New Westminster:
"Inmates of The Woodlands School [in Vancouver] were deemed uneducable. The Schools for Mental Defectives Act of 1953 defined three categories of “mentally defective persons” who could be involuntarily admitted to Woodlands: idiots, imbeciles and morons. Though the three categories were defined by levels of capability, all were considered “incapable... of receiving benefit from instruction in schools” (SMD Act 1953, s. 2)."
The stories about institutions from people with disabilities draw a lot of parallels to the stories from indigenous people who lived through Residential schools. However, while society has come to recognize that the segregation of people based on their cultural identity is wrong, there is still an overall misunderstanding in most of Canada that an act of segregation for someone with a disabilities must be either necessary or beneficial.
A more detailed history of disability can be found here.
During the 1950's, parents of children with developmental disabilities and people who had experience institutionalization came together to create the "Community Living Movement" (also known as the "Family Movement") and began to fight for de-institutionalization and access to education in Canada. The shift from institutionalization towards life in community required the establishment of community based supports and the establishment of a funding model for these supports so that people could move out of the dehumanizing conditions in the large scale institutions. The following video is a trailer for a documentary film called the Freedom Tour. The filmmakers follow the work of activists who travelled across Canada to raise awareness about the conditions in institutions and the need to close them down. B.C. is now institution free, but the same is not true in the rest of Canada. The process of deinstitutionalization is occurring in other provinces, but not without much resistance.
The following timeline, taken from Wikipedia, provides an overview of the Family Movement in British Columbia
1952 – Establishment of Vancouver Association for Retarded Children
1955 – Establishment of BC Association for Retarded Children by seven local parent associations
1958 – Canadian Association Retarded Persons founded (now Canadian Association for Community Living – CACL)
1959 - BC School Act Amendment makes it a public responsibility to educate children with developmental disabilities.
1981 – International Year of Disabled Persons
1982 – Stephen Dawson Supreme Court case establishes right of children with disabilities to receive medical care
1984 – Blockade of Tranquille institution
1985 – Closure of Tranquille Institution
1986 – Family Support Institute founded
1988 – First Federal Election recognizing the rights of people with developmental disabilities to vote
1988 – Establishment of BC Self Advocacy Foundation
1992 – Barb Goode first self advocate to address the United Nations General assembly
1993 – new Adult Guardianship legislation
1996 – closure of Glendale Institution
1996 – closure of Woodlands Institution
2000 – establishment of Representation Agreement Act – first statute in the world to accept caring trusting relationships as a criterion for determining legal capability
2001 – founding of STEPS Forward Inclusive Post-Secondary Education Society!
2004 – Establishment of CLBC – Crown Corporation
At this link you will find a timeline of Inclusive Post-Secondary Education in BC:
In our role as inclusion facilitators, we benefit from having an "anti-oppressive" perspective. This way of thinking has been beneficial in other social justice work that involves people who are marginalized by society. It works by examining the ways in which the marginalized group or groups someone belongs to impact their experience in society on an individual level, and in complex ways. Sometimes, this can be a difficult topic to explore, either because you have experienced marginalization yourself (and it's triggering), or because you haven't (and there is a certain amount of natural guilt or defensiveness that comes along with that because it feels like you are somehow implicated in causing the oppression of others).
Every student we support has experienced oppression as a person with an intellectual and developmental disability. However, some students may also experience 'intersecting' oppression. For example, a woman with a developmental disability has a higher chance of experiencing sexual abuse (especially because there is legal precedent about the ability of the survivor to articulate their experience in a specific way). An indigenous student would experience marginalization and oppression as a result of disability and as an indigenous person.
The ways that oppression plays out for students can be overt or more subtle, and it takes a lot of intentional thinking and reflection by facilitators who bear witness to this oppression and the ways that it impacts students. We are also susceptible to oppressing students and in fact, are likely to do so because of the nature of our role.
In many ways, the existing policies of not labeling, meeting students where they are at, and setting up opportunities for independence and value in society are already in line with anti-oppressive practice. For the purposes of facilitating inclusion in post-secondary education, this way of thinking is often extremely helpful because it allows us to step back from a particularly tense or intense moment with someone we support and see the bigger context of power and oppression that person is reacting to. We become better able to recognize either that the situation is probably not about us, or not about what just happened. It is triggering memories of other oppression for them.
Sometimes, this practice is also important in order to check our own power in the relationship. This is especially important because people we work for may be vulnerable and marginalized, and have often been trained to be submissive, compliant and have internalized the low expectations society has about their label. It can become way too easy to let what is inconvenient for you drive your motivations for doing something, rather than stepping back and remembering what the person wants and what is inclusive.
What we want to understand is 'who has the power in this moment?' This involves thinking critically about a very small moment or action within the larger context of the marginalization of people with intellectual and developmental disabilities in society. The following questions can help us understand the power dynamics in a given situation:
Students not being held to the same expectations as other students in the classroom
PRACTICING REFLECTIONFacilitating inclusion on campus is dynamic and multifaceted. It is important that we understand campus dynamics generally as well as the values and assumptions around disability that can influence the student experience. Everyone, including ourselves, have values and assumptions around disability that can be conscious or unconscious and that will influence what we think is possible. Practicing reflection helps us navigate student life and create new and exciting opportunities for students to contribute to and benefit from student life in typical ways.
Forrest and Pearpoint have written about three 'themes' that emerge as challenges in our daily practice of facilitating inclusion. These challenges are only overcome through continual self-reflection or 'checking in' to see what is happening for you in that moment. The three challenges are:
Fear is a dominant emotion - and we should recognize it and not be afraid to name it. Fear often emerges as 'is this possible?' It is important to note that we are the ones who are afraid, not the student, and that we are afraid that we might fail. We must try not to let our fears impact a students experience. This can be a hard one to wrestle with when it comes to the perception of our role, and fear that failure in the situation may be construed as our failure for not doing our jobs well. For example, often we will work really hard throughout the semester: check-in with a professor and classmates, set things up as carefully as possible, and then at the end of the semester the professor suggests including the student in their class didn't go well. It is very, very hard having experienced this 'failure', not to take it on as a personal one and/or to get defensive. This is where the support of other staff can be very helpful, we need to accept all feedback and incorporate it into how we work in the future.
The culture of STEPS Forward is one that embraces recognition of our fears and failures. We are supported to be comfortable saying "I made a mistake because I did not consider everything" to name our learning and to move on to trying something else the next time.
Inclusion means giving up control. When the stakes are so high, and we recognize how important it is that we consistently demonstrate the power of inclusion, it can be hard to let go of that control. The first and most important place we must give up control is to the student. They must be the person who is directing their lives. This means being mindful of speaking and making decisions for them, no matter how inconvenient it is to do otherwise, or if we disagree with their choices. We must choose our words carefully, and say "I recognize that this is your choice, however, can I make a suggestion...?"
The second place we have to give up control (which sometimes can be harder) is to the other people in the student's life, some of whom may not have the same strong vision of inclusion as we do. We strive to bring people into the conversation gently and to work in collaboration and conversation to demonstrate the value of an inclusive life for everyone.
"There is no question that inclusion means change. But change is not optional. It is here. Our choices are limited. We can grow with change, or fight a losing battle with the past. Choosing inclusion gives us the opportunity to grow with change. Our motto is: Change is inevitable; growth is optional. We recommend growth." (Forest & Pearpoint).
Social Role Valorization theory began as a way to figure out how to support people on the margins to participate in socially valued activities. The idea is that when people hold valued roles, they are more likely to receive the opportunities that will help them to achieve 'the good life' that goes along with those roles. This philosophy is very deeply embedded in the development of Inclusive Post-Secondary Education.
The theory also recognizes that many of the wounding experiences of exclusion result in behaviours that are frequently interpreted as 'symptoms' of developmental disability. When we are supporting people we often have to stop and recognize that the student is struggling with one of these experiences and sometimes we have to temporarily shift our support in ways that are uncomfortable and inconvenient for us in order to help have experiences that make them feel valued members of the post-secondary community.
Common Wounds of Devalued People
Rejection by family, peers, and groups can stem from the idea that people with intellectual and developmental disabilities should be 'with their own kind.' It can be experienced as physical or social segregation. The outcome of repeated rejection is that students, in turn, may reject society. They may not want to behave in ways that give them a positive self image because they don't see a point in trying to fit in only to be rejected again. They may withdraw, not care about their appearance or hygiene and act in ways that are 'deliberately' rude.
Accorded low social status:
When you notice the patterns of how people with intellectual and developmental disabilities are treated in society, this is pretty obvious. For example: the frequency with which the 'R' word is an acceptable term for insulting something, how frequently people who are labelled in high school are involved in recycling programs (ie picking up the garbage of normal people), the fact that special education classrooms are almost always in the basement, the tone of voice people use when addressing someone with an obvious label. Etc. Students are frequently very attune to these reactions from others and will react back either with anger or by withdrawing.
Physical and social discontinuity:
Because people with intellectual and developmental disabilities are often put into artificially constructed situations (for example volunteer and paid friends, segregated classrooms, specialized recreation activities) they often experience physical and relational discontinuity as their relationships and activities are defined by their roles as service recipients. This can cause strange ways of interacting with others that make people who have been well-included confused or uncomfortable. The most common example of the reaction of students to this experience is by attaching themselves to people in ways that are often perceived as 'clingy.' However, if we step back and recognize students have never had genuine relationships, they also may have an expectation that things must revolve around them, and are unsure of how to negotiate friendships. Usually, our role is about supporting the potential friend to understand this history and feel comfortable about having a natural relationship with a friend including setting boundaries and being authentic about who they are. We can then support the student to learn how to navigate the ups and downs of natural reciprocal friendships.
Through interacting with large, bureaucratic structures, people with intellectual and developmental disabilities often experience a loss of 'positive identity': low self-esteem, little belief in their future and feeling out of control of their own life. Our solution is to support students to adhere to the most typical path possible at University or College, including participating in things based on their interest (e.g. clubs and course unions). We also commonly see this when students perceive their whole identity to being about being a person with a disability. Although being an advocate for people with disabilities is a generally positive role in society, it also negates the idea that they have anything else to offer or be interested in.
People with intellectual and developmental disabilities lose control over their life, even small choices that might seem on the surface to be unimportant become significant. The realization that a student has control over their experience at post-secondary can take a long time to sink in for them. It often looks like students being very submissive ("can I go make a phone call?") ("is it okay if I go to class late?") or power tripping on staff over little things ("I will not do that just because you said so"). Often times this last one is a good moment to check in and ask yourself 'is this really important? why am I trying to control this? did I explain it in a way that this person understands the consequences of not doing this?' and remind yourself - your job is to support the student through the decision process (including the fallout), not to support them to make the "right" decision!
When people are segregated, they are deprived of normal life experiences (like making mistakes, for example). This means means that when they are in the 'real world' they do not have the same context for social expectations. This most commonly becomes obvious students have been segregated into a "special" education classroom in high school. When they join a regular University or College classroom, they are missing all those unwritten rules about how to be a student in a classroom, such as raising your hand or greeting (or not greeting) fellow students.
SRV began as the theory of normalization. The theory assumes that people are more likely to be integrated into community when they are part of the normal rhythms of daily life. These daily routines are not experienced by people who participate in segregated options. These rhythms are flexible and authentic, not part of an attempt to replicate 'real life' in a false way based on labels.
The following examples of normal rhythms focus on life generally, as facilitators we also look at the normal rhythms of campus life for students who are getting the most out of their experience.
We also consider the ways in which the needs of students are met generally and supporting students to take advantage of these generic student services rather than relying entirely on facilitators.
Normal Rhythm of the Day: Anticipate the upcoming events of the day, have a reason to leave the house, have significant parts of the day that are not completely prescribed and monotonous, participate in events [meals, other activities] when it is normal not when it is convenient for staff, have accomplishments to reflect on at the end of the day.
Normal Rhythm of the Week:
live in one place that is different from where you work and hang out during the day, anticipate leisure activities at the weekend, look forward to school or work on Monday
Normal Rhythm of Life:
experience normal rhythms of holidays and seasonal activities, participate in normal markers of growth and change, have a wide range of choices, wishes, and desires that are considered and respected, have normal economic standards, live in a normal house in a normal neighborhood.
Philosophy of Social Role Valorization
There are two main ways to achieve role-valorization for devalued people:
A simple way of thinking about this is "disrupting the self-fulfilling prophecy." These two ideas go together and reinforce each other in ways that are both positive and negative.
For example, people with intellectual and developmental disabilities who are involved in things that devalue their image (participating in socially devalued or childlike activities; dressing in ill-fitting, seriously dated/unflattering or worn clothing; always being seen in a group of people with disabilities or with a support person) are significantly at risk of people having low expectations of their competency ('let me do that for you' 'they could never do that!' etc). The reverse is also true - people who demonstrate low competency will have a devalued image in society.
In contrast, when someone demonstrates a positive social image (independence and confidence, professional and age-appropriate clothing, participating in the mainstream, niche activities) they are more likely to be provided with opportunities to have experiences that expand their competencies. This also means that when someone with an intellectual and developmental disability demonstrates their competency, their social image is seen in a positive way.
SRV has a role in protecting people who are devalued in society from experiencing the harm that is associated with being on the margins. When your life is valued, people are more likely to hear your voice when something is wrong. Others are also more likely to stand up for you, and notice when you are not there.
In order to value people on the margins, non-marginalized people need to feel connected to the marginalized individual and to recognize the similarities between themselves and that person. This is different than the charitable way that we typically see people when they express empathy (pity) by raising money for things that perpetuate their segregation (otherness from themselves). Often we find our role as facilitators is to model for others that we value this person and to help the students we work for demonstrate that they are leading valued lives.
SRV is a powerful paradigm shift for thinking about disability in the world. Most people are not aware that they could think differently about people with intellectual and developmental disabilities; people are embedded within the traditional human service model that says people need to be protected and require something special and different. Many people can be very resistant and feel threatened when you challenge this mindset, even in gentle ways. This is especially important to be aware of we are interacting with service providers who offer segregated, non-coherent services in the community. This may also be (more) true when requesting courses or employment within fields that see themselves as having specialist knowledge about people with labels. We always strive to let the evidence speak for itself, and not argue or defend the value of inclusion. Other strategies for having these tough interactions are discussed in more detail in the facilitation tools section.
SRV is a large theory and requires a significant commitment to study and practice in order to fully master. This page provides a very brief introduction. The following article provides a comprehensive overview of the theory. It is important to include here that the goal of Inclusive Post-secondary Education is not to normalize students but to make their participation in post-secondary education the norm.
Facilitation vs Personal Support
It can be challenging to think about 'our job' vs the job of a traditional role of personal support. The following are some examples of how to distinguish between the two. Because we are supporting individuals we must always think about what works for that person; there are no cut and dried 'we won't do that' or 'we don't do that' (unless the thing we are doing is 'putting them in a special classroom').
Example: A student is putting their hand up frequently in class to ask questions that are not necessarily relevant to the topic.
Example: A student has procrastinated on their assignment. The support recognizes that they will probably not get it done in time.
Throughout facilitating inclusion, we will meet people who are allies, potential allies, and people who see things really, really differently from the way we do. For people who are potential allies or who see things really differently, we recognize that coming to a full understanding of inclusion and all its complexities will take many conversations over time. Sometimes, who is an ally and who is not is surprising, but we have found it beneficial to think about who in the community might be an ally when making requests for employment or support for changes to 'the system.'
Example: When exploring employment for an alumni who wanted to work as an educator, we started by seeking out alternative schools who expressed values of inclusion as a part of their mandate as a school. However, we also started more long-term conversations with members of the public school board who would have the ability to make changes to the hiring practices, or figure out ways around current policy, in order for her to seek employment in the public school system as well, but we recognize that this is a multi-year conversation.
Marsha Forrest, a leader in the Inclusion movement in Canada, suggests there are ten key areas of focus that will help to move our agenda forward. Being able to articulate the importance of some of these will be helpful when you are speaking to various stakeholders about inclusion and they have the moment of recognition that the perspective that we have for inclusion may challenge ways of thinking about disability in society.
10 Key Points of Focus:
This training is intended to provide you with the tools to be a strong facilitator. This means that you feel equipped to…
Be a strong voice for inclusion:
“When people are included, they feel welcome; they feel good; they feel healthy. When people are excluded, they feel ‘bad’. Inclusion is the precondition for learning, happiness – for healthy living. Exclusion is the precondition for misery, loneliness and trouble. …. Belonging is NOT incidental – it is primary to our existence. …. Inclusion is the foundation of the house. It is not a guarantee, but rather a precondition for the growth and development of full and healthy human beings.”
— Jack Pearpoint & Marsha Forrest [What Is Inclusion?]
Not be afraid to admit your fears (and mistakes):
We believe that the Inclusion issue cuts directly to the core of our values and beliefs. Inclusion seems so simple, so full of common sense, and yet it is complex. Inclusion sets off fire works in the souls of those involved. Inclusion challenges our beliefs about humanity and cuts deep into the recesses of our hearts. Inclusion is NOT about placing a child with a disability in a classroom or a school. That is only a tiny piece of the puzzle. Rather, inclusion is about how we deal with diversity, how we deal with difference, how we deal (or avoid) dealing with our mortality.”
— Forrest & Pearpoint [Inclusion — The Bigger Picture!]
Believe inclusion is for everyone:
Inclusion does not mean we are all the same. Inclusion does not mean we all agree. Rather, inclusion celebrates our diversity and differences with respect and gratitude. The greater our diversity, the richer our capacity to create new visions. Inclusion is an antidote to racism and sexism because it welcomes these differences, and celebrates them as capacities rather than deficiencies. Inclusion is a farce when it only means “white, bright and middle class.” Inclusion means all – together – supporting one another. ” — Forrest & Pearpoint [Inclusion -- The Bigger Picture!]
And always keep in mind that ...
Inclusion isn’t a new program or something one “does” to or for someone else. It is a deeply rooted spiritual concept that one lives. It is not a trendy product or fad to be discarded. It is not a new label – “the inclusion kids”. It is not a bandwagon. People are either included or excluded. One cannot be a little bit pregnant or a little bit included (like the myth of “inclusive” recess or lunch). One is either “in” or “out”. One either belongs or doesn’t belong. If we exclude people, we are programing them for the fight of their lives – to get in and to belong.”
— Forrest & Pearpoint [Inclusion — The Bigger Picture!]Shifting DynamicsDave Hingsburger, a blogger on disability in Canada, wrote recently about his profound experience being presented to by people with disabilities in a University classroom rather than having people with disabilities be the subject of the discussion.
And then something amazing happened. Two women with disabilities got up to the front of the room and began to teach university students. Many of the students were in the Graduate Studies program, all of them took notes.
It took a while for what I was seeing with my eyes to be seen by my mind and my heart. Here, in front of me, in a university, two people with disabilities lead the discussion – they weren’t the subject of discussion. Two people with disabilities demonstrated how respectful teaching was done.
I thought about those people who were forced to stand naked in front of a camera, those who suffered the indignity of a pointer pointing at their bodies, those who looked at us beyond the camera with eyes that asked how we could sit and watch their abuse with academic calm. Nothing will ever apologize enough to those men and women. But the moment that two self-advocates got up in a university class to direct learning, to deliver content, to speak as experts, it was clear that something huge had happened.