Glimpse 1: In the Driver’s Seat
Prayatna is a small organization in Pune, Maharashtra, dedicated to supporting adults and children with developmental disability. Founding partners Radiya Gohil and Mridula Das attended the inaugural Social Role Valorization course in 2016 in Delhi, and were struck with the concept of assisting people who have been often over-controlled and over-protected to maximize their personal autonomy and be "in the driver's seat" of their lives.
They thought, talked, discussed with the people they serve, the families they serve, and the staff, and formulated an idea. Prayatna has a vocational training program which was fairly typical across these sorts of programs. The people served in this program are all adults, and they are assigned work tasks such as paper bag-making, masala preparation, and creation of craft items for exhibition. When Radiya and Mridula began to think about how to increase the opportunities for choice and control, they began to question why such tasks were assigned and controlled by the staff, and whether they could change that. After all, decisions made about the tasks people are involved with define how people's time is used, and whether people experience a sense of pride in their work.
As a result of this exploration, the people they serve formed a "Friday Work Meeting," essentially a democratic staff meeting in which the workers themselves negotiated and decided which work would be done by whom. You can imagine the room for real competency enhancement here, as the people served learn to negotiate, advocate for their interests, work together, compromise, and lead. In addition, people gain the benefit of having some control over their next work week, and how they will spend their time. As an added unexpected benefit, they noticed that Fridays had often been a day when people decided to stay home from the program. Once the Friday Work Meeting was in place, people realized that their presence was important on Fridays, and attendance went up. After all, if you weren't at the meeting, you didn't have control of your time and activity for the following week.
This practice is evolving as the role of the workers in managing the meeting continues to increase and the role of staff decreases.
Glimpse 2: Studying the Ordinary
The Ashish Center, under the founder Geeta Mondol and the current Director, Sheila George, has taken the implementation of both person centered practice and Social Role Valorization forward in a steady arc with one strong strategy after another. Over time, we will cover several of these strategies in more detail, but for this Glimpse, we'll look at just one. It should be said that Ashish was an early adopter. Their leader attended the inaugural SRV workshop, senior staff have attended, and families and board members have all been exposed to the ideas.
One of the biggest struggles in looking at implementation of SRV in services that serve only people with disability is realizing that integration and inclusive practice might be a long-term goal, but present structural realities prevent the realization of this goal at this moment in time. Ashish decided that they wanted to make every possible implementation effort they could, while keeping practical limitations in mind. Although Ashish is a school, they realized that, because it is a special school just for people with disability, it has drifted in some practices from what typical schools for typical students might do. This leaves the likelihood high that students will not be prepared for a more inclusive life in the future. They decided they need to study the ordinary, explore how typical schools operate and function, and adopt what they could into their own school. They accomplished this by "twinning" with a nearby school, and asking all the staff from Ashish to spend some time there in observation. They came back loaded with ideas. Some were big ideas – like grouping students by age in class rather than functioning level or type of disability, and renaming classes according to normative standards. Some were small ideas – like decorating the halls with the kinds of learning messages and decor one might see in a school, rather than messages to the staff and messages about disability. They learned about the how much time students spend in their own classrooms vs. out of the classroom, and tried to model that. They noted how the students' time was maximized in learning tasks, and replicated this by reorganizing class activities to reduce waiting time by students.
As an unexpected added bonus, the relationship established between the two schools may lead to options and possibilities for some inclusive practices between the schools. This is an excellent example of using the culturally valued analogue (what happens for typical people in the community) as an anchor point, and making adaptations and modifications from there.
Glimpse 3: The Power of Language
One of the areas in which Social Role Valorization sharpens our eyes is noticing the power that language has to convey negative or positive messages about people. Dr. Raheemuddhin Pk, psychologist and leader at CDMRP within the University of Calicut, attended a four-day intensive SRV workshop and immediately realized that in the many training courses he teaches to professionals, the language was highly medical in nature. He knew the use of such terms might further cause people with disability to be seen as clinical objects, as problems to be treated, and as research subjects rather than full citizens, full human beings, and people who actually represent the breadth of diversity of the human condition. He realized that he could take a first step in implementing aspects of SRV by paying close attention to language and use terms that further citizenship and humanity rather than pathology.
We know that changing language may not be the only answer to changing mindsets and attitudes that hurt and harm not only wounded people with disability but all of us. We do know it’s not a bad start. Tomorrow’s professionals, students, and protégés of Dr. Raheemuddhin will benefit from his efforts to use a language of respect about and toward people with disability.
Glimpse 4: Rethinking the IEP
Sudha Nair, a special educator and passionate activist from Pune, was struck by the potential of Social Role Valorization back in 2018. She recently attended the four-date deep dive at SRV 3.0 and has put her sharp mind to the task of trying to relate Individualized Education Plans (IEPs) to a meaningful planning process for competency enhancement. She first explored the difference between a document intended to be a roadmap to accomplish goals and a living process that frames a roadmap for a person.
She notes that while the IEP may focus on specific learning objectives, it is likely to completely miss the bigger picture of the student moving toward a life of belonging, acceptance, and the best that life has to offer. She discovered that the IEP is often described as a living document, but wisely notes that a process may be alive but a document cannot. How can you breathe life into a document? Her work is deeply tied to figuring this out. How can we uplift such a document to cause good things to come into the life of a student with a disability?
For Sudha, the potent idea of valued roles being incorporated into such planning has become the focus of her planning processes with parents, teachers, and students. She has opened minds to the ideas that a goal might have associated skills, but a person has roles, not just skills. That’s just real life, and this simple but important idea has escaped many of us.
Sudha writes, “When traditional IEPs are formulated, the focus is on deficiencies and how to overcome them. Yes, we call it objectives and skill development. But this perspective actually narrows the scope of our work to activities. A typical specific objective would be: ‘Will count the number of objects (1-10) and indicate the answer by pointing to the corresponding flashcard on command, independently, 4 out of 5 times.’ Once this goal is achieved, we move onto the next. However, if we are using roles-based planning, the starting point would be the person in his or her community. What is the role the person would mostly likely ease into and fill? Just the addition of two words—‘valued roles’—makes all the difference.”
Sudha is working within her own practice to elevate the IEP to be roles-based, so that instead of focusing on the small sub-skills, she helps teachers and parents to identify roles the student might like to fill—like teacher’s helper or even just the basic role of student, which involves such skills as learning to attend the all-school assembly and learning to distribute items to the rest of the class. Once the role begins to be filled, she can see the growth of some very important elements:
- Her teacher’s regard and attention,
- A sense of belonging with her peers,
- Increased meaningful participation and interaction with her peers,
- All of this leading to more shared experiences.
However, having valued roles as a default setting gives a clear, defined path from the beginning. No hit or miss. The whole rationale shifts from a deficiency model of a checklist of skills to be achieved to a valued person-centered model of planning. Based on an IEP, goals will definitely be achieved, but belonging, acceptance, and respect may or may not be a happy by-product. A person-centered, roles-based, value-creating program culminates in the good things in life for the people we serve. We are appreciative of Sudha’s role-modeling of the “goals to roles” orientation in her work coaching and facilitating students with disability and their families and teachers.
Glimpse 5: A Unique Life to Live
People with disabilities have often been seen and described as “those people” – and segregation and congregation increases the tendency to not only other such people, but to see them as a clump who are much the same as each other. One strategy which is taught within the framework of Social Role Valorization is to individualize services and supports, and that can start with our own mindsets and the mindsets of others (another powerful theme of our teaching).
Autism Society of West Bengal took on this issue of individualization by asking what they can do to assist the staff to see each child they serve as a unique person, different from every other soul, and with unique attributes, potential, characteristics, and even dreams. After all, every time a teacher opens a student file, full of cookie-cutter planning documents and list of deficiencies, they are likely to get reinforced for seeing their students as all the same.
With this view in mind, ASWB initiated an important step of change by making a highly individualized, colorful, image-enhancing, creative one-page profile placed prominently on the cover of each student’s file. Now, no one can open young Asma’s file without seeing her as an interesting, unique, valued person at the very first glance. That’s a great way to start out on the right foot, before her file is even opened. The one-page profiles are full of positive characteristics, interesting facts, and a lovely image of the student. The same one page profile were also introduced in short-term parent-child training courses, where teacher and parent discussed and made the one-page profile together. Families find these to be positive, affirming discussions and the creation of beautiful representative images to be in themselves uplifting, understanding that they will go on to inform other teachers and supporters that this is a child worth knowing. Way to go, ASWB. These simple methods have an impact on mind sets and on how children will be treated.
Glimpse 6: Image Detectives
If you walk into the employment section of Autism Society West Bengal, you won’t hear the workers and trainees referred to as “our children.” You won’t see the walls jam-packed with donation plaques lauding all the generous benefactors, nor see all sorts of autism awareness and diagnostic posters on the walls. These examples are “red lights” that contribute to the people served being seen as forever children, charity burdens, or medical problems which need to be remedied. You will hear families referred to by their proper, respectful names rather than “Tarun’s Mom,” you will see the school section full of the sorts of school-typical décor and positive messages about learning, and the work section with messages you would expect a workplace to have. These are all “green lights” which encourage people to think of those served as full human beings and full fellow citizens.
Image enhancement is one of the vehicles through which one can access valued roles in society, and image can be used to put good things into the minds of people about other people. Autism Society West Bengal (ASWB), an impassioned organization working for change, was captivated by this idea as a result of their training in Social Role Valorization, and immediately set about with a metaphorical magnifying glass to check out the image messages around them.
The imagery that surrounds a person with disability has a huge impact on how others will judge them, and, in turn, the juxtaposition of positive imagery positively affects the judgement people will make. Oftentimes, programs for people with disabilities are simply chock-full of imagery that conveys powerful “silent messages” that aren’t so positive. ASWB decided to tackle this issue by conducting a detailed and intensive search in the physical building where ASWB is located.
They did so with a mind-set of uncovering any images that might reinforce negative roles such as eternal child, societal burden, clinical objects, or sick. Once uncovered, they would work to remove or mitigate the impact of such images. Some of the changes were small, like the notice board, initially used for instructions to teachers, was replaced with age appropriate visuals for the students, much more normative for a school. The ‘donated by’ plaques which reinforce the negative role of burden of charity, were changed to ‘gifted by’ after convincing donors this was more enhancing. A library was started for the students, in line with a resource you would expect a school to have for the students, reinforcing the idea that the students are learners with great potential for increasing their knowledge.
In the past, many of the staff would refer to the adults they worked with as “our kids.” This term was intended to be endearing and affectionate. However, they identified that this very term reinforced the age-degradation that limits expectations that people hold for adults, as well as displaying a sense of ownership that may limit the personal agency. Immersion in SRV study and learning helped the teachers realise that the chronological age needs to be kept in mind whenever they talk to an individual regardless of the severity of disability, and that interaction style should match the age and cultural expectations for typical people.
Deciding to take a step-wise approach to SRV implementation, ASWB has taken a good hard look at the image messages in the physical environment. This was an excellent starting place in implementing SRV, impactful, and simply “doable,” even when larger systemic changes seem out of reach at first. The team members at ASWB have transformed into image detectives, and this has made a difference in how the people they serve are seen and treated.