Keystone Human Services (KHS) is a non-profit organization that is a part of a global movement to provide support and expertise to people with disabilities.
Shabnam Rahman is a rehabilitation psychologist at Crystal Minds, Kolkata and believes in co-creating safe spaces with people to explore preferred identities, possibilities, and hope through meaningful experiences. As an SRV leader she incorporates the ideas of Social Role Valorization into her clinical work. She shares this story with permission from the family.
Many people feel uncomfortable when they meet people who do not communicate in typical ways. Most people have an assumption that those who do not or cannot talk, also do not understand others. Such people are often perceived as unable to communicate. Unconsciously, or consciously, we may overlook the presence of people who communicate differently, causing deep wounds of rejection accompanied by a profound sense of loneliness.
When I first met Shreyan and his family, he was 5 years old. I found him to be a cheerful, curious, and adorable young person. The main concern of the family was that Shreyan was very active, always on the go, and found it difficult to communicate with others. At school, it was difficult for him to keep up with the pace and demands of the learning environment, which expected fast transitions from one activity to another. He did not make friends and was not given the opportunity to participate in school programs. Shreyan’s parents felt uncomfortable when everyone asked, “Why is Shreyan not speaking?” When I enquired about what they hoped for, they said, “We want him to do his own tasks and communicate his needs to others, or else people may think he doesn’t understand things.” As I listened to them it was clear to me that they had identified the importance of personhood and could see how he was being isolated from various activities, and slowly being cast into negative roles like slow learner or school failure, or even burden to his family. I was thrilled to see that the parents had identified his needs, and abilities in positive ways and were looking for ways to put him in a new social role for a meaningful life while exiting a devalued role.
One of the basic premises of Social Role Valorization principles is that if people with disabilities are seen and treated as individuals, they are more likely to experience “good things in life,” such as a sense of belonging, respect, dignity, and opportunity to participate in the community. According to the developer of SRV theory, Dr. Wolfensberger, for any service to be relevant, it must first address the primary needs of the service recipients, through the service content and the process by which the content is conveyed by the service model. Holding on to the principle of Model Coherency, we co-created a safe learning space collaboratively with Shreyan and his parents keeping in mind his abilities, preferences, choices, and needs and also the values of the family. Shreyan guided us to frame some assumptions and made us understand that:
Gradually the parents took forward these beliefs into the community. We continued exploring how we could enable Shreyan to experience the spaces and opportunities which are typically valued in the culture to enjoy a better and meaningful life. Step by step Shreyan was introduced to varied social spaces. Shreyan showed us the road to role avidity, meaning that most people hunger for valued roles, want them in their lives, and Shreyan was no exception. It was a total paradigm shift from what he was unable to do (“not speaking”) to what more we can explore for him (“role hunger”).
Now Shreyan is a 6-year-old independent and curious young person who is a soccer player, an instructor, a friend, a community member, a student who participates in community activities with full dignity and respect. It gives me immense happiness and hope to see when Shreyan opens the door of my workspace with a big smile saying, “Hello aunty! May I come in?” I hope to experience more such “Aha” moments in this journey.