How to Truly Meet the Needs of People with Disabilities and Families

By Betsy Neuville, Director of the Keystone Institute India

One of the major themes within my own teaching and workshop content via Social Role Valorization theory and the field of human learning that is so relevant to each of us is the importance of imitation and modeling as “hands down” the most powerful force there is for both teaching and learning.

Like it or not, we model the behavior of those around us, and learn by watching and imitating.

This is one of multitude of compelling reasons why separating and congregating people with similar competency impairments or disabilities usually spells trouble for people. We can argue well using civil and human rights to freedom from segregation, using the image damage that is done when devalued people are gathered together by others, and we can argue well knowing what real danger vulnerable people face once society gathers them all together, apart and away. De-individualization, mistreatment, and brutalization is nearly always the result, despite what are often the best of intentions.

Here, though, I am thinking only about the practical issues of role modeling in my own experience while conducting the first KII  learning event here in India. I had a powerful dose of it this week. A small school and vocational training program located here in New Delhi, agreed to allow Keystone Institute India to “pilot” a brief workshop/event in their program, gathering together over 20 family members of children and young adults with autism. Who better to kick off our work in India than Thomas Neuville and myself, seasoned international educators? I had a game plan, prepared relentlessly, and brought lots of impressive handouts and PowerPoint slides, ready to inform and educate right off the bat. About 45 minutes into the workshop, a courageous mother spoke up loud and clear, and let me know what I was offering was not what she needed. Recommendations were made to change things up, and so that is what we did. Within 5 minutes, paper was on the wall, and we were all engaged in a lively and robust debate about the current realities for people with disability and their families, what our vision was for the future, and what needs to be done to move that vision forward. The ideas and analysis was captured in a visual way, and I was even given a second chance to wind the ideas I had intended to teach into the work, this time with good result.

Lesson, lessons, lessons, and it is I who am learning them.

1. People’s time is precious and it matters.
2. People should be given what they really need, and simply because we have a tool to offer them does not mean it necessarily meets their need.
3. When people show us that what we are giving them is not meeting their needs, we need to bend, change, listen, and do something different.
4. We should speak up and out with courage when we discern our own needs.
5. People need to know others well and listen deeply in order to try to understand what is really needed.

In the space of a short workshop, we have so many learning parallels to how we must think about human needs and the needs of people with disability. Listen, observe, learn, respond. Sometimes sitting at the feet of those with lived experience is the best role modeling we can do. If we just implemented the above 5 notions at the core of human services and programs, that would be a good start to effective and relevant service. All role modeled by one woman who spoke up and spoke out.