I would like to talk of the intellectually disabled (ID) as I work with these jewels of mankind.
To include is to acknowledge.
What I have painfully seen is so many are not even acknowledged as entities, as whole human beings. I myself have been guilty of this most of my adult life until I started working with them and telling people to acknowledge them. I learnt this from people who work with them in the west, specifically the USA, and in training programs for families of persons with autism.
How we acknowledge any entity is by our identification with that entity. We identify through a common thread. I never acknowledged pet dogs until a friend talked about hers as if he were a human being. I then started to address the dog when I went to her house. As a courtesy and to give her joy, for I loved this friend and she loved Wilbur like she did her children. I even slowly started to scratch Wilbur above his eyes.
This is where things go wrong for persons with ID (I will use the term PWD for person with disability to refer to ID here). Their own family do not treat them like they treat others. As the normal human-human interaction of dialogue and commonality of expressed emotion is lacking, they start to just feed and clothe the person, but from an inability to identify with her/him, do not go much beyond. This sets off a chain reaction. Visitors and relatives do not acknowledge the PWD. They do not greet her/him when they visit. And so it goes on.
Often, the PWD is not invited to their own siblings’ kids’ birthday parties. They have no choices – something as simple as going to the park, which we take for granted is denied them. Neighbours do not step in to interact with them or help walk them to the park.
In one video of a family event, I see my brother Luv, a PWD enter , hand in hand with my father who is smiling and greeting people. The host is glaring at my dad and brother.
One young PWD I met is not taken on drives (which he loves) by his dad who is embarrassed to be seen with him.
Just today a cousin asked if my dad is also joining my mum for an upcoming family wedding. He did not mention Luv who loves parties. Luv sits close to his family , watching people dance and make merry. He mostly smiles, occasionally laughs and likes to pick cold drinks when the waiter passes.
I know young men and women confined to homes, families treating them like a loved pet, clothed and fed, locked in a room when they work, with scant attention paid to their recreation and personal development. They are “the other” for families do not identify with them. Giving them the choice to decide their life course is out of the question.
Our NGO requests parents to choose two weekdays to get the PWD to our sheltered workshop, for a ride through the city, for peer interaction, for recreation without which all souls wilt. Idle parents, some poor, others with chauffeured cars do not want to do this.
Our NGO has outings for our clients and staff members every month which serves the dual purpose of recreation and means to sensitize the community to interact with differently-abled individuals and employ them. These venues include historical places, parks, universities, temples, churches, and gurdwaras, and factories. Sometimes the parents of the clients also join their children for these outings. There is research that demonstrates that when people with IDs participate in leisure activities, it helps develop their confidence, skills, and self-esteem (Patterson & Pegg, 2009). From my experience, these outings have been source of great joy to the clients, staff members, and the parents who accompany them.
Social inclusiveness must start with family attentiveness.
With greater consciousness and self awareness.
About the Author and references
Navneet Bhullar is a doctor who divides time between Jalandhar, India and Philadelphia, USA.
She is the founder of APAAR (Altering Perceptions of Autism and Assisting in Rehabilitation), an NGO in Jalandhar to rehabilitate adults with ID (www.apaar.org) and has worked in other developing countries on medical projects.
References: Ian Patterson & Shane Pegg (2009) Serious leisure and people with intellectual disabilities: benefits and opportunities, Leisure Studies, 28:4, 387-402, DOI: 10.1080/02614360903071688
