THE meaning of abnormal is “different from what is usual”. In the language of mathematics, abnormal is something that falls beyond 2SD (Standard Deviation). By this definition, our special friends are abnormal; they are different. So I say yes, my daughter Aditi is abnormal. She is different from us in more ways than one.
Comprehending differently
Aditi comprehends the world differently. She has a low IQ (Intelligence Quotient) but an amazingly high EQ (Emotional Quotient). She senses the mood of a person with just one look at the body language and face of the person. She does not fall for words; she instinctively knows it when someone is lying. As parents, Neelima and I often had arguments about some issue or the other. We took care to speak in English to ensure that Aditi was not affected. She could not follow a word of what we were saying but instinctively knew who was in the wrong. She would quietly go to that person and say, “Chup, chup! Don’t talk!!” It was shocking how she would catch on.
Aditi functions more from her right brain. She has a photographic memory for faces and places. She would be the first to point out if we took a wrong turn in our thirty-kilometre drive to Marunji. If she has interacted with a person for some time, she will remember him or her even after a decade. She cannot communicate as easily as we do because she has a limited vocabulary and often cannot pronounce the words but she knows how to get her point across when she means to.
Once, when we were returning from a two-day stay at Neelima’s parents’ place, Noopur, Aditi’s sister, was excitedly telling us about how she had enjoyed the stay and how the grandparents had gone out of their way to make our stay enjoyable. I heard Aditi trying to say something. Every time Noopur stopped talking, Aditi said the same thing over and over again. Finally, when we stopped to listen to her, she said again “Shi nahi, shu nahi.” It took us some time to comprehend what she was saying but I burst out laughing when I finally understood.
Aditi was eight years old. Every night, she would soil her clothes and everything had to be put for washing. In the two nights that we spent with her grandparents, Aditi had not soiled the bed. She was so proud of herself. We stopped the car and all of us clapped for her. We gave her a big hug. A tear rolled down my cheek. I felt the pain that she must have felt to wake up every morning and see her mother roll up the bed sheet and put it for washing. That is when we realised the battle that she was fighting. She knew it was wrong but she could not control soiling the bed. Those two days, she managed to get control; this was a big achievement and she wanted to bring it to our notice. She was so happy that she had finally managed to convey what she wanted to say. She deserved the appreciation and applause.
Getting the point across
Gradually, we started respecting her. We waited for her to get her point across in her own way. To our surprise, she often had quite a different perspective of a situation. We also found out that she had an inherent mischievous streak in her. At the same time, if any of us, including her caregiver, was unwell, Aditi would be the first one to sit by our side. She would keep enquiring about the health of the person till she was told that all was fine; she was concerned. She would then actually let out a sigh of relief.
At Navkshitij, our caregivers have many such touching and amusing incidents to share. They have learnt to wait and listen to our special friends. Once, one of our caregiver couples was arguing like normal husbands and wives do. Two of our special friends were watching the scene from a distance. One said to the other, “Thank God we did not get married! See how irritating it is.”
Another day, one of our friends walked up to Neelima and said, “Madam, you must increase my salary. You see, my brother is getting married and we need to build one more room.” Neelima just gave him a hug, and said, “Of course we will.” (We pay them a salary of Rs. 100.)
What inclusivity actually is
Thinking back on such lovely incidents, I started ruminating on what inclusivity would mean to our special friends. Inclusivity does not mean squeezing them, moulding them and dressing them up to fit our definition of normalcy. Inclusivity means expanding our perception of normalcy to include our special friends. It means creating an environment where our special friends sense the freedom to be themselves. Where they do not have to be or do anything different to be treated as normal. Creating a comfort zone in which they can let their hair down and be themselves.
At Navkshitij, they are “normal”
All of us are looking for a place where we can stop pretending to be anything different than what we are. We call this place home; it is our sanctuary, our comfort zone. Can we extend the same courtesy to our special friends? Can we create a sanctuary where they are free to be themselves; secure in the knowledge that here they are safe, accepted and respected as they are? We are reluctant to send them outside for employment. There they have to be constantly on their guard, to look and behave like the others. It puts tremendous stress on them and beats the very idea of inclusivity. At Navkshitij we have tried to create such a home. Here, by sheer numbers, they are part of “normal’.
Read Previous Blogs:
- Impact Analysis
- Understanding Inclusivity
- Self-advocacy
- Navkshitij: An end-to-end solution
- Why Navkshitij
- The Corporate Way
- New Horizons, new challenges
- The ID-Centric Home
- Deep diving into the world of IDs (continued)
- Deep dive into the world of the Intellectually Disabled
- Through the eyes of a parent
- Rehabilitation and Inclusivity: An Introduction
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