I felt guilty

3rd December is celebrated as 'World Disability Day' every year. This year it was on Sunday so our institution celebrated it on 4th December. The awareness rally was to start at 3:30pm. I got a phone call at around 1:00. It was to inform me about their decision to felicitate 4-5 special need persons.  Palak was one amongst them & we were supposed to be there at 4:15pm at the end point of rally. I did not find anything wrong & I took Palak to the venue. The program started as scheduled. Palak was asked to tell a few words & she did that instantaneously. She was felicitated for her studies in regular school, her doing a job in hospital & adventurous activities till date especially 40 kms cycling at a stretch recently done in Italy. Palak gladly accepted the honour & we were back at around 5:30. As it was our OPD time, both of us got engrossed in work. At dinner she asked few questions. "Why people on Podium were repeatedly telling 'viklang-viklang'(disabled)? Why they spoke 'Mandbudhdhi'(mentally retarded)? & For whom they were using those words?" We were numb with shock!

She compelled me to introspect. I started asking myself 'What am I doing? Why am I doing? & At what cost?' The answers of first two questions are simple. I am trying to reach as many people as I can & thereby creating awareness. I am trying to sensitize the society in the best possible way I can. We got tremendous support from my father & so could bring up Palak to our best. We are not very rich kind of people neither my parents. We adopted very simple methods to create an easy learning environment. Palak's howling success is the cogent evidence of how effective our methods are! I want to impart everything, all my positive experiences to the next generation.  I want to standby all the parents the way my father stood beside me.


Now the question that made me feel guilty. Palak asked, "For whom they were using those words?" I had no answer. I asked myself, 'why didn't I think for a while before agreeing for the felicitation?' It is my decision to spread the awareness. It is my decision to talk to people regarding the strengths of children with Down syndrome. I want to be with parents, every time Palak may not. Do I need to showcase Palak? Do I need to validate the methods using Palak's name? Have I ever asked Palak whether she wants to be a party to the cause I am working for? NO.  The guilt of taking her for granted disturbed my sleep.
The next day morning I sat with her & talked a lot about different meets & conferences attended till date. She had no problem attending them but she clearly disliked when treated differently. She clearly disliked when labelled differently. She disliked when parents kept on prompting. She disliked when they were escorted by someone. She disliked when they were compelled to stay in one room & treated like babies.


I felt happy that she could express very well but at the same time was feeling very guilty. I was choked. The stupid me!
I will refrain from doing anything at the cost of Palak's self-respect & self-image. I feel happy that together we could create a true inclusive environment within a spell of 25 long years in a way that Palak could identify when it was not a true inclusive environment.
The purpose of my writing on internet is, many of our children are great achievers. Usually parents do what I did on 4th. Just introspect, take some time and talk to your child/teen/adult with DS. Make sure that you are not puppeteer.
Young parents, please inculcate the habit of 'knowing & doing' in your children so that when needed they can clearly know the purpose & then can decide on their own.




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