My family’s gift

I have always been very protective and concerned about my younger sister, Sagarika, who was born with an intellectual disability. I feel extremely blessed to have a sister like her.

She is a gift to our family.

But I must be honest that it has not been easy growing up with a sibling with intellectual disabilities in India. Society seeks perfection, and it’s always a challenge facing the judgment of others who are fixed in their mindset about people who are different.

I have witnessed people bullying my sister, and others who have considered her a curse to our family. I felt completely helpless that I could not change their mindsets, or rid them of their prejudice. 

I saw how my parents lost faith in trying to change attitudes and mindsets. Their way of dealing with the issue was to not let my sister engage with the community. They care deeply for my sister, but they felt like investing in her would not bear the same results as it would investing in me and my other siblings. I did not want to criticize them at that point because I knew they were struggling as well. They had spent a lot of effort teaching her basic activities of daily living, that anything beyond that seemed insurmountable. The fact that people with intellectual disabilities can be achievers too, was never considered.  

When my grandmother was alive, she used to do everything for my sister. Sagarika could not even take a bath on her own until the age of 14. As a result of not allowing her to be independent, she became inactive and put on a lot of weight. I worried about whether she would ever be self-sufficient, and how long we would be able to protect her.

That was the time I started to advocate for her to lead her own life, and be independent. We enrolled her in a nearby school, hoping that it would be a turning point in her life. It was the best decision we ever made, as a family.

Within months, we saw positive changes in her development, both physically and intellectually. She became more communicative, and started to enjoy the company of those around her. She made her own friends, and was excited to take part in different activities. Her progress gave my parents hope. 

Months later, I went with Sagarika to visit one of her friends, who also has an intellectual disability, and is an only child. I saw how her parents had little hope for her, which reminded me of my sister years ago. They feared being rejected by society, and kept her confined at home most of the time. I felt so helpless all over again.  

I realized then that we often forget that there are many more among us who genuinely need our support. A parent’s perspective is often different than that of a sibling. They tend to be more traditional in their thinking. Not everyone with intellectual disabilities is fortunate enough to have a sibling stand by them, support them, and if necessary, fight their battles for them.  

A few days later, I visited my sister’s school, and got to see how the staff there involved people with intellectual disabilities in various sports and games to help them get physically fit. That was when I got to know about Special Olympics in India.  

My sister has been involved in bocce, and has since developed a keen interest in games and sports. I decided then that I would serve as a volunteer with Special Olympics, to do more for people with intellectual disabilities. I’ve not looked back since. I have been volunteering for a few years now, helping in sports and health activities both at local and district level.

I have since noticed a big change in my sister, in terms of physical fitness, her level of confidence, and her willingness to participate in various activities. I see how happy she is when she takes part in Special Olympics sports activities. I’m grateful that the organization provides people with intellectual disabilities the platform and opportunity to compete and play together with other athletes, both with and without intellectual disabilities. It is so important that people with intellectual disabilities be given the right opportunities to engage with the larger community, to show the world that they are capable of so much more. This will help change mindsets, and allow them to be uplifted, accepted and respected.