My mental health as a woman with progressive Deafblindness in India

My name is Shrutilata Singh. I am a woman with progressive deafblindness. 

Here, the word “progressive” means I am slowly losing both vision and hearing day by day. 

I completed my Bachelor's degree in English and also earned a diploma in Physiotherapy from an association for the blind. I worked as a paediatric physiotherapist for three years, and for the last two-and-a-half years, I have been working with Sense India, advocating for the rights of people with deafblindness in India. 

Although deafblindness has been recognized in the Rights for Persons with Disabilities Act of 2016 due to sustained advocacy by Sense India, there is still very little awareness about it.

Deafblindness is a unique disability in which two vital senses are affected to varying degrees. 

In my case, I was able to hear and see much better in my early days, but I have slowly lost most of my vision and hearing.

My gender, being a girl, adds to my challenges. I live in a developing country where we hear about various crimes committed against women every day. 

In school, due to my hearing impairment, I was unable to socialise and faced a lot of discrimination from my classmates as well as educators. They would make me sit separately from others. 

All these behaviors added to the mental stress that I felt. I felt inferior compared to others. There was no feeling of self-worth as I was made to believe I was different in a negative way and that whatever happened to me was my own fault.

At an age when students enjoy time with school friends, I was depressed, isolated, and left behind. 

I was unsure of what the future held. 

I wasn't learning academics in school, or any social skills. Today, I have come a long way and learned social skills. But the challenges remain the same. 

I attend family functions, get-togethers with friends, and even tours with loved ones, but due to communication issues, I always feel neglected. It is not like they do not talk to me while I am there in the group, but the communication is very limited, and I cannot be a part of every conversation.

People keep telling me I am inspirational as I have achieved a lot despite my challenges. They think I am positive all the time. But they do not know that it takes a lot of effort to keep myself positive. 

Every day, I am reminded of the fact that I have progressive deafblindness, have already lost much of my vision and hearing, and will lose what’s remaining as well. Although I know the importance of preparing myself for the future, I still am unable to accept reality. 

Earlier I found myself in distress when I realised that I could no longer hear my favourite song or read books like before because my eyes got tired. Each time, I’d have to find something else to stay positive. 

Recently, I underwent cochlear implant surgery. I’m now able to enjoy music, interact with people, and talk on the phone. My interaction with my family and close friends has increased. The role of community and technology is very important in bringing these changes for deafblind people. 

As an advocate, I work with groups of deafblind people from all over India. 

Most of them have more or less the same issues. Those with progressive deafblindness find it toughest as their families also need to adjust to the changes and accept them. 

Deafblindness is still largely a neglected impairment even within the disability community.

Many people do not know about dual sensory loss and think that because of this disability we cannot do tasks like other disabled people. We continue to feel like “misfits” within society, even within the disabled community. 

There have been quite a few incidents when I attended gatherings or programs related to disability but ended up feeling lonely as I could not understand what was going on around me, and it is not possible for those who know how to communicate with me to be there with me all the time.

Every now and then, I have to pick myself up and force myself to focus on the positive side. 

Years ago, I did try to end my life by taking pills, but thankfully changed my mind after thinking about my parents. 

Although the feelings remain the same, we just learn to cope better. 

I am glad I have a lot of work to divert my attention from the feelings that threaten to drag me into depression every time. It is a never-ending struggle to fit in with family, friends, and the community. 

Hence, the role of society as a whole is critical in ensuring that we become active participants in it. 

People should be aware of how their behaviour towards us affects our mental health. And good mental health is very important to live a happy life. 

Shrutilata Singh has progressive deafblindness. Since joining Sense International India in April 2020, Shrutilata has been engaging with stakeholders to advocate for Rights of People with Deafblindness in India. She is involved in rights-based advocacy as well as capacity building for family members and fellow young people with deafblindness. 

Shruti has presented papers in national and international conferences as a role model in Deafblindness. She has also participated and contributed as a speaker at (Global Disability Summit) GDS 2022, (United Nations Girls Education Initiative) UNGEI, (United Nations Conference of State Parties) UNCOSP with latest at Civil Society 20 (C20) Summit 2023. She is also an Executive member of Commonwealth Children and Youth with Disability Network (UNGEI Representative). 

Connect with her on LinkedIn.