Posted by Shobha Sachdev, Mumbai
With the COVID-19 pandemic and lockdown, a lot has changed for us – the parents of persons with disabilities. There have been lots of sacrifices, lots of pain and that’s the reality. There is a storm. We all are in the same storm but in different boats. In our boat is our child with disabilities.
The pain, the depression, the isolation I felt when my daughter was diagnosed with Cerebral Palsy (CP) some 35 years ago; the same pain re-crystallised with this lockdown. Again, not only me but my daughter is also undergoing isolation, uncertainties and plenty of challenges.
Pre-COVID-19, my daughter, an entrepreneur was running a beauty salon. She had employed three under-privileged staff. She was busy interacting with her clients, managing staff and earning an income. To achieve this, both, she and me had worked hard for 32 years. She went to ADAPT, where her teachers and therapist put in their expertise and endless efforts towards making her independent.
It was not easy. We had many hurdles – from lack of information to negative attitudes to inaccessible transport. All of which we both overcame, with the support of ADAPT and our family. We succeeded in making my daughter independent.
Even her evenings were busy, when she went to the nearby club for gymming, swimming and socialising. Deepa is a wheelchair user, so this activity was equally important. All this gave me a feeling of utmost satisfaction.
Now, her salon is shut. With her disability, I don’t think, it is wise to re-start anytime soon. There will be lot of social interaction and she has chronic bronchitis. All people with Cerebral Palsy using wheelchair have poor lung functions and are prone to respiratory infections.
We are back from where we started, with uncertainties, isolation and no social security. She seems to have lost everything!
With every passing day, she is getting more bored. Keeping her occupied is becoming a challenge. Initially, she did activities that she enjoyed. But now, she has got tired of those. She wants to go out for a drive and eat outside food.
In these trying times, there has been no institutional or organisational support for counselling or therapy or physical support. Single handedly, I have to attend to all her physical, dietary and therapy needs – which is extremely tiring.
Earlier, I was younger and could do everything effortlessly. But now with me getting older, I too need support. I know depression is contagious. And I don’t want in any way to affect my daughter…
Majboori hai… muskrana padta hai [It is a necessity… I have to smile on]
That’s what I am doing… smiling and carrying on. And hoping for some miracle that can keep Deepa smiling.
Thank you Varsha Hooja for connecting us to Shobha
Featured image : Powai in Mumbai courtesy Times of India
Story images : Author
Video courtesy : Author
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