“NDWA has brought a lot of change in my life”

Sobita is a skilled tailor, creating beautiful designs like pashminas and saris in her shop in Godawari, Lalitpur, Nepal. She lives above her shop with her husband and daughter, Sophie. Sobita found Nepal Disabled Women’s Association at a time when she needed support and community.

Becoming a mother 

“Six months after my delivery, the issues began to surface. My daughter had to be admitted in the ICU time and again. She was not as active as other children her age so I took her to various hospitals for check-ups. Other children had started to walk but mine couldn’t. Some of the doctors said she would be okay but it was very difficult to diagnose the disease.  

My friends and family didn’t give me support when I needed it the most. I already had a problem due to my child’s health and in addition to that, people used to belittle me a lot and say it was due to my sin. Later on, they accused me of not taking proper care of her. It was unbearable and of course I was hurt too. Anyone would suffer if your child is talked about like that. 

The context for children with disabilities

It is difficult for children with disabilities, but it is even more so for their parents. Children with disabilities are not treated as human beings, they are not allowed to interact with other children and my daughter has faced this kind of treatment. There is a lot of discrimination. Children will not come to play and my daughter says she does not have any friends.  It is difficult for her and for me also when I have to hear this.  

For women, we work, look after the child and the household. Whether I can or cannot, I have to do it for the family. It is very difficult and there is a pressure but as long as I can work, I can take care of her. But, both my husband and I cannot work at the same time because one of us needs to take care of her. If her care is not good enough, she will become sick and then we will spend more than we are earning on her care.  

My husband’s role in Sophie’s care has a lot of importance because nothing can be done without the support and he helps in the shop also.  People have said, ‘the husband is living off his wife’s earning rather than working himself’.  But we do not care about that and together we do what we can do.   

Support, community and hope

Doctors had told me that there was no cure for Spinal Muscular Atrophy (SMA). Afterwards I heard that such diseases are treated in CP Centre Dhapakhel, so I went there and learnt about the disease. 

Here, I also came to know of Sarita from Nepal Disabled Women’s Association (NDWA). Through NDWA, I became a member of a group for parents of children with disabilities and now I’ve been part of it for two years. 

NDWA have helped a lot.  They have provided a lot for my child – from materials, to care, to calling to ask how she is and checking what we need. They have provided a wheelchair and seed money also. They also give suggestions and tell us if you are in difficulty then go to these organisations. They are like a guide.  

NDWA has brought a lot of change in my life. When people used to say that my daughter was not being cared for, I had fallen into depression listening to all of this. Sometimes, parents themselves may not be accepting of their child’s condition and they do not want to go public at all, but this is necessary. Initially, I was also like that. But now, I am more positive and accepting after being in contact with NDWA, their work really has a lot of importance. 

Sobita has been supported by Nepal Disabled Women’s Association through the Access to Justice Project in partnership with Womankind Worldwide.