Head Held High

A blog entry by Ms. Padmatharini

Padmatharini is a Speech Language Pathologist working in Tamil Nadu. She was born with Cerebral Palsy and has overcome a variety of impediments and handicaps to become a respected professional.

I am Padmatharani. I currently work at the district differently abled welfare office in Tanjore. I help children with speech difficulties to speak and communicate.

It's amazing to see a butterfly move from one flower to another. Nobody came to that stage directly. Even in human beings, we start from womb to toddler to human. When a child is born with a disability, parents are filled with sorrow. Because parents have a lot of expectations and are disappointed. When child is born with a disability, family doesn't know what to do and keep running to different doctors. If they find a solution, they don't have the acceptance that their child has a problem. Only when there is acceptance can the parents move further and give appropriate treatment. When child grows, they face even more problems because schooling and education have to be given. Schools are not ready to accept children with disabilities - they say buildings are not accessible, need an extra person to take care of the child. Very few schools accept these children. I had the same problem. My parents had a problem in accepting me. From day 2, my mother noticed that there were problems in my body movements. I was taken to different hospitals, so many medicines - but nothing helped me. The neighbors and relatives keep asking and add to the frustration of the parents. My parents kept saying that I'm a normal child to everyone and that I can do everything. When someone came to my house, I was taken to a different room so that the topic could be avoided. It happened because my parents didn't accept that I have a disability. At age of 2.5 years, neurologist said that I have CP due to lack of oxygen supply to brain during forceps delivery. CP was a new term in 90s. There was no physiotherapist in our city. Doctors prescribed many medicines but nothing helped me. After a lot of searching, we found one physiotherapist who helped me do some passive movements but nothing new happened. At age of 7, I was told to undergo a surgery in Madurai because my limbs were tight and if someone pushed me, I would fall down. I didn't have control while sitting - I needed support. I need chairs with support, not benches. After the surgery, my legs became too loose and there was no strength. It took a long time to gain strength. One physiotherapist helped me so much and because of the exercises she taught me, I gained strength in my legs. My scissor gait got better and I could sit properly. During my school days, I'd sit in a different chair and would be taken to the toilet whenever I requested. During games hour, all children would go to play while I'd sit alone in classroom. I didn't have a wheelchair and someone had to lift me. I was very good at studies, I didn't go to school regularly as my parents focused on getting me to walk with the help of physiotherapist. We used to give excuse letters to the school. At the age of 13, in 8th standard, I was told to undergo another surgery. I dropped out of school and didn't attend 8th and 9th standards. In those years I concentrated on physiotherapy, two sessions per week. Surgery was in Mumbai as Madurai didn't have good facilities. Along with physiotherapy and surgery, I got much better and could walk with a stick. I was very interested in studies, my parents arranged home tuition for me. After that I never thought I would be able to study my 10th standard in a normal school.

 I joined in the middle of tenth standard in Rose Matriculation School which my aunt was running. I studied for four months and scored 65% in tenth standard. I wasn't happy but my parents were very happy. After that my parents had to search intensively for a school - no school admitted me. More than 25 schools turned us down. They refused biology group for my marks. I wanted to do only biology group because I wanted to become a speech therapist. My physiotherapist had told me I was intelligent enough to take this course.

Maharishi Vidyamandir had the group I wanted and supported me a lot. They changed classroom from third floor to ground floor for me. For practical in the second floor, my friends would lift me in a chair. I couldn't hold burettes etc in chemistry labs, but my friends helped. In zoology lab, I had to dissect a frog - difficult because I lack fine motor control. I cried. One of my teachers came to my house with a frog and taught me dissection. That was a great help from my teachers. If I didn't go to school, they'd even postpone tests. I scored 80% in 12th. As per my dream, I went to AIISH Mysore in a car with my parents. They said they could give me admission only if I cleared the entrance exam. I passed. Institute was in a tough situation to decide whether I could be admitted. They didn't have proper infrastructure or environment to support me. Several meetings were held. Then they told me that they'd help me in case of any problems. After I joined, ramps and lifts were set up. Some people would park their vehicles next to the ramp. I could go to director's office without anyone's permission. I complained about the issues with the ramp. She immediately informed the security officers and rectified  it. He also gave me his phone number so that I could  call him whenever required. All friends were very supportive. I had a manual wheelchair and also a caretaker in my room in the hostel. I enjoyed my college life. AIISH moulded me  into what I am today. Schooling was not good for me. AIISH changed my life completely. I enjoyed my life at AIISH. After I did Masters there I got through the entrance. After that I got a powered wheelchair. Before that I used to cry a lot. Before that I had to use a manual wheelchair. My parents were worried about my situation. After I got this motorised wheelchair I could travel everywhere in my campus on my own. To the library, where I was able to search for books. I didn't have any difficulty. After I finished my masters, I immediately got a job in Madhurai. I was not rejected anywhere when I went for a job. After that I completed my masters in AIISH.

 I got a new powered wheelchair. I didn't like the wheelchair.  Earlier – the first time I sat on one, my parents cried a lot. But with the motorised wheelchair, I could be more independent to move around the campus. I could go to the library, to any floor.

I used to wonder when studying whether I'd be accepted as a therapist. But that never happened to me. Everyone accepted me and I was taken as a role model by everyone. I've come to this level. Next my parents’ worry was who would take care of me after their time. This happens to all parents of children with disabilities. I would tell my parents that I've studied and have a degree and I could work and live independently. I never thought I would marry and would be accepted by a person, but I did think that if someone turned up who accepted me, I would marry. With my positive thoughts, I found such a person who came to me through a matrimonial site. I thought he didn't understand my condition and explained to him that I needed help wherever I went. I can manage myself in normal situations but in a different setup I need help. He said he's ok with that and was willing to accept me. I would ask him not to feel bad when all ask and sympathize about me. He said he didn't care about it. People would say - this girl is so beautiful but sad she has this problem. I would not look at them and ignore them. I once cried a lot when someone referred to me as the girl sitting on the wheelchair. Then I became alright. It took a lot of time to get adjusted to it. After a lot of opposition from my husband’s family, we married in 2013. My in-laws had a lot of doubts about how I'd manage household chores. These doubts are natural. My husband said whatever problems may come, he'd face it. My parents had a lot of doubts about him. He said he didn't know, but he liked me. Husband said we'll marry and be role models. I could manage after my marriage and my in laws accepted me. I feel very lucky to have this disability. Despite all the pains in my childhood, I am so happy now. I don't consider it as a disability anymore - I feel very lucky to have this. Because people would say we are unlucky to have this problem - but I don’t feel that now. I got a job in the district differently abled welfare office in Tanjore. We see many PwDs there who come for help. Visually impaired, HI, ID, autism - people with different disabilities. I'm able to help them and I'm happy to work in that environment. Many people come to meet me to get motivation. I feel very happy to be a role model to many people there. I have problems there as well but I've started ignoring them. It wasn't a barrier free environment but it's changing slowly. Even normal people have problems in attending the mobile therapy camps in a jeep. But I go with them to many villages, go to their homes and do therapy. I wouldn't ask for any help. People don't realize that I have a problem. I used to ask for railings in toilets and so on. But no one cared. I arranged a person to fix the railing. Unless the person had a family member with disability or themselves had a problem, they never understood my problem and I couldn't expect them to. Even from my childhood, I wouldn't ask anyone for help. I can manage household activities with my powered wheelchair. Disability is not with me - it's with the people and the environment which is not accessible and with the transportation which is not accessible. I go everywhere, I can do anything I want - with some help. While coming here I had many problems - in railway station there was no battery car. I had to walk a little, wait for the car for some time. In NISH they gave me motorized wheelchair and the building is accessible. I'm comfortable. Most important thing is acceptance, then there are no barriers.