Mr. Keshar Devkota: His is the story of "POSITIVITY"

On a Saturday morning, December the 3^rd, a throng of hundreds of people, including physically as well as mentally challenged people, gathered together at Bhrikutimandap, Kathmandu to participate in a rally advocating for one of the 17 Sustainable Development Goals; i.e. Reduce Inequality by building a more inclusive and equitable world for persons with disabilities. The day was none other than "International Day of People with Disability".

I too participated in the rally in response to the information disseminated to me by Autism Care Nepal; an organization that advocates for the inclusive and equitable society for person with Autism. I arrived there early morning, as the information I received contained the time of commencing the rally was 7 AM. But when I was there, I failed to notice a single person who came there to participate in the rally. Meanwhile I was wandering around the Bhrikutimandap area, observing people from different walks of life gathered together, dancing (exercising) over some old 1980's hindi music, I noticed an old man with 'dhaka topi' carrying his guitar bag walking alone in the middle of the street. This sight was bemusingly pleasant to me and was tempted to go talk to him. The person was none other than Mr. Keshar Devkota.

Mr. Keshar Devkota

 

I went by him to clarify my confusion as to why was he there early morning with his guitar. After a brief conversation, I came to know that he too was there to attend the rally and sing a song for people with disability. I was happy to meet the first person with the same intent. A bit psyco-socially different behavior  was the first impression I got of him. I desired to know more about him, hence I offered him for a glass of tea so I could have some conversation until the other people arrived for the rally.

Mr. Keshar Devkota sipping tea in a local tea shop at Bhrikutimandap

He was 53 years of age. He lost his parents when he was a child. He was then adopted by a doctor who admitted him in a school for his education. The doctor then moved to United States for some reason but continued to fund him for his studies. After finishing his school, he worked for several organizations. Few years later, he was back on the street again. He spent 17 years of his life on the streets of Jawalakhel. My apologies that I couldn't hear the reasons properly as it was difficult for me to comprehend his voice to information. While he was on the road, Mr. Matrika Devkota Ji, the chairperson of KOSHIS; a NGO which advocates for the inclusion of mental health into the primary health care system of the country and for the mainstreaming of psychosocial disability in the disability momentum;  saw him and adopted him as his son. He could not reveal the year of adoption. Mr. Keshar ji is currently enrolled at KOSHIS.

He has been playing guitar ever since he was five years of age.

According to him, he has been playing guitar ever since he was five years of age, and wishes to use his talent to spread awareness about inclusiveness and equality for people with disability. You can listen to his song on Youtube.Through out the conversation we had, I could only perceive "Positivity" being emitted by him. Meanwhile, other people were slowly arriving at the venue to participate in the rally. About an hour later, people started flooding in on buses, cars, bikes, and on foot, and turned the venue into a carnival.

Children with visual disability playing "Dhime" at the event

His was the story of positivity which could influence us all living the life full of complaints and resentments, and motivate us to perceive life as a gift accompanied by success, failures, complaints, complements, ups & downs, thick & thins, but never less of hope & happiness. All other people with disability I met & interacted with, shared the same perspective towards life.

I would like to end this blog with an urge to every neurotypical and normal human being to change the perspective towards differently able people for their betterment. After all, the only privilege they have asked for is to treat them as equals, and accept them for who they are.

Note: The emotions portrayed here in this blog are completely personal.

What after the demise of the parents/caretaker of child with AUTISM ?

Namaskaar,

This is Ramesh Sipahi; a father of a child with autism. I am writing this blog as a way to seek a solution for the alarming question we all (the parents of child/children with autism) have in mind: "What about the life of our child/children with autism after we die?"

Alarming !! Ain't it?

It is good that the organization (ACN) is doing its best to spread awareness and advocating about autism to general public, getting autism registered in the constitution, conducting Parent-Child training to ease the either, & forming a nexus of parents & siblings as a support for each other. But we do realize that this ain't enough.

Well, I have tried to cover some answers to the question with further few questions, which might lead us to the way to solution. i.e Who, Why, How, Where & When. (The suggested solution here has been drafted only after thorough discussion with all of you (the parents) including ACN members. Only the words are mine.)

The prospective solution could be "Autism Friendly Colony": a colony where the families of child/children with autism live together along with a sanctuary/hostel for our children where they will have access to learning life skills, activities of daily life, and education. Keeping our children farther from ourselves is definitely heart wrenching, but it is the part of Tough Love that might enable our children to lead their life independently (by creating a circumstance when we will not be around). Following points have been explained based on this particular solution.

Who: 

Nobody other than us (the parents/caretaker) understand our children better, their requirements, needs, and how they act, as every individual child behave differently and have different needs. Government support and subsidies, as of now, is not available. And even if it does in future, it may only cover till certain level of his/her education including other therapies. Our children still have a life to lead ahead of that.   

Why:

Because our common motive is to establish an environment where our children; even after they grow up to be adults; can pursue a secure and an independent livelihood.

How:

Various ways can be sought to find out the solution to our problem. One way we have been discussing for months, is to establish an "Autism Friendly Community Living": A colony where the families of child/children with autism live together, as they all have a common motive to live for. A colonially secure environment  indemnifies and assures physical security of our children. Besides physical security, we can together workout ways for their intellectual development including therapies and vocational training providing them the motive to live their life. The extent to these programs depends upon the depth of various challenges we come across. 

Where:

It has been quite some time, parents of child/children with autism and ACN have been working together for the relocation of ACN office and establishment of  "Autism Friendly Colony". We had together observed few lands appropriate to meet our requirements, and not exceeding the existing resource constraints. Despite the constraints, we continued looking for land in all directions (East, West, North, & South), but we haven't yet been able to come to a conclusion. The time is fleeting by without us noticing our growing age, our growing children, & hiking price of the land. Now that we have found suitable piece of land, the time has come for both the parents & the organization (ACN) to commit to this.

When:

The right time to execute this concept is now, as we all do realize that only about 10% of the life span of a person constitutes of childhood. The remaining life span is covered by teenage and adulthood where most of the problems seem to appear; which is why ACN has been advocating for an early intervention of treatment and therapies. Moreover, we too are aging by, resulting in the declining exuberance to execute something new. Let us not procrastinate further.

We have noticed that these recurring discussions and meetings have resulted in frustration & mental fatigue to all. Despite these frustrations, we have been working together to make it work. Kudos to all of you. At this point of time, I remember a quote "Rome was not built in a day" ☺

अन्त्यमा सबै अभिभावकहरुको लागी: थाक्नु त मरेरै थाक्नु, मर्ने हैन थाकेर |

Note: This blog post is intended for parents of child with autism and ACN. We are collecting intent of parents who are willing to pursue "Autism Friendly Colony". So, if you are willing to go for it, please fill the form below.

Accronym
ACN: Autism Care Nepal