Diethono Nakhro’s life changed after an accident in 2006 which rendered her paralysed neck down. Positive, empathetic and relentless, not only did she pick up the pieces after that, she has brought in sweeping changes for the disabled community in Nagaland, advocating for Disabled Rights and also as the State Commissioner for Persons with Disability, a position she does not wear lightly.
The Accident and Thereafter
I’m quite an extrovert and I led a very active lifestyle before my car accident in 2006. When I learnt of my injury and the grim prognosis I was terrified, of course, and I was also angry at what I felt was the unfairness of it all. I was angry at myself, I was angry at God, and I was angry at everyone else and I had a lot of ‘why me’ questions.
This went on for some weeks as I went through the various assessments and treatments and then started my rehabilitation. In the beginning, I was fully paralysed from my neck down and so I had plenty of time lying on the bed with these kinds of thoughts running through my mind. It was scary looking at a very uncertain future. Moreover, I was a single mother with a young son in his teens; this made it all the more frightening.
Then one day something just seemed to click in my mind and a different set of questions started running through my mind. I started asking myself whether this was how I wanted to spend the rest of my life, you know, angry with the world and everyone else and at the same time wallowing in self pity. I always think that it was God nudging me, telling me to snap out of it and get a move on.
Anyway, I started working my way through all these feelings of fear, anger, and self-pity and I began to focus on my new reality and to centre my energy on things I could do, the things I could control. Things had changed and I knew there were many things I was going to have to learn to do differently, but somehow this clear resolve had found root in my mind that I was going to meet the challenges head on and make the best use of it. I didn’t know how things were going to pan out, but I felt I was ready.
When I look back at that time, what I remember most are the people in my life. I would have gotten nowhere without the love and support of my family – I thank the Lord for them every day. My friends and well-wishers – their prayers and encouragement have meant the world to me.
Joining the Disability Rights Advocacy
When I came back home after my rehab in Delhi, I had a lot of plans in my mind and I was kind of ready to kick off this new chapter in my life. Rehab was tough and the physiotherapy can be painful and totally frustrating as well, but I persevered and by that time I had regained some of my movements - I was able to move my arms, my grip had returned and I was able to sit upright and even stand up with some help, kind of beating all odds. Strange as it may sound, I was actually excited at the thought of making a fresh start.
But as time went on, I began to realise that that was easier said than done – not because of lack of determination on my part but because of all negative attitudes towards disability, misconceptions, lack of awareness and hence lack of facilities and so on and so forth. I began to see that people with disabilities were literally invisible, we had no voice, we were excluded and socially isolated and nobody seemed to care. It was like we exist but we did not matter. It was just not right.
I had lived the better part of my life as a non-disabled person and like most people I had very little understanding of disability and disability issues. I am ashamed to remember how uninformed and unaware I was. I began to educate myself, to learn more about disability rights and to connect with other disability rights activists.
I started off using the local print media platform to highlight disability issues and stories and after a few years got fully involved in advocacy and lobbying the government for policy change and implementation of laws.
Changing the mindset of the people towards the disabled community
It is a lot of hard work and can be totally frustrating at times. People have these set ideas and preconceived notions of what a disabled person should be or what he or she can or cannot do. Disabled people are viewed as victims of tragedy, unfortunate beings to be pitied, saved, or fixed. They are mostly perceived as helpless and useless and incapable of being productive members of society.
This mindset is so deeply ingrained in society that it is not easy to change it.
Creating awareness
Society in general views disabled people as ‘unable’ and this mentality is at the root of the exclusion of disabled people. This is why I feel strongly that visibility matters. If there is no visibility, understanding and acceptance cannot even begin.
This has been a sort of personal mission for me. Whether it’s writing and talking about my lived experiences as a person with disability, or being out and about on my wheelchair, all these have been part of my strategy to create more awareness and erasing misconceptions and stereotypes. Visibility can make people rethink assumptions they’d made about what it means to be disabled. My wheelchair, of course, plays a very important role in my campaign.
Secondly, educating the people, especially the youth, is absolutely essential. Often times it is just a matter of people who don’t have a disability or know anyone who is disabled not having any idea what it’s like to live with a disability or the challenges that are encountered on a daily basis. I believe that young people are the creative forces for social change and we need to empower them to drive this change. I’ve carried out disability awareness campaigns in schools and colleges over the years and I hope to be expanding the programme further in the coming months.
Many disabled people themselves are unaware of their own rights, so it is also about raising awareness among the disability community - to empower them with knowledge of their rights and what they can do if these rights are violated and also to promote a mindset shift from one of dependency to self-reliance.
Government help to change policies
That’s one of the positive things happening here.
Nagaland has a very poor track record when it comes to disability and implementation of disability laws. The ugly truth is that all governments over the years totally neglected the disability sector and that’s why we are in the pathetic state we are today. None of the provisions of the old Disability Act of 1995 were ever implemented properly though the Act was in existence for over 20 years.
By the time the new Rights of Persons with Disabilities Act 2016 came into force, our disability movement had grown much stronger with many young disabled people standing up and making their voices heard. We made it clear that we were not going to allow this new Act to end up like the old one.
To the credit of the government of the day, they have been willing to listen and work with us to implement the various provisions of the Act. We do appreciate that things are finally moving, but we’re way behind schedule and there’s much to be done.
Appointment as Disability Commissioner
My appointment, a person with disability, as State Commissioner for Persons with Disability last year was also a huge moment for the disability community of the state.
We had been insisting for a while that the Disability Commissioner must be a person with knowledge of disability issues and preferably a person with disability if possible. This is not meant as a criticism of anyone in particular, but with disability awareness level still so poor in our state, even among officials who are supposed to implement and monitor the laws, professed good intentions were not getting us anywhere and we needed to start taking this office seriously.
I am privileged to have been given this opportunity to set some things right for the disability community in Nagaland. It’s a huge responsibility and I don’t wear it lightly. I’m committed to making sure laws are properly implemented and people with disabilities are given their fair share as equal citizens of the state.
Disability Rehabilitation Areas & Future Plans
We’re only just starting so there’s so much to be done. The priority right now is to ensure that the provisions of the RPwD Act are implemented strictly.
Present conditions are pathetic – there’s no way of sugar-coating it. People with disabilities represent the most excluded and disadvantaged of all groups in Naga society. To sum it up in black and white, they lack access to quality health and rehabilitation services, disability support services, educational services, lack opportunity to livelihood and economic empowerment and they are excluded from participation in society due to environmental as well as attitudinal barriers.
So while we continue to work towards attitude change, it is imperative for the laws to be put in place. As Disability Commissioner, it is my job to make sure that the disability act is being implemented and I do not take this responsibility lightly.
Association with the Nagaland State Disability Forum
Nagaland State Disability Forum (NSDF) is the first Disabled People’s Organisation in Nagaland. It’s a cross disability organisation and it was set up by a group of young disabled people. They’re active and strong and vocal and I’m really proud of them. I’m an Advisor to the group so I kind of act as their mentor and work with them on advocacy and awareness campaigns.
Disability is NOT a dirty word: My view on Euphemisms
There is this misguided idea that one must put a positive spin on disability, that it must be beautified and made more acceptable. Euphemisms like “special needs”, “differently-abled”, “physically/mentally challenged”, “people with determination”, and even ridiculous ones like “diffabled”, “handi-capable”, etc keep showing up, especially among people outside the disability community.
I have one thing to say about this – just say the word! Disability is not a dirty word and being disabled is nothing to be ashamed about nor is it a tragedy.
These euphemisms only reinforce negative understandings of disability by suggesting that the term disability is unacceptable or offensive and therefore should not be used. What this actually does is diminish the experiences of disabled people and further increase stigma against them.
‘I have a disability but my life does not suck’
Whenever I meet anyone, you can be sure that more often than not I’m greeted with words like “Oh so sad, you must be really suffering”, “You poor thing”, or “What a struggle it must be for you”, or something of that sort. Just because my journey is different, I’m considered an object of pity. I know that most people mean well, but it does not make it less annoying to constantly hear people commiserating with your supposedly woeful situation.
I have a disability but my life does not suck and I feel great to be alive. Yes, I certainly have some functional limitations, but I’ve improvised, learned to do things differently and have overcome challenges quite handily, so believe me, my life is not a constant struggle to survive.
What people should know is that just because someone is disabled does not mean he or she is living in a perpetual state of suffering. We have our ups and downs health-wise and mood-wise like everybody else and that’s it, nothing more, nothing less.
Family and my son
I come from a big family of seven siblings and two parents – my parents and two siblings have sadly passed on now. My family is beautiful and I’m so blessed to have them. They have been with me all the way, giving me all the love and support and at the same time having their own strength of mind to give me tough love whenever I need it for me to push the boundaries. I thank God for them everyday - without my family’s unflinching support I would be nowhere, especially given the hostile environment that I have to live and work in.
My son, Khrieto, is my pride and joy. I’m a single mother and it has always been us two from day one, so we’re close and very connected, which really makes me happy. He’s grown up to be a fine man and very happily immersed in his career as a chef. I cannot be prouder of him.
Message to persons with disability
- Be proud of who you are. Embrace your disability. It’s nothing to be ashamed of; it’s part of your identity and makes you who you are.
- Believe in your abilities, focus on what you can do rather than what you can’t – if there’s one thing you can’t do, there are two other things you can do, that has always been my mantra.
- Never let anyone tell you that you can’t do or achieve something, you are capable of so much more than you know.
- Embracing your disability does not mean you have to love your disability all the time or to deny the real difficulties you face. It can be frustrating, annoying and make you angry or even feel defeated at times, especially since the world is built for able-bodied people. It’s okay to feel these things. Having bad days does not make you weak
- You are your own best advocate as you negotiate through life with a disability. Knowledge is power, so educate yourself about your rights and the resources available to you and take charge. Tell your own story and speak out for yourself and for others going through similar situations.
- Connect with other disabled people and peer support groups. The lived experiences of other people with disability can be of immense help, whether in management of your disability, social and emotional support or providing knowledge and practical help. I have found amazing support through my interactions with different groups of disabled people
