Sunday, January 22, 2017

Persons with disabilities in Rural India

I met with two young people with disabilities [both SCI] a couple of days back living in the Rural areas of Andhra Pradesh. When I met them I could see how lucky I am not to be born in such a remote area and to poor family.

This young man became disabled when he was 19. He is now 29. All he does all day is to sit outside his house and just see people passing by. That is what he likes to do the best and this is also his main activity. I asked him what his future plans were. He just said "what future plans can I have when I cannot do anything." He is a paraplegic and his hands function well. He is independent in his ADL. He's not educated much just passed sixth class. Before his accident he wanted to be a driver. But now there are no opportunities for him either to improve his skills to do any kind of work. So he just sits there in entire day doing nothing. I asked him if he thought about getting married. He was sure you never want to get married. It was obvious he had no idea about his sexuality..

The other was a lady about 30 years old. She became disabled and she was 12. She will able to walk a bit then. The never went to a doctor when she had an accident. Over time her condition deteriorated because of unstable spine and now she is a tetraplegic. How mother is a daily worker. The mother has to go out every day to earn a living otherwise they would have no food on the plate. So after helping her daughter in her toileting activities in the morning, which she carries her to the fields, and feeding her breakfast she leaves. The mother lives at around eight in the morning and return that about four. During the day this lady does not eat a drink anything. She just sits outside the house seeing people walking by. I asked her if there was a scheme for the government to provide a personal assistant then would she like to go out? Sounding unsure she said "yes why not I'd like to go out". Where would you like to go? I asked. "To the bus stop" she said. I asked if she'd like to go to the temple or to the market or some other place. "No I just like to go to the bus stop". Why would you not like to go further? I asked. "Just going to the bus stop would be enough for me I don't want to trouble anyone any more than that" she said.

Apart from these two I met two of the men with spinal cord injuries. None of them really knew how to manage and to live with SCI. Neither do they have money to go to doctors and get the spine stabilised or to do something about the pain they get that prevents them for sitting longer than half an hour

Such a lack of opportunities and aspirations. Such hopelessness. It is unfair that these people have lives with nothing to look forward to. I don't know what I, we or the government can do. I'm sure there is lots that can be done to improve the situation but not sure what.

I just wanted to share with all of you what I saw. Would be great to have some discussion and ideas.

Wednesday, June 18, 2014

Release of my new book - No Looking Back - a true story

It was recently that my book 'No Looking Back' was published by Rupa Publication was released by Mrs Sharmila Tagore. Release event coverage

(L to R) Shohini Ghosh, Sharmila Tagore, Shivani Gupta

I am sharing the blurb of the book

What would you do when you have lost all hope and tragedy strikes not once but twice? Give up? Shivani Gupta is a living example of how a woman goes on to live and achieve and make the lives of others better. No Looking Back : A True Story is inspiring and of course pricks your heart.
Summary of the Book
Twenty-two-year-old Shivani had thrown a party one evening—and awoken the next morning in hospital, her spine and her dreams shattered by a car crash. 
Paralysed and then wheelchair-bound, it took Shivani years of pain, struggle and determination to regain control of her life and her body; to demand and receive respect from the world; to gain acceptance from within and without; to find love and happiness. 
Then tragedy struck again. As the newly married Shivani drove to Manali with her family, an oil tanker collided head-on with the car; bedridden once again, she watched helplessly as first her father-in-law and then Vikas, her husband, succumbed to their injuries. And, yet, Shivani refused to surrender—she would not let her inability to walk keep her from achieving her ambitions. 
No Looking Back is a deeply moving and inspiring narrative about surviving the challenges of disability in a country that takes little account of the daily difficulties and indignities faced by approximately fifteen per cent of the world’s population, whether in terms of infrastructure, legislation or awareness—a country that appears to believe that disability equals invisibility from the public discourse. Undeterred by the hand fate had dealt her, Shivani Gupta has chosen to champion the cause of the disabled everywhere and is today one of India’s best-known accessibility consultants. Her life is an extraordinary testament to true courage and the indomitability of the human spirit in the face of overwhelming odds.
Paperback and e-book is available at Amazon and Flipkart

Wednesday, February 27, 2013

Mauritius reservations to the CRPD and its impact on rights of persons with disabilities

It was recently I had an opportunity to visit Mauritius and interact with the warm people there. My interaction was mostly with people with disabilities ands their organizations. There struggles and challenges seemed to be the same as ours and their advocacy movement had familiar traits. I for one felt very at home and one with them.

It was during our discussions while preparing a stakeholders report from the Universal Periodic Review of Mauritius did we realise that Mauritius while ratifying the convention had three reservations. The more I think of these reservations the more amazed I get by how the State could ratify on one side and make these reservations they did on the other sides. The reservations seem to go against the principles of the convention. I cannot help but express myself aloud my opinion of these reservations on people with disabilities in Mauritius with a Disclaimer that I am not an expert in human right law and the expression is solely my thoughts.

Reservation 1
At the time when the State signed the convention in 2007 put a reservation on Article 11 Situations of risks and Humanitarian Emergencies. The state said that "The Government of the Republic of Mauritius (…) does not consider itself bound to take measures specified in article 11 unless permitted by domestic legislation expressly providing for the taking of such measures."

What this reservation seems to imply is that the State will not take any measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters unless their domestic law specially suggests that they must provide them protection and safety to persons with disabilities.  So would this on ground mean that at the time of an emergency the State will protect all other people except persons with disabilities?  More over with this reservation there is an implication on Article 9 1(b) that talks about removing barriers to make emergency services accessible.

Reservation 2

For accessibility they say -  “The Republic of Mauritius declares that it shall not for the time being take any of the measures provided for in Articles 9.2 (d) and (e) in view of their heavy financial implication.”

Accessibility for all persons with disabilities is a pre-requisite for their inclusion. Without making provision for accessibility realization of a number of articles in the convention including living independently, education, employment, sports and culture, personal mobility, access to justice etc. is not possible. Accessibility is one of the cross cutting articles and is also one of the general principles; hence a reservation on any aspect of accessibility will effect most other articles.

Article 9 2(d) talks about making public signage available in public places available in braille and in easy to read formats. And article 9 2(e) talks about availability of live assistance and intermediaries such as sign language interpreters, scribes, and readers etc. to make facilities more accessible.

These reservations create discrimination between the disability constituencies as signage in Braille is largely used by blind persons and easy to read formats is most required for persons with intellectual disabilities.  Also while live assistance and intermediaries may required by any person with disabilities, but they are very much required for Deaf persons, blind persons and deafblind persons to enable them to have access to information and be able to communicate effectively.

Reservations to these two articles would have an adverse effect on the implementation of Article 21 of the convention that apart from other things talks about recognition and promotion of sign language and braille to enable all persons with disabilities to have freedom of expression and opinion, and access to information.

Additionally “heavy financial implication” as a reason for these reservations seems unfair considering that article 4.2 of the convention requires the state to a use to maximum of its available resources to progressively achieve full realization of economic social and cultural rights and without accessibility these rights cannot be achieved.  Considering that implementation has to be achieved progressively and not be achieved overnight then why have the reservations at all.

Reservation 3
With regard Education, they have a reservation to Article 24.2 (b), the Republic of Mauritius has a policy of inclusive education which is being implemented incrementally alongside special education.”

In discussion the DPO’s expressed that while education is free for all children but for children with disabilities since they are admitted only to special schools run by NGO’s, they were required to pay some amount towards their education for books, special aids etc. Moreover since few communities have special schools there is an additional transport costs that parents of children with disabilities have to incur. This transport costs are high as the bus company charged for the entire year including the holidays.

Children with disabilities having to pay for what is free for other children is discriminatory. Moreover inclusive education is not being incrementally provided as claimed by the state and how can it be if there is a reservation to Article 9.2(e). For inclusion in schools there is a definite need for live assistance and intermediary services.

Having put a reservation on the article 24.2(4) that says “Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live;” the State seems to have comfortably abstained from its duty to provide inclusive education. Special education is highly prevalent and that too not available in the child’s community. Moreover special education is of poor quality and costs money to children with disabilities. It seems difficult that this situation will change in the near future as by making this reservation the state seems to have boldly stated their plan to continue with special education and discriminatory practices.

The first step towards inclusion must be for the State to not have such reservations. These reservations make their intent clear hence it is important for the DPO’s to advocate and have these reservations taken away thereby, taking a step closer to progressively achieving full inclusion of all persons with disabilities.