Sunday, November 11, 2018

Support services for persons with disabilities in low and middle income countries

Having adequate and appropriate support in the community is important for neutralising isolation faced by persons with disabilities and giving them control over their lives. It is a core requirement for the realisation of article 19 of the Convention on the rights of persons with disabilities (CRPD). The CRPD proposes a shift from a medical approach where persons with disabilities are considered passive recipient of care to a more to a rights based approach where support enables persons with disabilities to have control over their life. Implementing these global standards for support provision are not easy to achieve for low and middle income countries. Further, models of service provision that exist in the more developed countries may not be best suited for low and middle income countries for several reasons including social and cultural differences in the way individuals, families and communities function. For instance, persons with disabilities in rural India did not feel the need for a personal assistant rather felt having external support for their primary caregiver and to assist them to go out of their homes was adequate.

The family mostly looks after persons with disabilities in low and middle income countries. Very often they are not expected to create a separate life away from their family (Oka 1988). This perception may be more true in case of persons disabilities facing additional intersectional challenges such as persons requiring high level of support, socio-economic background of the family, gender, development of the community they are a part of etc. Yet the significance of informal support that persons with disabilities receive from their family cannot be undermined yet studies show that there are adverse social, mental and physical health affects on both the support provider and receiver in the long-term [WHO 2012; 2002; Evercare 2007].  Therefore there is a need to look at culturally appropriate models of support provision for persons with disabilities that are economically viable for governments to implement. 

While there is no data on the number of low and middle income countries that have policies relating to formal support services but one may safely say that they would be very few. Further policy framework of several countries have a paternalistic approach ignoring the right of persons with disabilities to have choice and control in the way they live. Some countries make the families legally responsible to supporting persons with disabilities supporting the informal support system. Some countries offer or are beginning to offer caregivers allowance but that again is favoring the family support because there are no formal support systems available in the market. Not only the governments but also the persons with disabilities do not demand for additional support systems. However the reasons for persons with disabilities not demanding for additional support system may not be rooted in their satisfaction with the present support available but more in the disfranchised they feel within their families and communities. 

Lack of support places persons with disabilities is an isolation trap. They live in a vicious circle that perpetuates their sense of dependency and uselessness. Being dependent on the family made the persons with disabilities feel like a burden denying them autonomy in their daily life. Further not having adequate support also denies them opportunities of social participation and inclusion that isolated them. Their community member have poor perception of them and are rarely involved with their life.  This sense of dependency and social isolation is known to reduce the self-esteem of persons with disabilities and impact their mental well-being. Moreover, government efforts and community based programmes mostly remain largely segregated and do not foster inclusion of persons with disabilities. 

Lack of adequate support can deprive persons with disabilities basic human rights having support on the other hand is key for the inclusion of persons with disabilities. Therefore, low and middle income countries should make big efforts towards create support options apart from just the family to really achieve the aim of inclusion. The responsibility of creating support option cannot be left with the government alone. It has to be shared by all stakeholders such as persons with disabilities, families, community members, NGO’s, the government etc. for the support system to foster inclusion. Efforts need to be made towards increasing self esteem of persons with disabilities so that they see themselves as valuable members of their family and community. Their self awareness may spark the desire for a better life outcome to them. Community members together with family members may be catalyzed to increase the circle of support that persons with disabilities have. This may also work towards communities becoming more aware and responsive towards persons with disabilities. Community based programmes may be relooked at their work to see if they promote self-awareness of persons with disabilities and promote the involvement of the community. The government may look at creating not only a formal support services system but also creates an ecosystem that fosters natural support networks to develop within the community. 

To conclude, there is an urgency to work towards improving the amount and quality of support that is available to persons with disabilities in low and middle-income countries. The support systems developed need to be culturally and economically viable for the countries to implement. Models of personal assistance from the west may not be replicable in these countries. Further research may be undertaken to see how the community can be more involved in the life of persons with disabilities. Models of forming circles of care in the community for supporting persons with disabilities may be investigated deeper to see how they form, function and their impact on the lives of persons with disabilities, their families and on the community members. These may prove to be a viable option for increasing the support options for persons with disabilities and also promote inclusion since a larger number of people would be involved in supporting. 

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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