My wheelchair is not my identity

I became disabled person when I was 22 years old in a car accident. There was a very marked change in people’s behaviour towards me, and one of the first things that struck me was the charitable attitude of the “non-disabled” people towards persons with disabilities. I can recall clearly one incident that occurred not long after I became disabled that became a turning point in my life.

“While I was in the queue to enter the temple at Haridwar, a poor middle-aged woman from the village walked up to me and handed me a twenty-five paise coin. I was sitting casually dressed in a nice T-shirt and trousers, and I looked up at her confused. Why was she giving me money? My instinctive reaction was to fumble out: ‘No, no! This is not mine.’ I thought that she imagined I had dropped the coin and was returning it. But before other words could come out of my mouth, the woman had left.

For several moments, I just sat there, looking at the coin in my hand and the lady walking away. It took time for my brain to analyse what had just happened. This was something that had never happened to me before, and I had not imagined that it would ever happen—she had thought that I was a beggar! 

The only thing that distinguished me from everyone else there was my using a wheelchair. The woman had thought me a beggar simply because I was disabled! She had assumed that because I was disabled I was needy. I did not know how to react—whether to laugh at her naiveté, or feel sad about what I had been reduced to. With her one little ‘charitable’ act, the woman had managed to make me question my own being.

I laughed off the incident, deciding to keep the coin as a reminder of this bizarre encounter. In reality, however, that was a defining moment of my life. It was a reaffirmation of what I had always been aware and conscious of—that people judged me on my outward appearance alone. No one seemed to have the time or inclination to get to know me as a person, with my own strengths and weaknesses, just like anybody else. Providing me with charity was probably much easier than to try and really understand what I needed.

As I look back today, after two decades, I still see the same charity being distributed in so many different ways to people with disabilities. So much so that most governmental programmes for people with disabilities revolve around concessions and reservations—that is far easier to offer instead of creating a enabling environment and equal opportunities that would allow them to nurture their abilities and become equal members of society.”

(Excerpt from ‘No Looking Back – a true story’ authored by Shivani Gupta Published by Rupa Publications)

Ever since, my struggle has been to dispel this charity. One of the main reasons for this charitable attitude is because disabled people are unable to participate in regular activities such as education, employment, entertainment etc. due to their inaccessibility and very importantly, peoples’ attitudes. These result from lack of various basic aspects such as suitable physical infrastructure, access to information and communication, access to the public transport system and general public awareness. Lack of accessibility results in the denial of basic rights of persons with disabilities.

Driven by the importance of accessibility for persons with disabilities, I enrolled as a full time student for a diploma in architecture technology at the age of 32, and followed it through with a post graduation in Inclusive Environments from the UK. On my return I started AccessAbility (www.AccessAbility.co.in), which provides consultancy to service providers and employers looking at making their service or work place more accessible and welcoming to persons with disabilities. Initially, we had apprehensions if we would get clients who would be willing to pay for our services especially because disabled people are not perceived as patrons by businesses. However, we found takers in businesses who saw value in improving accessibility and some of whom include the ITC Hotels, Indian School of Business, Select Citywalk Mall, UNDP office, Hyderabad Central University, Chennai Mathematical Institute, to name a few.

“It was after understanding the importance of access that I could analyse the horrible experience of visiting the Kanyakumari temple in a different light. A couple of years ago,
I had visited the temple with colleagues from the centre. I wasn’t allowed to enter the temple in my wheelchair as it was considered impure. After a great deal of hesitation, I allowed one of my colleagues to carry me in his arms to have darshan of Goddess Kanyakumari. I didn’t know better, so I agreed to be carried; but it was one of the most humiliating and embarrassing experiences of my life. Everybody ogled at us as my colleague carried me. Another colleague walked along with us, assuring each person who stared that I couldn’t walk. It was quite a long way till the deity, and the only thing I was glad about was that I wasn’t too heavy during those days and that the pandits were ‘considerate’ enough to not make us wait in the queue to get in.

Now, after this training, I could finally appreciate how justified was my anger at the humiliation I had been made to face—simply because of inaccessibility and the insensitive policy that did not allow me in my wheelchair. Anger was something that I had never really felt before when faced with discrimination. I had been humiliated, made to feel sorry for myself and torn to pieces countless times when, because of inaccessibility, I was either excluded from things or I had to take help from someone—but I had never outwardly expressed my anger over this till now. With the knowledge of non-handicapping environments and better understanding of my rights came anger with the system: why could it not provide a simple thing such as an accessible environment to me so that, as a disabled person, my life could be easier?”

(Excerpt from ‘No Looking Back – a true story’ authored by Shivani Gupta Published by Rupa Publications)

 It is unfortunate that people with disabilities get left out, often as a result of poor design or being excluded at the planning stage. Not intentional, one understands but there is little being done to arrest such exclusion. Government policies show apathy towards disability rights. Even after ratifying the Convention on Rights of Persons with Disabilities, the government outlook is pegged on charity and social protection rather the equal rights and opportunities. Building bylaws in all States and Union Territories of our country do not mandate accessibility and building permits are given even if they are inaccessible. We do not have accessibility standards and the government procurement system does not ensure that tender specifications look at accessibility for disabled people.

Disability must be looked at as a developmental issue and must be addressed in all development agendas. For instance all government projects, schemes and plans must address inclusion of persons with disabilities. It is sad that flagship programmes such as Jawaharlal Nehru National Urban Renewal Mission do not mandate accessibility for persons with disabilities, thereby continuing to create barriers for them and preventing their inclusion.

The move towards recognizing disabled people as equal right holders is extremely slow. Often people are uncomfortable interacting with disabled people because of lack of awareness and also because disabled people are often not seen out and about, because of inaccessibility.  From my experience I can say that it is not the impairment that disables us, but the inaccessible environment and strange attitudes and misconceptions that are disabling. There is a long way to go. Persons with disabilities cannot walk the way alone, the government and the society at large must walk hand in hand with them to bring about some meaningful change towards creating a more inclusive environment.

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. 

Bibliography

Condeluci A. (2008). Essence of interdependence: Building communities for everyone. Lash & Associates Publishing/Training Inc.

Mitra, S. (2006). Capability approach and disability. Journal of Disability Policy Studies 16(4): 236 - 247. doi: 10.1177/10442073060160040501

                                                                                    

Nussbaum, M. C. ( 2011). Creating capabilities - The human development approach. USA, The Belknap Press of the Havard University Press.

Sen, A. (2009). The Idea of Justice. USA, The Belknap Press.

                                                            

Trani, J. F., Bahkshi, P., Bellanca, N., Biggeri, M., Marchetta, M. (2011). Disabilities through the capability approach lens: Implications for public policies. ALTER - European Journal of Disability Research. 5(3): 143-157. doi:10.1016/j.alter.2011.04.001

                     

UN (2007). The Convention on the rights of persons with disabilities. New York.  

                                                

UN (2014). Thematic study on the right of persons with disabilities to live independently and be included in the community. OHCHR.A/HRC/28/37.

                                                             

UN (2017). Report of the special rapporteur on the rights of persons with disabilities. OHCHR. A/HRC/34/58.

UN (2017). General comment on article 19: Living independently and being included in the community. CRPD/C/18/1.

            

WHO (2011). World report on disability. Geneva, WHO.

                                                                                   

            

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.

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

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.

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Paperback and e-book is available at Amazon and Flipkart

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

Reference: http://treaties.un.org/Pages/ViewDetails.aspx?mtdsg_no=IV-15&chapter=4&lang=en#EndDec

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.

The Universal Periodic Review and Disability– an Indian experience

Introductions

The Universal Periodic Review (UPR) is a new and unique mechanism of the United Nations, which was created in March 2006.   Currently, no other universal mechanism of this kind exists. The UPR is an automatic process of peer reviews the human rights practices of all 192 UN member states in the world, once every four years. The UPR is a significant innovation as it is is based on equal treatment for all countries. 

                                                                    

The UPR is a State-driven process under the Human Rights Council that provides the opportunity for each State to declare what actions they have taken to improve the human rights situations in their countries and to fulfill their human rights obligations. There are three reports that are prepared and made available on the website of Office of High Commissioner of Human Rights (OHCHR) for each State before the their UPR session namely:

1.    The report prepared and submitted by the State

2.    The Stakeholders report – a compilation of several reports received by the OHCHR from various national NGO’s and the NHRC

3.    A UN report - compiled by the OHCHR based on information contained in the reports of treaty bodies, special procedures, and other relevant official UN documents.

My Experience of engaging in the process

My experience of the UPR began when I attended a meeting organized by the Working Group on Human Rights (WGHR) who were in the process of compiling a stakeholder report and therefore were consulting with different stakeholders. It was my first experience of working with a group that represented stakeholders from varying human rights organisations such as women, children, LGBT, Dalits and many others.

My biggest realization from attending this consultation was that everybody was talking about their issues and in spite of disability being such a cross cutting issue it is alien for everybody. This is to say the women’s organisations are not talking of disabled women, children’s organisations are not talking about disabled children and so on. Therefore we need to be there to represent our issues ourselves. Members of the National Disability Network (NDN) were present in all WGHR consultations yet their final report included nothing on disabled. I believe it was so because it was the first time for all of us and with regular interaction I am sure things would change.

Following this were the regional and national consultations orgaised by the National Human Rights Commission (NHRC) for the preparation of their report. Here again no body understood disability issues and in spite of participation of disabled persons and DPO’s in all consultations their report had negligible mention of disability issues.

The National Disability Network was keen to make a strong presentation on disability and therefore decided to draft our own stakeholders report. With inputs from over 20 national DPO’s the NDN prepared a report focusing on disability issues. It was with great delight that we noticed an inclusion of one recommendation from the NDN report. Though only one recommendation was taken into the main stakeholders report but it represented the recognition of a disability organizations network for the first time.

With the support of the International Disability Alliance, I got an opportunity to meet with persons working on human rights and disability issues as a representative of NDN. I met with five missions in Geneva namely – Denmark, Sweden, Austria, Maldives and Canada. It was in these meeting that I gained clarity of the process and how it works. I also realized that the three reports though important yet had limited function and the actual advocacy began a month before the actual UPR session was to happen. How it works is that the missions in Geneva and elsewhere sends recommendations to their home office, who finalizes them based on diplomatic relations with States being reviewed and the thrust areas of the country preparing recommendation. These recommendations need not always be dependent on the three reports.

India is going to have its second UPR in the 13^th session in May 2012. The country will be reviewed on how it has progressed on recommendations made during the first cycle additionally there will be an opportunity for other States to make new recommendations. Each country’s UPR session is for three hours, which is podcasted live. Every State will have not more than a minute to make their points and therefore the recommendations they make have to be very crisp.

During my meetings, I did get a confirmation from the Austrian and the Maldives missions that they would make recommendations related to disability to India at the upcoming UPR. This would be an achievement from the last UPR where India had zero recommendations pertaining to disability. There is further opportunity for getting more recommendations by meeting various missions in Delhi and presenting our issues to them.

Main leanings from my participating in the UPR process

1.    UPR is a big and the only one of its kind international advocacy opportunity for the disability sector to highlight our issues and make them heard by our government especially in a scenario where the UNCRPD Treaty body would review India several years after our State report is submitted owing to their work backlog. Further the UPR recommendations on disability will be fed into the CRPD treaty body report.

2.    Regular and constant networking with other human rights organisations is crucial for us to ensure integration of our issues and getting more support and partners to have our concerns heard.

3.    Our preparation for the UPR has to begin well in advance by sending in the stakeholders report before the submission deadline and then advocating with various missions at least two weeks before the actual session.

4.    We need to provide specific, crisp and concrete recommendations to the missions that are as cross cutting as possible. Related background material on the recommendations would make acceptance of our recommendation easier and better.

5.    Different missions must be provided with different recommendations, as it would be an opportunity lost if all States make the same recommendation to country being reviewed.

6.    Most importantly it is a process that gives us an opportunity to unite and review our specific matters together. It requires us to recognise each other’s issues and work on them collectively as an individuals voice has no place in the process.