Most respected Beroz Vacchha, who I consider a doyen and a mother superior in the field of deafblindness in India, Mr. Miten Shah, Mr. Vinod Gopal, respected Babuji, Yogesh ji, my colleagues, friends from NGOs, parents‟ group, friends from the media, ladies and gentlemen – Good Morning !. Let me first thank Helen Keller Institute for Deafblind for having invited me to speak here today and share some of my thoughts. It is indeed a great honour and privilege given the fact that most of you work directly with the Persons with Disabilities (PwDs) while my work is towards the periphery! The primary goal of any organization, I believe to promote opportunities for women and men to obtain a desired quality of life, in condition of freedom, equality, security and human dignity.
I have been invited here to share some of my thoughts which I have gathered, nurtured and sometimes painstakingly fought with different establishments to see that the agenda of inclusion which has in modern times diversified, also include PwDs. Knowing very well that this institute is of super specialty in nature catering to one of the most challenging impairments within the disability sector, I feel I should not be speaking on the subject specific such as deafblindness because most of you are several times more competent and knowledgeable on this subject, in comparison to my knowledge which is only scratching the surface. I would rather be speaking about the overall issue of disability in India in the general context of health, education, livelihood and social integration through which everyone has to encompass. During this sharing there might be occasions, when I might resort to my personal and emotional experiences and if it sounds unnatural I would say the weakness is mine.
17 years ago, PwD Act was passed by the Parliament of India, whose symbolic shadow we stand today, which was like signing the Emancipation Proclamation for PwDs in India. This momentous decree came as a great beaconing light of hope to millions of PwDs who had been seared in the flames of withering injustice from both society as well as the government. It came as a joyous daybreak to end the long night of their captivity.
But 17 years later, the PwDs in our country are still not free. 17 years later, the life of the PwDs is still sadly crippled by the manacles of segregation and discrimination. 17 years, later, the PwDs lives on a lonely island of poverty in the midst of a vast ocean of material prosperity under the double digit growth and India shining. 17 years later, the PwDs are still languished in the corners of our society and finds themselves an exile in their own land. Otherwise in a civilized society, Jeeja Ghosh would not have been offloaded from the plane by the captain of Spice jet just because she has a disability. What a shame ….!
In terms of development and resources, India has many problems, even when compared with other developing countries. It ranks 132nd out of 179 countries1 on the UNDP Human Development Index. For disabled people and their families, the situation is therefore doubly difficult, due to the general problems affecting everyone, and due to the specific aspects of disability and social stigma unique to them.
Studies have shown that a majority of existing Poverty Reduction Strategy (PRS) papers fail to address the needs of people with disabilities, and often relegate disability issues to side programs without considering them within the mainstream strategies targeted at the general population. Additionally there is a significant lack of monitoring and evaluations of benefits and outcomes of PRS for people with disabilities.
Exclusion from mainstream reforms and systems has marginalized people with disabilities for generations, and it is vital that measures aiming to improve well-being and standards of living, reducing poverty, and increasing means of economic sustenance include them at every stage of the process.
However, it is critical to note that people with disabilities need access to all dimensions of poverty reduction mechanisms and infrastructure such as water supply, sanitation, and transportation. Due to the need to consider and include them in general development projects, Inclusive Development is increasingly recognized as a key component of successful and sustainable development.
The social and environmental obstacles that marginalize and impoverish disabled people cannot be dissolved by any one kind of entity or organization, but only through the collaborative efforts of diverse stakeholders of government departments that includes health, education, rural development, urban development, women and child, transportation and housing and public awareness. In India, traditionally disability has been a welfare oriented subject keeping strong association with service delivery and medical oriented model. Sadly, in the new millennium, I still do not see much of a change. Most of the organizations, who are in this field continue to resort to the social welfare, the social justice ministry, who have very little to offer by way of expertise and resources. Not tapping to the resources of other ministries has left them scot free to ignore the subject of disability altogether. Now I would like to briefly touch upon various issues and how each of these can be addressed if we are able to persist on our endeavor of making the machine work.
1. Early Identification
It took an Aamir Khan and a „Taare Zameen Par‟ to focus the attention of the ‘aam admi’ on the plight of children with learning disabilities (LD) in this country. While it is heartening that LD is now getting long overdue attention, it is not the only developmental disability that we need to be concerned about but all other disabilities and impairment as well. Early identification and intervention has assumed importance because several of these conditions are not fully well understood medically. Given this context, currently, early intervention is documented to be the best option in terms of measured long-term benefits. Early intervention has a dual effect – it not only helps the child to develop skills that are expected at his age, but equally importantly prevents the child from developing negative behaviors consequent to the developmental issues faced by him/her.
- A major confounding factor that we face is the issue of multilingualism.
- A second important issue is parental aspirations, rather societal aspirations, regarding educational outcomes. As a society we have increasingly moved away from the broad goals of education as one of maximizing every individual‟s potential.
- As far as CwDs are concerned the larger society not only has a moral obligation but also an economic concern.
- A first step towards enabling them to be self-sufficient is of course to increase awareness not only among educators but in the society as a whole.
- A second step would be to provide adequate training to the Anganwadi Workers, ASHA Workers and the ANM for early identification, providing referral sources for formal evaluation and intervention.
In India, nearly 50 per cent of people with disabilities have never been to school, while only five per cent of children with disabilities regularly attend school. The education scenario for the disabled children reflects a rather grim picture. According to the Sixth All India Educational Survey Report, of the 6461 town and cities in India, only 334 or 5.1 percent of the towns and cities have the facility of special schools catering to serve disabilities.
The broad sense of inclusion is that the education of all children, including those with disabilities, should be under the responsibility of the education ministries of their equivalent, with common rules and procedures. In this model education may take place in a range of settings – such as special schools and centres, special classes in integrated schools or regular classes in mainstream schools – following the principle of “the least restrictive environment”.
- Central and state governments have taken a number of initiatives to improve the enrolment, retention and achievement of children with disabilities. There is a need to establish interlinks and collaborations among various organizations to prevent overlapping, duplication and contradictions in programme implementation.
- Most services for children with disabilities are concentrated in big cities or close to district headquarters. The majority of children with disabilities who live in rural areas do not benefit from these services.
- There is an absence of consistent data on the magnitude, quality and educational status of children with disabilities.
- Different disabilities require different supports. The number of skilled and trained personnel for supporting inclusive practices is not adequate to meet the needs of different types of disability.
- The curriculum lacks the required flexibility to cater to the needs of CwDs.
- Inclusive education seeks to enable schools to serve all children in their communities. In practice, however, it is difficult to ensure the full inclusion of all children with disabilities, even though this is the ultimate goal. Countries vary widely in the numbers of children with disabilities who receive education in either mainstream or segregated settings, and no country has a fully inclusive system. A flexible approach to placement is important: in the United States of America, for example, the system aims to place children in the most integrated setting possible, while providing for more specialized placement where this is considered necessary. Educational needs must be assessed from the perspective of what is best for the individual and the available financial and human resources within the country context. Some disability advocates have made the case that it should be a matter of individual choice whether mainstream or segregated settings meet the needs of the child.
Disability and public health have historically been separated by problems related to focus, definition and misperception. Encouraging trends are, however, emerging in public health that considers the health of people with disabilities as a priority.
Disability is extremely diverse. While some health conditions associated with disability result in poor health and extensive health care needs, others do not. However all people with disabilities have the same general health care needs as everyone else, and therefore need access to mainstream health care services. Article 25 of the UN Convention on the Rights of Persons with Disabilities (CRPD) reinforces the right of persons with disabilities to attain the highest standard of health care, without discrimination.
People with disabilities report seeking more health care than people without disabilities and have greater unmet needs. For example, a recent survey of people with serious mental disorders, showed that between 35% and 50% of people in developed countries, and between 76% and 85% in developing countries, received no treatment in the year prior to the study. Health promotion and prevention activities seldom target people with disabilities.
People with disabilities are particularly vulnerable to deficiencies in health care services. Depending on the group and setting, persons with disabilities may experience greater vulnerability to secondary conditions, co-morbid conditions, age-related conditions, engaging in health risk behaviors and higher rates of premature death.
- Health care professionals attitude
- Accessibility to health center
- Severe communication barriers
- Increased training of public health professionals in disability and health issues
- State Health plan includes a special section specifically addressing the health of PwDs
- Training of ASHA workers and the ANM for early detection and appropriate referral
- Equipping the PHCs with equipment of basic necessity
The goal of decent work is best expressed through the eyes of people. It is about their job and future prospects; about their working conditions; about balancing work and family life. It is about gender equality, equal recognition of the vulnerable groups that includes PwDs and enabling them to make choices and take control of their lives. It is about their personal abilities to compete in the market place, keep up with new technological skills and remain healthy. It is about developing their entrepreneurial skills, about receiving a fair share of the wealth that we have helped to create and not being discriminated against; it is about having a voice in the workplace and in our communities. In the most extreme situations it is about moving from subsistence to existence. For many, it is the primary route out of poverty. For many more, it is about realizing personal aspirations in their daily existence and about solidarity with others. And everywhere, and for everybody, decent work is about security human dignity. Friends, PwDs are looking for decent livelihood and not merely subsistence work.
If people with disabilities and their households are to overcome exclusion, they must have access to work or livelihoods, breaking some of the circular links between disability and poverty. Some employers continue to fear that people with disabilities are unqualified and not productive. But people with disabilities often have appropriate skills, strong loyalty and low rates of absenteeism, and growing numbers of companies find it efficient and profitable to hire people with disabilities.
People with disabilities may need flexibility in the scheduling and other aspects of their work – to give them proper time to prepare for work, to travel to and from work, and to deal with health concerns. Contingent and part-time work arrangements, which often provide flexibility, may therefore be attractive to them. But such jobs may provide lower pay and fewer benefits. Research in the United States of America has shown that 44% of workers with disabilities are in some contingent or part-time employment arrangement, compared with 22% of those without disabilities (48). Health issues were the most important factor explaining the high prevalence of contingent or part-time work.
- Children with disabilities are less likely to attend school, thus experiencing limited opportunities for human capital formation and facing reduced employment opportunities and decreased productivity in adulthood.
- People with disabilities are more likely to be unemployed and generally earn less even when employed. Both employment and income outcomes appear to worsen with the severity of the disability. It is harder for people with disabilities to benefit from development and escape from poverty due to discrimination in employment, limited access to transport, and lack of access to resources to promote self-employment and livelihood activities.
- People with disabilities may have extra costs resulting from disability – such as costs associated with medical care or assistive devices, or the need for personal support and assistance – and thus often require more resources to achieve the same outcomes as non-disabled people. This is what Amartya Sen has called conversion handicap”. Because of higher costs, people with disabilities and their households are likely to be poorer than non-disabled people with similar incomes.
- Households with a disabled member are more likely to experience material hardship – including food insecurity, poor housing, lack of access to safe water and sanitation, and inadequate access to health care.
- Make mainstream vocational guidance, training programmes and employment accessible to people with disabilities.
- Develop services tailored to individual and community needs, rather than services of a “one-size-fits-all” nature.
- Ensure that mainstream social protection programmes include people with disabilities.
- Design safety net interventions to promote labour market inclusion of disabled people by including assistance and support services or covering the additional costs.
- Adjust disability assessment systems so that they assess the positive aspects of functioning (as opposed to disability) with residual use.
- Support community-based rehabilitation, to enhance the development of skills and enable people with disabilities to make a decent living.
- Where the informal economy is predominant, promote micro-enterprises and self employment for PwDs including access to micro-finance.
5. Public Awareness and Attitude
“Many times when I request passers-by to help me cross the road, they do so either by clutching my shirt collar or shirt sleeves. At that moment I feel so inferior and insignificant” ………(Male, visually impaired person, India)
“While travelling by bus I find it difficult to stand for a long time. However, even on repeated requests no one offers his seat.” …………..(Physically disabled person, India)
“I do not climb into six seaters because I am shy that people would come to know that I am deaf” …….(Female, hearing impaired person, India)
“I am scared to sit in the special compartment for the disabled in suburban trains. Many times drunkards and other suspicious characters occupy it. I prefer to travel in the general ladies’ compartment even though it is extremely crowded” ………..(Female, physically disabled, India)
Mutual respect and understanding contribute to an inclusive society. Therefore it is vital to improve public understanding of disability, confront negative perceptions, and represent disability fairly. For example, education authorities should ensure that schools are inclusive and have an ethos of valuing diversity. Employers should be encouraged to accept their responsibilities towards staff with disabilities.
Beliefs and prejudices constitute barriers when health-care workers cannot see past the disability, teachers do not see the value in teaching children with disabilities, employers discriminate against people with disabilities, and family members have low expectations of their relatives with disabilities. Implementation of communication campaigns to increase public knowledge and understanding of disability. The persons with disabilities have been often mocked, teased, dehumanized, feared or rejected, pitied or even left alone.
I am extremely inspired by Sir Martin Luther King, Jr. who in his historic speech had once said and I quote;
I have a dream that one day this nation will rise up and live out the true meaning of its creed: “We hold these truths to be self-evident, that all men are created equal.”
I have a dream that one day on the red hills of Georgia, the sons of former slaves and the sons of former slave owners, will be able to sit down together at the table of brotherhood. and he goes on………
I have a dream that one day every valley shall be exalted, and every hill and mountain shall be made low, the rough places will be made plain, and the crooked places will be made straight; “and the glory of the Lord shall be revealed and all flesh shall see it together.”
Ladies and gentlemen, I have a dream. I have a dream that every person with disability in this country will be emancipated and will live a life of dignity, respect, equality and fulfillment. I am sure, that is what a progressive society is all about and that is what we all are aiming at. Lets live in a progressive society………..Let‟s be that progressive society……!!!
1 Human Development Report 2007, UNDP
Delivered by Mr. Samir Ghosh, Director Shodhana Consultancy, Pune on 25th Feb. 2012 on the occasion of Helen Keller Institute Foundation Day, Mumbai