The Right to Sight: Distribution and Prevalence of Visual Disability in Indonesia Aris Ananta1 Evi Nurvidya Arifin2 The meaning of “human rights” can be very loose, and often each individual can have his/ her own interpretation of what human rights are. Indeed, human rights cover so many different concepts and issues of human condition. Yet, the basic idea of human rights can be defined as: “…those rights, which are inherent in our culture and without which we cannot live as human being. Human rights and fundamental freedoms allow us to fully develop and use our human qualities, our intelligence, our talents and our conscience and to satisfy our spiritual and other needs. Human rights are based on “mankind’s increasing demand for a life in which the inherent dignity and worth of each human being will receive respect and protection” (United Nations, 1987, p.4) One group of human rights is to guarantee an adequate standard of living to everyone, wherever he or she lives. Everyone “has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services’ (UN, 1948, article 25). This paper narrows the focus to health, particularly with respect visual disability. Visual disability can be an important factor whether the persons can enjoy the today digital world, or perhaps the difficulty is actually an impact of excessive consuming the products in the digital world. Ageing population is another factor leading to the need to give attention to the sensory impairment such as vision. From a policy making perspective, discussed more later in this paper, treating visual disabilities is easier and cheaper than treating other disabilities such as hearing loss and walking difficulty. The paper utilizes the first availability of a data set on disabilities from Indonesian population census 1 This paper aims at providing reference statistics, distribution and prevalence, on visual disability estimated from the Indonesia 2010 Population Census. It takes into account differential by age, sex and place of residence. It also examines the extent Indonesians have the financial ability and accessibility to improve their visual ability; and the laws and their enforcement to help improving the visual ability. The analysis with statistics on visual disability is put in the context of an overall paradigm change, from GDP to capability-oriented ones, and providing human rights. It also utilizes the current availability of statistics on disabilities (including visual disabilities) in 2010 Indonesia population census. It is the first nationwide data gathering information on this type of disability in Indonesia from the population aged 10 years and above. Before analysing the statistics on visual disability, this paper briefly discusses the paradigm change, instead of GDP; disability as an issue of human right, capabilities, and market; ageing process in Indonesia which may raise the number and prevalence of disabilities and policies on vision disability in Indonesia. The analysis on prevalence and distribution of visual disability starts with a discussion on the measurement of the statistics. Instead of GDP GDP-oriented development policies have now been more increasingly questioned, as high economic growth and/ or high per capita income may not necessarily be equated with a broader measurement of welfare such as health, education, freedom to move, freedom from fear, clean environment, and justice. GDP-oriented development policies may result in income and wealth inequality as well as many other types of inequality. In turn, this inequality may result in feeling of injustice among people, especially among those who cannot compete in the market because of limitation in their abilities, including their physical abilities. As argued by Sen (2009), GDP-oriented development, a resource-based approach to development, should be changed into another paradigm, with capability-based approach. Income and wealth are only means of development, rather than ends of development. Sen showed capability as freedom that a person has to do what the person wants, or as the person’s actual ability to do so. The capability-based approach focuses on human lives, and not simply some detached objects such as income and commodity. Therefore, Sen recommended the measurement of capability deprivation, which includes poverty and physical/ mental disability. There have been a large amount of studies 2 on poverty, but not on disability. This can be due to lack of interest on disability and/ or lack of availability of the data. Measuring poverty without taking into consideration the presence of disabled in the poor households can be misleading as the disabled may need more income than the able persons. Yet, as Sen showed, the disabled are the most deprived people in the world. They are often the most neglected. They are often poorer than the poorest as they need more money than the able-body persons. Some may be rich, but their disabilities may bring less freedom to enjoy life. Worse, Sen further indicated that most disabled are in developing countries, and often in the lowest bottom of the poor in terms of income. The relevance of disability in the overall development may have been under-estimated. Fortunately, most disabilities can be avoided, either by preventing or treating the disabilities. Disability is here defined following WHO (2012), that it is a result of interactions between personal factors and conditions of health and environment. It is not simply a biological construct. It is neither merely a social construct. It is a general term, covering three levels. First is impairment in body function or structure. Second is limitation in activity. For example, inability to read or move around. Third is restriction in participation. People can be excluded from school or work. In short, people with disabilities cover those traditionally understood as disabled (such as wheelchair users, blind people, deaf people, and people with intellectual impairments). Globally, visual disabilities (as one type of disabilities) are widely recognised as important causes to understand capability and well-being of the people. It is estimated that the magnitude of visual disability is huge, about 161 million globally, and among them approximately 37 million are blind (Kuper et al 2006). Most visual disabilities are also avoidable. Avoiding visual disability may not bring high economic growth, but it can improve the well-being of people, by raising their capability, their freedom to do what they want to. At the same time, avoiding visual disability may also raise productivity, if there are appropriate employment opportunities using visual/ digitized facilities. There are nine types of avoidable blindness, namely, cataract, trachoma, childhood blindness (including vitamin A deficiency), onchocerciasis, refractive error, diabetic retinopathy, low vision, glaucoma, and age-related macular degeneration (ARMD). Ageing population is another factor leading to the need to give attention to the sensory impairment, including vision. Visual impairment among the elderly is one of the major sensory difficulties (West et al., 1997). As people age, the normal function of eye tissue deteriorates, and a decline in vision occurs naturally with age. Presbyopia, cataracts, age-related macular degeneration, glaucoma, and diabetic retinopathy are the most common 3 causes of age-related visual impairment (Loh and Ogle 2004). More severe visual impairment can be a result of medical condition such as cataracts, glaucoma, age-related macular degeneration, and diabetic retinopathy. Cataracts is the main cause of low vision (Dineen et al., 2003). Except glaucoma, all of these eye problems are treatable and avoidable. Untreated visual impairment leads to physical handicap (Rudberg et al., 1993; West et al., 1997), increased incidence of fall (Jack et al. 1995, Lamoreux et al., 2008), depression (Tsai et al., 2003; Hayman et al., 2007), social isolation, dependency, and even mortality (Christ et al. 2008). Therefore, with rising health problems among the older persons, this ageing population increasingly implies larger financial burden to take care of the older persons. Reducing the health problems – making the older persons healthy – will reduce the financial needs to take care of the older persons. At the same time, healthy older persons can also contribute to the society—paid or unpaid. More importantly, providing health care to everybody, including older persons is one of the basic universal human rights. Treating and avoiding visual impairment among older persons can much improve the well-being of the older persons, though not necessarily raising the GDP. Human Rights, Capabilities, and Market Reichert (2011) mentioned that there are three sets of human rights in the Universal Declaration of Human Rights. The first one includes political and individual freedoms such as the right to a fair trial, freedom of speech and religion, freedom of movement and assembly, and guarantees against discrimination, slavery and torture. This first group emphasizes on non-interference by government. The second embraces the positive rights, to guarantee that everyone, regardless of the place of residence, has an adequate standard of living for the person and his/ her family, including food, clothing, housing, medical care and social services. A country such as the US has attempted to provide adequate standard of living for its citizen, but it does not see it as a human right. The third is the cooperation among various countries to promote the implementation of the universal declaration of human rights. Reichert also discussed the cost of not fulfilling the rights. Some politicians and business leaders mention the cost of providing public services and fulfilling human rights. But, Reichert questioned the cost of not providing the services and fulfilling the human rights 4 by not providing health care services, people will get worse and the cost of taking care of them will be higher. If we do not fulfil the human rights, the impact can be much more costly. Framing health issues as human rights implies that it is not simply a “sick” person who should be cured, but it is an issue of human being, with all of its dignity. With this frame, the issue becomes an international concern, giving more pressure to countries to implement it. Sen (2009) saw freedom as human rights. Freedom is seen as a process and culmination. Human capabilities give freedom to persons to do what the persons wants. This capability approach to development is different from resources based approach, which uses income and wealth as the indicators of development. The capability approach is similar to the second aspect of human rights mentioned by Reichert. Vision disability, or lack of vision ability, may reduce capabilities of population –raising capability deprivation-- particularly in gaining paid and unpaid benefit from their activities. However, market mechanism cannot be relied to eradicate disabilities. Eradicating, or reducing disabilities, may not bring high economic growth. Therefore, government must make active programmes to eradicate disabilities. Development paradigm and its measurement must be changed from GDP-oriented development into capability based development. Life in urban areas should be designed so that the environment prevents disabilities and can provide more facilities for those who are already disabled. The facilities may include medical facilities to treat the disabilities and public infrastructure to provide more freedom for those disabled. An example is a facility for wheel-chaired bound persons and signs written in such a way that those with some visual disability can read easily. Demographic Changes in Indonesia Indonesia has experienced a lot of demographic changes. Along with the era of democratization since 1998, the demographic changes have also been accompanied with different issues on human rights, such as those on regulating fertility, freedom to move, protection of overseas workers, and the rights of the older persons and other vulnerable groups (including those who have physical disabilities). Recently, Indonesia, as later discussed in this paper, has also been concerned with the right to sight, the right of the people to be able to see clearly. 5 In particular, Indonesian population has been ageing, a process of rising number and percentage of older persons, especially at sub-national levels. This ageing process can be accompanied with rising numbers and percentages of people with disabilities. Therefore, this ageing process may result in a major financial burden for the society to take care of the older persons, particularly those with disabilities. If we can reduce the number and percentage of disabilities, taking care of the older persons can be much easier. Even, the older persons, with less or no disabilities, can still contribute to the society, either in paid or not-paid activities. As ageing population is more obvious in rural areas, disability may be seen more in rural areas. However, unhealthy environment and life styles in urban areas may result in higher disability prevalence in urban areas. The risk in urban areas may also be seen in more road accidents as visual disability increases with ageing population in an environment where safe and reliable public transportation in Indonesia is not widely available. Many people rely on riding motor-cycle to move. Policies on Visual Disability in Indonesia On 17 February 1999 the World Health Organization (WHO) and International Agency for the Prevention of Blindness (IAPB) launched a global initiative “Vision 2020: the right to sight”, to eliminate avoidable blindness by 2020. It is a worldwide partnership. Blindness has been seen as a serious public health, social, and economic problem for members of the WHO, particularly the developing countries. Yet, up to 80 percent of global blindness can be prevented, by eliminating conditions that cause blindness and/ or using successful treatment to restore sight. About 51 percent of global blindness is because of cataracts, and yet cataracts can be successfully treated to restore the sight. About 43 percent of visual impairment (some difficulties) is because of uncorrected refractive errors and there are treatments which can successfully restore the sight. The Vision 2020 identified five immediate priorities: cataract, trachoma, onchocerciasis, childhood blindness (including vitamin A deficiency), and refractive errors and low vision. These priorities were made based on the burden of the blindness and the availability and affordability of the program to prevent and treat them. Most cases of cataracts are related to ageing process, though children may be born with the condition. It may also because of eye injuries, inflammation, or other eye diseases. Fortunately, cataract surgery is very effective in restoring the sight, as long as there are 6 adequate supporting staff, such as surgeons, nurses, related infrastructure, and affordable cost. Relative to the efforts of avoiding other disabilities, technologies to avoid visual disabilities are available with relatively cheaper, simpler, and more successful treatment. For example, cataract surgery (for treating a common problem with visual disability) is relatively easy to be carried out and not expensive. It can restore the sight. However, there is no such procedure for hearing loss. Moreover, eye glasses can restore and correct sight completely, but hearing aid cannot restore hearing problem completely. Even contact lenses are progressing fast with the choices ranging from long-term to short-term uses, including disposable one (one time usage only). Lasik is also available to correct visual acuity. Furthermore, the cost of hearing aids is still much more expensive than the cost of eye glasses. Uton Muchtar Refie, the Regional Director, WHO South-East Asia Region, mentioned during the Consultation of WHO Southeast Asia region in Jakarta, 14-17 February 2000, that avoiding these blindness has a far-reaching implications in development and quality of life. This is an inter-country consultation for development or regional strategies for vision 2020: the Right to Sight. One of the purposes of the consultation was to orient the participation on Global Initiative for Elimination of Avoidable Blindness’ Vision 2020: the Right to Sight. He specifically indicated the rapid increase of burden from needless blindness as a result of rapid rate of population growth and rising percentage of older persons. He then emphasized the importance of WHO to have concerted actions and commitment to eradicate needless blindness. Indonesia reacted quickly. The Vision 2020 Indonesia was launched by Megawati Soekarnoputri, the Vice President of the Republic of Indonesia, at the Presidential Place, on 15 February 2000. The “Right to Sight” gained a strong political commitment during the fifty-sixth World Health Assembly, Geneva, by accepting the resolution WHA56.26 “Elimination of Avoidable Blindness” on 28 May 2003. More than 40 countries signed the resolution with Indonesia as one of them. The resolution urged all WHO members to set up national Vision 2020 plans no later than 2005, to establish a national coordinating committee for Vision 2020, to start implementation of the action plan by at least 2007, to include effective information system, and support the efficiency of the use of resources to eliminate avoidable blindness. 7 On 13 December 2006 the UN convention on the Rights of Persons with Disabilities (UNCRPD) was adopted. It is a human right instrument with an explicit, social development dimensions. The convention was opened for signature on 30 March 2007. Indonesia was quick to join the convention. It is the ninth country who signed the United Nations convention on the Rights of Persons with Disabilities in 2007. However, it took four years for Indonesia to finally ratify the convention, precisely on 18 October 2011 signed by the House of Representative. 3 4 With the ratification of the convention, there would be a similar view and understanding from all stakeholders to provide and improve services for people with any form of disabilities. The Convention was passed into Law in the following month when the government showed its intention to promote and protect the right of people with disabilities through enacting the Law no 19/2011on Ratification of the Convention on the Rights of Persons with Disabilities. The law was legitimised and signed by the President on 10 November 2011.This law complements earlier measures taken by the Government, such as the implementation of the Law no 4/1997 on Persons with Disabilities, and Government Regulation no 43/1998 on Promotion of Welfare of Persons with Disabilities. As stipulated in Law no. 4/1997, persons with disabilities are grouped into three categories, namely, persons with physical disability, mental disability, and both physical and mentally impaired. Among persons with physical disability, they include persons with visually disability, hearing disability, and ex-chronically diseases, while persons with mental disability include persons with intellectual disability, and ex-psychotic. In terms of policy, Indonesia has created the 2004–2013 INPOA (Indonesia National Plan of Action) on Persons with Disabilities, with eight main agendas, namely self-help organization and association of elderly with disabilities; women with disabilities; early warning and intervention; and education, training and work placement; access to surroundings and public transportation; access to information and communication including information and communication technology; poverty eradication through the enhancement of social protection and life expectations; and international cooperation. In other words, on the policy point of view several steps have taken place. Yet, one of the challenges in monitoring the progress is that much of the existing data on the current situation of persons with disabilities in Indonesia is not easily accessible. However, the commitment from Government has been shown from the financial point of view in which the government provided special fund of IDR 61.2 billion in 2009, later increased to IDR 70.2 billion in the following year, for providing services for people with disabilities. Meanwhile, 8 some local Governments such as in Jakarta, West Java, Central Java and Bangka Belitung, have started promoting and protecting the rights of persons with disabilities. The rights of persons in disabilities in participating in the general election have also been guaranteed, as stipulated in Article 164 of Law no. 10/2008 on the Election of Members of the House of Representatives, Regional Representative Council, and the Regional House of Representatives. Indonesia Braille Printing House has conducted several efforts to improve services for persons with visual impairment such as printing Braille books as well as providing talking books, performing Braille printing exhibitions in several events, giving Braille library services, producing Braille magazines script, and providing internet services.5 Statistics on Visual Disability in Indonesia, 2010 Measurement Lack of data collection and follow-up make assessment of the situation for people with disabilities difficult. The 2009 Susenas (National Socio-economic Survey) provided an estimate of 2.1 million Indonesians with disabilities, or 0.92% of the population. An earlier survey, the 2006 Susenas, estimated a higher figure of 3.1 million, or 1.38% of the population. The 2010 Indonesian population census, with a much larger coverage than the surveys, started collecting information on different types of physical difficulties which can be used as a proxy to understand degree of disability. It is a self-assessment on physical/ mental difficulties. The census provided three domains of functional difficulties (sensory, movement and cognitive). Sensory difficulty included visual and hearing difficulties, movement difficulties include walking or climbing stairs, and taking care of themselves (overall daily living activities) and cognitive difficulties include remembering or concentrating.. Each question has three alternative answers: no difficulty, some difficulty and severe difficulty. This paper limits its scope on vision difficulty, which is measured by the following question: “Apakah (NAMA) mempunyai kesulitan Melihat, meskipun pakai kacamata” (Does [NAME) have any difficulty in seeing, though using eye glasses?). The respondent had three 9 options to answer: tidak (no), sedikit (some), and parah (severe). If the respondent can see clearly after using eye glasses, the respondent is not said to suffer any visual difficulties. Visual difficulty is measured in a distance of minimal 30 cm with sufficient light—if the respondent can see things clearly (size, form, and colour), then the respondent has no visual difficulties. Severe difficulty includes total blindness. It should be borne in mind, that the interviewer never measured it. The answer depends simply on the respondent’s statement. (Badan Pusat Statistik 2011) To understand the magnitude of visual disability, we use two types of measurements, namely, distribution and prevalence. The distribution shows how the number of population with visual disability is distributed by age. Prevalence is the ratio of population with visual disability in a given age group divided by the number of population in that age group. Age Specific Distribution of People with Visual Disability According to the 2010 population census, there were 5.82 million Indonesians revealing that they suffered from visual disability. This section discusses visual disability differential by sex and place of residence. Among the visually disabled, 47.8 percent live in urban areas, reflecting the national urbanization rate of 49.79 percent. The women having visual disability outnumber the men, with sex ratio about 0.80 or about 3.2 million women vs 2.6 million men. However, an examination at various age groups provides an interesting phenomenon. Table 1 provides the number of people with visual difficulty by age group and degree of difficulty. The table shows an increasing number of people with visual difficulty as age increases. The number jumps by 5 times among the prime working age population aged 35 to 54 years old from just 111.0 thousand among those aged 35-39 to 647.2 thousand people aged 50-54. Ultimately, this trend may affect the productivity of the labour force. The number of people with visual disability is much larger (2.7 million) among the older group aged 55-74 than the prime working age population of 35-54 (1.8 million). The former accounts for 30.3 percent and the later for 46.1 percent of the total visually impaired. Among them, there are a half of a million people who report having severe difficulty in vision. However, as expected, the number of those suffering from severe difficulty is much smaller than the number of those suffering only some difficulties (5.3 million). See Table 1 and Figure 1. As seen in Figure 1, the number of people with severe difficulty is much 10