From invisibility to social participation: health promotion among persons with disabilities

Abstract

The 8th Global Conference on Health Promotion(1), held in Helsinki in 2013, built on pillars established in the Declaration of Alma-Ata (1978) and the Ottawa Charter (1986), adopted the theme “Health in all policies”. Such approach comes to clarify the responsibility of governments to their people, highlighting health as a fundamental right and a matter of fairness and social justice. Therefore, synergy in decisions should be achieved in order to avoid adverse impacts on health. Conceptually, that is expressed by the principles of legitimacy, accountability, transparency and access to information, participation, sustainability, and collaboration between sectors and levels of government. Changes in health concepts have determined the review of the concept of health promotion and have enabled the redesign of public policies. It should be emphasized that health promotion(2) must be understood and structured in two major areas, where promotional activities overlap disease prevention, and another one related to the expansion of the concept of health, in which the subjects become involved and contribute to ensure living conditions. In Brazil, the institutionalization of the National Policy for Health Promotion(3) in the health scenario is an example of mainstreaming policy already explained that health is not restricted only to the health sector(4). This policy aims to promote the quality of life, reduce vulnerabilities and health risks related to its determinants - ways of living, working conditions, housing, environment, education, leisure, culture, access to essential goods and services. It is noteworthy the fact that this policy stands out for its inclusiveness and integrative character, and is able to tune in to the Universal Declaration of Human Rights(5), which in Article 1 proclaims that “All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood”. From these concepts one can say that the operationalization of health promotion(6) follows principles that characterize the actions defined by the World Health Organization (WHO), such as holistic conception, intersectorality, empowerment, social participation, equity, multi-strategy actions and sustainability. One should note that operationalizing a public policy for persons with disabilities in Brazil is not an easy task, according to data published by the Brazilian Institute of Geography and Statistics (IBGE - Instituto Brasileiro de Geografia e Estatística) in 2010; the results showed that 45,606,048 Brazilians (23.9% of the population total) have some kind of visual, hearing, motor, and mental or intellectual disability(7), representing a very high prevalence in the 198,7-million Brazilian population. When considering the population at the regional level, it is observed that 27.7% of the population resident in Ceará, corresponding to a total of 2,340,150 inhabitants, have some kind of disability(8), a percentage higher than data registered nationwide (23,9%) and in the Northeast region (26.6%). In this context, a concept of disability arises as a result of the interaction between people with different levels of functioning and an environment that does not consider such differences; if there are no environmental or attitudinal barriers, there is no deficiency, but functional limitation instead(9). To understand the context in which these excluded people are, it is decisive to address the concept of social vulnerability(10) as the fragility of access to opportunities offered by the environment, considering health, educational and working conditions, and access to material and political goods. The term disadvantage is regarded as indicative of a dependent status due to age (children and elderly) or disease (people with disabilities), which in common lack conditions to work in order to meet their basic needs. The concept of disaffiliation was developed(11) bearing in mind that exclusion comprises a state of deprivation, whereas disaffiliation is a process of breakdown of the social support networks built in a territory, and it can be a temporary or permanent condition. In 2000, a UN meeting set the Millennium Development Goals (MDGs), which are part of the global strategic program for poverty reduction by 2015: eradicate extreme poverty and hunger, achieve universal primary education, promote gender equality and empower women, reduce child mortality, improve maternal health, combat HIV/AIDS, malaria and other diseases, ensure environmental sustainability, develop a global partnership for development(12). The idea of Inclusive Development began being delineated in 2005 by the World Bank’s Disability and Inclusive Development Team for Latin America and the Caribbean, as “[...] the design and implementation of actions and policies for socio-economic and human development, which seek freedom, equal opportunities, and rights for all people, regardless of their social status, gender, age, physical or mental condition, race, religion, sexual orientation, etc., and aligned with their environment”.(11) According to the Millennium Development Goals: Report 2005(12), “[...] the magnitude of the problems related to social exclusion of persons with disabilities and other vulnerable groups will be sufficient to avoid the attainment of the established goals, in case ways to include them in the general social and economic progress are not found.” Regarded as challenges to be faced are the reduction in the level of invisibility of people with disabilities, the access to health services, access to the labor market, and structuring the care network. Persons with disabilities are among those considered the most vulnerable groups. Primarily, due to the specific characteristics of the group itself, but also for being part of the poorest population strata, which reflects in their occupational performance and, therefore, in their quality of life. In relation to the labor market, particularly concerning the professional training, it historically occurred aiming at preparing persons with disability for low-skilled jobs, and they were often trained in the workplace(13). Structuring effective programs that consider these people’s differences and their potential are actions identified for this issue, adapting mediation strategies and professional possibilities to the market demands. One should note that the disability is no longer seen as the mere result of some impairment. The social model of disability has brought a heightened awareness to barriers to participation as very important causes of disability. In line with this statement, the World Health Organization recommends that any proposed social rehabilitation be guided by the International Classification of Functioning, Disability and Health (ICF) (14), which approaches healthrelated functionality and disability, identifying what a person “may or may not do in their daily life”, considering the functions of organs and systems and body structures, as well as limitations in activities and social participation in the environment where the person lives. Persons with disabilities require a minimum of accessibility, along with access to a series of rights provided to ensure them a better life. The access to health services has been difficult for people with disabilities because, in general, the investment is reduced in the health teams as regards awareness and information about the differences, the specific characteristics of persons with disabilities, and strategies to neutralize the deficiency, rendering it a functional limitation. An important strategy to be adopted is the creation of programs focused on the mentioned aspects to ensure equity. The Brazilian Unified Health System (SUS – Sistema Único de Saúde) has experienced major expansion of its services in the last decade, and the improvement in the labor process has been a challenge, demanding the reorganization of these services through the establishment of a healthcare network that ensures access for people with disabilities and, consequently, improvements in health indicators. Therefore, surveying the community facilities of social and governmental support is necessary, as well as providing continuing education to health and social assistance professionals, and the creation or expansion of access modalities, integrating the different levels of attention. After all, there is still a long way to go, but the process to surpass barriers (all of them) has started, and there is no turning back.