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Nursing and disability: An integrated vision

Maribel Cruz Ortiz,1 Mª del Carmen Pérez Rodríguez,2 Cristina Jenaro Río3
1Máster en Salud Pública. Instituto Superior de Integración a la Comunidad, Universidad de Salamanca, España. 2Doctora en Enfermería, Profesora, Facultad de Enfermería, San Luis Potosí, Universidad Autónoma de San Luis Potosí, México. 3Doctora en Psicología, Profesora titular, Departamento de Personalidad, Evaluación y Tratamiento Psicológico, Facultad de Psicología, Universidad de Salamanca, España

Mail delivery: Maribel Cruz Ortiz. Km 8.5, Carretera a Matehuala, Soledad de Graciano Sánchez. 78430, San Luis Potosí, México

Manuscrito received by 14.7.2009
Manuscrito accepted by 18.8.2009

Index de Enfermería [Index Enferm] 2010; 19(2-3): 177-181

 

 

 

 

 

 

 

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Cruz Ortiz, Maribel; Pérez Rodríguez, Mª del Carmen; Jenaro Río, Cristina. Nursing and disability: An integrated vision. Index de Enfermería [Index Enferm] (digital edition) 2010; 19(2-3). In </index-enfermeria/v19n2-3/7127e.php> Consulted by

 

 

 

Abstract

Disability is a growing phenomenon, linked to demographic changes, epidemiological and lifestyle as well as technical scientific advances in health. Understanding within the social model, (away from the more focused on the biomedical model focused on disability and health) becomes more and more strength. Understanding and addressing disability from this social model is far from being reflected in practice in Mexico, is a particular challenge for nurses who have given little attention to even the implications for practice from care seen as a proportion of care as well as advocacy.
Key-words: Disability/ Oppression/ Nursing/ Care models.

 

 

 

 

 

The figures about disability: A growing phenomenon

    In discussing measuring disability it is necessary to consider the complexity and variety of existing conceptual representations arising from social, cultural, political and economic foundations. One of the main mistakes is taking the conceptualization of disability for granted, while leaving aside obvious, though perhaps, invisible connections to other concepts and areas where, in fact, the same parameters, tools and methodologies for observation, detection, identification, measurement and recording do not necessarily apply.1
    At an international level, in the 1970s the interest in disability and related issues to people with disabilities appeared. Since then, these issues have become increasingly important, and efforts have been implemented to generate statistics on the characteristics of individuals with disabilities, and to gather documentation from already developed experiences.
    The most relevant result, from a study by the UN, found that there are about 600 million people with disabilities worldwide, of which about 400 million are from developing countries. Specifically, in the Region of the Americas there are approximately 60 million people with disabilities, accounting for approximately 10% of the population.
2
    The changes that have contributed to this growing population are known by the public health system from studying the epidemiological and demographic transition, and they relate to progress in health and social security systems, as well as to changes in people's lifestyles.
    Phenomena such as longer life expectancy, the increase of non-transmissible diseases, emerging and re-emerging diseases, violence, armed conflicts, accidents, and the use and abuse of alcohol, tobacco and illegal drugs, are among the sources of disability,
3 have no clear downward trend in prevalence for the general population,4,5 have contributed to this increase. Thus, an increase in number and type of requests for services and programs for people with disabilities as well as for those in their immediate environment is likely to occur since disability affects over 25% of the total population.2
    Therefore, the disabled are the largest minority, who have been neglected in all spheres. Mexico is no exception in this inattention. Statistical estimations of disability lack sound data and show methodological difficulties in the definition and identification of this group.6
    However, even with such methodological shortcomings, socio-demographic data from the National Institute of Geography, Statistics and Informatics in Mexico reveals the vulnerability of this group: There are an estimated 2,241,193 people with disabilities, and the group aged 65 and older is the most prevalent. According to etiology, 19.4% acquired a disability at birth, 31.6% are the consequence of illness, 17.7% are the consequence of accidents, 22.7% are aging related, and 8.5% by other causes. Of the total disabled population, 45.3% have a motor impairment.7
    Only 17.7% of the total over 12 years old are employed, 36.5% receive a minimum wage salary or none at all. The employed population works mainly in agriculture and livestock (23.4) and only 2% are professionals. The average schooling is 3.8 years compared to 8.1 years for the general population. In addition 63.3% of those older than 15 years have not completed basic education.7
    Of the total, 44.9% are beneficiaries of public health care and 53.9% have other health care, which indicates that over 95% of these people have access to different types of health services, but only those who are insured may be eligible for other social security benefits such as disability benefits, pensions, retirement, etc...7
    As these data show, the information is quite general and only give us some ideas about the most common types of disability, and there is not enough specific information for each group. A detailed study would demonstrate that among the disabled population there are some subgroups with more elevated vulnerability, such as those with intellectual disability or mental illness8,9 who are not perceived as having disabilities but instead subject to stereotypes that disqualify them for exercising their rights and deny them the right to decide for themselves. Further research on the demographics of this population is essential because, otherwise, disabilities will continue to be perceived, at best, as typically associated to groups with motor or sensory disabilities.
    An example of this issue is found in a report issued by the Colegio de San Luis, A.C., in the Assessment of congruency and results of the Program of care for people with disabilities in Mexico, which states that the "Program does not include a list of beneficiaries, making it difficult to assess its coverage, not having diagnoses of people with disabilities and lacking the tools and/or mechanisms to update the figures on the existing disabled population in Mexico".
10 The need for further research and for methodologies to identify this population and their support needs is evident.
    Either way, the data provided by a census methodology offer a profile that largely agrees with that prevailing in the Region, as described by Pilar Samaniego in her Approach to the reality of disabled people in Latin America.
1 The author characterizes disability as a social issue that may be valid for our country: The risk for and the presence of disability and impairment increases with age; the prevalence of disability is higher in rural than in urban areas; most services are provided by the government; the coverage is insufficient and there is limited access to paid work, for which economic self-sufficiency of people with disability is not significant.1
    All this is in a general social environment defined by Young as the 5 'faces' of oppression: exploitation, marginalization, powerlessness, cultural imperialism and violence,11 and associated in our context to the phenomenon of poverty.12

Understanding disability: Beyond health

    In 1998 in Mexico, the management of disability issues was given to the Secretary of Health by the Mexican Official Standard for comprehensive care for people with disabilities,13 which emphasizes a biomedical approach as opposed to a social approach. It was ratified in 2005 by the General Law of Persons with Disabilities,14 according to which the Secretary of Health is designated to chair the National Council for Persons with Disabilities.
    This trend is easily identifiable in the definition offered by the Mexican Official Norm for the term disability: absence, restriction or loss of ability to develop an activity in the manner or within the range considered normal for a human being.
    Such a narrow approach rests far from ecological and social models that no longer see disability as an individual deficit but rather emphasize the context and interactions, as well as the individual implications, not only on physical structures, but also on daily life and social functioning.
12 Thus, this definition has sought to go beyond the medical model and view it as a matter of Social Development and Human Rights although in practice this has not been achieved.15 This is paradoxical in light of the recognition of Mexico as one of the main promoters of the Optional Protocol on the Rights of Persons with Disabilities,12 which clearly presents a new approach.
    According to Amita Dhanda, the assumptions made by such a protocol advocate for a shift from a welfare approach to a rights approach. It also brings in the language of equality to grant the same as well as individualized approach for people with disabilities, while recognizing autonomy with support and disability as part of the human experience.
16 This statement itself is opposed to the belief that an individual with disabilities is less valuable, and it states that differences due to deficiencies contribute to the richness and diversity of the human condition rather than being a limitation that must be removed.
    As can seen, it is not only a matter of changing the language, but rather a complete transformation in the understanding of disability as a condition that affects not only the individual, but also the care providers, family, community and anyone who supports community development.
    According to various international organizations, people with disabilities often face obstacles in relation to the fulfillment of their human rights and basic freedoms.
17 For example, the existence of obstacles (practical or legislation-related) concerning access for people with disabilities to health and rehabilitation services, lack of free movement in public buildings, lack of employment opportunities, exclusion from education systems, lack of supporting tools in order to vote, etc., are conditions that impair their physical and/or mental capabilities, thus limiting their participation and violating their basic human and civil rights.
    In view of this, it is clear that disability goes beyond being a matter for the health field, and that the promotion of a change for full integration of disabled citizens rests on the promotion of autonomy with the required supports. This recognizes that individuals with disabilities may require supports to develop their capabilities and that such supports do not reinforce the disability but rather generate independence and emancipation because they allow individuals to admit their shortcomings while not feeling diminished in their capabilities.
    In this regard, the text of Amartya Sen might be more enlightening, "Many liberties relate to our ability to achieve what we value and want, although we may not directly handle control levers. If controls are set according to what we value and want, which is consistent with our 'counterfactual decisions', what we would choose if we were given an opportunity, these controls give us more power and freedom to lead the lives we choose. Reducing the freedom to control can dramatically reduce the scope and strength of this great idea .... While the control levers are used systematically in accordance with what I would choose and for that particular reason, my actual freedom (freedom as power) is not called into question, but my freedom of control may be constrained or nonexistent".
18
    This re-conceptualization of independence can help reduce the lack of participation of persons with disabilities in social, political and economic decision-making processes, from which they have often been excluded. The absence of people with disabilities in social, political and economic decision-making processes harms the basic democratic values and deprives society of knowledge, aptitudes and skills that could promote development.2

Nursing and disability: A pending debt

    In this context it should be mentioned that, although a change in the paradigm of care for people with disabilities derived from a change in the conceptualization of these individuals as subjects of rights and therefore full citizens has taken place, this change has followed different paths at a global level.
    In the Latin American context, this change has taken a slower path, with an emphasis on the concept of quality of services, in order to improve processes and, in the case of healthcare institutions, to improve the quality of care. However, this process has often set aside the needs and wishes of the people, and, in the case of individuals with disabilities, has simply overlooked the need to participate alongside them to discuss the old models and to address the challenge of developing new approaches.
    It is important to emphasize that even in a single country, such as Mexico, regional characteristics may vary, but typically the psychosocial network supplementing the health care system is incomplete or unavailable, and remains in hierarchical, linear organizations governed by administrative models and care alternatives that reflect the prominence of the biologicist model and the overlap of paradigms of attention where discourses speak of rights and full participation while the traditional paradigm prevails in actions.
1
    In this context the underling models of disability, as explained by Schalock, focus on personal defects rather than in human potential, that overemphasize the quality of care based on control, power, health, safety, disability, and classification. By contrast, the quality of life and social models focus on social inclusion, self determination, personal development, community inclusion, and providing individualized supports.19
    This picture justifies the need for nurses to play a key role on the overall policy and on planning to improve the quality of life of people with disabilities not only in the health field but also under an comprehensive approach that allows us address a 'pending debt' with this population.
    According to the declaration by the International Council of Nurses (ICN), nurses are crucial in early detection and intervention, and must participate in promoting health, preventing disease and in teaching and counseling programs for disabled people and their families.
20
    The Council further argues that disability can be physical, mental, sensory, psychological or social in nature and affects a significant proportion of the population of the world, from all age groups and from all countries and regions, and that national associations of nurses can promote the value of partnerships, advocacy, and the whole society.
20
    These approaches allow us to say, first, that the approach towards the phenomenon of disability by nurse practitioners highlights the concern and relevance of this issue. A more critical second look allows us to understand that the tasks to be undertaken are much greater than the already accomplished.
    It is not only a need for changes in language to reflect changes in our understanding, but also the very issue of disability requires an analysis of the characteristics of the profession itself. Some of the issues that may help us to reflect on the analysis of the conceptualization of disability in the profession are: the emphasis on institutional hospital practice in contrast to the lack of acknowledgement toward social healthcare practice, fighting against disease instead of for health promotion, and the understanding of care as something limited to dependence and disease instead of promotion and advocacy.
    The International Council of Nurses (ICN) cites areas of crucial importance to ensure care for people with disabilities, including the inclusion of contents in curriculum plans, support for people with disabilities and their families to access education and information and support services for a meaningful life, evaluation of maternal services provided for children and adolescents, ensuring that children do not become disabled due to poor health services, malnutrition, poor hygiene, lack of immunization, family violence or lack of appropriate advice to parents ...".
20 However, in these areas a medical approach prevails, consisting of providing care without taking social responsibility for discrimination which this group is affected by, even though the other approach would give a brader sense to nursing care.
    One element that can help us highlight our limited involvement in this issue are nursing publications. Although it is true that under the heading 'disabilities' there are already numerous articles, it is also true that they focus mostly on health issues whereas little attention is paid to nurses' involvement in advocacy. In 1997, Ruth Norhway already stated that if nurses noticed people with disabilities being oppressed, they should immediately report it and suggest the actions to be undertaken to eliminate this situation.
21
    Given that the environment includes attitudes and behavior of others, it can be seen that nurses' behaviors have the potential to either reduce or maintain such oppression. Oppression becomes a consequence of the way in which society is structured and by the lack of questioning such structure.
21
    To determine the presence or absence of oppression in the lives of social groups, Young suggests analyzing the presence of five facets or forms of oppression: exploitation, marginalization, powerlessness, cultural imperialism and violence. The author argues that these domains may form different combinations among the different social groups, but emphasizes that the presence of just one of these domains indicates the presence of oppression in a group's life.
11
    As can be seen, more than one facet of oppression is present in our environment, which brings us, among other implications, the need to conceptualize and analyze the central definition of nursing care.

Care and Disability: An integrated vision

    The word care has been central in the nursing literature for many years. It has been utilized in two different, but related meanings: 1) caring or providing care for someone, and 2) being concerned/interested in someone. The first definition means to develop activities for and with other people which are believed to be beneficial for them. Nursing care often involves two people whose connection is mainly determined by one of them taking the responsibility of meeting and satisfying the needs of the other.22
    The second meaning of caring reflects how a person thinks about another or how they feel committed to and responds to their needs. This has nothing to do with the various tasks assigned to nurses but with attitudes toward another person, who is being taken care of, and with their commitment to that individual.
22
    Both meanings may converge without being mutually exclusive in a healthcare vision that preserves cultural values associated with the profession such as empathy and kindness, together with a focus on power which has the duty to remove or modify any system, social structure or set of rules that contribute to oppression while keeping the focus on the individual. Otherwise, we will face a common reality as pointed out by Davis; "perhaps nursing care is determined by institutional demands rather than by personal needs of the patients".
22
    One thing is to understand the ethics of nursing from an intellectual standpoint; it is quite another to integrate it within oneself and make it a central part of our being in such a way that it becomes natural to see and think about ethical issues in our daily nursing practice.
    The challenge for health workers is to embrace change as an opportunity for ongoing learning and developing at a personal and professional level, given their legitimate concern for their personal situation and incomes,
23 without forgetting that involvement in the rights of people we care for is a form deeply committed to the profession and care tasks.
    Ideally, most cutting-edge improvements in quality should be addressed by the workers themselves, because they are in the ideal situation to discover opportunities for innovation.
23 The analysis of the conceptualization of disability in the field of nursing is not only a pending debt to other people, but an extraordinary opportunity to develop a field of professional practice which traditionally has not been not viewed as ours. At the same time, it is an opportunity to clearly assume Nursing as a profession linked to and involved with social issues .

References

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2. Organización de las Naciones Unidas. Quinto examen y evaluación quinquenal del Programa de Acción Mundial para las Personas con Discapacidad. Washington, OMS, 2008.
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10. Colegio de San Luis A.C. Evaluación de consistencia y resultados del programa de atención a personas con discapacidad. México; El Colegio de San Luis A.C. 2007.
11. Young I. Justice and the Politics of Difference. Princeton: Princeton University; 1990.
12. Organización de las Naciones Unidas. Convención sobre los Derechos de las Personas con Discapacidad y Protocolo Facultativo. ONU, Ginebra 2007.
13. Secretaría de Salud. Norma Oficial Mexicana NOM-173-SSA1-1998, para la atención integral a personas con discapacidad. México; Secretaría de Salud, 1998.
14. Congreso de la Unión, México. Ley general de las personas con discapacidad. Cámara de Diputados del H. Congreso de la Unión, México. 2005.
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19. Schalock RLV, Bonham GS, Fantova F, Van Loon J. Enhancing Personal Outcomes: Organizational Strategies, Guidelines, and Examples. Journal of Policy and Practice in Intellectual Disabilities. 2008; 5(1): 18-28.
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23. Organización Mundial de la Salud. Colaboremos por la salud. Informe sobre la salud en el mundo 2006. Ginebra: Organización Mundial de la Salud; 2006.

 

 

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