Print version ISSN 0080-6234
Rev. esc. enferm. USP vol.43 no.1 São Paulo Mar. 2009
Social inclusion of disable people: achievements, challenges and implications for the nursing area*
La inclusión social de la persona con deficiencia: conquistas, desafíos y implicaciones para la enfermería
Inacia Sátiro Xavier de FrançaI; Lorita Marlena Freitag PagliucaII
PhD in Nursing. Full Professor of the Nursing Department at Federal University
of Paraíba. Campina Grande, PB, Brazil. firstname.lastname@example.org
IINurse. PhD in Nursing. Full Professor of the Nursing Department at Federal University of Paraíba. CNPq Researcher. Fortaleza, CE, Brazil. email@example.com
This study aimed to understand the testimonies of disabled people about the concreteness of the social inclusion process, as well as to articulate their testimonies with the directives of Law 3289/99. Eighteen people were interviewed, six of which were physically disabled, six visually disabled, and six had hearing disabilities. Data were standardized and categorized in two meaning cores: pre-inclusivist and inclusivist guidelines of the disabled person. The methodological perspective was discourse analysis. In conclusion, these subjects had achievements in legislation that guarantees their rights to citizenship, but there are challenges in the areas of healthcare, education, professional training and insertion in the job market. The rehabilitation nurses must know the experiences of these subjects and their relatives to help them with strategies of coping for the problems affecting their inclusion, and consequently their health.
Key words:Disabled persons. Activities of daily living. Rehabilitation nursing.
El objetivo de la investigación fue comprender el discurso de las personas con deficiencia acerca de cuán efectivo es el proceso de inclusión social y articular el discurso de eses sujetos con las directrices del Decreto nº 3.298/99. Fueron entrevistadas seis personas con deficiencia física, seis auditivos y seis visuales Los datos fueron estandari-zados y clasificados en categorías en dos nú-cleos de sentidos: directrices pre-inclusi-vistas de la persona con deficiencia, y directrices inclusivistas de la persona con de-ficiencia. La perspectiva metodológica fue el análisis de discurso. Se concluye que eses sujetos conquistaron una legislación que asegura derechos de ciudadanía, sin embargo existen desafíos en el campo de la salud, educación, profesionalización y de la inserción en el mercado de trabajo. Los enfermeros que actúan en rehabilitación necesi-tan conocer la vivencia de eses sujetos y de sus familiares para ayudarlos a buscar estrategias de enfrentamiento de los problemas que afectan su inclusión y, consecuentemente, a su salud.
Descriptores: Personas con discapacidad. Actividades cotidianas. Enfermería en rehabilitación.
Disability is a historical and culturally elaborated concept. Social relations among disabled (DP) and not disabled persons include several and complex variables, whose control does not always depend on the deviant and the agents who promote it. As this concept is culturally built, in a given historical context, and considering that DP are subjected to typification schemes, society can therefore use certain mental stratagems to legitimate inequalities and segregate these people.
One of the authors of this study has been in both personal and professional contact with a group of physically disabled persons since 1997, permitting the apprehension of some intervenient factors- including the social inclusion process of these subjects. The following assumption is a result of this experience: individuals who are considered different carry the marks of alterity that distance them from the social prototype of a given culture. These marks delimit, in addition to their place, their territorial space, their lifestyle, and they can even put their citizenship at risk.
Knowledge of Law #3298/99, which created the National Policy for the Integration of Disabled People(1), motivated one of the authors to study how physically disabled, deaf and blind people perceived their experience in the social context, and the impact of Law #3298/99 in the social inclusion process. The present study is part of a doctoral dissertation named Forms of socialization and establishment of alterity: experiences of people with special needs, in correlation with legislation and the subsequent and updated approaches to the rights of DP. And, considering the range of Law #3298/99 in the context of social inclusion, the present study aimed at understanding the discourse of DP about how they perceive the concreteness of the social inclusion process and articulate their discourse with the guidelines of Law #3298/99.
In Brazil, the first defenders of the rights of DP were their parents and relatives, in the 1960s, opposing the state of segregation that was imposed on them and claiming the right to socialization. In 1979, a protest movement was started, with letters being sent to newspaper columns. In other countries, this movement was so massive that the necessities and interests of DP started being exposed in the media, becoming the theme of international conferences(2). Thanks to the global movement, different conquests were achieved: the proclamation of Declaration on the Rights of Disabled Persons; the UN recommendation for 1981 to be the International Year of Disabled Persons; the World Programme of Action Concerning Disabled Persons; the adoption, by the UN, of the Equal Opportunity Policy for Disabled Persons, and UNESCO including the term inclusive society in the Salamanca Statement(3).
In the current Brazilian conjuncture, the DP's non-governmental organizations configure new spaces, forms of participation, social relations and achievements: the state accepted the year 1981 as the International Year of Disabled People. In 1986, it passed Law #93.481/86, creating the National Coordination for the Integration of Disabled People - Coordenadoria Nacional para Integração da Pessoa Portadora de Deficiência (CORDE). On October 24, 1989, Law #7853/89 was issued, covering support for and social integration of DP and directing the state's actions(4).
In 1991, the Healthcare Program for Disabled People was created, through a partnership between state and municipal institutions, establishing the guidelines for the implementation of primary and secondary prevention measures for disabilities and Community-Based Rehabilitation, Reabilitação Baseada na Comunidade (RBC), performed by relatives and adequately trained and supervised community agents. The users enter the system through the Basic Healthcare Units - Unidades Básicas de Saúde (UBS), which are supposed to provide problem-solving care for most problems and necessities noted in this segment (2). And the state sanctioned Law #3298/99, which complements Law #7853/89 and establishes the National Policy for the Integration of Disabled People. This document has five sections dealing with health, education, professional habilitation and rehabilitation, access to work, culture, sports, tourism and leisure. Among other laws, this law was recently strengthened by Law #5296/04 (5), on accessibility; Law #5626/05(6), which regulates Law #10436 about Brazilian Sign Language - Língua de Sinais Brasileira (LIBRAS), considering it a legal form of communication and expression for the deaf community and recommending support by public powers and public service companies. It also determines that the national educational system guarantees the inclusion of LIBRAS in courses in the areas of Special Education, Speech Pathology and Education, at high school and university level. Finally, it establishes that public healthcare institutions should guarantee adequate treatment and healthcare to DP. And Law #5904/06(7), about the usage of guide dogs by visually DP.
This is a descriptive study with a qualitative approach, performed in three healthcare institutions supporting DP in a city in the Brazilian Northeast. Institution A assists physically disabled people; B assists deaf people, and C assists blind people. The study was performed from September, 2002 to June, 2004, after being approved by the Ethic Committee (File #164/02). During the whole investigation, the bioethical principles recommended by Resolution #196/96 were respected.
The methodological perspective used in the study was Discourse Analysis (DA)(8), an interpretative process where the analyst unveils the meanings established in several forms of production: verbal, non-verbal, photographic or sound-based. DA pursues the vertical exhaustion of the discourse group, considering that the discourse is the construction of the subject by society, silence or forms of interpreting reality(8).
The DA corpus consists of the formula: ideology + history + language. Ideology is defined as the system of ideas, beliefs and worldview pertinent to a class or society, producing evidence that places the subjects in the imaginary relation with their material conditions of existence, and institutes the position of the subjects when they are affiliated with a discourse. History leads into the social-historical context, which makes the production of testimonies possible under certain conditions. Language is the materialization of the text, generating clues about the sense the subject intends to convey. The analysis of the corpus happens in stages(8): 1st stage: reading and re-reading the text (linguistic surface), to de-superficialize it and apprehend the meanings of the discourse. 2nd stage: extracting excerpts from the discourse, in order to group and categorize the excerpts of interest from the analysis and build the discursive object. 3rd stage: interpreting the discourse through the identification of the ideological formations pronounced by the subjects of the discourse.
Six motor DP, six deaf DP and six visually DP took part in the investigation. The material was collected with semi-structured interviews, based on questions related to social inclusion. The following pseudonyms were adopted: Hefestos for physical DP, Sísifo for deaf DP and Homero for visually DP. According to the number of participants of each disability type, the numbers 1, 2, 3, 4, 5, and 6 were added to the pseudonyms to identify the discursive excerpts.
In the first analytical stage, all recordings were fully transcribed. Next, the transcribed material was de-surfaced, working with the paraphrases, synonymies and correlating what was said with what was unsaid, in order to apprehend the DP's paraphrase families. The discursive object was delimited with excerpts from Law #3298/99, which integrates the official discourse about inclusion, with excerpts from the DP's discourse, demonstrating how they understand the social inclusion process. These excerpts were standardized and sorted according to the correlation of the meanings. Two thematic axes and the respective categories emerged: 1) Pre-inclusive guidelines of DP: Health - disability as a disease; and Health - a matter of social control. 2) Inclusive guidelines of DP: Access to education; Access to professional habilitation and rehabilitation; Access to work and Access to culture, sports, tourism and leisure. Once the discursive object had been outlined, the third analytical stage started.
The authors attempted to apprehend the effects of language on ideology and the materialization of ideology in language, in order to apprehend the historicity of the text(8), carefully analyzing the metaphors, unsaid words and silences, establishing a dialogic relation with other texts that allude to socially built ideas about the deficiency and social inclusion of DP.
Pre-inclusive guidelines of the disabled person
Category: Health - deficiency as a disease
[...] she told me that the doctors had said that I would get crazy if I had gone to school too early. And I always questioned that. No! That's absurd. There's no point. The problem is in the leg, not in the head (Hefestos 3).
That's it, the disabled person has several problems, the person does not feel normal (Sísifo 2).
The disabled person is a limited person. I mean, they see themselves as normal, but what do they have? They have serious problems. For me, this person is not normal, he or she has a problem (Homero 6).
Category: Health - a matter of social control
One's right to health is respected, and the other's is not. Society hides it a lot. You seek a certain type of service: I didn't know about that. Does it exist: I don't know! Society is not ready to show this benefit to a disabled person, nope. You have to stand for your rights and you have to show it: Here, I want it, and that's it (Hefestos 1).
Talk about health... I think that maybe we live in a disabled society. If the laws are not put to work, if you don't go for it, there's no effect. You don't see the right to health. People don't struggle for it (Sísifo 3).
About health? They try to hinder you in your rights, it's difficult for you to get certain things because you're disabled, and we see it. I also think that it's not only the appearance, but it's also social exclusion.
Inclusive guidelines of the disabled person
Category: Access to education
I had no chance to go to school when I was young because there was no Braille in school. I was only able to learn now, at the association, because they have Braille here (Homero 4).
I started to study at the age of 12 because my mother wouldn't let me. At home, both my brothers studied and I didn't. I wanted to study so bad, but the school was full of stairs, how was I supposed to study? The laws we have today did not exist at that time (Hefestos 3).
The school didn't have LIBRAS. I used to do mathematical operations. I learned, developed. When I was developing it my mother took me out of the school. It was just miming... now there's LIBRAS (Sísifo 5).
Category: Access to professional qualification and rehabilitation
[...] you have to show your potential, that you have a limitation, that you want to be treated as an equal. You have to have determination. You have to fight for yourself. There's people with self-pity (Sísifo 4).
The disabled person has to have willpower and stand up for himself, because, most of the time... I know many people who limit themselves. Ah, because I'm disabled and can't do that. If you don't make an effort... That's it. Right now, I tell my friends: Let's do the course. I'm 21 years old, I have a lot of things to achieve (Homero 2).
[...] because it's very difficult for disabled persons to leave the shell they live in. When we're kids, we have that idea that we're different from other people. Once I was talking to my mother and she said: you're going to retire. And I said: no! I want to be myself! I want to be another. I want to build. Why not? Just because I'm disabled? There's no way I want that. So, I think it's necessary, that you have to give us opportunities to contribute, to show what we can do (Hefestos 5).
Category: Access to work
There are companies with a terrible mentality. There are companies who want to give us jobs, but they don't know what to do. I wish all of us could work, there are a lot of unhappy disabled persons (Sísifo 1).
Oh, that's complicated. There's the Law, right? But people don't respect it. They all want physically disabled people. When a blind person seeks out a company, they say: later, later, and this later never comes. They think that blind people have no capacity, that they can't work. There's prejudice, difficulty, because many disabled persons are not prepared for a job. (Homero 3).
Because he said I couldn't do it, that I was too small and couldn't reach the blackboard, that I couldn't teach all those big boys. There was no way. And do you know what I did? I put a stool in front of the blackboard and climbed on it. There! Now I was their size (Hefestos 6).
Category: Access to culture, sport, tourism and leisure
There is some hypocrisy behind all that. Inclusion is not just work. It's respect for you, any way you are, it's true, checking what your objectives are. See you as a person, see that you exist. They put you there, they're giving you a job or a retirement fund, and, for society, this is inclusion. But it's not. If the person who does a project for an institution thought about it for a second... no, I can climb these stairs, but there's a brother who can't. If they installed an elevator, a ramp, it wouldn't matter being a physically, blind or deaf disabled person, access would be the same (Hefestos 4).
Accessibility to public and private means makes people see themselves as different from one another. How can I say it? The world, the life out there, does not provide us with the conditions we need. There's this issue: I walk slowly, nobody waits for me, everybody walks away and you're left alone because you're left behind. These little things remind you of your disability (Homero 1).
It's a matter of friendship, relationship. I'm not brave enough. A relationship with another disabled person is difficult. It's not prejudice, it's difficulty that we find... (Sísifo 2).
Pre-inclusive guidelines of the disabled person
The pre-inclusive concepts of Law #3298/99 are included in Section I - Health, based on the medical model of disability. The biologist connotation of healthcare actions is necessary because of the magnitude of professional actions atthe primary and secondary levels of disability prevention. And considering that disability, either innate or acquired, has multiple causes, professional intervention is decisive for the stabilization of the clinical situation and to obtain significant functional gains for regaining psychomotor skills.
Pre-inclusive rehabilitating actions reflect the position of official statements, where disability is defined as loss or abnormality of a psychological, physiological or anatomical structure or function, preventing the individual from performing activities within the standards considered normal for the human being. Disability is permanent when, in spite of new available treatments, it does not allow for recovery or change due to the occurrence of sufficient time for its stabilization. Incapacity is the effective and marked reduction of the capacity of social integration, so that the DP need equipment, adaptation, means or special resources to be able to communicate and improve their quality of life(1).
In the category: disability as a disease, the subjects metaphorically assume subject-positions regulated by discursive structures whose effects of the meaning of the disability are historicized as problems, considered a deviation of the physiological functions of organs and tissues. The expression problem is used by all subjects to replace disease, to mean disability as something incrusted, localized, permitting the problem's and the DP's classification according to the affected organ or body segment. The perception of the subjects is that the DP is sick.
In the category: Health - a matter of social control, the disbelief in achieving the right to health and the efficiency of the Single Health System - Sistema Único de Saúde (SUS) is disseminated. By stating that one's right to health is respected while the other's is not or that it is difficult for the DP to access the healthcare services, the subjects put the fundamental principles of the SUS at risk: universality, integrality, equity and social control. The DP's discursive structures about the SUS corroborate a study report that detected that, in a population similar to the one estimated by the 2000 census, 24.2% of the Brazilians consider healthcare as the greatest problem they have to face every day. Among the several problems the government needs to solve, 19.4% and 41.3% of the respondents, respectively, mentioned the lack of physicians and nurses and the long waiting lines for consultations as challenges(9).
Considering the management difficulties in each government sphere, the Ministry of Health approved the National Healthcare Plan - Plano Nacional de Saúde (PNS) in 2006, with the purpose of strengthening basic healthcare, based on the local-regional differences, the fixation and qualification of professionals, guaranteeing enough material resources, equipment and inputs to perform the group of actions proposed for these services(10). However, although Law #10.098/2000 considers that refusing, postponing or hampering access of DP to healthcare services are crimes subject to fines and imprisonment, as well as the occurrence of negligence in case of existing conditions for inpatient or outpatient clinical healthcare(11), in the specific case of DP, the feelings of discrimination, unfairness and inequity are evident in statements about the healthcare services not knowing of their rights and the omission of society in defending these rights.
Thus, the ideological dimension DP propose is inserted in competition and personal development. When the subjects express themselves in the third person, they do not see themselves as subjects of social control, viewing the participation of citizens and entities in the activities of the SUS. The DP spread the discourse of social demobilization and passiveness by eliciting the theme of individualism, in which each person must fight for his/her rights. The non-participation theme also emerges in the metaphoric discourse that considers society to be disabled as well; and, if people do not fight for their rights, the law will have no effect. The silence included in the discourse reminds of the need to develop political and solidarity-based awareness that can lead society to change its behavior regarding convictions, values and expectations about the social inclusion of DP.
Inclusive guidelines of the disabled person
It is worth noting that, in Brazil, inclusive education ends an epistemic bipolarity, represented by periods before and after Law #3298/99.
Category: Access to education
The inclusive education discourse is a modern phenomenon (first epistemic moment), and, before the 1990s, it was spread in the global context based on other discourse about human rights, democracy, equal opportunities and educational insertion of all students in the mainstream education network. The founding discourse for this trend was the Regular Education Initiative (REI), in the United States of America, in the 1980s. However, all over the world, the educational systems, guided by the medical model of evaluation, still considered learning difficulties as a consequence of deficits of the students, avoiding questions about the failure of schools(12).
The educational paradigm before the 1990s, the dimension of the goals and actions of the educational movement were strongly influenced by the meanings that families and society built around the DP, in such a way that the educational process was marred by dispersions and continuities. The DP knew that their negative attributes made them different from other people. This originated the subject positions assumed by Hefestos 3, who stated that he was the only one among his siblings who did not study; by Sísifo 2, who acknowledges that deaf people take a long time to develop and learn due to the absence of LIBRAS, manifesting feelings of inferiority and exclusion. And, at the same time, the meanings reveal the acknowledgement that studying means a passage to another place - that of personal development. When Hefestos 3, Sísifo 5 and Homero 4 respectively state that he started going to school at the age of 12 because his mother would not let him go to school; did not learn because there was no LIBRAS at school; and that he could not study during childhood due to the absence of Braille, they confirm that they were excluded from the regular school, but they managed to assume a position of resistance in adulthood by attending a regular course.
In the 1990s, the discursive production about educational inclusion for DP took on a hegemonic character, thanks to international demands ruled by the inclusive discourse, whose seed whas planted by Disabled Peoples' International, a non-governmental organization created by disabled leaders(3); also thanks to the important role played by the United Nations Children's Fund (UNICEF) and the United Nations Educational, Scientific, and Cultural Organization (UNESCO) to guarantee that education could reach all children(12).
In Brazil, the transition of the educational model towards an inclusive model results from the 1988 Constitution, which instituted equality of conditions, access and permanence in school as one of the principles of education; elected citizenship and dignity of the human being as one of the fundamentals of the republic, and, as main goals, the promotion of common welfare without any type of prejudice or discrimination.
The Salamanca Statement(3) and Law # 9394/96, which covers the National Guidelines for Special Education in Basic Education(13) were added to the edicts of the Constitution, among others. These legal documents recommend the insertion of the DP in the regular school as an encouraging practice of social inclusion, and as a way to extinguish the segregation of these persons. They establish that the demand for special education should be present only for students with serious disabilities, therefore considered incapable to be included in regular education.
These achievements of the DP movement mark the second epistemic moment considered in this study: the historical, cultural and discursive conjuncture of the 1990s allowed for multiple meaning networks that opened new spaces for the institution of Law #3298/99, and the approval of specific legislation regarding social inclusion of the DP. The educational reform brought benefits that allowed for the social inclusion of the DP, to the extent that Sísifo 5, in his discourse, manifests optimism and hope of inclusion; Homero 4 affirms educational inclusion thanks to the addition of Braille and Hefestos 3 is satisfied with access to education.
Regarding visually-impaired DP, the government passed law #10753/2003, instituting the National Book Policy(14), which provides grants to libraries for their maintenance and acquisition of books in several formats, covering the intellectual production of Brazilian writers and authors, both in scientific and cultural books.
Category: Access to professional qualification and rehabilitation
The legal bases for professional qualification and rehabilitation are broad, and are inserted in national and international documents, similar to Conventions 111 and 159 of the International Labor Organization (ILO) and the National Program of Human Rights, Laws #129/91, #7863/89, #914/93, Resolution #17 of CNE/CEB/2001 and Law #3298/99(15).
Law #3298/99 establishes actions in the scope of special adequate prevention and treatment programs for victims of domestic, occupational, traffic and other types of accidents, as a way of guaranteeing rehabilitating treatment, with limited duration and well-defined goals, so that the DP can compensate for the loss of a function or a functional limitation and attain optimal physical, mental or social functional levels to have access to work and to change their own lives.
In the chapter of Education, this Law is based on the Brazilian Educational Law and Guidelines and establishes that special professional education should provide DP with conditions for professional qualification according to their potentials, expectations and market needs. Professional education, as opposed to basic education, chooses the principle of employability instead of equity.
Educational actions covered in this law have been developed, such as the project of Information and Communication Technologies - Tecnologias de Informação e Comunicação (TIC) and the Inclusive Education Program - Right to diversity, destined to help DP develop competences and skills necessary to communicate with society, individual and collective production, making them capable of social inclusion(16). However, such experiences are located in large urban centers. Therefore, schools do not actually work as recommended by Law #3298/99, since there are incoherences between governmental proposals and the professional qualification of DP regarding the provision of the necessary resources to educate them.
In this study, the metaphoric discourse of the subjects reminds of the ambivalence between the professional qualification processes: at first, Sísifo 4 states that it is necessary to show her potential and that she wants to be treated as an equal. Homero 2 says she has a lot to achieve and wants to go on with the course. And Hefestos 5 wants to build, but needs to have opportunities to contribute, to show what he can do. These fragments lead to inclusive concepts: valorization of the difference, respect for the difference, solidarity, cooperation and improvements for everybody(12). However, Sísifo 4 also says that it is necessary to show that he has a limitation, that he needs to fight for his rights, he has to have determination. Homero 2 strengthens this testimony by signaling that, if there is no struggle, there will be no achievements. And Hefestos 5 states the differences between DP and persons without disabilities. These testimonies lead to integrationist concepts: selection, competition, individuality, individualized perspective(12).
Both semantic pathways, integration and inclusion, which are part of the discursive universe of the DP chosen for this study, are directly related with the inclusive paradigm, showing that the inclusion of these subjects is a process under construction. They also reveal that the predominant subject position is that of exclusion. The ambivalence of the subjects leads to silencing regarding the coverage of professional qualification programs for DP, which is still small and timid. And, in this case, unemployment does not happen because of lack of aptitude or merit, but due to the lack of opportunity and lack of knowledge of their potentials and prejudice.
In the specific case of self-esteem interfering in the professional qualification process, excerpts from Homero 2's discourse about limitations; Sísifo 4 about self-pity; and Hefestos 5's, comparing DP to a hidden animal, state how prejudice, a typically integrationist concept, is opposed to the inclusive concept of valorization of differences(12). The semantic pathway in these excerpts shows how psychological residues influence the social imaginary, potentially unbalancing relationships with the social midst. It also shows how control over individuals does not operate only through consciousness or ideology - it starts in the body, with the body. Therefore, low self-esteem allied to unemployment forces DP to seek out the benefits granted by social security(2).
Category: Access to work
Insertion of the DP in the job market is regulated by article 93 of Law #8213 and article 36 of Law #3298/99, which establish a percentage of positions destined to disabled people according to the number of employees in the company: up to 200, 2% of the total; between 201 and 500, 3%; between 501 and 1000, 4%; and over 1000 employees, 5%.
The incorporation of DP into the productive system is a priority and should occur in conditions of equality with other workers in the form of selective placement, making procedures and special support available according to the level of motor, sensorial or mental incapacity (1). With the establishment of quotas based on the staff of the company, Law #3298/99 acknowledges the dignity and usefulness of DP establishes a more humanitarian treatment and respect for their right to work. However, regarding employability, Homero 3 mentions the lack of professional preparation, disregard for the law and discrimination towards blind and deaf DP. Hefestos 6 states discrimination as well, and Sísifo 1 mentions disregard for the law, but he notes that company managers do not know the necessary procedures to hire a DP.
The discourse of the subjects reveals their difficulties in finding jobs and the feeling of frustration due to the role of worthiness and fitness in the unemployment process. It also shows the practice of resistance as an instrument of employability, as they understand that society tolerates the inclusion of DP at the workplace because they fear punitive legal actions. Without the support of assistance institutions, they would hardly be able to find work, since hiring a deaf DP also requires hiring an interpreter. In the case of physically or visually disabled people, it is necessary to adapt the workplace to their condition. Companies are not willing to take on such expenses.
Category: Access to culture, sport, tourism and leisure
The UN has recommended that its member countries reach the goal of a society for all by 2010(3). There is the intention of encouraging the participation of DP in exhibitions, publications, artistic representations and competitions in the field of arts and literature, in order to provide educational and subjective development for the subjects, in addition to socializing knowledge that will provide them with sociocultural inclusion(1).
A plural society contributes by creating recreational and sports activities for students with several types of disability. Assistance entities dealing with DP have included several activities in this area(3). However, for the studied DP, access to culture, sports, tourism and leisure is still unreal. Hefestos 4 considers himself disrespected, labeling the inclusive process as hypocrisy. Homero 1 corroborates this idea by stating that the lack of access strengthens differences among people and, in the field of socialization, society does not meet the demands of the DPs. And Sísifo 3 mentions prejudice in relation to his peers.
These subjects' discourse leads to the necessity of DP and non-disabled people to develop solidarity and ethics, respecting the functional limitations of the individuals, and to reconsider accessibility and companionship. According to their discourse, it is understood that, even with legislation that favors the social inclusion of DP, and with some authors reporting successful experiences with music, dance and arts(17), there is still a lot to be done in order to include DP in sociocultural activities.
Implications for the Nursing area
The nurse participates in the rehabilitation and reintegration processes of DP, helping them to take on self-care activities, such as body care, care with their clothes and personal appearance, with their diet, eliminations and household activities. However, some authors recommend the nurse to work in a non-directive way, in order to understand the feelings and ideas contained in voice intonation, mimicry, gestures and slips of mind(18). It is also stated that some professionals need to extrapolate the field of biological rehabilitation and reintegration, imprinting an exclusivist character in their practices(2).
It is suggested that the difficulties of healthcare professionals in care delivery to DP is due to lack of preparation because, over time, society would segregate these individuals by considering them invalid. The educational project for Nursing undergraduate courses should include internships in institutions that assist DP, providing undergraduate students with the establishment of informal relations, maintenance of inter-group contacts and more autonomy for future professional decisions in the context of the inclusive process for DP(19). Since rehabilitation is an interdisciplinary process that requires a holistic approach, it is extremely important that the efforts of the rehabilitating process of DP start at the first contact with the patient, and that the healthcare model aims at prevention, education and involvement of the patient and family caregiver(20).
The DP movements produced achievements in the legal fields that intend to minimize the strength of the stigma resting on these individuals. However, the discourse of the subjects announces the lack of schools and professors for deaf people and communication instruments for the deaf and the blind, and the difficulty of access to buildings. In the job market, the physically disabled person is able to get a job, to the detriment of deaf and blind people, since these would bring more expenses to the employer due to the necessary adaptations. Other factors that prevent their insertion in the job market are prejudice and lack of professional qualification. In these conditions, DPs elaborate strategies of resistance to strengthen their personality and seek a social place for themselves.
The subjects' discourse is fixed on the challenges of education, professional qualification and rehabilitation and work, saying little about health, culture, sports, tourism and leisure. DP elaborate imaginary structures about their material conditions of existence. This results in the replacement of the social inclusion concept by insertion in the job market. This phenomenon reflects the ambivalence that victimizes DP: Despite their potential, these subjects see themselves as different, because they are socialized through a discourse whose meanings carry beliefs and values from non-disabled people. This confirms the assumption that persons who are considered different carry the marks of alterity, which distance them from the social prototype of a given culture. These marks outline their place, their territorial place and lifestyle, and can even put their citizenship at risk.
In conclusion, DP have achieved legislation that guarantees the rights to citizenship, but there are still challenges in the fields of healthcare, education, professionalization and insertion in the job market. For the studied subjects, society does not respect the legislation that protects them. This demands that associations for DP and their associates struggle for their rights, supported on current legislation. Rehabilitation nurses should know the experiences of these subjects and their relatives in order to help them seek out strategies for coping with the problems affecting their inclusion, and also seek support in the guidelines set by Law #3298/99 to work in the rehabilitation process, helping the DP to preserve their functional capacity, compensate the loss of a function or a functional limitation and facilitate social adjustment or readjustment.
1. Brasil. Decreto n. 3.298, de 20 de dezembro de 1999. Regulamenta a Lei n. 7.853, de 24 de outubro de 1989, dispõe sobre a Política Nacional para a Integração da Pessoa Portadora de Deficiência, consolida as normas de proteção, e dá outras providências. Diário Oficial da União, Brasília, 21 dez. 1999. Seção 1, p. 10. [ Links ]
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