Table of contents
Table of contents
2. Definitions of terms
2.2 Sex education
2.2.1 Traditionally repressive sex education
2.2.2 Political-emancipatory sex education
2.2.3 Affirmative or mediating liberal sex education
2.2.4 Individual-emancipatory sex education
2.3 On the understanding of "disability"
2.3.1 The World Health Organisation's definition
2.3.2 SGB IX
2.3.3 Social explanatory approaches
2.4 The term "mental disability"
2.4.1 Difficulties of defining the term
2.4.2 Subject-specific perspectives
2.5 Own working definition
3.1 Conceptual approach
3.2 Identity concept
3.2.1 Stigma, stigmatisation and stigma identity thesis
3.2.2 Identity model according to Frey
3.2.3 Significance of Frey's model for personality development
3.2.4 Destigmatization techniques and stigma management
3.2.5 Interim conclusion
3.3 Sexual identity
3.3.1 Gender identity
3.3.2 Sexual orientation
3.3.3 Interim conclusion on sexual identity
4. Sexuality in general
4.1 Sexual theories
4.2 Sexual development
4.3 Family as a place of socialization
4.3.1 The family as an ecological system according to Bronfenbrenner
4.3.2 Socialization in the family according to Hurrelmann
4.3.3 Sexual socialization in the family
4.4 Importance of sexuality for adults
4.5 Sexuality – a fundamental right
5. Sexuality of people with a so-called intellectual disability
5.1 Sexuality and so-called mental retardation according to sporks
5.2 Differences and possible problems in sexual development
5.3 Sexuality in adulthood
5.4 Sexual assistance and sexual support as a possibility of sexual experience
5.5 Prejudices about the sexuality of people with a so-called intellectual disability
7. Guiding concepts of rehabilitation pedagogy
7.1 Principle of normalization
8. Dormitory and sexuality
8.1 Excursus I: The importance of housing for people
8.2 Current living situations
8.3 Forms of living
8.3.1 Fully stationary forms of housing
8.3.2 Semi-stationary forms of housing
8.3.3 Outpatient living
8.3.4 Interim conclusion
8.4 Limitations of sexuality due to structural conditions
8.5 Studies on self-determination and sexuality in the dormitory
8.5.1 Sonnenberg (2004)
8.5.2 Walter and Hoyler-Herrmann (1987)
8.5.3 Seefeld (1997)
8.5.4 Fegert et al. (2006)
9. Interim conclusion
10. Excursus II: Community Living in Sweden
11. Support for self-determination and sex education guidelines
11.1 Support for self-determination
11.2 Sex education guidelines
11.2.1 General requirements at institutional level
11.2.2 Basic guiding principle
11.2.3 Understanding sexuality
11.2.4 Sex education objectives
11.2.5 Sexual education support and accompaniment
11.2.6 Design of the living space
11.2.7 Sexual education of employees
11.2.9 Sexual education topics
A.1 The bio-psycho-social model of the ICF
A.2 Interactional model of the genesis and process of mental retardation
A.3 The stigma identity thesis
A.4 Modified identity model according to Frey
The topic of "sexuality and so-called intellectual disability" seems to have a special explosiveness in our society, at a time when genetics and prenatal diagnostics are constantly evolving and have made it their task to produce "healthy" and "efficient" life according to their view. One gets the feeling that this again creates more defensive attitudes towards people with disabilities and new barriers in dealing with it are built up, which are difficult to overcome. Looking at the general public, it seems as if sexuality and disability in particular are diametrically opposed to each other, since two topics tabooed by society are placed in one context.
My personal interest in this topic has arisen in particular through discussions with third parties in everyday life. An acquaintance told me about her adult roommate, who desperately wanted to have a child and regularly took contraceptives at the request of her parents, on the grounds that she would become pregnant from it. In this case, the woman was denied information about contraception, and a self-determined decision was suppressed. Through a confidential conversation with an employee in a dormitory for people with a so-called intellectual disability, I learned that this was not a rare case and that sexuality would also be negated in their institution. Through these and other experience reports, I have identified areas in which the sexuality of these people can, in my opinion, receive "special treatment". On the one hand, this can be the case in the family, on the other hand, in dormitories1.
Inspired by the considerations on a social level, I began to consider the pedagogical discourse on the subject of "sexuality and so-called mental disability", which presented itself completely differently. In the meantime, a paradigm shift has taken place within rehabilitation pedagogy, which is turning away from a deficit orientation and which is about promoting the strengths of the individual in all areas of life – this also implies the area of sexuality.
The public discourse deals with the topic of "sexuality and so-called intellectual disability" in the specialist literature, at conferences and congresses. There is a general consensus in the specialist literature that sexuality is also a self-evident basic need and fundamental right for people who are described as mentally handicapped (Walter 2005). It explicitly calls for self-determination in the area of sexuality for people with a so-called intellectual disability. The current discourses, especially sexual education, are no longer about a recognition of sexual needs for the group of persons concerned, but about further topics such as the implementation of ethical rights, sexual assistance and sexual support, parenthood and sexualized violence (cf. Specht 2008, p. 295). Problems are perceived here less in a discrepancy between sexual and intelligence age than in a prevention of sexuality by external factors.
Nevertheless, the implementation of the theoretical discourse in practice is proving difficult. This has been shown to me, among other things, by my research on the present work. In order to gain in-depth insights into the sexual education work of institutions, I asked various institutions for their sexual education concepts. The feedback was devastating, most of my inquiries were rejected with extravagant justifications such as "our clientele is too severely disabled", "we do not need concepts, we do it this way" and "we have none, the Catholic bishop sits on our necks".
This conglomeration of personal experiences and research, the different perceptions of the sexuality of people with a so-called intellectual disability in society and in the pedagogical discourse as well as the apparently existing gap between sex education theory and practice in dormitories were decisive for the research concern of this work.
In my diploma thesis, I will examine the sexuality of people with a so-called intellectual disability, focusing on the life situation in the dormitory. This is a theory-led work, with the aim of creating sexual educational guidelines for pedagogical action in the dormitory, which should enable and support the life of a self-determined sexuality for the people living there. Within the framework of this project, the question "What significance does sexuality have for human development and for personal development for people with a so-called intellectual disability in particular?" will be addressed, as this will constitute the basis for the development of the guidelines. Furthermore, the question is important insofar as the sexuality of people who are described as mentally handicapped is fraught with prejudices in our society and occupies a special position. Another aim of this work should therefore be to make it clear that sexuality is essential for the development and personal development of a person, regardless of whether "disabled" or "not disabled". Here, factors that complicate the development of personality and thus also the development of the sexuality of a person with so-called intellectual disability are to be shown. Overall, this work is intended to contribute to a further de-tabooing of the sexuality of the group of persons concerned and to strengthen their right to a self-determined sexuality in the dormitory.
In the following, I would like to explain the procedure with regard to the question. In order to be able to adequately investigate the central question, chapter two defines the essential terms "sexuality", "sex education", "disability" and "intellectual disability". Since these terms are the basis of this work, they are presented and the relevant definitions are determined. The focus here is on the term "intellectual disability", as it describes the group of people to be examined in this work. By considering the difficulty of defining a term and subject-specific views on "intellectual disability", it will be shown that there is no universal consensus on this term. The chapter concludes with a separate working definition of the terms "intellectual disability" and "disability", in which I will reflect my understanding of disability in particular. I also explain why I have chosen to use the terms 'people with a so-called mental disability' and 'people who are described as mentally disabled' for the group of people in question.
Afterwards, in chapter three, I will deal intensively with the concept of identity. After a conceptual approach, in which different definitional approaches are shown, I will deal with the terms stigma, stigmatization and stigma identity thesis. In this chapter it will be shown which negative attribution processes on the part of society people with a so-called intellectual disability have to face with regard to their identity in general and with regard to their sexuality in particular. In addition, this creates the basis for Frey's subsequent sociological identity model. This concept of identity focuses on the interaction of the individual with the environment. Such a view of identity is important for the personal development of people with a so-called intellectual disability, as it includes the social component of identity formation. It will become clear that people who are described as mentally disabled are caught between personal needs and social norms and requirements in terms of the continuous formation of their identity and the development of a sexual identity. Only by depicting the reciprocity of identity and society can the situation of people with a so-called intellectual disability be depicted accurately and multidimensionally.
However, the fact that stigmatization processes do not have to have a negative impact on people with a so-called intellectual disability will be presented in the chapter "Destigmatization techniques and stigma techniques". With an interim conclusion, which explains the meaning of Frey's concept of identity in relation to the sexuality and personality development of these people, the chapter closes and leads into the sexual identity of the human being. With this specified view of identity and its location in the human personality, the chapter closes.
This is followed by chapter four, which deals with sexuality in general. First, different sexual theories will be discussed in order to make it clear from how many different perspectives the concept of sexuality can be viewed. The representation of different approaches to sexual theory locates sexuality in different discourses and shows that sexuality has been linked to being human in many ways for years. This consideration is necessary for the personal development of people with a so-called disability insofar as – depending on the sexual theoretical perspective – the sexuality of these people is also perceived differently, which can have an effect on daily contact in pedagogical practice. This is followed by the consideration of the sexual development of man in childhood and adolescence, since significant sexual developmental steps take place here, which form the basis for the later sexual experience in adulthood. An analysis of sexual development is therefore inevitable for human development and personality development.
Since these phases of life usually take place in the family, the family will then be regarded as an instance of socialization, with special attention to sexual socialization. The aim is to highlight how this can ideally take place in the family. Afterwards, sexuality in adulthood will be discussed, because even in this phase of life, the sexuality of a person is still shaping up. The chapter concludes with the consideration of sexuality as a fundamental right. This part of the work provides the basis for studying the sexuality of people who are described as mentally disabled. With this basic understanding of sexuality in the regular social context, possible differences with regard to the group of people to be considered can be shown.
In chapter five, the sexuality of people with a so-called mental disability will be analyzed. It begins with the understanding of sexuality according to Paul Sporken, as this has a high degree of awareness in relation to the sexuality of people with a so-called intellectual disability. In the further course of the chapter, differences and possible problems will be pointed out, which can arise in the sexual development in the childhood and adolescence of the respective group of persons. The importance of the family will also be explained here; in particular, external disturbance factors are focused on the personal development of the person who is described as mentally handicapped and a positive development of sexuality. This also applies to subsequent sexuality in adulthood. This is followed by the idea of sexual assistance and sexual accompaniment, which are both possibilities of self-determined sexual experience for adults with a so-called mental disability. The chapter concludes by pointing out prejudices against the sexuality of the group of people concerned, as these represent barriers in relation to pedagogical practice and in interaction with the social environment and people with a so-called intellectual disability.
This is followed in chapter six by a synthesis that makes it clear what significance the previous chapters have for the question of this work on the importance of human development and the personal development of people with a so-called intellectual disability in particular. The following chapter seven deals with guiding concepts of rehabilitation pedagogy. These include normalization, self-determination and empowerment. These principles are to be presented, as they are essential for the realization of a self-determined sexuality for people who are called mentally handicapped.
In chapter eight I come to the analysis of the sexuality of people with a so-called mental disability in the dormitory. After an excursus, which deals with the importance of housing for people, I describe the current living situations of these people with a focus on dormitories on the basis of current figures. This is followed by an overview of the currently existing forms of housing in order to make it easier to make it clear in a direct comparison which characteristics are specific for dormitories. Structural conditions are to be shown in detail, which restrict the personal development of people with a so-called intellectual disability and are diametrically opposed to a self-determined sexuality. With the help of the empirical studies of Sonnenberg (2004), Walter and Hoyler-Herrmann (1987), Seefeld (1997) and Fegert et al. (2006), I will show that the lives of people who are described as mentally handicapped are strongly determined by others and prevent free personality development. The focus here is of course on the area of life of sexuality.
Subsequently, in chapter nine, an interim conclusion is drawn, which turns out the most important findings of the studies on self-determination and sexuality, as well as their limitations in dormitories. An overview of the actual application of the guiding concepts of rehabilitation pedagogy will also be given. With the digression in chapter ten, the model of community living in Sweden will be presented as an alternative to traditional housing systems for the disabled. It is shown that people with a so-called intellectual disability participate fully in social life in all areas of life, which has a positive effect on human development / personality development.
This is followed in chapter eleven by a summary of the most important results so far with regard to the question. Approaches for the support of self-determination in general are shown, as this forms the basis for sexual self-determination. This is followed by sex education guidelines for social work in the dormitory. Finally, chapter twelve provides an outlook in which the most important findings and results of this work with regard to the sexuality of people with a so-called intellectual disability are recorded. In addition to pointing out problem areas, it is discussed which measures can be used to support a self-determined sexuality of people with a so-called intellectual disability.
Appendix I contains schematic representations of some models presented in more detail in the work, which will be pointed out separately in the course. Appendix II lists the literature used as well as a list of some of the laws relevant to this work.
2. Definitions of terms
In order to enable a scientific examination of the topic of the sexuality of people with a so-called intellectual disability, I will explain basic terms of this work in the following. In this context, the central concepts of "sexuality", "sex education", "disability" and "intellectual disability" are presented and limited. A demarcation of the terms and an understanding of the underlying category definitions are important in order to integrate the work into the existing discourse and to determine the field of research to be discussed.
Before sexuality can be treated in connection with so-called mental retardation, the concept of sexuality must be defined in more detail. The current literature on sexology and education emphasizes that sexuality is characterized by its diversity (cf. Ortland 2008, p. 16). Unlike in the 19th century, when the term was first applied in relation to humans and referred exclusively to coitus for the purpose of reproduction (cf. Raithel, Dollinger & Hörmann 2009, p. 281), the term "sexuality" is no longer so limited in this day and age. This is made clear, among other things, by the definition of the American sex therapist Offit:
Sexuality is what we make of it: an expensive or cheap commodity, means of reproduction, defense against loneliness, a form of communication, a weapon of aggression (domination, power, punishment, submission), a sport, love, art, beauty, an ideal state, evil, good, luxury or relaxation, reward, flight, a reason for self-respect, an expression of affection (maternal, paternal, fraternal, or simply human attachment) , a kind of rebellion, a source of freedom, duty, pleasure, union with space, mystical ecstasy, indirect death wish or death experience, a path to peace, a legal dispute, a way of exploring new human territory, a technique, a biological function, expression of mental illness or health, or simply a sensory experience. (Offit 1984, p. 16).
Sexuality can therefore encompass much more than mere genital sexuality. What is decisive is what, for example, defines the individual, a certain cultural circle or different scientific disciplines as the "core of meaning" for themselves (cf. Sielert 2005, p. 38). Sexuality thus fulfils several functions for humans in the present. From sexual science conceptions, four meaningful components of sexuality can be determined, which are connected to each other and mutually dependent: the identity aspect, the relationship aspect, the pleasure aspect and the fertility aspect. The communication aspect also plays a role. In addition to these aspects, which are more likely to be considered positive, sexuality can also contain negative dimensions such as power and burden (for example, sexual bondage or violence) (cf. Raithel et al. 2009, p. 281). Frey provides a definition of sexuality that includes the points of view of identity, relationship, pleasure and fertility:
Sexuality is a life energy that accompanies people from birth to death. In different phases of life, different needs and modes of expression are in the foreground. Gender identity as a girl or boy, man or woman, one's own physicality, contact and relationship design (in hetero- as well as in homosexual relationships), pleasure experience and dealing with fertility are basic topics. Lived sexuality is always also determined by social framework conditions and the individually experienced socialization and biography, for example with regard to gender roles, values and norms, or also the access to information, etc. (Frey 2002, p. 103f.)
This definition emphasizes the self-discovery function of sexuality for humans. In addition, the integration aspect of sexuality into the personality of the human being becomes clear here. It becomes clear that sexuality is a fundamental human need and that it shapes all areas of life. Likewise, sexuality is an essential element in the "formation of identity and the development of personality" of a person (Haeberle 2005, p. 1).
Frey's definition further shows that sexuality is a perennial component in a person's life. Lebenshilfe Salzburg has aptly formulated this fact in its sexual education guiding principles: "Sexuality is an essential feature of man; without sexuality there is no humanity!" (Plaute 2006, p. 507). What is striking about Frey's definition is that the living out and experiencing of sexuality depends on external framework conditions. Thus, sexuality is a lifelong development task, which seems to be located in the field of tension between individual preferences and needs and social requirements. The task of the individual is to develop his sexual identity in this field of tension (cf. Ortland 2008, p. 17). Raithel et al. comment on this issue as follows:
Sexuality has an intrinsic value as a personally responsible, basic human condition, and it requires integration into the entirety of the person. Although this seems to be a completely individual phenomenon, it is not of a purely private nature, but also intertwined in social contexts. (Raithel et al. 2009, p. 281)
The following work builds on Frey's definition of sexuality, as it succeeds in uniting the core themes of sexuality that are essential for the individual in its definition. It shows that sexuality encompasses more than coitus with the aim of procreation. In her consideration of sexuality, she also points out the importance of the social framework conditions, which, especially for people who are described as mentally disabled, prove to be an influential factor with regard to their own sexuality. The role of social conditions with regard to personal development and thus to the sexuality of people with a so-called intellectual disability will become clear in the further course of this work. First of all, I will refer to the concept of sex education, as this is another fundamental concept of this work.
2.2 Sex education
One goal of this work is to create sex education guidelines for social work in the dormitory. That is why I would like to explain in the following what is meant by the concept of sex education. Sielert describes sex education as "an aspect discipline of pedagogy that researches and scientifically reflects both sexual socialization and intentional educational influence on the sexuality of people" (Sielert 2008, p. 39). As a field of research and application, sex education thus deals with the unintentual and deliberate influence on the psychosexual development of humans and focuses on all phases of life in this regard. In particular, processes of emancipation and self-determination are of enormous importance for the sexuality of the individual (cf. Specht & Walter 2007, p. 309).
The concept of sex education may not seem entirely appropriate with regard to adults and older people, but according to Sielert, other terms such as sexual andragogy or sexual anteagogics have not yet prevailed due to too little attention to sexual development in these stages of life and a theory that has not yet matured. According to a more recent understanding, however, pedagogy extends over all areas of life, so that sex education can also be applied to adults and older people. Subject of sex education2 is man as a sexual being dependent on education (cf. Sielert 2008, p. 39ff.). An essential area of responsibility of this discipline in the present can be summarized as follows:
Today, sex education does its part to create a social infrastructure that enables the modern individual to acquire the dispositions and skills necessary for the development of his sexual identity. (Sielert 2008, p. 45)
This means that individuals in sexual education practice are comprehensively supported and accompanied on their way to a self-determined and responsible sexuality. Central topics of sex education include: Body and sex education, relationships, partnership, contraception, desire to have children, sensory and body perception as well as sexualized violence (cf. Specht & Walter 2007, p. 309).
In the following, the four main directions of sex education will be presented. The aim is to make it clear on which of these directions the present work is based. The first three of the following main approaches will be discussed, as these, regardless of their scientific topicality, still form the basis for action of pedagogical staff. These currents can be divided as follows:
- affirmative or mediating-liberal
These positions have developed in the German-speaking world since the 1950s and are to be reproduced in the following shadowy manner according to Raithel et al. Skeptical sex education is not taken into account in most overviews (cf. Raithel et al. 2009, p. 284) and should only be mentioned here for the sake of completeness, since it does not represent a relevant working basis for this work.
2.2.1 Traditionally repressive sex education
Here, above all, traditional values and norms of sexuality are applied. These are supported by the state and the church. In traditionally repressive sex education, sexuality primarily serves to procreate in marriage. The aim of this main sexual education is to control the sex drive through an upbringing reduced to marriage and family capacity. The sexuality of humans is defined here as "endogenous drive-determinant and treated as a biologically conditioned fixum" (Raithel et al. 2009, p. 285). As a result, any form of lust-accented sexuality is suppressed and averted. Children and adolescents are denied their sexuality and attempts are made to avoid confrontation with sexuality. Early childhood sexual shenanim is prohibited, and masturbation is heavily sanctioned.
Characteristic of this form of sex education is also the "mystification and paraphrasing of sexual facts" as well as the "support for responsible love, marriage and family ability" (ibid., p. 285). Sexual abstinence is promoted and supported as well as the preservation of traditional sex stereotypes. Institutionalized sex education is strictly rejected by traditionally repressive sex education, as it represents a mental rape of children and adolescents and/or a stimulation and enticement (ibid., p. 286).
2.2.2 Political-emancipatory sex education
This main direction represents, so to speak, the counterposition to the traditionally repressive sex education. It was created in the 1960s as a response to anti-sexual education. This political position of sex education demands the liberation of the individual from all forms of social coercion and the inclusion of sexual emancipation in social transformation processes (cf. Raithel et al. 2009, p. 286). Sexual and social emancipation are the primary goal of this main sexual education. Oppression, paternalism, role stereotypes and constraints must be dismantled. Likewise, a destigmatization of marginalized groups is to be achieved. Sexuality is a socially conditioned part of human life here. It is regarded as the result of socialization processes and thus determined as learnable. Sexuality has a high priority for the gain of pleasure and thus also for social relationships. This sexually affirmative form of sex education aims to ensure that young people3 can live their sexuality self-determined. The condition for this is a fear-free climate in which one can communicate openly with each other about all facets of sexuality (ibid., p. 287f.).
2.2.3 Affirmative or mediating liberal sex education
This direction represents, so to speak, the middle way of the aforementioned two extreme sexual education orientations. Sexuality is defined as a drive-determined and cultivated area of behavior. Although it is seen as the result of socialization processes, it is also considered to be predetermined by genetic predispositions. Love can only arise when the sex drive has been cultivated and controlled. Thus, the pleasure principle should not be at the center of life. Sexuality is not reduced to the reproductive aspect, but it is handled restrictively by being limited to heterosexuality and the reproductive function may only be performed within a marriage (cf. Raithel et al. 2009, p. 288). With the restriction to
Heterosexuality will maintain bisexuality as an ideal to strive for. Traditional gender roles are handed down instead of supporting an individual development of gender identity.
2.2.4 Individual-emancipatory sex education
This form of sex education is rooted in the political-emancipatory orientation. The focus here is on the individual (cf. Raithel et al. 2009, p. 289). However, it distances itself from a politicization of sex education and focuses on the "individualization of sexual worlds of experience":
Sexuality is determined as meaningful life energy. This means that sexuality is understood as a life energy that is physically, mentally and socially effective in all phases of life, is considered culturally and psychosocially conditioned, is not fixed to genders and includes heterosexual, homosexual and bisexual life forms. Sexuality is understood as an ambivalently occupied part of human life. On the one hand, it is beautiful, pleasurable-passionate, socially caring, identity- and relationship-promoting, but on the other hand it is also painful, painful, identity- and relationship-destroying. (Raithel et al. 2009, p. 290)
This definition makes it clear that sexuality also contains "negative" components that belong to a holistic view of sexuality and are taken into account in this main direction of sex education. The development of sexual identity is of fundamental importance here, it is important to collect sensual body experiences and to experience self-love in order to experience a positive body and to be able to train self-esteem. Any existing blockages of the individual are to be dismantled in order to be able to experience and maintain "sensuality, tenderness and emotionality" (ibid., p. 290).
Central ethical starting positions are the right to self-determination and self-realization, as well as the "respect of one's own person, the partner and the new life" (ibid., p. 290). Characteristic of the individual-emancipatory sex pedagogy is, among other things, the demand for a gender-specific, emancipatory, needs- and experience-oriented youth work (ibid., p. 291). Gender equality is an essential moment of this sexual education position.
The present work is based on the understanding of individual-emancipatory sex education, as it most meets the requirements of a modern and contemporary approach to sexuality. She places the individual, the development of his sexuality and the formation of his sexual identity at the center of her consideration. The sexual education guidelines to be drawn up in this work are to be based in particular on this main sexual education.
2.3 On the understanding of "disability"
In everyday life, the terms "disability" and "disabled person" are used as a matter of course, as if society were in agreement to "know what 'a disabled person' is" (Bleidick 1999, p. 11). Disability is also a central concept in science, but its application must be viewed critically. The term "disability" ignores the individual component, as Fornefeld aptly puts it: "That means there is no such thing as a person with a disability." (Fornefeld 2002, p. 45; Emphasis in the original). Whoever speaks of these forgets that the organic damage as well as its spiritual-mental and social consequences are individually different (ibid., p. 45f.).
Theunissen states that disability is always "normal"4 oriented (cf. Theunissen 2005, p. 12). This sounds absurd, as there is no general consensus on what is actually "normal". Thus, these are attributions of third parties who define "physical or intellectual functional limitations" of other people as disabled (ibid., p. 12). Thus, what people regard as "normal" or "real" is always subject to social change or a certain perspective. For example, different cultures or disciplines have quite different views of what is considered to be disabled. According to Bleidick, it is thus not possible to determine what a disability is, "but only what is considered to be disabled in terms of life-worldly persuasion patterns" (Bleidick 1999, p. 21). Nevertheless, it tries to put the concept of disability into a universal definition:
Disabled persons are persons who, as a result of damage to their physical, mental or spiritual functions, are impaired to such an extent that their immediate life or their participation in the life of society is made more difficult. (Bleidick 1999, p. 15)
Bleidick's classification of disability into mental, physical and emotional impairments is a common form in society. Nevertheless, this definition can only remain relative, since the disability of a person is not a fixed characteristic and it depends on the living environment and the social conditions of a person (see Fornefeld 2002, p. 46). Bleidick himself notes with regard to his definition:
There are four conceptual components that can be considered essentials: 1. The definition claims only a limited scope. 2. Disability is considered to be the result of organic or functional damage. 3. Disability has an individual side that affects the immediate world of life. 4. Disability is a social dimension of participation in the life of society. (Bleidick 1999, p. 15)
This shows that disability is a multifactorial phenomenon. Thus, no definition of disability has a claim to general validity, it always remains relative due to this fact (cf. Fornefeld 2002, p. 46; Cloerkes 2001, p. 8f.). For Cloerkes, this relativity of disability is reflected in the temporal dimension, in the subjective examination, in different areas of life and life situations and in the culture-specific social reaction (cf. Cloerkes 2001, p. 8f.). In the following, three different approaches to the concept of disability will be presented.
2.3.1 The World Health Organisation's definition
The World Health Organization (WHO) developed the "International Classification of Impairments, Disabilities and Handicaps" (ICIDH) in the seventies, which was published in 1980 (see Waldschmidt 2003, p. 93). It arose due to strong criticism of the hitherto predominant, exclusively defect-oriented medical explanatory model of disability (cf. Arnade 2006, p. 211). Through it, a change of attitude could finally be brought about, it was possible to at least relativize the "equation of disability with health damage or as a synonym for chronic illness and permanent defect" (Waldschmidt 2003, p. 93). With regard to the classification of disability, the WHO divided it into the three consecutive components "impairment", "disability" and "handicap":
- Impairment: Damage or impairment, loss of substance or change of a psychological, physical or anatomical structure
- Disability: Disability or impairment resulting from the injury
- handicap: Disability or social disadvantage resulting from the impairment (see Fornefeld 2002, p. 49)
The social consequences of health impairments were emphasized more strongly. Nevertheless, this definition received criticism. She was accused of ultimately not having overcome a deficit-oriented view. Thus, although this model contains a social dimension, it is seen as a "mere effect of biological-organic damage" (Waldschmidt 2003, p. 94) and is not perceived in its own dynamics. A disability is therefore always regarded as a direct consequence of a medical pathology (ibid., p. 94).
The WHO took note of the criticism of the ICIDH and began in the nineties with the revision of the classification system. After several test phases and evaluation studies, the old model was replaced by the "International Classification of Functioning, Disability and Health" (ICF) at the 54th General Assembly of the WHO in 2001. A model was created5, which enables multifactoriality, causality and dimensionality (cf. Waldschmidt 2003, p. 94f.). In the ICF, the units of the classification are not persons, but situations, this means that the health situation of a person is now described with "health-related domains" (Lindmeier 2007, p. 165). When describing the situation, the contextual factors are always taken into account, these are divided into environmental and personal factors. Thus, a person's ability to function and disability are always seen as a dynamic interaction between the health problem and the contextual factors.
This difference can also be seen on the linguistic level. In the ICIDH, "disability" was used to conceptualize the aspect of disability, while in the ICF, the term "disability" is used as an upper hand, which describes the overall context of the negative interaction between a person with a health problem and their contextual factors. It is now more of a relational understanding of disability; an attempt was made to unite the medical model and the social model, i.e. two diametrically opposed models. In order for this to succeed, the WHO at the ICF refers to a significantly expanded "bio-psycho-social" approach to disability (see Lindmeier 2007, p. 165). The aim is to achieve a synthesis that allows a coherent view of the different ways of thinking about health at the biological, individual and social level (see WHO 2005, p. 25).
It should be emphasized that the components of functionality and disability can be used in a double way. According to Lindmeier, their use can be made on the one hand for the identification of problems, such as "damage, impairments of activity or impairments of participation, summarized under the generic term handicap" (Lindmeier 2007, p. 166; Emphasis in the original). On the other hand, they can also be used to show "non-problematic (for example, neutral) aspects of the state of health and the conditions associated with health (summarized under the generic term Functionality)" (ibid., p. 166; Emphasis in the original).
The ICIDH has joined with the ICF "from a classification of the 'consequences of disease' to a classification of the 'components of health' further developed" (ibid., p. 166; Emphasis in the original). In addition, the ICD is a deficit- and resource-oriented view of disability (see WHO 2005, p. 5). Of particular note in this model is the concept of participation, hereby it is recognized that "the difficult participation in the life of society represents the 'actual disability'" (Lindmeier 2007, p. 166; Emphasis in the original) and the "disability problem" is above all a social exclusion problem in Germany (ibid., p. 166).
Finally, it must be noted that the ICF is controversial in the pedagogical literature. Among other things, it will be discussed to what extent the new model really represents an improved approach compared to the ICIDH and to what extent it can actually be used as an original health-related medical explanatory model for pedagogical disciplines (cf. Biewer 2002).
2.3.2 SGB IX
A further examination of the term "disability" is provided by the ninth Social Code "Rehabilitation and Participation of Disabled Persons", most of which came into force on 1 July 2001. This law has initiated a comprehensive reform of disability assistance. The legal definition of "disability" is given in SGB IX, paragraph 2, paragraph 1:
People are disabled if their physical function, mental ability or mental health are highly likely to deviate from the typical state of old age for more than six months and their participation in life in society is therefore impaired. They are at risk of disability if the impairment is to be expected.
It is essential that the impairments last longer than half a year. In addition to the medically diagnosable impairments, other criteria are important for the legal determination of disability. On the one hand, the deviation of the norm laid down by society with regard to age and the difficult participation in life in society.
What is striking about this definition is that, in order to be considered "disabled", a person's state of health must "deviate from the condition typical of old age". But what does a typical condition look like for old age? How is this measured? These are questions that cannot be answered on the basis of this definition of disability. SGB IX, paragraph 2, paragraph 2, determines "severely disabled" as follows:
Persons are severely disabled within the meaning of Part 2 if they have a degree of disability of at least 50 and they have their domicile, habitual residence or employment in a job within the meaning of §73 lawfully within the scope of this Code." The degree of disability is classified by a medical opinion, which means that the medical profession determines what is meant by "severely disabled". This definition is important because the second Pragraph SGB IX explicitly deals with the special regulations on the participation of severely disabled people. Despite all its shortcomings, the Ninth Social Code is an important step for the "persons concerned", as it aims in paragraph 1 at "self-determination and participation in life in society".
2.3.3 Social explanatory approaches
Since 1980, international scientists with disabilities have been developing social explanatory approaches as a counter-model for deficit-oriented medical models. There are several social models in the literature, which, however, cannot be presented individually in the context of this work. The models differ in detail, but they have many similarities. My concern is to reflect these similarities, the basic ideas of the models, so to speak, at this point.
The social explanatory approaches are characterized by the fact that they see the main problem of people who are described as disabled not in an individual impairment, but in a disability from the outside. Unfavorable social conditions in the form of prejudices and limited access to public participation are the (reasons for a) disability and not a "human deficit" (cf. Priestley 2003, p. 26ff.). The "problem" is thus anchored in society and is not attributed to the individual (cf. Hermes 2006, p. 20). Further evidence of a social construction is the various evaluations of disability that can be found in different cultures, societies and historical epochs. Priestley's opinion is that there is no causal link between an impairment and "becoming disabled." Thus, it is possible that two people who have similar medical diagnoses experience their impairment significantly different from each other. This in turn is due to the respective social and societal framework conditions of the individuals (cf. Priestley 2003, p. 25f.). To illustrate Priestley's theory, an example from Hermes will be used here:
Imagine two wheelchair users who have the same type and extent of disability, e.g. have paraplegia. Both use an electric wheelchair. One lives in a city where the environment is relatively barrier-free. There is an accessible metro with elevators, shops with ramps or without steps, sunned curbs, accessible cinemas and theaters. The other wheelchair user, with the same medical starting conditions, lives in the countryside. There, the curbs are not lowered, there is no low-floor bus and only shops that can be reached via steps. For the woman in the countryside, social participation ends in front of her house. (Hermes 2006, p. 19)
This makes it clear what massive influence the social framework conditions can have on the disadvantage of people who are described as mentally disabled. According to the social explanatory approaches, the social and societal conditions are the reason for the disadvantages, and by no means the individual. This is also the reason why these approaches do not refer to the individual, but to the whole group (cf. Hermes 2006, p. 19).
2.4 The term "mental disability"
Since the present work deals with the sexuality of people with a so-called intellectual disability, it makes sense to deal with the term "mental disability" in advance. An investigation of the significance of sexuality for the personal development of people with a so-called intellectual disability presupposes an agreement on the understanding of the term and the object of investigation of "intellectual disability". Only if the term is clarified in advance and the various immanent implications are clarified can the result of the investigation be returned to the discourse and possible guidelines for dealing with the group of people concerned be sensibly established. For this purpose, after an examination of the general difficulty of a term definition, subject-specific perspectives are to be presented, since the term "intellectual disability" is used by different professions.
2.4.1 Difficulties of defining the term
The term "intellectual disability" has been controversially discussed for several years. Greving and Gröschke even describe it as "the most problematic basic concept of curative and special education, which is not exactly poor in terms of problem concepts and special education" (Greving & Gröschke 2000, p. 7). The term was introduced in 1958 by the parents' association of the "Lebenshilfe für das geistige behinderte Kind e.V."6 (cf. Leue-Käding 2004, p. 25; Fornefeld 2002, p. 44). The intention of the founding members was to describe the mental and intellectual impairments of their children in such a way that it does not lead to the devaluation of the whole person. An orientation was provided by the terms "mental retardation" and "mental handicap" commonly used in the English-speaking world (cf. Fornefeld 2002, p. 45). The new definition served to replace previously customary pejorative formulations such as "moronic", "idiotic" or "imbezil" (cf. Biewer 2004, p. 294).
However, this focus on intellectual impairments in today's world is found to be one-sided (cf. Fornefeld 2002, p. 45). In the meantime, an attempt is being made to minimize the deficit-oriented view with the help of additional general categorical attributions by prefixing the concept of disability groups of persons and, for example, by talking about "adults with an intellectual disability" (cf. Neuhäuser & Steinhausen 2003, p. 11). Even the term "person with intellectual disabilities" is semantically a problem. If one chooses this terminology, one equates", according to Fornefeld, "intellect" and "cognition" with "spirit", and this would mean that one describes the mind of man as disabled and thus denies him his "personhood" (cf. Fornefeld 2002, p. 50).
The addition of 'intellectual disability' is rejected by most of the persons concerned. In search of an alternative, the "Netzwerk Mensch zuerst, People First Deutschland e.V." has arrived at the definition of "people with learning difficulties" (cf. Niehoff & Hinz 2008, p. 113) and tries to transport it to the public (cf. Biewer 2004, p. 295). In this regard, Biewer notes that "learning difficulty" is a very broad term, since in Germany it is associated with people who are classified as learning disabled, rather than with people who are classified as mentally handicapped (ibid., p. 295).
The Bundesvereinigung Lebenshilfe für Menschen mit einer geistige Behinderung e.V. also discusses the term "intellectual disability", such as at the "TeilhabeKongress 2003" in Dortmund or at a general meeting in September 2006 in Marburg. But for many members of Lebenshilfe, the term "learning difficulties" as a possible alternative does not have enough separation in relation to people who are not disabled. The specificity of the circle of people would be lost. Among other things, there could be a risk that supporting resources would be eliminated and the willingness to show solidarity would be reduced (cf. Niehoff & Hinz 2008, p. 114). With the renaming of its journal "Geistige Behinderung" to "Teilhabe" in January 2009, the Bundesvereinigung Lebenshilfe für Menschen mit geistiger Behinderung e.V. has turned away from the controversial formulation, at least on this level (cf. Mensch zuerst – Netzwerk People First Deutschland e.V. 2009a).
Speck sees the problem of the term "intellectual disability" less in the word content than in its social function. Thus, there is a danger that the group of people in question, by trying to find their own definition for them, will be socially devalued, disadvantaged and excluded (cf. Speck 2007, p. 136). He sees this as the reason for the controversy and states: "In order to avoid additional harmful stigmatizations, a replacement term is now being widely sought." (Speck 2007, p. 136).
The term "intellectual disability" thus contains evaluations or devaluations for the persons concerned, the current way of looking at this term is also predominantly from a deficit-oriented point of view. This is also clear from the definition of the German Education Council, which dates back to 1974:
A person who is so impaired in his overall psychological development and his ability to learn as a result of organic-genetic or other damage is considered to be mentally handicapped that he is likely to need lifelong social and educational help. Cognitive impairment is accompanied by those of linguistic, social, emotional and motor development. (Deutscher Bildungsrat 1974, p. 37)
Although this definition is very old, it is still widely used at present. It meets with criticism above all because it "can only claim validity in comparison with fictitious norms" (Ziemen 2002, p. 27). With regard to the concept of "intellectual disability", there are also proponent of more radical positions who turn away from any conceptual provisions. Feuser (1996) and Ziemen (2002), for example, argue that "intellectual disability" does not exist because it is socially constructed (cf. Ziemen 2002, p. 36) and has come about through a phenomenological-classificatory process (cf. Feuser 1996, p. 18).
So there are numerous opinions about what distinguishes an "intellectual disability" and what does not. The uncertainty regarding this term also has an impact on the frequency indication regarding people with a so-called intellectual disability in the population. The proportion of these people in the total population in Germany is estimated to be between 0.45% and 0.5%. In terms of numbers, this means that in Germany about 400,000 children, adolescents and adults are classified as mentally handicapped. What is exciting here is that the number of students who attend a so-called special school has been 0.6% of a year for some time. These two statements diverge, which is due to the inaccuracy of the terminology (cf. Kulig, Theunissen and Wüllenweber 2006, p. 126).
In conclusion, it can be stated that "mental disability" is a complex phenomenon, which means it is "diversely composed of different components and components, which are also intertwined in each individual in its own way" (Speck 2005a, p. 48). Thus, there is neither "the mental disability" nor "people with an intellectual disability" (Straßmeier 2000, p. 58; Emphasis in the original).
2.4.2 Subject-specific perspectives
Since there is no universally valid definition of "intellectual disability", the term "intellectual disability" should be presented on the basis of subject-specific perspectives in order to clarify what different professions understand by it. It lists the characteristics by which people are classified as mentally handicapped.
18.104.22.168 The psychological view
In the following, the psychological view of mental retardation is discussed, in particular the sub-area of psychological diagnostics is presented. The task of psychological diagnostics is to record the impairments and disorders that a "damaged brain" can have on the cognitive, motor, emotional and social development and learning of humans (cf. Fornefeld 2002, p. 56). For a long time, intellectual disability was understood here under the category of "mental disorders" primarily as intellectual disability. According to the classification scheme of mental disorders (ICD-10), this means:
A state of delayed or incomplete development of mental abilities; particularly impaired are skills that manifest themselves in the development period and that contribute to the level of intelligence, such as cognition, language, motor and social skills. (Dilling & Freyberger 2008, p. 273)
A decrease in intelligence can be detected with the help of intelligence diagnostics. On the basis of an determined intelligence quotient, it is determined whether there is a reduction in intelligence or not. Binet and Simon developed an intelligence test procedure in 1905 (cf. Speck 2005a, p. 56). In 1912, Stern introduced the measure of a person's intellectual performance, the intelligence quotient (IQ) (cf. Dorsch, Häcker, Stapf & Becker-Carus 2009, p. 478). As a fixed reference value of IQ, the average intelligence value was set at 100. One is classified in the category "mentally handicapped" with an IQ of less than 70 (cf. Speck 2005a, p. 56).
As an illustration, I will present at this point two classification models of "mental disability" from an intelligence diagnostic point of view. This includes, on the one hand, the model of mental disability according to ICD-10 (International Classification of Mental Disorders of the WHO):
- slight intellectual impairment: IQ range from 50–69, mental age: 9 to under 12 years
- moderate intellectual disability: IQ range 35–49, mental age: 6 to under 9 years
- severe intellectual impairment: IQ range 20–34, mental age: 3 to under 6 years
- most severe intellectual disability: IQ range below 20, mental age: under 3 years (cf. Dilling and Freyberger 2008, p. 276)
and the AAMD classification (American Association on Mental Deficiency)7 ) by IQ values:
- mild (mild) mental retardation: IQ range from 52–67
- moderate (moderate) mental retardation: IQ range from 36–51
- severe mental retardation: IQ range from 20–35
- severe (profound) mental retardation: IQ range below 20 (cf. Speck 2005a, p. 59)
Speck notes with regard to these methods that they merely reflect values that serve as orientation (ibid., p. 56). The determination of a low IQ value alone cannot be sufficient to diagnose an "intellectual disability". Beart, Hardy, and Buchan, for example, include the American Psychiatric Association's (APA) Diagnostic and Stastical Manual of Mental Disorders in their remarks. Here, in addition to an IQ value of less than 70, there are also impairments of adaptive functions from at least two of the following areas: Communication, self-sufficiency, housing, social skills, participation in public life, self-determination, functional cultural techniques, work, leisure, health and safety. Another criterion is the persistence of impairments in these areas until the age of 18 (cf. Beart, Hardy & Buchan 2005, p. 48).
In principle, this is a deficit-oriented psychological view, as it refers exclusively to the lack of cognitive performance. The term "intelligence" is already problematic here, because it is difficult to define and there is no clear scientific definition (cf. Theunissen 2005, p. 21; Fornefeld 2002, p. 58). This in turn has the consequence that test procedures are based on different conceptions of intelligence and determined intelligence levels can only ever remain relative. In addition, it has been found that the comparison with standard values – i.e. an average intelligence – is insufficient. After all, a person develops individually, according to his personal possibilities and – as Beart et al. have already noted – the influences of his social and cultural environment (cf. Fornefeld 2002, p. 58f.). Overall, the question arises as to the effectiveness and applicability of intelligence tests in people with a so-called intellectual disability (Theunissen 2005, p. 21). Despite the criticism pointed out here, Fornefeld argues that a change is taking place within psychological diagnostics from selection to promotion diagnostics. Accordingly, the focus is no longer placed exclusively on the deficits of a person, but his abilities and performance possibilities are increasingly focused and recorded taking into account his social environment (see Fornefeld 2002, p. 59).
22.214.171.124 The medical point of view
Another discipline that deals with "intellectual disabilities" is medicine. It is based on a deficit-oriented approach. Its aim is to uncover a dysfunction (cf. Neuhäuser 2000, p. 32) and to develop therapeutic measures taking into account the individual life situation (cf. Fornefeld 2002, p. 51). Classification is also one of its areas of responsibility. On the basis of the latest research findings, medicine describes clinical syndromes and categorizes them. In the medical perspective, the physical basis is fundamental. Often an organic damage can be found, which has an indirect or direct effect on the brain (ibid., p. 51). Damage to the brain is of central importance, as it can affect different psychophysical functions (cf. Speck 2005a, p. 53). As a result, the entire personality of the human being, his thinking, his feelings, his perceptions, his actions and his behavior can be influenced (cf. Fornefeld 2002, p. 51). Thus, the organic damage can lead to different disorders (clinical syndromes), which can occur pre-, per- or postnatal8. These include, for example:
- prenatal: Malformations of the central nervous system, gene mutations, chromosomal abnormalities, exogenous causes
- perinatal: Birth traumas, diseases of the newborn
- postnatal: Inflammation of the central nervous system, cranial brain traumas, brain damage (cf. Meyer 2003, p. 5)
This excerpt makes it clear that an "intellectual disability" can also occur in the course of life as a result of brain damage, for example, and is not always a congenital phenomenon (cf. Fornefeld 2002, p. 54). Studies confirm the influence of biological and genetic factors in the development of "mental retardation", but according to Zerbin-Rüdin only 5-7% of the occurring mental disabilities are actually inherited (mostly due to metabolic defects) (cf. Zerbin-Rüdin 1990, cited Bacon 2005a, p. 54). From an educational point of view, the search for the cause is often criticized:
In the medical model or understanding, the disabled child as a sick person suffers from a disturbed process, which externally leads to visible symptoms and syndromes, which are diagnosed and categorized as essential parts of the person. Treatment and therapy then try, as part of a deterministic causality thinking, to penetrate through the symptoms to the underlying causes and to heal or influence them. (Fischer 2008, p. 21)
From a pedagogical point of view, among other things, the support diagnosis is more important in order to ascertain the strengths (and weaknesses) of the child. From a medical point of view, Neuhäuser emphasizes on the one hand the "causality need" of the parents, for which the cause of the mental disability is of enormous importance, on the other hand he emphasizes the importance of etiology and pathogenesis for special treatment measures (cf. Neuhäuser 2000, p. 36).
Although these are only of secondary importance for the pedagogical process, they are relevant insofar as the knowledge of the causes of the damage and the resulting impairments of a person is important for the creation of suitable support and education measures. In addition, they play an important role in all decisions and actions regarding the integration of people with a so-called intellectual disability (see Fornefeld 2002, p. 55).
126.96.36.199 The sociological view
From a sociological point of view, "the mutual connection between intellectual disability and society" (Fornefeld 2002, p. 23) is in the foreground. Of particular note here is the attitude of society towards people who are described as mentally handicapped. Various topics such as integration, inclusion, stigmatisation or the role of parents and siblings are dealt with (ibid., p. 23). Within sociology, the social reality of people with a so-called intellectual disability is a specific object of research in the "sociology of the disabled"9 (cf. Markowetz 2008, p. 238).
For sociology, two questions are essential with regard to its scientific considerations: "What do we mean by disability and who is a disabled person?" (ibid., p. 240). In the sociological context, disability is defined as "permanent and visible deviation in the physical, mental or emotional sphere" (Cloerkes 2001, p. 7). In addition, there is a negative attributed value from the outside. According to the sociological view, a person is disabled "if, firstly, there is an undesirable deviation from expectations, however defined, and, secondly, if the social reaction to him is negative" (ibid., p. 7).
In his work "System Heilpädagogik", Speck presents various sociological theories that relate to disability. First, he deals with dependency theories, in which one assumes a relatively static model of society. Here, the disability and the person with a disability are always represented as a one-sided dependent quantity. This one-sided dependence results in consequences such as social distancing, social insuffence, minorities and disfunctionability (cf. Speck 2003, p. 217). The person with a disability is "the stranger, the unknown, the completely different" (Ferber 1972, quoted from Speck 2003, p. 218). It is denied public access, which means that it cannot contribute to the preservation of social order. Thus, it does not benefit the market economy and does not contribute to the maintenance of group relationships. He does not benefit from income, social rank and personal esteem, the person with an intellectual disability is on the sidelines of society (see Speck 2003, p. 218).
As a second sociological variant, which operates with the term disability, Speck presents the interactionist theories. These deal with the attribution of deviant behavior, the stigma theory, virtual limitations in the social context and disability as a social class (cf. Speck 2003, p. 220ff.). The hallmark of the interactionist theorem is that disability is primarily not a biological-medical state, but is attributed to humans out of social expectations. In the tradition of symbolic interactionism, this attribution is "bound by prejudices, norms and standards of value to the interaction of the defined and the defined and is expressed symbolically and linguistically" (Bleidick 1999, p. 36). Interactional attributions take place daily in life. As soon as we perceive a reaction that does not correspond to our norm in interaction with a human being, this person deviates from our norms; it is no longer "normal", but is labeled as "different" or "disabled" by us (for example, the deaf person who does not react to our response). In this case, "being disabled" is not ascribed to the personality of our counterpart, for example in the form of a fixed property, but understood as a social category in interaction (ibid., p. 33).
The labeling approach specifies the symbolic interactionism. Thereafter, a label is symbolically attached to the devalued person, which can lead to typification, stigmatization, the assignment of a forced status and asylum in a special institution. Bleidick cites deviance as the main characteristic of negative attributions of characteristics of a person with a disability. He summarizes by this "the deviation from prevailing norms of custom, morality, performance, appearance as well as the resulting 'deviant behavior'" (ibid., p. 36).
For sociology, disability is "the result of a social devaluation process that negatively influences the social participation opportunities of disabled people" (Markowetz 2008, p. 240). The excerpt of the sociological explanatory approaches presented in this chapter makes it clear that social components in particular are responsible for the emergence of disability and intellectual disability in society. Of great importance for representatives of the sociological perspective is the integration of people with disabilities. In their self-conception as "participation science" they work "socially integrative-emancipatory" (cf. Markowetz 2008, p. 241)10. Rehabilitation for people with disabilities only makes sense for them if it takes place comprehensively and seamlessly as social integration (ibid., p. 241).
188.8.131.52 The pedagogical view
The scientific perspectives presented so far make it clear which complex phenomenon "intellectual disabilities" are. Each discipline focuses, as shown, on a different aspect. The pedagogical view expands the previous discourse around the heterogeneity of the group of people with a so-called intellectual disability. Here, the individuality of a person plays an essential role (cf. Schuppener 2005, p. 26; Straßmeier 2000, p. 58). This is considered in a multifactorial context. Other factors, such as medical syndromes and impairments, environmental factors, external influences and subjective learning needs, are included in the pedagogical examination (cf. Schuppener 2005, p. 26). "Mental retardation" is thus seen as a "normal (usual) variant of human forms of existence" (Speck 2005a, p. 69) and not as a mental disorder or illness (cf. Meyer 2003, p. 25). Thus, it is only one human form of existence among many.
In the course of time, a change of understanding has taken place within pedagogy, away from the image of the human being, which is considered different due to a deficit, towards a way of looking at the competences of man (cf. Straßmeier 2000, p. 55). It is essential when dealing with individuals with a so-called intellectual disability to consider their dynamic interactions with the environment, since their disability does not represent a "fixed state", but changes and develops in interaction with the environment. Or to put it the other way round: "Social reality, including education, is under the interacting influence of the reality of intellectual disability" (Speck 2005a, p. 70). Speck has developed the "Interactional Model of the Genesis and Process of Mental Disability" in this regard.11. With his model, he makes it clear that "mental disability" is by no means rigid and immobile, but that it is influenced by psycho-physical damage, the person and their environment and is therefore subject to change. Speck notes regarding his model:
It also seems important to us to realize that it is not the organic-genetic damage itself that constitutes the mental disability, but that this psycho-physical deviation merely represents the trigger of a personal social process that leads to a certain manifestation of mental disability. (Speck 2005a, p. 70)
The model also shows that the person who is described as mentally handicapped is always also a person, an authority with its own values and actions as well as needs. In social interaction, the individual develops his own self.
If all the influencing factors listed in the figure are included in the pedagogical task, this is to be regarded as "three-dimensioned", according to Speck, since it refers to the "self-building subject, to the physical (material) damage to be taken into account and to the environment at the same time" (ibid., p. 71).
With reference to the pedagogy of today, it must be emphasized that it is about a "strength-oriented view, which in the sense of an environment-oriented perspective centrally takes into account the immediate living environment and the social-interactive influences in the context of the genesis of a disability" (Schuppener 2005, p. 28). The goals of pedagogy for people with a so-called intellectual disability are an individual realization of life (cf. Fornefeld 2002, p. 75), the leadership of a self-determined life, as well as integration and inclusion in society (cf. Straßmeier 2000, p. 60).
In my opinion, it is important to emphasize that educators and pedagogues today (only) support people with a so-called intellectual disability in these tasks, because pedagogy has also for a long time "made the mistake of trusting these people too little" (Straßmeier 2000, p. 60). These people can achieve what they want with reliable strategies (ibid., p. 60). Of course, people with a so-called intellectual disability differ just as much as other individuals in their "learning opportunities and needs" (see Fornefeld 2002, p. 67). At this point, it is important to emphasise the individual competences that must be taken into account when supporting the respective person. For the pedagogical work with people with a so-called intellectual disability, Speck has highlighted three central orientation theses:
- Intellectual disability is considered a normal (usual) variant of human existence and requires an individualized and specified education in the sense of helping to learn and form identity
- The education of people with intellectual disabilities is primarily oriented towards the general educational requirements, values and norms
- The specification of the pedagogical is based on the special individual needs and possibilities as well as on the social conditions and requirements for effective support and social participation. (cf. Speck 2005a, p. 69; Emphasis in the original)
1 I am deliberately limiting this statement, as there are certainly exceptions here too where there are positive developments on the part of the family and home institutions with regard to the sexuality of these people. However, the focus of this work is on the remaining problem areas that need to be uncovered.
2 Although sex education plays an important role in the life of an individual, it is "as an aspect discipline of educational science and profession [...] currently still in the consolidation phase" (cf. Sielert 2008, p. 49).
3 In sielert's above-mentioned sexual education definition, the influence on "the human being" is addressed. That is why I believe that all of the objectives of the different main directions mentioned here should be related to individuals. After all, there are also adults who, for example, can still discover talking openly about sexuality or being allowed to live it independently.
4 Fornefeld comments on the concept of normality as follows: "Because what is normal, or normality? It is only a generality, a majority, not a reality. It is and remains a construct, connected with the dream of man to be able to eliminate everything deviant and disturbing." (Fornefeld 2002, p. 79; Emphasis A.S.)
5 For this, see Figure A.1 "The bio-psycho-social model of the ICF" on p. 168.
6 Today known as "Bundesvereinigung Lebenshilfe für Menschen mit geistiger Behinderung e.V.".
7 In the 1980s, the AAMD was unnamed AAMR – American Association on Mental Retardation. In 2007, it was renamed AAID – American Association of Intellectual and Developmental Disabilities.
8 A detailed list of all clinical syndromes can be found in Neuhäuser and Steinhausen 2003, p. 107ff.
9 The "sociology of the disabled" is a scientific field of work and research within curative education or it sees itself as the basic science of curative, special, rehabilitation and disability pedagogy (cf. Markowetz 2008, p. 238f.).
10 For further detailed sociological explanations, for example, reference should be made to Cloerke's "Sociology of the Disabled" from 2001.
11 For this, see Figure A.2 "Interactional model of the genesis and process of mental retardation" on p. 169.