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At the beginning each participant represented briefly the rehabilitation system of his country. We were also talking about special teacher training in different countries. After this we started to discuss central terms of the workshop such as independence and self-determination. Therefore the chair persons gave a short introduction to this theme.
What does Self-Determination means?
What does Self-Determined Living stand for?
What is the meaning of Personal Assistance?
Our contribution focuses on the concept of self-determined living for blind and visually impaired people as the independent living movement note 1 understands it. First we explain the concepts of "self-determination" and "personal assistance" and contrast them with the terms "outside determination" and "dependence". Last we distinguish them from the term "independence".
Self-determination as the independent living movement understands it is an idea, is a principle. Self determination is a term that defines itself in opposition to outside determination. Self-determined living was developed by handicapped persons as a new prospect for the lives of people with disabilities. It is seen as a hopeful measure against outside determination, exclusion and discrimination. This concept has two sources: Firstly, it was developed in groups. In these self-help groups handicapped people met to critically consider their own situation and their (disabling) environment. These are groups of the political movement of handicapped people. Secondly, self-determined living has been realized in the ways in which individuals actually live their lives. Thus, self-determined living is part of a particular sense of self. Self-determined living has to be regarded on the basis of an individual's real life situations as well as their biography and the general societal framework. Only a basic understanding of self-determined living makes it possible to recognize the significance of this idea for the specific lives of individuals. To fully comprehend the idea of self-determined living, one would have to regard it in its historical development. However, today we won't take such a broad approach.
We will introduce the concept "self-determination" with its aims and principles. In this context it is necessary to identify conditions that prevent the realization of this concept and thus call for a change. In the following, I'll present a method of realizing self-determined living and life planning - that will mean a life with personal assistance.
Self-determination of people with disabilities has to be understood as a principle. It's based on the premise that people with disabilities discover for themselves how they want to live with their disabilities in this society and what they expect from it.
Ottmar Miles-Paul (1992b, p. 11f; trans. JC), a visually impaired member of the German independent living movement describes the basic principle of self-determination of people with disabilities. He explicitly distinguishes it from the terms integration and normalization. He asks who has to pay, who has to work for the integration and whose idea of normality serves as the basis of the desired normalization.
This means: "Structures which create and sustain dependence" have to be replaced by "projects and advisory services that promote self-determination." The services and rehabilitation systems for handicapped people have to be reformed or discontinued. "Giving people with disabilities the choice among a number of acceptable possibilities, consumer control over different services for their needs, equality and self-determination and above all empowering them to participate in the life of the community must be the maxims for such social work with disabled people and politics that follow our needs and may serve as a model for the future".
In order to better understand the objectives and principles of self-determination we think it is indispensable to identify conditions that may serve as examples of what prevents self-determined living.
Self-determination as a concept was developed in opposition to discrimination and outside determination. Outside determination means that things are determined "over someone's head". It is decided for this person etc. Outside determination makes self-determination impossible.
Outside determination has many faces. This becomes apparent in areas such as:
These examples show that there is a multitude of conditions that determine the lives of individuals from outside. All of which prevent people with disabilities from living self-determined lives and making self-determined decisions for the future. An attempt to change this situation has to pursue the goal "that each individual should find the optimum amount of self-determination for him- or herself and that each has the opportunity to realize his or her own ideas" (Interessenvertretung Selbstbestimmtes Leben 1991; trans. JC).
Self-determination as the independent living movement understands it does not mean independence, but making decisions that are independent of institutional, material and personal pressure.
Another relevant condition which prevents self-determined living is that of dependence. For "our society still values people less, who need the help of other people to lead their lives, describes them as dependent, pities and patronizes them. Those who provide such help, as paid helper or as volunteer, are forced into or voluntarily assume a patronizing role. The help provided often results in a relation of dependence which concentrates all power in the hands of the helpers and makes those who need help dependent and helpless" and precludes a self-determined life (Assistenzgenossenschaft Bremen n.y., n.p. ; trans. JC). In this context, Frehse (1993, p. 8) contends: "Disability/handicap is not a medical problem, but a problem of unequal power distribution" [trans. JC].
The perspective on disability that the independent living movement represents is not limited to determe that people with disabilities are subject to higher social dependency. The goal is to reach the highest possible degree of self-determination over one's own life and its also demand to eliminate architectural and structural barriers and to give people with disabilities control over institutions that serve them.
In order to reach the highest possible degree of self-determination it is necessary to break up existing relations of power between helpers and those who receive help. This can be accomplished by giving those who receive help extensive opportunity to organize their lives in a self-determined way, that means to organize their lives independent of institutional or organizational constraints - instead of giving the helpers power over them as is still common practice.
A highest possible degree of independence constitutes a norm which determines socialization and pedagogical action. It requires of people at a certain age to organize their lives as independently and autonomously as possible. In everyday usage independence is associated with attributes such as standing on ones own feet, being able to provide for oneself, but also with being adult, having one's own system of beliefs, in other words it is associated with autonomy. For people with disabilities this implicit "compulsion to do it yourself" often requires an enormous additional effort. This prevents them from being able to determine for themselves whether or not they want to do things themselves or whether or not they want to rely on help. Ottmar Miles-Paul (1992b, p. 11f; trans. JC) explicitly distinguishes the basic principle of self-determination of people with disabilities from the term independence. He says "so far [hardly anyone] has thought about what additional effort us people with disabilities have to put up with to practice the excessive amount of independence or autonomy that everyone praises as so desirable without accepting personal help" (Miles-Paul, 1992b, p. 11; trans. JC).
We have seen that it is very difficult to differentiate between the terms independence and self determination. Often we help by calling "independence", "doing it oneself".
The disability movement developed the concept of personal assistance as a method to oppose outside determination. It's also a method against outside determined professionalism, dependence and the compulsion to do things yourself. With the help of assistance, people with disabilities that need help are turned into "self-determined disabled employers". These employers organize and coordinate the required help. In this way benevolent helpers become "personal assistants," who are paid by their employers proportionate to the work they do or the personal assistance they provide. But the employees can also be dismissed by the disabled employers (cf. Miles-Paul 1992).
Personal assistance is thus a necessary (yet not a sufficient) condition for self-determination in the lives of those people with disabilities as well as the elderly who need care and help. Personal assistance encompasses "every form of personal help, that enables those who receive it to organize their lives in a self-determined way. Personal assistance includes areas of permanent care, household help or medical care as well as communicative help such as sign language interpretation for people with hearing impairments or reading services for people with visual impairments. It may require a high degree of professional knowledge and skill or no specific qualification at all" (Assistenzgenossenschaft Bremen n.y., n.p. ; trans. JC).
The concept of authorization (competence) is at the core of the idea of assistance. Those who depend on help, the assistees, are authorized to make all relevant decisions. On the basis of their employment authority (Personalkompetenz) they select their assistants, employ them and can also dismiss them. Supervisional authority (Anordnungskompetenz) means that assistees instruct their assistants and supervise their work. On the basis of their financial authority assistees act as employers and pay their assistants accordingly. Organizational authority makes it possible for the assistees to assume responsibility for how and when they use assistants and thus enables them to attain self-determination in their everyday lives as well as on the job (cf. Rothenberg 1997, p. 45ff).
In summary, this means that the assistees determine who will assist them, a man or a woman, with what qualification, for which tasks. Assistees determine who does what at what time and how they do it. Personal assistance thus constitutes a kind of help that enables or guarantees a self-determined and independent life. However, compared to other forms of help, personal assistance also requires a considerable amount of time, organizational effort and in some cases even financial resources of the assistee. People with disabilities thus need a much higher degree of authority, capability and knowledge than people without disabilities to be able to lead self-determined lives (cf. Drolshagen n.y.; Steiner 1996).
After this we discussed the meaning of self-determination and independence in the education and rehabilitation of blindness and low vision. The chair persons described the German situation.
The principle of self-determination as the independent living movement understands it has so far had virtually nearly no impact on publications in the pedagogics of blindness and low vision. This is true for publications in school education as well as in questions of adult education and rehabilitation. Frank Laemers for example shows that up to 1993 only two of 350 contributions at German conferences of educationalists of blindness and low vision dealt with the subject of "self-determination." He contends: "How much impact self-determination and other neglected areas of research will have on the pedagogics of blindness and low vision will be seen in future". At the 32nd congress of the pedagogics of blindness and low vision in 1998 only one contribution dealt with self-determination. At the 33. congress in 2003 there were 3 contributions which dealt with self determination or assistance.
Similarly, topics such as "dependence on family members or friends" and "outside determination" are ignored in publications of the pedagogics of blindness and low vision. In contrast, work in the field frequently deals with questions of educating or enabling people with disabilities to become independent in the sense of "do it yourself". In analogy to general pedagogics, independence in the sense of do-it-yourself is presented to children, adolescents and adults as the singular precondition for reaching the desired goal of an autonomous personhood. The 1999 issue of the annual of the German association for the blind and visually impaired for example says: "All things are useful that help people with visual impairments to deal with their everyday lives as independently as possible". Alternative strategies are not mentioned.
However, what does it mean to educate people for independence?
In this context Metz argues in 1993 that the pedagogics of visual impairment overemphasizes the aim of educating for independence. As a consequence education is restricted to the development of age-appropriate skills and to the development of training programs. Klee (1998) raises the same criticism in relation to past practices in orientation and mobility training. For example orientation and mobility training in the past dealt exclusively with operational skills such as the techniques of walking with a seeing escort, body protection techniques, or different techniques for using the cane. The concepts had developed methods to teach people with visual impairments skills that would enable them to live as independently as possible. Independence was therefore equated with "do-it-yourself."
Heule and Schnurnberger contend that the ideal that such training was based on was a human being which functions effectively and independently.
In the meantime, as Klee shows by the example of orientation and mobility training, the contents and aims of the rehabilitation training have changed. An holistic approach has replaced the purely skill-oriented concept. In the centre of this new approach is the individual with his or her individual experiences and individual thinking and emotions in the different contexts of his or her life. Consequently in the present teaching the various techniques of orientation and mobility are merely a means to an end and not an end in itself. These developments make sure that orientation and mobility training is embedded in a general concept of social learning.
Other aspects of training have changed as well: Fußgänger et al. show, that in principle, independence cannot be equated with doing everything oneself. It rather means to be able to take the responsibility for decisions, how to deal with the special needs. These decisions can also include using adequate support services for those areas of everyday life that would require too much effort or time or which could not be dealt with at all without help. It is important that - from the point of view of the educationalists - the decision to use services or personal assistants is based on a realistic self-assessment. This means, whenever it is possible, tasks have to be done by the visually impaired persons themselves. Their individual preferences are no criterions for decision.
These remarks are not meant to negate the positive developments within the pedagogics of blindness and low vision. Independence or do-it-yourself are not regarded as the only suitable strategies for organizing the lives of people with visual impairments any more. This does not mean, however, that the problem of realizing the need for help is sufficiently solved and requires no further discussion. Do it yourself or do it the self-determined way with services or assistants are still in no way considered as equally acceptable alternatives between which individuals can choose autonomously, depending on how they want to organize and plan their lives. Furthermore, satisfying the need for help with personal assistance has so far not been discussed at all. Until now there still exists a clear hierarchy in favor of "do-it-yourself". Do-it-yourself is regarded as the precondition for attaining autonomy.
To prevent any misunderstanding, it is necessary to emphasize here: we are not arguing against teaching skills or techniques that enable people with visual impairments to accomplish everyday tasks by themselves. Instead, we are arguing against the priority of independence and do-it-yourself in the pedagogics of visual impairment. This priority takes away the opportunity to choose between alternative strategies. Therefore it must become an aim of the pedagogy of visual impairment to teach adequate skills for dealing with the special needs both in the area of independence as well as in the area of using services or personal helpers. As a result all strategies of dealing with the special needs are to be regarded as equally good and it must become an aim of the teaching strategies to enable visually impaired persons to choose between this alternative strategies.
The members of our workshop first discussed the opportunities and the risks of self-determination and independence.
The members of our workshop agreed that both strategies have advantages and disadvantages. Therefore the visually impaired persons have to decide which strategy they want to deal with in certain situations. The participants discussed that to reach the aim of enabling visually impaired persons to choose between alternative and equally regarded strategies of dealing with the special needs an extension of the curricula at school and university is necessary. The extension of these curricula applies to the whole spectrum of supporting children, youth and adults with visual impairments. The chairpersons explained that in Germany some developments to change these curricula can be seen.
Related to the situation of German pupils with blindness and low vision some changes and developments can be recognized. For example in Northrhein-Westfalia the draft of guidelines, which was written in 2001, says that visually impaired pupils should learn to decide, which daily living tasks they want to do on their own and which tasks they want to deal with using personal assistants. These guidelines further recommend creating an environment, which enables pupils with blindness and low vision to become as self determined and independent as possible. The differentiation between self-determination and independence and the permission to deal with personal assistance require a development and a change of the currently offered support as well as of the currently taught strategies.
A prerequisite to reach this or similar developments is to change the curriculum of the training of all persons who will support persons with blindness and low vision. Their curriculum is to extend to the aspects of self-determined living and dealing with personal assistance. These aspects must become a part of their curriculum as well as living independently and teaching daily living skills.
The university of Dortmund tries to translate these demands into their teacher-training program as well as into the diploma course of studies. For example it is a compulsory part of study for all students who want to become a teacher to take part in seminars which deal with different topics of self-determination. In these seminars for example we talk about the history of the independent living movement; we discuss the different conditions, which prevent persons with disabilities from living in a self-determined way; we talk about the advantages and disadvantages of doing tasks on one's own and dealing with personal assistance; we discuss the different roles which teachers carry out when they either teach independent living skills or when they support the pupils in deciding for themselves how to deal with their special needs - sometimes by doing tasks by themselves or in other cases by dealing with personal assistance. We want to start a project next year in which university students and teachers from a school for visually impaired pupils offer a course in which pupils with blindness and low vision get familiarized with the ideas and strategies of self-determination and the skills of dealing with personal assistance.
To make clear that extensions like this at school and university are necessary the chair persons presented their small survey.
On the basis of interviews conducted, we will discuss how people with visual impairments organize their lives. In this context it is especially significant to identify the strategies with which they realize their need for help. With reference to the ideas presented above, we are also interested in whether they have integrated the claim made by the pedagogy of visual impairment that "doing things oneself has primacy over self-determined living" in the way in which they organize their lives and to what degree they have integrated it.
We do not want to burden you with lengthy methodological considerations. Briefly: This contribution draws on a sample of 21 interviews conducted on the basis of semi-standardized interview guides. Thus the following analysis of the interviews does not claim to be representative and does not yield conclusions supported by quantitative data, but it clarifies the claims made in the first part of the paper and gives suggestions for further considerations.
In choosing the interviewees, we strove for a balance between the number of blind and visually impaired participants. Categorization in one of these categories was based on how they categorized themselves.
Eleven interviewees are blind and ten visually impaired, eleven are female (seven of whom visually impaired and four blind women), ten are male (three visually impaired and seven blind men).
So far only persons of employable age have been interviewed. With the exception of one homemaker and mother all have a job or study at the university (for further information cf. Drolshagen/Rothenberg 1999, p. 261).
The strategies of realizing independence that are presented in the following have the aim to prevent any need for personal help. They are not used separate from each other but are interdependent. Individuals also do not equally aim to be able to do things themselves in all areas of life. Rather, some of the informants combine the strategy of "do-it-yourself" with strategies to realize their need for help as we present them in chapter 3.2. Strategies such as "do-it-yourself by increasing effort", "do-it-yourself by using aids", "do-it-yourself by managing without" and "do-it-yourself by quality reduction" constitute the major strategies of "do-it-yourself".
A major consequence of the effort to attain independence that needs to be mentioned is the strategy of "do-it-yourself by increasing effort." Eleven of the informants speak about this strategy and state that "do-it-yourself" for them means more effort. Still five of them opt against using help by others and to meet the norm of independence by increasing effort. This group exclusively consists of people with visual impairments.
But because of this [do-it-yourself], of course it is much more effort and things sometimes take a lot longer. (trans. JC)
The other persons (four blind and only one visually impaired) who point out the aspect of effort when talking about "do-it-yourself" do not accept the norm of independence for themselves in those cases, in which it is linked with an excessive amount of effort. In such cases they react not with increased effort but with the use of alternative strategies to meet their need for help, such as assistance, friends/family members or service providers.
I try to do everything myself whenever possible, and when I do this I try to be as fast as everyone else, and when I realize it is impossible, I practice for a long time or make up all kinds of tricks to be able to do it, to compensate, and when that is impossible, well, then I call on help. (trans. JC)
Five blind and four visually impaired interviewees also emphasize the use of aids as an important possibility to attain independence.
That one has the possibility to do everything. Well, if we take that to refer to my studies, that there are aids, that one does not depend on all kinds of people, for example here with the scanner that one does not always depend on someone to read aloud. (trans. JC)
Three of the informants (two visually impaired and one blind) attain independence exclusively in the area of leisure time by reducing or adapting their own wishes and needs to that which they themselves can do and thus by managing without that which they cannot do by themselves.
I have my hobbies, as I said doing a bit of sports, and that I can do by myself, at least the kind of sports I do, those one can do by oneself. [...] I would rather ride a bicycle or participate in ball games [...]. (trans. JC)
Another strategy to meet the norm of independence consists in sacrificing a good or highest possible quality. However, only two visually impaired women employ this strategy.
Well, I would say, I am my own assistance, and of course, well I don't mean to say that I do everything the right way, it is, well, the quality then is, one does also demand that. Ehm, it goes from little things, when I miss a title on the screen that is also printed there, or things like that. It goes from there, it's not perfect, that's true. (trans. JC)
In summary, one can so far say that all interviewees regard independence - as the pedagogy of visual impairment demands it - as an important objective. They specify a number of reasons for their chosen strategy such as "outing is not necessary" or "it does not mean a change of strategy". On the other hand they say that there are "not enough financial resources" to do otherwise or that there is a lack of "support in looking for assistants".
To attain these objectives the informants name a number of different strategies. The fact that mostly visually impaired interviewees fall back on these strategies is understandable, since their individual ability to see enables them to compensate their impairment or disability by an increased effort in much more cases than it would be possible for blind people. We could find no indications that the ability to do things oneself in principle enables the use for example of the help of others without a feeling of dependence (cf. Cory 1990).
The blind participants in this study increasingly include other strategies to meet their need for help. They use service providers or personal assistance or fall back on friends/family members when "doing things themselves" requires too much effort or is not possible at all.
We mention the reasons named by the (5) interviewees (1 severely visually impaired and 4 blind) who have chosen the strategy of using personal assistance exclusively in areas related to their studies or to their job. The better quality of work and the less time and energy needed are important for their choice and all emphasize their special relationship to their assistants, a relation which is not at all marked by dependence.
Only four of the blind and none of the visually impaired informants consciously use taxicabs or a household help to reduce their own work load or to save time, but using this strategy implies on the other hand an exceptional case and luxury.
In the last part of our workshop we discussed consequences for the education and rehabilitation of blindness and low vision.
In the last part of our workshop we were developing ideas and opinions regarding the following questions.
Which skills should pupils learn relating to self-determination? What do they have to learn about themselves, about their special needs and about their environment?
The participants stated that pupils have to learn or to improve
Note 1: The term "independent living movement" is somewhat misleading in our context. Our argument rests on the distinction between independence ("Selbständigkeit") and self-determination ("Selbstbestimmung"). Better to call it "self determined living" or "autonomous living".
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