A Society for All, including
Partially sighted people (PSP)
The vision of the EBU-Commission
"Activities of Partially Sighted People"
Berry den Brinker & Harry Geyskens
EBU Commission Activities of Partially sighted people
Work plan subgroup 1 & 2
November 15, 2001
1. Introduction
In a 'Society for All', every citizen has the right on equal opportunities to participate fully in society without being discriminated on grounds of race, gender, religion or disability. . In most parts of Europe, this society does not exist for PSP.
A person is considered 'partially-sighted' when he or she cannot, after eye correction, read, travel and communicate normally. Partial-sighted people (in short PSP) need optical and often electronic low vision aids. When these low vision aids are not sufficient, PSP have to rely on tactile and auditory information when participating in society. Moreover, since these compensations are not completely sufficient, PSP often face a permanent loss of their capacity to participate fully in society and suffer emotional reaction connected to this loss.
Most partially sightedness is related to a loss of the central retinal functions, caused by diseases like diabetes, glaucoma and macular degeneration. As a consequence, these people are not able to see details, and thus may be called 'detail blind'. People with detail blindness are still able to move around in a familiar environment. Most PSP are elderly people and thus have major problems in coping with the new situation. The elderly PSP have problems in learning to use low vision aids, and also in learning to use tactile and auditory information to compensate for their lost visual functions. Moreover, the loss of visual functions often coincides in elderly people with other disabilities. Even a mild loss of visual functions may lead to a severe handicap as the elderly persons have little capacity to compensate for the loss of the visual functions.
Apart from the visually impaired elderly people a lot of persons suffer from other distortions in the visual system. A good example is Retinitus Pigmentosa. This illness causes a progressive loss of peripheral vision leaving a small central visual field with a so-called 'tunnel vision'. As consequence, these people may suffer a real handicap to move around and to carry out a lot of daily living activities. This form of visual impairment is very confusing for sighted people as people with tunnel vision are often able to read with their residual central vision.
In Europe the situation for PSP is far from ideal now. Today, there is an increasing demand in our visual oriented society on the visual functions of their participants. PSP have not the means to cope with this situation.
At present only partial support is available for PSP in their struggle for full participation in society. Measure taken for blind people or often not accessible for PSP or are not adapted to their ability to solve their problems in a visual way. As a result, most PSP don't find their way to rehabilitation programs, and they do not join the unions for visually impaired people. This is especially the case for elderly people with milder forms of visual impairments. This ire conclusions from recent epidemiological studies in The U.K., The Netherlands and Finland, all European regions with a high standard of services for visual impaired people. For more information about epidemiological studies see the report 'Partially 'Sighted People and Blind People in The Netherlands', that is written 1998 under the authority of 'The Netherlands Federation of Blind and Partially Sighted'.
The EBU represents the interests of both blind and PSP. Our question is now, 'How the EBU and her participating organisations can promote 'A society for All' for PSP in Europe through activities on local, regional, national and supra national level ?'
The answer is not easy. There are major differences in opinion in the various European countries how people should cope with their handicap and how they could be helped in doing this. Moreover, the wealth in the countries is to low in some countries constraining the possibility to support disabled people. As a result, major differences can be found between European countries in the way PSP are supported in participating in society. Moreover, even within countries major differences can be found. In some countries like Italy, Germany and Spain PSP can only profit from the measures for visually impaired people when they manage to be classified in the category of blind and severely PSP. This situation is not ideal as a major category of PSP is excluded from services.
It is clear that the situation of PSP has to be improved and that the EBU
should play a prominent role in these matters on the basis of the activities
of this commission. We, as members of this commission have to think about the
best way to integrate the activities of the EBU, its participating organisations
and other organisations outside the EBU that are involved in the interests of PSP.
In the EBU, we have to be aware that we all come from different parts of Europe
and thus have different experiences support for disabled people. We have to be
aware of the danger that we may force people our own solutions. Our solutions
are the result of historical facts and cultural differences that cannot easily
be copied to other parts of Europe. In some countries, we mentioned already Italy,
Germany and Spain, the measures taken for blind people are, in our eyes very good.
We have to withstand the temptation to copy a system developed for the Blind into
a system for PSP, as insufficient means will be available for the much larger
group of PSP. So therefore we wish we would be creative in our commission in
thinking about this problem. We present now a short analysis of the means that
are available to gain a society for all and conclude with three proposals.
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2 Measures to enforce the rights of disabled people
2.1 To what extend are PSP disabled?
In the past, special measures for the disabled people were mainly introduced to meet the individual needs. These needs include specialised medical services, the provision of technical aids, training in the use of technical aids, and economic support for those who cannot access the labour market. These measures developed until so far, originate from the traditional view that a disability is defined as an observable physical, mental, sensory or psychological deviation from normality caused by disease, trauma or another health condition. As a result of these medically defined conditions, a person with disabilities experiences functional limitations, some of which can be prevented by medical interventions or compensated for by way of aids or rehabilitation, while others result in permanent restrictions of life activities.
However, we reject a complete causal relationship between individual impairment and disability, as propagated in the 'medical models'. We see a disability also as the product of the failure of the physical and social environment to take into account the needs of particular individuals or groups. Therefore, In many cases we see the disadvantages disabled persons experience as a form of injustice, which requires a legal and political response.
This view is reflected in the definitions of disability as advocated by the international disability movement. A Disabled Person is an individual in their own right placed in a disabling situation, brought about by environment, economic and social barriers to that person, because of their impairment(s), cannot overcome the imposed barriers in the same way as other persons. These barriers are all too often reinforced by the marginalizing attitudes of society. It is up to society to eliminate, reduce or compensate for these barriers in order to allow each individual to enjoy full citizenship, respecting the rights and duties of each individual.
In the light of this new approach to disabilities, new collective measures have been developed to prevent individual impaired people to become disabled. A good example of a collective measure is the 'Design for All' principle for designing the public environment. Such environments have no physical barriers making them accessible for as many categories of impaired people as possible.
What do these general principles and ideas mean for the position of PSP? Many of the services for blind and almost blind people are not necessary for the majority of PSP in the case where the public environment and information has been made accessible according to the Design for All principles. More attention should be given by the EBU to develop and apply such general principles. However, this does not imply the absence of a need of individual measures. Many PSP require optical and electronic low vision aids, and special training to learn to use these aids. So the next problem is to define which PSP have the right to claim these services.
In general, the definition of legal blindness and partial sightedness leans upon the measurement of visual acuity and visual field. It is clear that the values adopted for the legal definitions are different in the various European countries. A solution would be to adopt the point of view of the WHO. However, when we consider objective situation of the daily life of PSP, it is obvious that those measurements do not express the needs and abilities of the people concerned. In fact, measurements of the visual acuity reflect a single visual function under standardized (optimal) conditions that do not represent the complexity of visual perception in daily life.
For example, the ability to "see" can be very different under different luminance and contrast levels for people suffering photophobia or night blindness. In other words, according to the ideas of Lea Hyvärinen, it is better to determine the needs of rehabilitation, optical aids and any kinds of special services for PSP on the basis of an evaluation of functional vision.
In this perspective, a PSP is a person for whom the reduced vision affects one or several of the following activities:
- orientation and mobility;
- activities of daily life;
- communication;
- maintenance of any vision tasks.
It is clear that the evaluation of the visual functions in these tasks is not only dependent upon the visual acuity, the field of view and the light conditions, but also upon the ability to understand and use low vision aids. In other words, there is no 'one to one' relation between visual acuity and field of view on the one side and services and low vision equipment on the other side. Services should be based on the evaluation of the personal needs and not exclusively on medical diagnostic values.
In France, an evaluation of these visual functional tasks forms the basis of the access to services for visually impaired people. In other words, It is not the visual acuity, but the need to get support to do essential activities that determine the (medical) access to services.
For the EBU this means that everyone suffering full participation in society as a consequence of a visual impairment, should belong to the interest group of visually impaired people for which special measures are to be developed.
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2.2 Design for All
General rules and measures are designed to guarantee that 'the public space' is accessible for as many people as possible. The public space can be made accessible for all, that is for wheelchairs, mothers with children, blind people, PSP, elderly people, by forcing architect to take into account certain technical measures. This kind of rules can be applied, with minor differences, in many countries.
Such rules can be developed for all aspects of daily life, including transport systems, the minimum space inside houses, the accessibility of public buildings, etc.
Relatively many ideas exist for people with physical problems in mobility and mobility of blind people. Although it is very clear the visibility of the built environment inside and outside buildings is important for PSP, little regulation has been developed for this large group of citizens.
There are exceptions like in France where tourist sites where made better accessible for PSP. In Lausanne in Switzerland, to name another example, all public staircases are clearly visually marked in order to prevent accidents for PSP and elderly people.
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2.3 Individual measures for disabled people
General measures, in the sense of 'Design for All', are not always sufficient
to participate fully in society. For those who need individual aids and services
special measures are necessary to make these aids and services available.
These measures include, medical service, the description of low vision aids,
rehabilitation programs to learn to work with low vision aids, etc. To finance
these services, a variety of systems have been developed in the past. In France
for Example, medical services and rehabilitation programs are mainly financed
by the social insurance (as for all other disabled people). In some countries special organisations are available for the distribution of equipment for blind and PSP (France, Norway). Such organisations may have their own policy in distributing low vision aids independent of the wishes of the individual users of equipment. As a result of discontent about the prescription system of equipment user organisations promote a more influence of the individual handicapped user. A relative new system to foster more influence of handicapped people is the 'client related budget'. A personal budget enables the disabled person to buy the services and equipment without the interference of other organisations. Experiments in . In Belgium and The Netherlands the regulations on financial support of disabled people are in a continuous process of change to optimise the services. In The Netherlands disabled people can buy services with a client related budget for job-integration programmes.
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2.4 Income measures
If the measures in category 1 and 2 are not sufficient to enable disabled people to participate sufficient in society to get jobs, measures are needed to guarantee an adequate income. It is clear tat on this level of measure major differences exist for visually impaired people. In countries like Germany, Italy and Spain relative good regulations are available for the income of blind people.
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2.5 Improving public awareness of the situation of PSP
Last but not of least importance, is to improve the awareness, knowledge and acceptance of PSP by the general public. In contrast to wheel chair and white cane users, the general public has little knowledge and even less respect for the confusing behaviour of PSP. It is difficult for the general public to understand that some PSP need a white cane and, at the same time, can read a newspaper without spectacles. It is also confusing for sighted people that other PSP, moving around without a white cane, cannot read the headlines of newspapers but don't want or are able to read Braille.
Although the people have simpatico feelings for disabled people such confusing experiences contribute to a misunderstanding and suspicion of the behaviour of people with a visual impairment, a firm basis for a fear of and bad communication with PSP. This fear, on its turn, frustrates other measures taken to improve the situation for PSP.
The Society has a the duty to accept disabled people as normal human beings with there particular specificities. On the other hand the disabled people and their organisations have the task to inform society on every aspect of disability and handicap.
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2.6 The implementation of measures to enforce the rights of disabled people
The basic rights of individuals are laid down in general principles on a worldwide level by the United Nations and on a European level by The European Council and to a lesser extend by .The European Union.
The countries that have signed these fundamental rights, (should) have worked out these rights in laws and regulations which may vary depending upon the legal system in each country, and historical and cultural factors. Depending on the political and the financial situation in each country, these laws are worked out in concrete measures and regulations that directly influence the situation of the individual citizens and the organisations that represent them. Finally, depending upon the enforcement of law and regulations in each country, the political situation and public opinion, the individual citizens are able to claim the enforcement of their rights.
To improve the situation of PS in Europe we have to think about the kind of right, laws and regulations to be implemented or improved, and how these goals can be achieved. So the first step is to think about the rights laws and regulations to be improved, the topic of this chapter.
Within Europe measures are implemented mainly in the second category (individual needs) and third category, (income measures). Moreover, most measures for visually impaired people are related to blind and almost blind people and thus not always appropriate for the majority of PSP with milder forms of loss of visual impairments. Most PSP live in a visual world and like to stay in that world in contrast to many severely visually impaired people.
Most PSP emphasize the need for measures in the first category, that is, measures to make the public space and information more accessible through 'A Design for All' approach.
Inside the European Community, the EDF is very active on the accessibility of public areas, transport and information. The EDF stand for the European Disability Forum that lobbies to enforce anti discrimination legislation in Europe. However, these legislations on supra national level has to be worked out on national, regional and local level. It is important that the EBU on the one side feeds enough information to the EDF to improve the anti discrimination laws for PSP at an European level, while on the other side, stimulate the participating national organizations to work out these rights in concrete national, regional and local measures that effect the daily life situation of the individual PSP.
At all three levels, a lot has to be done for PSP. At the European level (EDF) the rights of PSP has to be worked out in more detail. Most have needs in category 1 and 2. In category 2 they need low vision aids, mostly optical but also electronic low vision aids likes CCTV magnifiers. As most are elderly people special training is required to work with these aids. Moreover, as reading with these aids cannot be sustained for long periods, talking books have to be available on a bigger scale. Since most PSP are elderly people, this switch to auditory information for reading requires a major shift from habits. Low vision aids and compensatory solutions cannot replace all that has been lost by the visual impairment. Often low vision trainers have to teach the PSP to cope with the new situation and the emotions that result from the loss of visual functions.
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3. Proposals
The proposals to be presented at the next General Assembly, have to be worked out in close co-operation with other commissions (Human and Social Rights, Women's commission, Mobility, etc).
3.1 Definitions of visual impairments
We propose the EBU and its member organizations to use the six class categorization of the World Health Organization (WHO) to describe the various forms of visual impairments.
Categories of Visual Impairment by Who's Definition
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Visual acuity
with best possible correction
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Visual field
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1 Moderate low vision
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Less than 0.3 -->=> 0.1
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2 Severe low vision
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Less than 0.1 -->=> 0.05
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3 Profound low vision
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Less than 0.05 -->=> 0.02
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--> Less than 20°
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4 Near-total blindness
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Less than 0.02 -->=> 0.01
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--> Less than 10°
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5 Total blindness
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0
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9 Unknown (other)
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The WHO applies another global distinction between 'low vision' and 'blindness'.
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1 - 2 Low vision
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Less than 0.3 -->=> 0.05
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3 - 5 Blindness
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Less than 0.05
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Less than 20°
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There are two reasons not to use this global distinction:
- The second categorization includes less people. Visually impaired people in category 9 of the first classification are excluded in the second classification.
- The terminology is confusing because PSP in category 3 of the first classification are not called blind, while the same people are called blind in the second classification.
In those cases where it is not practical to distinguish six categories of visual impairment we advise to make a distinction of at most two categories: people who are completely blind and people who have residual visual functions and thus are called partial-sighted. However, since we are convinced that all visual impaired persons have the same rights, that is to participate fully in society and to be fairly helped and compensated for the extra (financial) efforts, we prefer the term 'visually impaired persons' as the only class of member of our organizations.
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3.2 Classification of interests of visual impaired people
We propose to classify the protection of interests of visually impaire persons in two categories:
- Actions against disabling situations in society;
- Action to give visually impaired people a fair chance to participate fully in society by striving for the right to be supported in attaining full citizenship.
Ad 1. This class of actions include everything related to 'Design fo All 'The WHO definitions are important to define the group for which design for all measures and individual services and support have to be provided.
Ad 2. A fair support for visually impaired persons is based on an evaluation of the individual needs and abilities and not on a medical diagnoses.
Functional definitions are very important to be able to determinate the kind of individual services and support.
The other proposals below are a practical work out of these two general activities of our organizations to be done in the present mandate period or in the future
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3.3 A taskforce on the accessibility of buildings for PSP
PSP are less disabled if they could find their way in buildings that are build according the rules of 'Design for All'. Although a lot of knowledge exists in science and in interest groups, such guidelines do not exist for PSP. The rules are not about tactile guidelines, but about the visual conditions (lighting) inside building and the visibility of important transfer points like staircases, lifts and signposts. The rules should also include norms that promote stability in walking by prescriptions about the visible texture on floors, walls and ceilings, To develop this rules, an EBU taskforce will start. This taskforce, consists of members of our and related commissions, extended with experts on visual perception of PSP. It is the task of this taskforce to develop guidelines that shall be used by architects in all countries according to the principles of 'Design for All', and especially concerning the needs of PSP.
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3.4 Low Vision Conference
The position of PSP in society is permanently in danger. In that respect, the situation for PSP is similar as the position of women in the. With a visual impairment. We propose to organize a Low Vision conference on a regular basis, for example every four years preceding the EBU General Assembly.
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3.5 All communications about visual impairment should mention the position of PSP
In decisions and proposals from EBU commissions the interest of PSP ought to be mentioned explicitly, as is already the case for the visually impaired gender and age groups.
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3.6 The EBU
The interests of PSP must be enforced on local levels. The EBU should promote the activities of local, regional and national organizations for visual impaired people to make them more effective in implementing the general principles that have been developed on the European level into concrete measure that help the individual partially-sighted citizen.
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3.7 The EDF
The interests of PSP must be enforced on a supra national level. The interests of PSP must be enforced better. The EBU should co-operate more with other organizations that represent disabled people like the European Disability Forum. More information about the 'Design for All' needs of PSP should pass to the EDF. A concrete example is a better set of guidelines for accessible information for visually impaired people.
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