University of Edinburgh
 

Empower '97: International Conference on Deaf Education

Paper 1: Equity and Rights; an International Perspective

by Fernando Diniz
Head of Department, Department of Professional and Community Education, Moray House Institute of Education

Supplementary Material

I am delighted to have the opportunity to participate in this important event and thank the organisers for inviting me. The title of the Conference is an intriguing one and conveys a sense of high expectation, commitment to a set of values and indeed a way of working. So let me start by saying that, for me, "empowerment" is best achieved through "action" in which each person present has the opportunity to actively participate, feels valued and has a voice. Such a process of "empowerment" started at the opening event of the Conference and I wish us to continue in this frame of mind over the next couple of days.

My task is to assist in setting an agenda aimed at combatting the social exclusion of disabled persons in society in general and education in particular.

1 Equity & Rights: Combatting Social Exclusion of Disabled Persons

"Human rights" perspectives are now firmly part of the agenda in the quest for social justice for a range of marginalised and oppressed groups. In a recent report entitled "The State of the World's Children 1997", UNICEF declared: "The idea that children have special needs has given way to the conviction that children have rights, the same spectrum of rights as adults: civil and political, social, cultural and economic." (p9)
These convictions are expressed in the UN Convention on the Rights of the Child (1989) which affirms children's legal rights to highest attainable standards of healthcare (Art 24), to express views (Art 12) and receive information (Art 13) to their own identity and dignity (Art7) to play (Art 31) and protection against exploitation and abuse (Art 34), amongst other rights.

This stance is equally evident in international policy developments in the areas of disability, race and gender, though much still needs to be done to achieve similar levels of legal protection - certainly in the UK and Europe.

This Conference is designed to reflect a commitment to issues of social justice and human rights for disabled persons. It is not about "whether" or "when", but "how" and "what" we can do individually and collectively in this struggle.

In the main part of my presentation, I will identify a number of dilemmas (challenges) which arise from current discourses about the nature of disability and related education provision. To guide our plenary discussions on Sunday afternoon, I will highlight a few questions and invite you to reflect on these and a number of practice measures contained in recent UN, UNESCO and EU initiatives.

First, I wish to offer a brief overview of theoretical approaches underlying the notion of "social justice" and "human rights".

2 Ideas of Social Justice & Human Rights

What do we mean by "social justice" or "human rights"? These questions are central to our deliberations for there are competing definitions of social justice operating in special education and unless issues of ethics and politics of education are acknowledged explicitly, educators cannot hope to tackle the dilemmas and contradictions of educational practice.

The way in which we approach questions such as these depends on our understanding of these ideas within some form of theoretical framework. The function of theory is to lend coherence and consistency to any debate about and a model against which such notions might be measured. Within my presentation, it is possible to present no more than a cursory overview of the 3 main theoretical models which are of relevance to our discussion.

First, it has to be acknowledged that both are highly contentious ideas. They are not timeless nor static categories but are contextually determined, represented and interpreted, eg are there different notions of "justice" in different societies?

2.1 Liberal-democratic or Liberal-individualistic Model

Social justice is conceptualised variously in terms of either "fairness" or "resource distribution". John Rawl's (1972) theory (A Theory of Justice) has been particularly influential in most western societies. He emphasised the notion of "fairness" and suggested two principles to account for social justice: individual freedom, ie political liberty, freedom of expression, conscience and thought, personal integrity and inviolability. These freedoms are classified in International law as "fundamental rights".

distributive justice, ie equal distribution of primary social goods, unless it can be demonstrated that an unequal distribution would make the advantaged and disadvantaged better off in their pursuit of liberty. In terms of internal law this is much more problematic because of differing views of the relationship between civil and political rights versus economic, social and cultural rights. The US and UK have taken the view that the latter are dependent upon positive programmatic implementation (positive affirmation) whereas the individual freedom is immediately enforceable and justifiable! This is an argument about the relational value of rights and not about their existence.

2.2 Market Individualistic Model The libertarian model is particularly relevant to our discussions given welfare changes in many countries. Nozick (1976) argued for the existence of the minimal state to act as a guarantor of certain basic rights (eg safety, to property, liberty to do as one pleases so long as it does not violate the self-same rights of others). Such a minimal state should not be involved in redistribution of social and economic justice since this would impinge on the liberties of the individual. This approach has had a profound impact on services in the UK and US and is characterised by the view that there is no such thing as Society.

2.3 Social Democratic Model This model has its origins in the work of Marx and emphasises the notion of humans as social beings, that is, it is the notion of "social" in "social justice" that needs to be highlighted. This is expressed as the involvement of co-operative communities, exercising human rights for all to a better life. Market individualism and the generation of procedural criteria are not sufficient for determining social and educational justice. In international law, this is expressed as Third Generation Right or solidarity rights (influenced by 3rd World political struggles for more equitable treatment). Essential to this is an understanding of "power", "oppression", "democracy" and people's active engagement in decisions about their lives, ie "empowerment".

3 Disability & Education

The education of disabled children - currently formally referred to as "special education" or "special needs education" (EU, Salamanca) - remains a hotly contentious issue. This is reflected in continuing tensions between competing paradigms, doubts about its efficacy, accountability and costs and challenges from disabled people about the segregated schooling and social discrimination. Professionals, too, have not always felt supported; they are either caricatured as self-appointed authorities on what is euphemistically thought of as "the best interests of the child" or breast-beating do-gooders sacrificing their lives in the interests of society's problems. Is it any wonder that they are such an excitable lot!

It is only during this century that special education has developed as a system, when in the early part of this century there was interest in the search for a better knowledge base and moral optimism about the welfare of "weaker" members of society. This propelled development of provision whose basic tenets remain powerful forces in special education today; specialist knowledge, diagnosis and intervention, notions of "care", experts, specialist training, professional descriptions (and territories) - all these are evidenced in the enterprise.

Changes have nonetheless occurred over this century and it is appropriate to take stock and prepare for the next century. This I will attempt to do.

3.1 Psycho-medical Model: difference-deficit-exclusion

Whilst acknowledging that there have been significant moves away from earlier excesses of this model, there are nonetheless a number of systems within Europe (and US) which are deeply rooted in notions of "handicap", "deficits" and "exclusion" of children with perceived "problems". Deaf Education is no exception to this phenomenon. In developed industrial countries, there are a new generation of challenges.

3.1.1 We are increasingly faced with a re-emergence of medical labelling and interventions; eg "attention deficit hyperactivity disorder", a galaxy of "dyslexia(s)", "bio-ethics", "cochlear implants". All of these have the effect of pathologising disability and raise serious questions for ethical practice. And yet, there is evidence that medical labelling is being used to secure specialised services and additional resourcing by advocates of some disabled children, whilst others remain underfunded.
Question 1: What are the implications of these developments for Social Justice and Empowerment?

3.1.2 Medical labels continue to dominate the language of special education discourse and are being applied to an ever-widening number of children. Sociologists (since the 1980s) have brutally exposed the use of terminology by professionals and state bureaucracies to control particular troublesome, social groups. Let me illustrate, from my current research with parents, how they see this. Apart from the mystery surrounding the terminology itself, parents have felt alienated by the conflicting terms used by different professionals/services; they have often felt coerced by superior knowledge and treatment language, rather than persuaded and genuinely listened to. The fact that my research involves minority ethnic families compounds the barriers which exist. It goes far beyond using plain English, interpretation or translation. Question 2: How can communication (including the use of language) empower ALL disabled children (UN Convention) and their parents to actively engage in decisions about education?

3.2 School Effectiveness: difference-needs-differentiation

This model accounts for much of the effort to prevent failure and support mixed ability intakes, including the integration of disabled pupils; it operates differently in mainstream and segregated school contexts; there are also significant differences between (and sometimes within) countries. However, across different contexts, there are rather similar calls for developments of the following kind:

3.2.1 Schools to become learning organisations, characterised by inclusive methodologies, away from labelling students and towards creating appropriate environments which see all children, first and foremost, as learners. Recent research in developmental psychology with the rediscovery of the theories of Vygotsky and Feuerstein's have awakened interest in group and interactive approaches to assessment and learning. We look forward to all the presentations on Language and Literacy; the failure of "integration" has as much to do with barriers in classroom pedagogy as with those of organisational structure, school cultures, professional practices and finance.

3.2.2 The second priority for attention has to do with models of "support for learning". Economic policies in a number of countries have brought considerable pressures on schools to achieve "more with less" and to see children and their parents as consumers of services. I have to say that few of my sample of parents would recognise this apparent privilege in their dealings with officialdom. But the policy has meant that special educators now find themselves advocates for interests of individual children (I am not sure I would use the term "rights" here) as well as humanitarian bureaucrats dispensing distributive justice in "the best interests of the child". Whilst a substantial rethink of the resource issues is needed, there are also the legitimate needs of professionals for support. One way might be the reconceptualisation or restructuring of support services to make them less disparate, fragmentary and inaccessible. Inclusive support for learning should include the cognate contributions from the diverse disability services, guidance and counselling, bilingual support, etc; it would also require structural change. This is no easy task but parents would welcome it and I believe so would professionals. Question 3: Given recent changes in legislation pertaining to services for children and families, do you know of, or can you think of, suitable inclusive models of support?

3.3 Equal Opportunities Policies: difference-equality-integration

Research within sociological perspectives has made asignificant (if controversial) impact on disability policy. Early studies centred on class differentials, social control, and anti-discrimination; the 1990s saw an emphasis on choice, rights, entitlement and EO policies (gender, class, race and disability). How effective have these policies been in practice? Mounting evidence of serious and continuing discrimination and invisibility of EO perspectives in policy research would suggest minimal change. The latter issue is commented on by Rizvi & Lingard (1996) who state that most researchers in special education remain reluctant to undertake any systematic examination of what justice might mean, and how it might relate to the construction of their research questions and the uses of research findings. The dominant assumption appears to be that a concern for equal educational opportunities in itself provides sufficient justification for the conduct of research, but that this value commitment must not be allowed to contaminate research. I would also question the extent to which EO policies have been explicitly part of special education establishments. My doubts stem from the clear evidence that special education across Europe has failed to tackle issues of race and disability. Evidence from OECD report and other research has indicated that there is both over- and under-representation of minority ethnic children in special education, that their bilingual and bicultural status is marginalised and that their parents are seriously under-represented in decision making.

What this demonstrates is that ALL schools need inclusive policies which are developed by professionals working with the diverse communities.

3.4 Voice & Empowerment: identity-marginalisation-self-advocacy

What has become increasingly clear is that notions of access, entitlement (distributive justice) and EO policies about integration are not sufficient to account adequately for continuing exclusion and discrimination as now practised. Most importantly, these developments have failed to meet the expectations of disability rights (and similar oppressed) groups to have their voices heard in processes of decision making that affect their lives. The social model of disability, now widely acknowledged to have been developed by disabled academics (Oliver) is characteristic of this mind-shift. The quest for VOICE is concerned to focus attention also on issues of identity, difference, culture domination and recognition of the distinctiveness of social groups. Disability is seen as only one facet of human functioning and intersects with a vast array of cultural, linguistic and social characteristics including gender, race and class. Shakespeare (1996) has argued for strong links between the disability movement, gay pride and black power to create a positive, forceful and assertive coalition. Should this coalition extend to the array of NGOs working in the social justice field? One of the legacies of categorisation is that NGOs have also developed from and for specialised areas of disability. Whilst I am definitively not advocating a melting pot scenario and recognise the fear of dilution of focus in a generic approach, I do have doubts about the advisability or sustainability of single-syndrome organisations. There are also weaknesses of fragmentation, inaccessibility and competition for resources. Question 4: How can disability NGOs co-ordinate their resources to empower families in a diverse and changing society?

3.5 Social Justice: diversity-equity and rights-inclusion

This final model represents the vision enshrined in universal declarations issued by the United Nations. It recognises the dilemmas, some of which I have mentioned, involved in any analysis to do with the diversity of human beings. "Equity" is interpreted as much more than distributive justice; it is to do with recognition of "power" and moral responsibility. The link to "rights" is meant to ensure legal obligation on systems with regard to life chances. "Inclusion" in this sense, is much wider than the sense in which we currently hear it used. "Inclusive education" as a term has been hijacked by special education. An alternative paradigm is to see the concept of "inclusion" as an integral component of a much wider "struggle of marginalised groups in society". Such an analysis warrants an interrogation of concepts of "power", oppression, equity and rights in the quest for social justice. Hence, the implication of "empowerment" as a theme of the Conference. But, can this be achieved? Recent initiatives such as the UN Standard Rules and Salamanca Declaration move us in this direction.

Equity and Rights

Supplementary material Document 1

UN STANDARD RULES ON THE OPPORTUNITIES FOR PERSONS WITH
DISABILITIES 1993

Rule 5: Accessibility
In the rules, accessibility refers to two fields of action: "States should
(a) introduce programmes of action to make the physical environment accessible; and
(b) undertake measures to provide access to information and communication."
The first of these, access to the physical environment, has 4 components: development of standards, guidelines and, where appropriate, legislation for access to housing, buildings, transport, streets and other outdoor environments; information for architects, engineers and other design professionals on access policy and suitable measures to ensure access; incorporation of accessibility requirements in design and construction from the beginning of the design process; consultation with disability organisations when developing norms and standards, and local involvement of these organisations in public construction projects. the second, access to information and communication, has 7 components: provision of accessible information for disabled people (and their families) on diagnosis, rights, services and programmes; development of programmes using appropriate technologies to make information and documentation available to people with visual impairments, auditory impairments and communication difficulties; use of sign language in the education of deaf children and use of sign language interpreting services generally; consideration for the needs of people with other communication disabilities; accessible media, especially television, radio and newspapers; accessible computerised information and service systems; consultation with disability organisations when making information services accessible.

Rule 6: Education "States should recognise the principle of equal primary, secondary and tertiary educational opportunities for children, youth and adults with disabilities, in integrated settings. They should ensure that the education of persons with disabilities is an integral part of the educational system.": General educational authorities are responsible for the education of persons with disabilities in integrated settings. Education for persons with disabilities should form an integral part of national educational planning, curriculum development and school organisation.

Education in mainstream schools presupposes the provision of interpreter and other appropriate support services. Adequate accessibility and support services, designed to meet the needs of persons with different disabilities, should be provided.

Parent groups and organisations of persons with disabilities should be involved in the education process at all levels.

In States were education is compulsory it should be provided to girls and boys with all kinds and all levels of disabilities, including the most severe.

Special attention should be given in the following areas:

  • very young children with disabilities;
  • pre-school children with disabilities;
  • adults with disabilities, particularly women.

To accommodate educational provisions for persons with disabilities in the mainstream, States should:

  • have a clearly stated policy, understood and accepted at the school level and by the wider community;
  • allow for curriculum flexibility, addition and adaptation;
  • provide for quality materials, on-going teacher training and support teachers.

Integrated education and community-based programmes should be seen as complementary approaches in providing cost-effective education and training for persons with disabilities. National community-based programmes should encourage communities to use and develop their resources to provide local education to persons with disabilities.

In situations where the general school system does not yet adequately meet the needs of all persons with disabilities, special education may be considered. It should be aimed at preparing students for education in the general school system. The quality of such education should reflect the same standards and ambitions as general education and should be closely linked to it. At a minimum, students with disabilities should be afforded the same portion of educational resources as students without disabilities. States should aim for the gradual integration of special education services into mainstream education. It is acknowledged that in some instances special education may currently be considered to be the most appropriate form of education for some students with disabilities.

Owing to the particular communication needs of deaf and deafblind persons, their education may be more suitably provided in schools for such persons or special classes and units in mainstream schools. At the initial stage, in particular, special attention needs to be focused on culturally sensitive instruction that will result in effective communication skills and maximum independence for people who are deaf or deafblind.

Supplementary material Document 2

The Salamanca Statement and Framework for Action on Special Needs Education

F Community Perspectives
58 Realising the goal of successful education of children with special educational needs is not the task of the Ministries of Education and schools alone. It requires the co-operation of families, and the mobilisation of the community and voluntary organisations as well as the support of the public-at-large. Experience from countries or areas that have witnessed progress in equalising educational opportunities for children and youth with special educational needs suggests several useful lessons.

Parent Partnership
59
The education of children with special educational needs is a shared task of parents and professionals. A positive attitude on the part of parents favours school and social integration. Parents need support in order to assume the role of a parent of a child with special needs. The role of families and parents could be enhanced by the provision of necessary information in simple and clear language; addressing the needs for information and training in parenting skills is a particularly important task in cultural environments where there is little tradition of schooling. Both parents and teachers may need support and encouragement in learning to work together as equal partners.

60 Parents are privileged partners as regards the special educational needs of their child, and to the extent possible should be accorded the choice in the type of education provision they desire for their child.

61 A co-operative, supportive partnership between school administrators, teachers and parents should be development and parents regarded as active partners in decision making. Parents should be encouraged to participate in educational activities at home and at school (where they could observe effective techniques and learn how to organise extra-curricular activities), as well as in the supervision and support of their children's learning.

62 Governments should take a lead in promoting parental partnership, through both statements of policy and legislation concerning parental rights. The development of parents' associations should be promoted and their representatives involved in the design and implementation of programmes intended to enhance the education of their children. Organisations of people with disabilities should also be consulted concerning the design and implementation of programmes.


Role of Voluntary Organisations
66
As voluntary associations and national non-governmental organisations have more freedom to act and can respond more readily to expressed needs, they should be supported in developing new ideas and pioneering innovative delivery methods. They can play the roles of innovator and catalyst and extend the range of programmes available to the community.
67 Organisations of people with disabilities, ie those in which they themselves have the decisive influence should be invited to take an active part in identifying needs, expressing views on priorities, administering services, evaluating performance and advocating change.