ELSA - VOE

Autumn 2001

6 TH WORLD CONGRESS FOR PEOPLE WHO STUTTER 23 - 26 JULY, 2001 - GHENT, BELGIUM

Raising awareness of stuttering

The United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities - a tool for National Stuttering Associations, local self-help groups and the individual person who stutters?

Among the major outcomes of the Decade of Disabled Persons was the adoption, by the General Assembly on 20 December 1993, of the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities in 1994. Although not a legally binding instrument, the Standard Rules represent a strong moral and political commitment of Governments to take action to attain equalisation of opportunities for persons with disabilities. The rules serve as an instrument for policy-making and as a basis for technical and economic co-operation, and as such it can also be used in the work of National Stuttering Associations.

The Standard Rules on the Equalisation of Opportunities for Persons with Disabilities have been developed on the basis of the experience gained during the United Nations Decade of Disabled Persons (1983-1992). The purpose of the Rules is to ensure that girls, boys, women and men with disabilities, as members of their societies, may exercise the same rights and obligations as others.
One of the guiding principles of the European Disability Forum, a Brussels based disability organisation of which the European League of Stuttering Associations (ELSA) is a member, is the implementation of these UN Standard Rules. The Standard Rules, together with Americans with Disabilities Act, laid the groundwork for the disability and anti-discrimination policies of the European Union.

The UN's 22 Standard Rules describe the responsibility of states at all levels for making persons with disabilities participating members of society and for achieving equality of living conditions. The frequent occurrence in the Standard Rules of the expression "States should…" must not be taken to imply that the Standard Rules only apply to what is called the State, i.e. society or government at national level. The intention is for the rules to be adopted at all levels in every state or country concerned, e.g. by municipalities, county councils, business enterprises, organisations etc.

Organisations of persons with disabilities
The right of organisations of persons with disabilities to exert influence is a consistent theme of the Standard Rules. Rule 18 is specifically concerned with this topic, and influence or partici-pation is described in nearly all the other rules as well.

The UN Standard Rules - Two important principles
The Standard Rules lay down two important principles. The first is that all human beings are of equal dignity - regardless of capacity - and that all must have the same rights and obligations.
The second is a distinction between disability and handicap. Injuries and illnesses can lead to functional impairments - disabilities - but these only become handicaps in the encounter with inaccessible surroundings. There may be deficiencies in the environment and in various sectors of society, such as information, communication and education. It is deficiencies of this kind which make a handicap of a disability.

The 22 UN rules are divided into three groups: Preconditions, Target Areas and Implementation Measures

Preconditions
The first group, dealing with prerequisites of participation on equal terms, consists of four rules:

Rule 1. Raising awareness in society about, the needs, rights and potential of persons with disabilities.
Rule 2. Effective medical care must be provided.
Rule 3. There must also be good and opportune rehabilitation.
Rule 4. Society shall be capable of providing support services and assistive devices appropriate to the needs of each individual concerned

Target Areas
The second group of rules describes society's responsibilities in eight important target areas.

Rule 5. First comes the question of accessibility. An equal society should by definition be accessible to everyone. This applies both to the physical environment and to the accessibility of information and communication.
Rule 6. In addition, all children and young persons should receive education according to their capabilities.
Rule 7. Persons with disabilities must not be subjected to discrimination at work but must have access to employment on the same terms as others.
Rule 8. Society is also responsible for the provision of social security and income maintenance for persons with disabilities, even if the nature of their disability limits or excludes any possibilities of gainful employment.
Rule 9. All municipal residents have the same right of family life and personal integrity, and there must be no discrimination against persons with disabilities with respect to sexual relationships, marriage and parenthood.
Rule 10. Persons with disabilities must also be able to avail themselves of society's cultural amenities, in both active and passive capacities.
Rule 11. The same goes for recreation and sports. Arrangements, both in and out of doors, must be accessible. Persons with disabilities must also be able to engage in sporting activities and to have active leisure.
Rule 12. Churches and religious life shall also be accessible, so that persons with disabilities can freely practise their religion.

Implementation Measures
The third and final group consists of ten overarching rules on implementation measures.

Rule 13. Society shall improve the state of knowledge concerning the needs of persons with disabilities by means of information and research.
Rule 14. Through information and research, society can lay the foundations of consistent policy and planning in which disability aspects are included in every context.
Rule 15. Legislation shall give persons with disabilities a legal basis for participation and equality.
Rule 16. Economic policy shall be framed so as to make disability questions a natural part of the regular budgeting process.
Rule 17. Co-ordination shall ensure that effective use is made of public resources.
Rule 18. This rule defines the advisory role, which organisations of disabled persons can play in connection with the planning, implementation and evaluation of measures relevant to persons with disabilities.
Rule 19. Furthermore, all personnel categories concerned must continuously receive personnel training to give them knowledge of the needs, rights and potentialities of persons with disabilities.
Rule 20. Implementation of the Standard Rules must be accompanied by continuous monitoring and evaluation of programmes relevant to persons with disabilities, so that the intentions of the Standard Rules will be gradually achieved.
Rule 21. International experience interchange is an important part of the policy-making process where persons with disabilities are concerned. Through technical and economic co-operation, western countries should help to improve the living conditions of persons with disabilities in the developing countries and can support the formation there of organisations of persons with disabilities.
Rule 22. Disability aspects must also have their appointed place in all international co-operation

How can Associations of PWS, local self-help groups and indeed grassroots PWS benefit from the Standard Rules?
Looking at the 22 Standard Rules it becomes quite clear that many of them reflect very closely what Europe's National Stuttering Associations (NSAs) are working towards. It is also clear that not just NSAs but all of us, as individual PWS or members of local self-help groups, can use the Standard Rules.
(Rules 1-4) are objectives we find in most of our NSA statutes. For instance, raising public awareness of stuttering is something we can all do. We can all aim to ensure the media portrays PWS in a positive way. We can all, in various ways, lobby to ensure early access to effective speech therapy. We should push for ongoing monitoring of the effectiveness of speech therapy. We should have easy access to information on stuttering, stuttering self-help and speech therapy. All the above, society or government have a moral obligation to provide according to the Standard Rules. We should cite and remind them.

"The Standard Rules can be an excellent tool at lobbying stage, when applying for funds for projects and for public awareness at all levels."

Rules 6 & 7 are about education and employment. We should strive for the continued mainstreaming of PWS in the education system and the provision of equal opportunities. Rules 6 & 7 are important aspects of the NSA work. Rule 7 is linked to the recent anti-discrimination legislation and Article 13 of the Amsterdam Treaty. The speedy introduction of this legislation in member countries should ensure compliance.
Rule 13 is about Research, we should argue that society and government should initiate more research on stuttering.
Rules 17, 18 & 22 is about recognising, supporting and involving organisations such as the NSAs
Rule 19 focuses on the importance of training personnel, this rule can be used to ensure there is suitable training of speech therapists and other clinicians working with stuttering.
These Standard Rules though not compulsory are becoming international customary rules; they show a commitment to human rights, they claim an unmistakable integrative policy.
The Standard Rules, therefore, can be an excellent tool at lobbying stage, when applying for funds for projects and for public awareness at all levels. The Rules can be used to structure for the long term planning of a NSA. We can all play a part by referring to, and referencing them, in numerous situations.
The UN guidelines are of even more importance in non-EU countries and/or countries who do not have an anti-discrimination legislation. In these countries the Standard Rules may be the only basis non-governmental self-help organisations can refer to when fighting for integration and for the rights of disabled people.
Once again, the UN Standard Rules provide us with worldwide argumentative groundwork for all our activities.

Edwin J. Farr
Chair of the European league of Stuttering Associations
Footnote: The author acknowledges the help of HSO of Sweden and "Agenda 22" in the writing of this article.

Click here to see the full text of the UN standard rules

The Voice of ELSA

Raising awareness of stuttering

The United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities - a tool for National Stuttering Associations, local self-help groups and the individual person who stutters?