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UN Programme on Disability   Working for full participation and equality


Ad Hoc Committee : Contributions :

Summary Report of a Conference on the Theme:
“TOWARDS  A  UNITED  NATIONS  CONVENTION  ON  THE   HUMAN  RIGHTS OF  PERSONS  WITH  DISABILITIES”

ROYAL   HOSPITAL,  KILMAINHAM,  DUBLIN
26TH  FEBRUARY,  2002

Organised by the Department of Foreign Affairs of Ireland, the National Disability Authority and the Irish Human Rights Commission.

CONTENTS

Part 1 of 2
Keynote Address by: Mr Justice Donal Barrington
President, Human Rights Commission
Address  by: Ms Claire O’Connor
Director, National Disability Authority
Plenary Session: Making the Best Use of the Existing System of UN Human Rights Treaties in the Context of Disability
Professor Gerard Quinn, National University of Ireland, Galway
‘The Current Use and Future Potential of the United Nations Human Rights Instruments in the Context of Disability – Results of a Study’
Mr Bengt Lindqvist, UN Special Rapporteur on the UN Standard Rules on the Equalisation of Opportunities for People with Disabilities
‘Multi-Tracking – The Importance of a Coordinated United Nations Approach in the Disability Context.’
WORKING GROUPS Part 2 of 2
Working Group  1: ‘How Disability NGOs can engage more successfully with the UN Human Rights Machinery.’  Report of Group Rapporteur, Ms. Janet Lord
Working Group 2: ‘The role of National Institutions in advancing the Rights of Persons with Disabilities.’Report of Group Rapporteur, Mr.Frederick Tong
Plenary Session: Towards a UN Convention on the Rights of Persons with Disabilities
Presentation by Mr John Rowan, Head of Human Rights Unit
‘The Evolution of the Convention Concept.’
Round Table Discussion: What should the Convention contain and what drafting process should it follow?’
Plenary and Concluding Observations Dr Arthur O’Reilly, Conference Rapporteur
Appendix List of participants

This is part 1 of 2 parts. Go to the second part.


Towards a United Nations Convention on the Human Rights of Persons with Disabilities

Speech by Donal Barrington, President, Human Rights Commission
Royal Hospital Kilmainham
, 26 February 2002

Minister, Ladies and Gentlemen,

Thank you for the opportunity to address this important conference this morning. 

I am President of one of the world’s youngest Human Rights Commissions.  I think it is both important and relevant to point out that our Human Rights Commission came into life as the result of a historic agreement on this island – namely the Good Friday Agreement of April, 1998. 

That Agreement is at last enabling our peoples to reach common ground – to connect us as people and not as adversaries.  In essence, that Agreement provides a mechanism whereby our peoples can transcend their differences in order to reach accommodation on a broad spectrum of issues.  To put the matter plainly, that Agreement allows us to accommodate our differences whilst acknowledging that those differences continue to exist.   And in a way, this theme of accommodating difference is the theme of today’s conference.

For too long human differences have counted as a ground for exclusion – whether direct or subtle.  For too long the human difference of disability was looked on as something that ruins rather than complicates human existence. For too long our societies reacted either out of pity or revulsion to people with disabilities.  These reactions are not peculiar to Ireland but occur everywhere in the world.  This has to stop.

It has to stop primarily because human difference is – or should be - a cause of celebration in the diversity of the human family.  In this country our forefathers imagined a polity where equal citizenship reigned supreme.  They envisaged a new Ireland where all the people – regardless of class, background or other distinguishing features – had an equal stake.  You can witness this generosity of spirit on each St. Patrick’s day where everybody in the world is Irish if they want to!  In other words, what unites us is not just our ethnicity but also our commitment to the value that all people belong and that there are no insignificant  persons.

These values of equal citizenship, of belonging, are there – but they have yet to been realised for a variety of groups.  That is why the human rights perspective on disability is so important.  The human rights perspective constantly reminds us of that which we should not need reminding.  It reminds us that people with disabilities are human beings first and foremost and that their disability is not relevant to their entitlement to enjoy the full range of human rights that all others take for granted.   It reminds us that the values of dignity and autonomy and equality apply for all – and not just for the aristocracy of super-human beings without disability.  It reminds us that the violation of the rights and dignity of people with disabilities is a matter of concern not just because of the needless hurt and pain it inflicts but also because it degrades us all. 

For we in the mainstream cause most of the problems for people with disabilities.   We don’t design the built environment to cater for the difference of disability.  We don’t adjust our educational apparatus to accommodate different ways of learning.  When I say ‘we’ I don’t mean the Irish – I mean every culture worldwide.

I am struck by a number of  developments in the field of human rights as they apply to people with disabilities.  The first thing that strikes me is that a very powerful shift has taken place over the last two decades in particular toward the human rights model on disability.  The move towards human rights was accompanied by a move away from caring, or welfare or medicine.  This does not mean that caring, welfare and medicine do not have their place.  But the move did signal a change of emphasis away from people with disabilities as ‘problems’ to be handled and toward people with disabilities as rights-holders with an equal legitimate expectation to an active life of citizenship and work.

And lets give credit where credit is due for this shift of values.  The United Nations system has played a low key and largely unsung role in fostering this shift of values.  The World Programme of Action in 1981 was significantly ahead of its day with its emphasis on the ‘equalisation of opportunities’ for persons with disabilities.  I know many groups will argue that this instrument did not achieve much in tangible terms. But maybe that’s not the point. 

The point is that it signalled a shift of values and it began a process whereby people with disabilities would begin to see themselves – and the world – in a wholly new light. 

I was greatly interested to learn that the first independent expert review of the World Programme of Action in 1987 came to the conclusion that a thematic convention or human rights treaty on disability was necessary.  So the idea of a convention is not the brainchild of latter day ideologues of zealots – it has a long and respectable history.  I believe Professor Maria Rita Sualle of Rome University even prepared a first draft on behalf of Italy which was unfortunately not taken up in the UN system.   And I also believe that our distinguished visitor – Bengt Lindqvist  - prepared a second draft on behalf of Sweden which also unfortunately was not taken up in the UN system.

I suppose that the argument against a convention in the late 1980s was that the existing treaty system should be given a chance to work. In any event, a certain degree of treaty fatigue had no doubt entered the system at that juncture.  I was greatly interested to learn from the study conducted by Theresia Degener and Gerard Quinn that these conventions do reach the issue of disability and have great untapped potential.   But I was also interested to learn of their view that a new instrument is needed.   They came to that view not on any judgment that the existing treaties are inadequate – but on analysis of the kinds of pressures and strains on the treaty system that hinders it from developing a coherent and integrated human rights approach to disability.  This is natural.  Each of the treaty monitoring bodies has to deal with a wide variety of issues and priorities.  Their time and resources are limited.  

When you think of it, it is precisely for these kinds of reasons that the other thematic conventions on women, children and racial groups have been forged.  Such thematic conventions do not reinvent the wheel – they allow more sustained attention to be devoted to  the application of existing standards in particular contexts.   Such attention is long overdue on the context of disability.  An argument can certainly be made that a new convention runs the risk of further marginalising the issue of disability.  This need not be the case.  The Convention on the Elimination of Discrimination Against Women had exactly the opposite effect.  I look forward to the day when the evolving jurisprudence of the UN Convention in the Rights of Persons with Disabilities leads to practical results in how the  existing conventions are utilised in the disability context. I very much like the twin-track approach of optimising the value of the existing instruments whilst developing a new instrument that can provide the normative specificity that is needed and which can, in turn, lead to better use of the existing instruments.

Bengt Linqvist is not here merely because he was one of the heroes of the idea of a convention in the 1980s!  He is here because he was Special Rapporteur under the UN Standard Rules on the Equalisation of Opportunities for People with Disabilities.   These Rules were adopted by a Resolution of the General Assembly in 1993.  The Rules have been instrumental in accelerating the shift toward the human rights perspective on disability on a worldwide basis.  The difference between the World Programme of Action and the Standard Rules was that the Standard Rules had an official promoter in the person of Bengt.  Bengt has built up enormous expertise in the field of disability. This expertise is highly relevant to the project of crafting a UN convention on disability.

Indeed, I was also interested to learn that the Degener/Quinn Study recommend the continuation of the monitoring of the UN Standard Rules after a convention is adopted.   As I see it, the Standard Rules adopt a programmatic approach to change.   Sometimes legal conventions that tend to focus on violations need the added complement of this programmatic focus.

Another interesting thing I learned from the Study was that about 80% of people with disabilities live in developing countries.  Ireland has a long and proud tradition of development aid and co-operation.  In its own way, the Irish initiative in the UN Human Rights Commission on disability both fits with and develops this tradition. In this context one must pay tribute to the work of our Department of Foreign Affairs.

Ireland has sponsored the last two bi-ennial resolutions on disability within the UN Human Rights Commission.  It has steadfastly championed the cause of a UN convention on the rights of people with disabilities.  As President of the Irish Human Rights Commission and indeed simply as an Irish citizen I am very proud of the work of the Department of Foreign Affairs.  I encourage the Department to maintain and indeed re-double their efforts now that a convention is at last in sight.  No country is perfect but if I can paraphrase Bobby Kennedy Every country can make a difference, and every country should try’.  Let me also pay tribute to the work of our own Dr Arthur O’Reilly who, as former President of Rehabilitation International, did so much to get the idea of a convention accepted on the international stage.

Last but not least, let me say something of our plans as a Human Rights Commission.   Human Rights Commissions provide a bridge between international standards and the ongoing process of domestic reform.  Our aim is always to fertilse the process of reform by pointing to the relevance of international standards.  In this way, we help to bring Ireland closer to the international community.  This is by no means a one way bridge.  Ireland can also contribute actively to the setting and refinement of these standards and the activities of the Department of Foreign Affairs on the disability question are an excellent case in point. 

We welcome some more formal links with other Human Rights Commission on the question on disability. I believe the formation of such a group will be one of the recommendations of the Study.  We have a lot to learn from each other and hopefully we also have something to offer.

The Human Rights Commission greatly welcomes the initiative from the Government to maintain the pace of disability law reform in Ireland. Getting legislation of this type right from a human rights perspective is not easy and the issues  are obviously complex. The willingness of the Government to create some time and space on the question of the Disability Bill is a credit to their commitment to get it right. For its part, the Commission stands ready to put its expertise on human rights and disability at the disposal of the Government if felt useful and constructive.

We aspire to a society where difference enriches all of us.  Rest assured that the Irish Human Rights Commission will do all in its power to make this a reality.

I look forward to your deliberations today.  We all have a lot to learn from each other.  A unique moment in history has arrived.  A convention is within sight.    Now the hard work begins and today marks that beginning.

Thank you very much.

 

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ADDRESS BY
MS M.CLAIRE O’CONNOR, DIRECTOR,
NATIONAL DISABILITY AUTHORITY

HUMAN RIGHTS AND DISABILITY - HOW FAR AND HOW FAST?

Ladies and Gentlemen,

I am delighted to address you at this conference and to share with you some ideas in this very challenging area.

I am the Director of the National Disability Authority. The NDA is an Independent State Authority established to

  • Develop, Co-Ordinate and Advise on Policy
  • Promote Equality, Participation and Inclusion
  • Advise on and Monitor the Implementation of Standards for Programmes and Services
  • Prepare Codes of Practice     
  • Undertake and Commission Research
  • Collect and Disseminate Information

It can trace its origins to Rules 13,14,16,17,and 20 of the UN Standard Rules for the Equalisation of Opportunities for people with disabilities.

Part of the NDA’s strategic plan involves the NDA working with its parent department the Disability Equality Unit in the Department of Justice Equality and Law Reform. Together both will monitor Irelands’ adherence with international conventions and treaties with specific reference to people with disabilities.

We are here because of the significant strides that the UN has made for people with disabilities through the Human Rights ,Equalisation  of Opportunities and anti discrimination stance it has taken over the last number of years.

In this respect international law has led rather than followed national Governments policy development in the area of Disability. In other activities such as telecommunications and financial services the regulators are usually catching up with developments internationally.

There are several conventions that are directly relevant to the topic of today’s conference, Towards a civil society”.

Firstly, the UN Declaration of Human Rights, 30 articles ratified in 1948 in General Assembly. These human rights are universal.

Second the UN Standards Rules on the Equalisation of opportunities for Persons with Disabilities 1993 known as the StRE . These documents provided the framework for the report of the Irish Commission on the Status of People with Disabilities in 1996

The StRE set out the Preconditions for equal participation namely:

Rules 1-4 covering Awareness-raising Medical Care Rehabilitation and Support services while rules 5-12 covers Accessibility,Education, Employment, Income maintenance and social security,family life and personal integrity.These rules also encompass culture,recreation,sports and religion.

Finally the implementation and monitoring measures covered in Rules 13-22

  • Rule 13. Information and research
  • Rule 14. Policy-making and planning
  • Rule 15. Legislation
  • Rule 16. Economic policies
  • Rule 17. Coordination of work
  • Rule 18. Organizations of persons with disabilities
  • Rule 19. Personnel training
  • Rule 20. National monitoring and evaluation of disability programmes in the implementation of the Rules
  • Rule 21. Technical and economic cooperation
  • Rule 22. International cooperation

The remainder of the conventions and covenants are:

  • The International Covenant on Civil and Political Rights
  • The International Covenant on Economic Social and Cultural Rights
  • The ICCPR and ICESCR came into effect in 1976.
  • The European Convention on Human Rights

The ICCPR, and ICESR taken together are sometimes referred to as the International Bill of Rights. The StRE had been adopted as a substitute for a binding human rights convention on disability and thus are regarded as the most important U.N. human rights instrument on disability.  In addition General Comment no 5 has specific relevance for people with disabilities. That is the ongoing business, under existing treaties declarations and conventions.

Today, the focus is on the possibility of developing a new UN Convention on the Rights and Dignity of People with Disabilities, in line with the resolution of the General Assembly on December 19 2001.

This special showcasing of disability is warranted when disability features so rarely as a topic in the current reporting structures. Professor Gerard Quinn will highlight that fact later in his presentation.

I am going to address you in two parts, the first part covering the role of human rights in disability rights development. The second part is the opportunity to leverage the issues through the human rights agenda and globalisation, the so-called moves towards ethical globalisation

What are rights and human rights in the context of disability?

There are human rights derived from natural law.  They are the right to own oneself, to think for oneself and to act on one’s choices. They cannot be taken away and are the basis on which all legitimate law is built.

Human rights are typically grouped in two categories for the purpose of the Covenants, the first being:

Civil and Political Rights - These are the so-called Fundamental rights ,first generation rights, or basic civil liberties.The International Covenant on Civil and Political Rights upholds the right to life, liberty, security, equality before the courts, peaceful assembly, marriage and family, freedom of association, conscience, thought and religion.The most important clause in this covenant is Article 26, which guarantees equality of treatment without unfair discrimination.

The second category of rights are known as:

Economic, social and cultural rights -.These are second-generation rights which aspire to quality of life that justifies the suspension of other personal liberties by handing over to the State the monopoly of the regulation of coercive force and the power to make laws.Examples include:

  • rights to social protection,
  • right to an adequate standard of living,    
  • right to the highest standard of physical and mental health that a given society can afford,
  • the right to education
  • the right to enjoy the benefits of cultural freedom and scientific progress, and the right to enjoy all such rights free from discrimination.

These rights are monitored under the International Covenant on Economic Social and Cultural Rights. The ICESCR directs contracting States to take steps to the maximum of their available resources progressively to achieve the full realisation of the rights recognised in the Covenant.

  • Those rights are rights to medical services, medical services, employment rights, social welfare, family protection, physical and mental health education and  enjoyment of common cultural heritage.
  • People with disabilities are people first with equal rights and responsibilities, and as a result of their disability, are then significant users of social services..
  • The Declaration on the Rights of Disabled Persons was proclaimed in General Assembly in 1975. The UN adopted the Standards Rules on the Equalisation of opportunities for Persons with Disabilities in 1993. When the Rules were drafted, they were to be a manifesto of moral and political values. What is required is strong political and practical commitment to take action for the equalisation of opportunities for people with disabilities.
  • From time to time the UN can appoint Special Rapporteurs on generic issues. To date, there have been two in the area of disability. Leandro Despouy was appointed as Special Rapporteur in 1984 and Bengt Lindquist, whom I see is a speaker here today, was appointed in 1994 and is still currently serving under this mandate.
  • In the European Union, the policies of the European Commission shape our stance, particularly in Employment and Social affairs. In 1996 the EU moved to a rights based approach in a Resolution of the Council of Ministers in December 1996. In 1998, a report on the 15 EU states was prepared, with each country preparing a summary of the co-ordination mechanisms, the civil rights, benefits, services and accessibility arrangements in their countries. In February of that year, the Greek Government adopted the Standard Rules into Greek National law [1] This was seen as a radical move.
  • Article 13 of the Amsterdam Treaty 1997, subsequently to be amended by the Nice Treaty sets out the legal basis for the anti discrimination measures in the EU.

The General Framework Directive was passed by the European Council in       2000. It prohibits discrimination in employment and occupation on several grounds including disability. Member States must implement it by Dec 2 2003, with a further three years implementation time frame for provisions relating to disability discrimination. It covers public and private sector employees, pre-employment practices, employment conditions and dismissals.    

  • The Directive allows positive action to ensure equality in practice.
    The underlying premise in all this development is Equality of Opportunity, but we need to put this in context.

There are various “strengths” of equality, a thesis that is developed by Professor Gerard Quinn in the literature[2]

Briefly they are:

  • Formal Equality - This requires that those who are similarly situated should be treated alike. It does not permit the interpretation of equal but different which is necessary to accommodate disability
  • Equality of Opportunity - This requires States to take steps to diminish or eliminate conditions, which perpetuate discrimination
  • Equality of Results -  This is the strongest form of equality and looks at equalising end results, and overlooks how well people perform socially economically or other wise.

It is the mid strength version of equality which has gained universal acceptance from policy makers around the world, particularly in the EU. However the more one looks at equality of opportunity the more one is persuaded that some positive supports are necessary to allow people with disabilities get to the stage where they can make the same choices as everyone else on equal but different terms.

In very practical terms, assistive devices, aids and appliances and other disability specific supports, which are required wherever one is in the participation stakes, i.e. (economically or socially active) would seem to fall into the positive enforceable rights.

There is a fundamental distinction between rights that are legally enforceable entitlements and those that are not. (Bickenbach 2000)[3]

What an individual contracting State chooses to do in the area of positive enforceable rights, in the so called substantive economic social and cultural rights, has to be a balance between the duties of the State ,the realities of resource allocation, international covenants to which the State is signatory and the civil economic and social rights of individuals.

States have developed programmes in the economic social and cultural area that are rights based, but fall short of positive enforceable rights .The only State that I could find that offered positive enforceable rights to services for people with disabilities was Sweden.[4][5] The passage of the legislation was seen as necessary to ensure equality and provide basic rights for people with severe functional disabilities either physical or mental.

Certain substantive rights may evolve to be positive enforceable rights to allow people with disabilities exercise their fundamental human rights such as the right to own oneself, to think for oneself, and to act on one’s choices.The United State’s situation is such that if one is assessed as having a learning disability before reaching 21, one becomes entitled to services for life.

Professor Quinn makes the point clearly in his argument that negative rights may give rise to positive obligations because of the upward ratcheting effect of the concept of equality. He also refers to the need for affirmative action programmes to put equal opportunities into effect. These programmes create positive State responsibilities.

I have referred to it less elegantly in the phrase “people with disabilities need more supports to get to the starting line on the equal (but often different) terms to everyone else”

In reviewing the “Canadian Framework for Disability Equality rights”, Rioux and Frazee concluded that the “systems and structures must change if people with disabilities are ever to participate as equal citizens.”

In finishing on the topic of rights and disability it is evident that one can speak of rights based policies which do not extend to positive enforceable rights. The tension arises where there are no appropriate services, and no plans to develop them or where demand greatly exceeds supply. People with disabilities and their carers will then invoke any argument and any route open to them to extract from the State party what they believe are their rights under the local governance, or international treaties.

Contracting State parties are open to censure if appropriate actions are not planned to remedy any legitimate criticisms.

What is the relationship between Ethic Globalisation and disability?

Now I am turning to the recent interest in Ethical Globalisation and I will link it to disability:

UN High Commissioner Mary Robinson was in Dublin in January 2002 and made a presentation to the students in UCD on “ethical globalisation”. This notion has great resonance with Ireland, which is one of the most open economies in the world.It appears close to top of the rankings when it comes to economic globalisation and has a demographic structure that favours “social entrepreneurship”

People in their mid 30’s want to make a difference. This type of person is the most effective prosecutor of causes. They are well educated, convinced of the merits of evidence based arguments, and effective in their networking. Most are IT literate, and beneficiaries of the investment in education in the last 20 years. They are articulate and their energies can be harnessed for time limited projects.

They themselves are strapped for time, and will carefully scrutinise any initiative to estimate the likelihood of success and the value they believe they can add. They have a social conscience but want to devote their  “social dividend ” to projects that are well structured. Once engaged, they are totally committed. Energy and humour are seen in abundance.

The UN High Commissioner’s speech hit the right note and I am sure many are reflecting as we speak how they can engage in assisting in promoting that type of approach.

What did she mean by ethic globalisation?

I first came across it in the media in an address given by Hans Kung the Swiss theologian and president of the Global Ethic Foundation, given at St Paul's Cathedral onthe 11th of May 2000 entitled“Globalisation must have an ethical dimension”in which he said and I quote:

“To put it plainly: an ethical impulse and a motivation to accept responsibilities are needed for an effective realisation of human rights.”

He went on to say that “ a declaration and explanation of human rights comes up against a void wherever people, particularly those in power, adopt one of the following widespread attitudes to human rights:

They ignore them, neglect them, fail to perceive them or simply pretend to fulfil them.

In closing, he reiterated that:

“To ensure that economic performance is subordinated to human and social goals, globalisation needs political underpinnings and an ethical framework.”

The term then appeared in an open letter from Belgian Prime Minister Guy Verhofstadt in advance of expected protests by anti-capitalist groups at an EU summit in the Belgian towns of Ghent on October 19 and Laeken in December 2001. It appeared in 55 newspapers, and caught the imagination of many responsible NGO’s.He called for more globalisation to fight inequality and called this ethical globalisation a triangle of...’ trade, cooperation and the prevention of conflicts.’

He also proposed expansion of the Group of Eight (G8), stating that “this new G8 would become the forum for binding agreements on global, ethical standards concerning working conditions, intellectual property and good governance,"

UN Commissioner Mary Robinson  talked of building an ethical and sustainable form of globalisation building on a shared responsibility for the universal protection of human rights, pointing out that the responsibility is on all sectors, business, government, individuals the financial sector and the United Nations. This orderly development is the most effective response to the anti globalisation demonstrations.

But is human rights a key issue for business?

The prevailing understanding in the 1970’and 1980’s was business makes money, business pays taxes, and Governments govern. Governments compete to attract global investment or foreign direct investment or ”FDI”. FDI is very mobile, and with the shortening product life cycles is constantly relocating. To make itself attractive as an employer to an increasingly choosy workforce business must show that it behaves responsibly.

There are many league tables on FDI published by the major international accountancy firms, and State investment agencies track them closely. However there is not the same interest in Human Rights. The Ashridge Centre for Business and Society in 2000 surveyed 500 global companies on their attitudes to human rights. Just 52 replied, and of these, fewer than half had a corporate code with explicit reference to human rights.

UN Rights Commissioner Mary Robinson spoke at another forum in October 30 2001, and asked those representing civil society to be a voice for change within the existing democratic structures. She gave the example of the value of getting involved at local level in the local governing bodies.

What relevance has this to disability?

There is a very strong link between Human Rights and disability, particularly in the context of the existing reporting structures within the UN. Many of the basic human rights are routinely violated for this vulnerable group and States are not often consciously aware because people with disabilities are usually invisible in their democracies.

While closing in UCD, UN High Commissioner Robinsons remarked (in UCD) closed by stating that we did not need any new declarations or commitments; we simply need implementation.She commented that of the 144 signatories to the WTO 112 are also State parties to the ICESCR. The framework is already in place; we just need the political consensus.

How do we support an ethos or interest in human rights in Ireland?

Firstly it can come about through the educational system, at junior cycle through Civics Social and Political Education. This needs to be actively supported by the NGO’s.

Secondly we can share experiences.

I worked with an American bank in the 80’s. It had a strong antidiscrimination policy on grounds of gender, sexual orientation etc, and its hiring policy reflected this.

One country manager recently arrived from the US was taken aback to see his senior lending officers availing of membership of the gentlemen’s clubs on the Green. He inquired if ladies could join, and when he discovered they could not he promptly withdrew the chaps from membership.He had internalised the compliance culture at the bank, was immediately aware of the anomaly and took corrective action, and made no big deal of it.

Imagine my surprise when I joined the Irish sector and found so much business was done on the golf course.

I am now seeing something of the same characteristics in  employment practices. Over 11% of NDA’s employees are people with disabilities. It is not remarkable and could be higher. When I go to other employers people with disabilities are conspicuous in their absence.

I recently visited a prison. I know that prisoners are held at the State’s pleasure as a punishment. I imagined the impact such restraint would have on me and shuddered. It is the status quo for many people withdisabilities, at home andin care as society does not empower them and they have no choices.

Though I labour the point, one can only “see” the invisibility of people with disabilities when your attention is drawn to it. It is the photographic equivalent of always viewing negatives. 

TO CONCLUDE, the pace of change at the legislative and international level is daunting. The proposal to draft a new UN Convention on theRights and Dignity of People with Disabilities, in line with the resolution of the General Assembly on December 19 2001 is a very welcome development.

The opportunity to leverage the Rights of people with disabilities through the move towards ethical globalisation is very exciting particularly in the employment area.

The major challenge is in changing the attitudes and structures in State parties, and in society to include people with disabilities in genuine equality.

Thank you for listening and I hope we have a productive day.

Select Bibliography

Coomans, F. and Grunfeld, F et al (eds) (2000) Rendering Justice to the Vulnerable, The Hague, Kluwer Law International.

Coomans, F. and Flinterman, C. et al (eds) (2000) Human Rights from Exclusion to Inclustion: Principles and Practice, The Hague, Kluwer Law International.

Cooper, Jeremy. (2000) “Improving the Civil Rights of People with Disabilities through Domestic Law” in Cooper, Jeremy (ed) Law Rights and Disability, London, Jessica Kingsley Publishers.

Constitution Review Group (CRG) (1996) Report of the Constitution Review Group, Dublin, Stationary Office.

Degener, Theresia. and Koster-Dreese, Yolan. (eds) (1995) Human Rights and Disabled Persons: Essays and Relevant Human Rights Instruments, Dordrecht, Martinus Nijhoff.

Driscoll, Denis. (ed) (2000) Irish Human Rights Review 2000. Dublin, Round Hall Sweet and Maxwell.

Janis, M., Kay, R. and Bradley, A. (2000/1995) European Human Rights Law: Text and Materials, 2nd edn, Oxford, Oxford University Press.

Jones, Melinda & Basser Marks, Lee Ann. (eds) (1999) Disability, Divers-ability and Legal Change, The Hague, Martinus Nijhoff Publishers.

National Disability Authority (2001) A Matter of Rights: Strategic Plan 2001-2003, Dublin.

The European Commission, Directorate-General for Employment, Industrial Relations and Social Affairs (1998) Compendium on Member States’ Policies on Equality of Opportunity for People with Disabilities, http://europa.eu.int (accessed 18 February 2002)

 

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The Current and Future Potential of the United Nations Human Rights Instruments in the Context of Disability -Results of a Study’

Gerard Quinn.

1.       Introduction.

I want to introduce to you our Study on the Current Use and Future Potential of the UN Human Rights Instruments in the Context of Disability.  This Study was commissioned by the Office of the UN High Commissioner on Human Rights and will be published later in March of this year.  The very existence of the project itself  is further evidence of the power of the shift from welfare to rights as the relevant framework of   reference in the context of disability.

I start with a quotation from a recent UK publication on the rights of disabled children.  It  reads as follows:

An 11 year old girl with Down’s Syndrome was playing on the beach with a little boy. “Are you disabled”, he asked her.  “No, I’m Daisy” she replied and they went on playing.

[Disabled Children’s Rights, London, 2001].

To me this neatly summarises the vision at stake in the field of disability.   People with disabilities aspire to a society where difference is a ground for the celebration of the diversity of the human family and not a ground for exclusion, segregation, separate treatment or discrimination.   Inclusive societies are those where everybody belongs and – just as important – where everybody feels that they belong.

Our Study was premised on the insight that the move from the welfare to the rights model in the context of disability means the following.  First of all, it means viewing people with disabilities as subjects and not as objects.  That is, it means admitting people with disabilities into the benefits of human rights which are for all and not just for some or even the majority in society.  Secondly, it means viewing people with disabilities not as ‘problems to be fixed but as human beings of inestimable and equal value and as rights holders.  Thirdly, it entails a commitment to ensure the equal effective enjoyment of all human rights for people with disabilities.   Specifically, it means underpinning the achievement of open inclusive societies based on equal opportunities for all.  In sum, we called the disability rights project a ‘visibility project’ in that it restores full visibility to people with disabilities in law as well as in society.

2.       Purpose of the Study.

            The purpose of our Study was threefold. 

First, it aims to provide a reference work on human rights and disability.  This should be useful in clarifying the various benchmarks of international human rights law in the specific context of disability.  Such a reference work should be of use to Governments, to the various treaty monitoring bodies and to civil society. 

Secondly, it seeks to evaluate how the international human rights system is working in the specific context of disability.  This is important since there is an established web on human rights instruments in pace and we need an accurate picture of how the shift to the human rights perspective at the level of ideas is being mirrored in the practical functioning of the system. 

 

Thirdly, the Study provides a range of options for the future. In the main these options focus on improving and strengthening the operation of the existing human rights system in the context of disability.  We also deal with the arguments for the need to augment the existing system with a new thematic convention on the rights of people with disabilities.  We come to the conclusion that such a convention is necessary and that it would underpin and not undermine the existing human rights system in the context of disability.  The Resolution adopted by the Third Committee of the Genera Assembly in New York in November 2001 which sets in train a process for drafting such a convention is historic and greatly to be welcomed.  The real challenge ahead is not whether such a convention should be drafted but how.

3.       Structure of the Study.

            The Study is divided into three Parts. 

Part One deals with a range of background and introductory matters and comprises three chapters.  Chapter one sets out the core values at stake in the field, namely; dignity, autonomy, equality and solidarity.  Chapter two recounts the various initiatives at the UN level over the past twenty years or so in the field of disability.   Many of these developments hastened the advent of the rights model in the field of disability.  Among other things, it deals with the UN Standard Rules for the Equalization of Opportunities for People with Disabilities.  This was truly a landmark resolution of the General Assembly and there is no doubt but that it hastened the advent and acceptability of the human rights model in the context of disability. Much of the credit for that goes to Bengt Lindqvist who acts a Special Rapporteur to the Commission for Social Development under the Standard Rules.

Chapter three sets out the bridge between these ‘soft law’ developments and the ‘hard law’ of the UN human rights treaty system. It is crucial that this bridge should be crossed and that the next stage which involves harnessing these treaties to the full should now star in earnest.

Part Two deals in separate chapters with the six existing UN human rights treaties in the context of disability. The organising idea behind each of these chapters was to (1)   draw out the relevance of the treaty in question in the context of disability, (2)   to examine how the treaty is currently functioning on the context of disability by examining a spread of recent State Reports as well as how the treaty monitoring bodies handled those reports and (3) to suggest ways in which the use of the treaties could be enhanced in the context of disability. 

The six treaties – corresponding to chapters four through nine – are the International Covenant on Civil and Political Rights (CCPR, the International Covenant on Economic, Social and Cultural Rights (CESCR), the Convention against Torture (CAT), the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), the Convention on the Rights of the Child (CRC) and the Convention on the Elimination of All Forms of Racal Discrimination (CERD).

Part Three sets out options for the future and comprises chapters ten through thirteen.    Chapter 10 deals with the views of civil society as to how the existing system works and how it could be improved in the context of disability.  A detailed questionnaire was distributed to disability NGOs worldwide.  Chapter 11 deals with National Human Rights Institutions (human rights commissions in the main) to evaluate their role as catalysts in the process of change.  The analysis in this chapter was based in the results of another questionnaire sent to National Institutions worldwide.   Chapter 12 sets out our recommendations with respect to strengthening the existing system and chapter 13 deals with the arguments for augmenting the system with a new thematic convention.

4.       Findings.

            With respect to the six core human rights treaties we found that they had considerable if under-appreciated normative relevance in the context of disability.  Disability is interesting in that it tends to help prove the much vaunted thesis of the interdependence and indivisibility of civil and political rights on the one hand with economic, social and cultural rights on the other. 

We found many positive normative developments within the treaty monitoring bodies such as General Comment 5 of the Committee on Economic, Social and Cultural Rights.  While some States had clearly crossed the line between the welfare and rights models in the context of disability, most of them continued to report as if disability were a welfare issue. 

We found that the treaty monitoring bodies were not themselves insistent on the rights perspective on disability.  This is not a criticism of the treaty monitoring bodies.   They have many different issues to devote their attention to.  It is simply a function of having general treaties that do not have any disability-specific focus (with the exception of Article 23 of the CRC). 

We also found very low levels of engagement by disability NGOs in the UN human rights system.  This is a pity since a higher level of sustained involvement would certainly help to keep a focus on disability within the system.  Again, this is no criticism of the NGOs.  They are nearly all in the process of making the transition to the rights-based approach and it takes time and resources to follow through appropriately.   In time one can expect much higher levels of engagement.

Interestingly, our analysis in chapter 10 revealed that the disability NGOs had already made the transition to the rights model at the level of ideas.  Many of them in fact saw themselves primarily as human rights NGOs.  A lot of them reported having a lot of knowledge about the various ‘soft law’ instruments.  Some of them reported on their engagement with the UN human rights system.  Of those that did so engage the results were generally positive.  This shows that the system is responsive provided to disability the rights kinds of inputs are made.  This factor augurs well for the future provided that levels of NGO engagement can be improved.  We identified the following inhibiting factors militating against increased levels of NGO involvement; (1) the spread of issues between six different instruments means that disability NGOs have to become expert in a broad range of instruments, (2) the technical nature of the knowledge required acts as a deterrent, (3) the lack of disability-specific rights training, (4) the persistence of low levels of human rights skills in the disability community, and (5) the lack of resources to upgrade the human rights capacities of the NGOs.

Our analysis of the National Institutions revealed that their level of awareness about the relevance of human rights in the context is quite high.  Many of the National Institutions reported that disability ranks high as a priority priority.  Indeed, many had already commissioned and published research in the field which has led in some instances to legislative reform.  Most of the them reported that they were experiencing increasing numbers of complaints which is a sure sign that levels of awareness – though currently low – are fast rising.  Many of them included disability rights as part of their overall efforts in human Rights education

5.       Recommendations.

(a)      Recommendations aimed at Strengthening the Existing System.

With respect to the concrete recommendation for improving the existing system we recommended the following. 

We recommend that the States parties to the human right treaties should step up their efforts to view disability as a human rights issue.  Among other things, we think they should consult more with NGOs in the construction of their periodic reports.  We don’t recommend this to allow NGOs gain control over the drafting process. Far from it.  We recommend this so that the States parties can be better equipped to begin thinking more actively about the human rights perspective on disability.  We think that States Parties should be encouraged to nominate suitably qualified persons with disabilities to the various treaty monitoring bodies.

With respect to the treaty monitoring bodies we recommend that they should all adopt General Comments (or their equivalent) setting out the relevance of the standards in the various treaties in the context of disability.  Even the process of drafting such documents would have a value in raising levels of awareness about rights and disability within the treaty monitoring bodies. It would also help to clarify the relevant benchmarks for the States parties as well as for civil society.  We think that the treaty monitoring bodies should each set aside a thematic day of discussion on disability.   This worked well under the CRC.  We believe that the ‘List of Issues’ sent to States parties requiring more information should more regularly include disability as a topic.  We recommend that the dialogue between the treaty monitoring bodies and the States parties should more regularly include disability even where disability is not included in the State report.  We recommend that the Concluding Observations or Recommendations of the treaty monitoring bodies should also deal more consistently with disability if only to require the States parties to advert their minds to it and to provide more detailed information in subsequent reports.  We would also encourage the States parties to put forward examples of good practice which the treaty monitoring bodies should draw specific attention to in order to demonstrate what is possible.

With respect to the Office of the UN High Commissioner for Human Rights we recommend that the Office set up a dedicated website on human rights and disability to complement the excellent DESA website.  It should allow users to track the relevant developments in the treaty monitoring bodies with respect to disability issues and link them with other UN resources including those of DESA and the Specialized Agencies.  We also recommend that a series of more fine-tuned thematic studies should be commissioned by the Office on, for example, the human rights of vulnerable people with disabilities in institutional settings, intellectual disability, children with disabilities, women with disabilities, etc.  We think the Office should signal that it welcomes applications for internships from people with disabilities.  We also think that the Office could play a useful role in stimulating university-based human rights centers to begin developing courses and research on human rights and disability.  We recommend that the Office should take a useful lead role in clarifying the significance and practical relevance of the human rights perspective on disability within the UN system. 

With respect to the UN Human Rights Commission we recommend that it should maintaining and further enhance the process of mainstreaming disability as a human rights issue onto its agenda and should indeed set aside a thematic day of discussion on disability and human rights.  We also recommend that the UN Human Rights Commission should give serious consideration to the appointment of a UN Special Rapporteur on human rights and disability in order to give focus on the system on the topic and in order to elevate it in importance.

With respect to National Institutions we recommend that they should now take the next logical step of forming a working group on disability whether on a global or regional basis.  This would enable them to share good practice and experience in a more structured and focused way on disability.

With respect to civil society and disability NGOs we recommend that they should form some type of international human rights watch on disability.  Innovate ways should be explored of funding this through, for example the development aid budgets of the Member States of the UN.  We also recommend that disability NGOs should work more closely with ‘mainstream’ human rights NGOs to gain the benefit of their experience but also to help them to come to terms with the human rights perspective on disability so that they can absorb this into their own work.

(b)      Recommendation to Augment the System with a New Thematic Treaty on the Rights of People with Disabilities.

The arguments for a convention are not new.  They have been around since 1987 when an expert group called together to review the UN World Programme of Action recommended that such an instrument should be adopted.  Both Italy and Sweden proposed texts to the UN.  Both initiatives failed.  But the issue has never gone away. 

We think the arguments for a convention are cogent.  Such an instrument would greatly add to the visibility of disability as a human rights issue.  We believe that it would bring many practical benefits.  It would certainly clarify the relevant benchmarks for States parties as well as for civil society.  It would enable one body to develop an expertise not just in disability but in the broad field of human rights as applied to disability.  Instead of spreading disability issues among six treaties it would enable people to focus on one core thematic treaty. 

We believe that such a treaty should incorporate both sets of rights as well as be sufficiently sensitive to the multiple grounds for discrimination that can intersect with disability.  It should be grounded on values such as dignity, autonomy, equality and solidarity  Such a convention should be viewed as something that will contribute to the mainstreaming of disability and not to its isolation.  A Convention could usefully complement the UN Standard Rules which are essentially programmatic.  Such a programmatic focus will be needed even if a convention were to be adopted since conventions look more to specific violations.

Last, but most crucially we believe that the process for drafting a convention should be open, transparent and should allow for as much participation as is possible from a broad range of States as well as from civil society.  If our own analysis has shown anything, it has shown that the issues are not simple and that the tailoring of general rights to meets the circumstances of persons with disabilities requires very careful analysis and drafting.  This will take time.  It is much better that this should be done right rather than fast.

 

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STATEMENT BY BENGT LINDQVIST,
UN SPECIAL RAPPORTEUR ON DISABILITY

 

Distinguished Participants,

We are about 600 million people in the world, who live with a disability. Our living conditions vary, but we are strongly united in one common experience: We are all being exposed to various forms of exclusion.  

The phenomenon of exclusion is rooted in ignorance, low expectations and prejudice. It can often be observed in quite open forms, but sometimes it is hidden in more sophisticated types of behaviour. 

Millions of  girls, boys, women and men with disabilities are hidden away by their families or shut up and isolated in big institutions. Other large groups  are forgotten by their   local communities. The needs of disabled people are usually neglected in general programmes to fight poverty or to develop educational opportunities. The same pattern of omission is often found in general schemes for employment, in designing and building the environment and in developing modern service systems.

Again and again, we must ask ourselves: How can we put an end to this form of discrimination? What is the role of the nation state and of other actors in society? How can the United Nations support and encourage the development  towards full participation and equal rights for persons with disabilities?  A good beginning was made through the adoption in 1982 of the World Programme of Action Concerning Disabled Persons and through the adoption of the Standard Rules in 1993. In many countries new policies have been developed on the basis of these UN guidelines. The question now is: How do we continue from here?  What are the logical next steps in the development? 

This year, 2002, is a year of great opportunities for advancing disability matters within the United Nations. Prior to the 57th session of the UN General Assembly, three important events will take place. The 40th session of the Commission for Social Development was the first of these occasions. Based on my report, the Commission was expected to  consider proposals concerning the future of the UN Standard Rules and related issues. In April the UN Commission on Human Rights will consider the outcome of a study on how to strengthen the protection of the human rights of persons with disabilities. Finally, the ad hoc committee, recently decided upon by the General Assembly to consider proposals for a convention on the rights of persons with disabilities, is due to hold one meeting before the General Assembly of this year.

These important events are all the result of the development towards a rights-based approach in the disability field, which has taken place during the last two decades. It is of the utmost importance that the decisions and recommendations, coming out of these three major events, are in harmony and well co-ordinated.

I should now like to make a short presentation of the contents of my report, which unfortunately was circulated very late to Commission members. It contains an account of my activities during the two years since the renewal of my mandate. I visited a number of developing countries and countries in transition. I participated at several international conferences and two important consultations on the issue of human rights and disability. My impression is that the Standard Rules continue to play a major role as a basis for national policy development and for new legislation initiatives. The recent recognition of the Standard Rules as a reference tool in monitoring human rights infringements has strengthened the position of the Rules. At the same time, the need for complementing the Rules in certain areas has been clearly felt in many of these discussions.

At its 38th session the Commission also gave me a mandate to develop my views on certain issues. I have identified four such issues and my report contains analyses and recommendations in the following four areas:

  • Firstly, in response to the task to present forms for complementing the Rules, I have elaborated additional texts, which could be adopted as a supplement to the Standard Rules. These texts are based on the areas identified as gaps and short-comings in my previous report. They have been drafted in close consultation  with the Panel of Experts. A number of NGOs and individual experts around the world have contributed with ideas and suggestions.

The supplement contains recommendations in areas such as adequate standard of living, housing, disabled people in emergency situations, violence and abuse, gender issues, the situation of children and elderly people with disabilities. No changes in the present text of the Standard Rules have been suggested.

With regard to the main emphasis of the supplement, I have given it the title Reaching the most vulnerable. I recommend that the UN adopts these texts as a supplement to the Standard Rules.

To develop a disability dimension in the present monitoring system is a project that could be started with short notice  and bring results fairly soon. To elaborate a convention is a task of immense importance and should therefore be allowed to take time. My view is that these two approaches are complementary and my recommendation is that both lines of action should be pursued and a "twin-track approach" applied.

  • The second area brings up the issue of exchange of information and experience between the various UN entities, involved in disability measures. There has for a long time been a need for more effective communication in this area. The modern information technology offers practical and cost-effective solutions to this problem. I recommend that a "virtual inter-agency mechanism" should be established and that the disability programme within DESA should have an initiating and co-ordinating role in this.
  • The third area concerns the future monitoring of the Standard Rules. I have made a short analysis of the different functions of the monitoring mechanism, as it is described in the Standard Rules. I point to the impact that this monitoring activity has had globally in promoting the implementation of the Rules. I recommend that this active monitoring system should continue. A  new rapporteur should be recruited and the system with a Panel of Experts, established by the international disability organisations, should be kept. I also recommend that positions as disability policy advisers should be established in the developing regions.
  • The fourth and final area concerns human rights and disability. This section of the report contains a historical background and an analysis of the two main options for action - to develop a disability dimension in the present system of human rights monitoring and the elaboration of a special convention. The recent decision by the General Assembly to initiate a process to study proposals for a convention has been taken into account.

I should now like to comment further on the important issue of a convention in the field of disability. Let me first commend the Mexican government for the successful initiative in the General Assembly. The important thing now is to get the process of elaboration right. This entails issues of content, organisation and funding.

Concerning the content my report contains a number of questions, which in my opinion should be answered before the actual drafting starts. These questions are:

  • what areas should a future convention cover?
  • what relation should it have to existing general conventions?
  • Should it be expressed as a set of principles, general in nature but possible to apply in a variety of national situations around the world?
  • Should the main perspective be based on the needs in developing countries?
  • Should this future convention replace the Standard Rules, or should the Standard Rules and the convention complement each other?

The ad hoc committee should also a stand on the question of what UN domain should host and administer the elaboration. To most of us, who have worked consistently towards the recognition of disability as a human rights issue, the natural UN entity for hosting this project would be the Commission on Human Rights and the Office of the High Commissioner for Human Rights. Any other solution could mean a risk that the elaborated standards of a convention would not be in harmony with general human rights standards.

Another fundamental aspect of the process is to ensure the active participation by the movement of persons with disabilities. This is both an organisational matter, a matter of time and an issue of providing material resources for a fair participation. The most natural solution would be to make it possible for the representatives of the international NGOs (the International Disability Alliance) to participate both at the preparatory meeting, planned by the Mexicans to take place in April/May, and at the ad hoc meeting.

Another way, which should also be used, would be for member states to include representatives of disabled people in their national delegations. A third way, which I used as the responsible minister for the Swedish input to the drafting of the Child Convention, would be for member states to create national preparatory groups, including representatives of disabled people, to consider incoming proposals and to take initiatives to be used by the government in the elaboration process.

Ladies and Gentlemen,

May I once again emphasise that this year, 2002, is a year of great opportunities to develop world standards and more active monitoring mechanisms with the ultimate goal to improve the living conditions of citizens, who happen to live with a disability. Let us use all these important opportunities and let us do it in the spirit of cooperation, transparency and full participation by the people concerned.

 

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[1] Jeremy Cooper, “Improving the Civil Rights of People with Disabilities Through International Law” in Jeremy Cooper (ed) (2000) Law Rights and Disability, London, Jessica Kingsley Publishers, p 71

[2] Gerard Quinn,“The international Covenant on Civil and Political Rights: A Conceptual Framework“ inDegener and Koster-Dreese (eds) Human Rights and Disabled persons, p 72

[3] see Bickenbach, J., Somnath, J., Bradley, E and Ustun, T. Models of disablements universalism and the ICIDH , Social Science and Medecine, 48, 9 1173

[4] ALRC 79 Ch 3 http://www.austlii.edu.au/other/alrc/publications/reports/79/ALRC79Ch3.html

[5] Inger Claessan Wastberg, „The Office of the Disability Ombudsman in Sweden Jones“ in Melinda Jones and Lee Ann Baasser Marks, (eds) Disability, Divers-ability and Legal Change, The Hague, Martinus Nijhoff, (1999) p. 131.

 

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