CHALLEGES OF DISABILITY, VISIBILITY, AGENDA

AS A HUMAN RIGHTS

A PAPER PRESENTED ON THE 8TH SEPTEMBER BY JOSEPHINE SINYO AT LELDEN NETHERLANDS INTRODUCTION:I feel humbled and greatly privileged to share with you disability

concerns in my country from a human rights framework perspective. This paper supports a broader effort by Persons With Disabilities ( P. W. Ds) themselves to raise public awareness of their rights, to challenge stereotypes, and to remove false perceptions of disability. The key disability issues raised in this paper therefore, are by no means conclusively comprehensive and unique to Kenya, but they are a basis for greater understanding of the complex, dynamic and multi-faceted ways in which P.W.DS are excluded from full and equal participation in society globally. Like elsewhere, in Kenya P.W.DS continue to face barriers that prevent them from enjoying their full civil, political, economic, social, cultural, religious and development rights. This is largely due to widespread ignorance and prejudice in societies. It is also because some legislation fails to protect the rights of P.W.Ds and to meet the standards and principles of international human rights instruments. Thus, while much has been achieved in making human rights central to our democracy, we still have a long way to go to make the rights real for all our people because, for millions of P.W.Ds the enjoyment of freedom of independence is marred by inequality, discrimination, torture, abuse, segregation, exclusion, deprivation and societal neglect. Certainly, this is very dishartening

Disability is a human rights issue! I repeat: disability is a human rights issue. Those of us who happen to have a disability are fed up with being treated by the society and our fellow citizens as if we did not exist or as if we were aliens from outer space. human beings with equal value, claiming equal rights! If asked, most people, including politicians and other decisionmakers, agree with us. The problem is that they do not realize the consequences of this principle and they are not ready to take action accordingly. Speech by Bengt at Lindqvist, the Special Rapporteur Congress Janeiro, 25? on of 30 We are

Disability of the United Nations Commission for Social Development, Rehabilitation August 2000 HUMAN RIGHTS Human rights are those rights that every human being possesses and is entitled to enjoy simply by virtue of being human. The definition of a being in this context traverses biological and social differences of gender, race, colour, language, national origin, age, class, religion and political beliefs, disability, minority status, etc. human being. As individual human beings, we each have an innate sense of the Human rights are birthrights, God given, natural, inalienable and are what makes one a nineteenth Rio de International,

fundamental rights and freedoms that belong to us, and that cannot be 2

denied by any government. Human rights exist in order to protect the basic dignity of human life, as embodied in the United Nations Declaration of Human Rights. The notion of human rights lies at the core of contestation between those who exploit/oppress/Rule and those who produce create and yet they are disempowered. It is embedded in an ethos that recognizes and acknowledges that every human being has:1. Dignity-claims of respect, life worthy of a human being 2. Integrity 3. Personhood 4. Equality valuing difference. The above four underpin ones identity as a human being. The above four notions are different in nature and are our inalienable rights. No one else can give them to us, not even the state, hence you must protect them when someone tries to take them away from you. This is because you inherently get these rights as soon as you are born and enter the human space that is the earth. Human rights are never given, you must struggle to get them. Since we live in a society that is class based, there is always room for oppression by the haves over those who do not have and there are always struggles. Human rights are the standards of behaviour as accepted within legal systems concerning:1) What is essential to human survival? 2) Integrity and autonomy of the person, 3) Fulfillment of the human potential in society and 4) Solidality social support for a free and equal people. 3

These rights commonly include the right of life, the right to an adequate standard of living, the prohibition of genocide, freedom from torture and other mistreatment, freedom of expression, freedom of movement, the right to self-determination, the right to education, and the right to participation in cultural, religion and political life. These norms are based on the legal and political traditions of United Nations member states and are incorporated into international human rights instruments (see below). United Nations Declaration of Human Rights (UDHR) International Covenant on Civil and Political rights (ICCPR) International Covenant on Economic, Social and Cultural rights (ICESCR) Convention on the Prevention and Punishment of the Crime of Genocide Convention against Torture Convention on the elimination of All forms of Racial Discrimination Convention on the elimination of all forms of Discrimination Against Women (CEDAW) Convention on the Rights of the Child (CRC) Rome Statute of the International Criminal Court

Characteristics That Human Rights Possess, Human rights are entitlements to all humankind without any distinction and characterized as follows:Universal every human society. - they are due to every human being in

Inalienable flow

- Cannot be taken away because they From and protect human existence.

Interdependent Indivisible

- Are inter-related. -Cannot be separated into parts.

If a right is inalienable, that means it cannot be bestowed, granted, bartered, or sold away (e.g., one cannot sell oneself into slavery). Rights may also be non-derogable (not limited in times of national emergency); these often include the right of life, the right to be prosecuted only according to the laws that are in existence at the time of the offense, the right to be free from slavery, and the right to be free from torture. The core problem: the invisibility of people with disabilities in the system of (a) Freedom

The phenomenon of invisibility

The above-mentioned values and the system of basic freedoms that they underpin are worthy of universal approval. The problem is not the values themselves or the system of basic freedoms that they postulate but the fact that they are either not applied or are applied differently to people with disabilities. This is a legacy of the past, when people with disabilities were often virtually invisible citizens of many societies. They have been marginalized in nearly all cultures throughout history. A common reaction (on the part of both the general public and policymakers) was either pity or revulsion. There was a tendency to take the

relative (or sometimes absolute) invisibility of persons with disabilities for granted or to accept it as natural. The difference of disability was perceived as a ground for exclusion rather than a cause for celebration of the diversity of the human family. The greater the tendency to construct everyday life with only the able-bodied in mind and the greater the lack of a physical presence of disabled persons in the mainstream, the more natural this assumption appeared to be. Much of the exclusion was funded by welfare programmes that were more conducive to entrapment than to liberation. The most extreme form of marginalization is elimination. It should never be forgotten that people with disabilities were one of the main and earliest victims of the Nazi concentration camps. The United Nations human rights machinery is largely a response to the atrocities of that period. Invisibility has also led to a tendency to disregard the normal legal protections for the advancement of human freedom that we take for granted. It is as though existing legal protections are either not applied or are applied with much less rigour in the case of persons with disabilities. One of the main tasks of the international human rights system in this field is to make societies aware of the contradiction between their self-professed values and their application (or rather their non-application or misapplication) in the context of disability. (b) Double invisibility some are more invisible than others

Some groups of people with disabilities are more invisible than others. Children with disabilities have traditionally been seen as less worthy of social investment (for example through education) than other children. Women with disabilities often suffer double discrimination. Other 6

minority groups, including racial and ethnic minorities, fare little better. People with intellectual disabilities find it difficult in many societies to make progress or at least as much progress as other groups with disabilities. Three human rights conventions have a major role to play in countering double invisibility: the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW), the Convention on the Rights of the Child (CRC) and the International Convention on the Elimination of all Forms of Racial Discrimination (ICERD)

(c)

Effects of invisibility of civil rights

The relative invisibility of people with disabilities can have a dramatic impact on their enjoyment of civil rights. The right to life has been violated through abortion on the basis of disability. are challenges that still exist. The right to freedom from torture and from inhuman and degrading treatment may also be violated where people with disabilities are institutionalized. Persons with mental disabilities or multiple or However well profound physical disabilities are particularly at risk. not be applied in practice. human dignity and autonomy. Euthanasia legislation and the phenomenon of selective medical non-treatment

regulated institutions may look on paper, the regulations may simply Standards of care and treatment In the past, the rights of these institutions may fall short of what is required to respect the value of marginalized and forgotten groups have not been championed either from outside the system (by NGOs) or from within, although there has been a palpable change in recent times. If society lived up to its aim of 7

achieving an independent life for all, many such institutions would not exist. The right to liberty is affected by institutionalization, also in the case of civil commitment of the mentally ill. There have been many changes for the better in due process requirements in cases of mental disability and in the development of a substantive right to treatment. But much still needs to be done. The fact that the norms applied to civil commitment in the past contrasted sharply with the structures of due process used in normal criminal trials shows the extent to which people with mental disabilities were viewed as different and how this difference was used to justify radically different levels of legal protection for their rights and interests. If one adopts a more imaginative approach to the concept of liberty, a host of challenges emerge. Most people take for granted the ability to move about in the built environment and to use normal channels of communication. factor this into their background understanding of liberty. although this ability is not designed on an inclusive basis. They But

universal, mainstream facilities are not It is important to characterize

inaccessible transport, an inaccessible built environment and an inaccessible communications environment as factors that detract to such an extent from the value of liberty that they call into question its existence for people with disabilities. disabilities, it is of little worth to them. Many restrictions are still placed on family and privacy rights for people with disabilities, specially those in institutions, throughout the world. Their right to adopt children on an equal footing with other is a 8 This is an admittedly broad definition of liberty. Yet if liberty is not defined broadly for people with

virtually unrecognized issue on which little has been written.

Some

categories of persons with disabilities seem not to enjoy full freedom of association. Legal incapacity still exists with respect to participation in legal proceedings and the giving of evidence. These rules seem to be premised on outdated notions of incapacity that fail to do full justice to the actual capacities of persons with disabilities. difference of disability. Equality norms in constitutions and other legislation often fail to cater adequately for the This situation is changing but a great deal remains to be done. (d) Effects of invisibility on political rights

Persons with disabilities often have no voice or a very feeble voice in the democratic process. Even where they have a strong voice, they are not necessarily listened to. A lack of participation in the political debate can result in policy being formed without the active involvement of groups likely to be affected by its outcome. It can lead to alienation from democratic processes and cynicism about the possibility of achieving justice through law. It can also lead to passivity and dependence factors that serve to reinforce stereotypes, compounding and perpetuating the invisibility of persons with disabilities. The right to stand for election and the right to vote are sometimes explicitly withheld from persons with disabilities. Even if the right to vote is protected by law, in practice a myriad of factors can render it hollow. These include the lack of accessible polling station, material (for example in Braille), campaign literature, transportation to and from polling stations. Over the past decade or so the disability NGO movement has grown considerably. Grievances are no longer experienced in isolation. This 9 Disability NGOs are beginning to speak a common language, the language of rights and to engage the political system directly.

phenomenon is worldwide and a hopeful sign for the future. people with disabilities are to make the most of impediments to political participation need to be removed. (e) Effects of invisibility on social policy

But if

it,existing

The assumption that people with disabilities were objects and not subjects and the tendency to react with pity rather than respect has had implications for the operation of welfare systems. Welfare was generally used to support people with disabilities or to compensate them for their absence from the mainstream of society. Governments treated disability solely as a welfare issue. The invisibility factor was discernible in the way many systems excluded children with disabilities from the ordinary education system and the benefits of vocational education and guidance. Where they were admitted to the mainstream, the resources appropriated to these children were often insufficient to ensure meaningful enjoyment of the right to education. When children with disabilities qualified and gained entry into colleges, they still faced seemingly insurmountable obstacles. Invisibility was also discernible in the assumption that people with disabilities had virtually no role to play in the open labour market. They were therefore channeled into segregated (and expensive) work environments. Employment prospects for persons with disabilities throughout the world are still dismal, to some extent reflecting low (unnecessarily low) levels of educational attainment and to some extent unwillingness to ensure that labour markets respond Working appropriately and positively to the difference of disability. Either way, we would argue, everybody loses, including the taxpayer. conditions in sheltered and other alternative forms of employment leave much to be desired in terms of the human rights of disabled 10

workers. (f) Effects of invisibility on freedom To sum up, the relative or absolute invisibility of persons with disabilities has meant that the legal structures created to advance private freedom (protection against the abuse of power) and public freedom (participation in the mainstream) have either not been applied or have been applied with less rigour in the case of people with disabilities. This has produced a category of person who, while being dependent on the public sphere for survival, lacks access to or influence over public policy. Such persons are denied full admission to public power and full control over their individual destiny. outside the mainstream of civil society. invisibility? They rain This lack of presence ? or

serves to reinforce stereotypical assumptions about the

incapacity of persons with disabilities. It encourages a lack of respect for people with disabilities as rights holders on an equal footing with others. PERSONS WITH DISABILITIES ACT ( 2003)

Today, the Kenyan with disability act is in place but many barriers remain. It is clear that the breaking down of many of this barriers require more than just laws. It requires attitudinal shifts. It is to this end that the government is faced with challenges to ensure that the rights entrenched in this act are enjoyed and that redress is right if they are transgressed. Hence, though the disability act is a landmark policy document in the struggle to create a just and equitable Kenyan society, by respecting the rights of the most vulnerable members, however, legislation alone will not cure inherent and deeply entrenched social disorders. We must all be committed to 11

explicitly and equitably including P.W.D s in all our plans and activities. In all sectors, planning and budgeting processes must accommodate the needs and rights of P.W.D s. The process of developing new strategies, laws and regulations must necessarily include P.W.Ds as equal partners, creating a culture in which we recognize difference, celebrate diversity, and ensure equality. Members of the public and government officials must be equipped with appropriate skills and knowledge to ensure the rights of P.W.D s and remove the barriers that deny them their rights. P.W.Ds is perpetrated, often overtly, perhaps When the above unintentionally. groups are not sensitive to disability issues, discrimination against Therefore, we have yet to make the letter and spirit of the disability act concrete realities, for our citizens with disability. Legislation alone cannot improve our society or guarantee human rights in practice but it does provide a vital framework and structure to set us in the right direction. In this way, the rights of P.W.Ds maybe promoted in a more stream-lined and mainstreamed way. An integrated process must take into account the diverse needs and circumstances of P.W.Ds. Even people with similar disability types may have different social, financial and physical environments and so our society should be more inclusive of people with diverse abilities and needs. homogenour group. They have a wide range of needs and circumstances that affect the ways in which their rights and equal access to social and economic opportunities can be enjoyed. The lack of physical access, both to and within built environments is a major factor contributing to the on-going exclusion of P.W.Ds mainstream society. In accessible environment denie from P.W.Ds their P.W.Ds are not a

rights to equality, dignity and freedom, amongst other fundamental 12

human rights That is accessibility for P.W.Ds means the opportunity to obtain an education, a job and housing, to form a family and contribute to society as equal partners. It is the key to exercising civil, political, economic, social, religious and cultural rights in society. A better future is possible for all our people. The majority of P.W.Ds can live independent and productive lives, particulary if they have access to opportunities, resources, environments and technical aids that allow them independence, dignity, self sufficiency and responsibility. The benefits of this process will accrue to all citizens in our quest for democracy and we must all remember that P.W.Ds have the right to represent themselves in all matters concerning them. understand the way in which P.W.D.s engrained as an agenda of development. To this end our new constitution is geared towards establishing a society based on democratic values, social justice,disability equity and fundamental human rights and freedom to improve the quality of life of all citizens and free the potential of each person to achieve genuinely enclusive society for all. Consequently, our conclusion is that the answer to invisibility is an insistence on the equal application of all human rights to persons with disabilities. In fact, if we are denied their rights then

attitudes and practices can change, and barriers can fall, and disability

13