ACCESS TO HIV AND AIDS SERVICES AND PROGRAMMES FOR PEOPLE WITH DISABILITIES (Prepared for the UN Expert’s Meeting – New York, February 2007) Hendrietta Ipeleng Bogopane-Zulu Chairperson - South African Parliament at the National Assembly hbogopane@parliament.gov.za,
There are people with disabilities (PWD) in all parts of the world and at all level in every society. The number of PWD’s in the world is large and is growing. The causes and consequences of disability vary throughout the world, due to different socio-economic circumstances as well as the different provision that states make for the well being of their citizens. It is widely acknowledged that social factors such as ignorance, neglect, superstition have negatively impacted on the lives and socioeconomic conditions of PWD’s. Over the years disability policies have progressed from focusing on elementary medical care at institutions to provision of education for children with disabilities the rehabilitation for persons who become disabled during adult life. This progression has helped PWD and CWD to become more active as a driving force in further developing disability policies that are framed within a socio-economic context. The is a serious lack of reliable information, around the world about the nature, prevalence of disability and the quality of life’s of PWD’s surface to say, that in the main PWD’s continue to be excluded or marginalized from mainstream socioeconomic life and continue to experience difficulties in accessing their fundamental social, political, economic, human and natural rights. The HIV and AIDS epidemic remains a real challenge facing the world today. This challenge therefore comes at a time when the world is faced with many competing needs, redressing the imbalances of the past through transforming our society’s and integrating disabled people in to the global community is what this important convention seeks to do. Failure to respond to this epidemic will reverse all the developmental gains made in the last 20 years in the integration and recognition of disabled people as equal partners in society who request only that their dignity and human rights be respected and recognized. “Among the yardstick by which to measure a society’s respect for human rights, to evaluate the level of its maturity and its generosity of spirit, is by looking at the status that it accords to those members of society who are most vulnerable, disabled people, children and senior citizens.” (TM MBEKI) The recently adopted convention awards member states an opportunity to do exactly what is mentioned above not only on HIV and AIDS issue but on every program/service rendered by the state for its citizens of which most excludes those who need them most.
Prepared by Hon. Hendrietta Bogopane-Zulu (mp)
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The convention has been welcomed by disabled people globally as a document that will help the implementation of international law to create the realization of the rights and dignity of disabled people. The convention will improve and cement the foundation the UN decade of disabled people and the 22 standard rules build. Disability is a cross cutting issues, and by no means homogenous. It must therefore be recognised that what ever negative impacts on the world’s society, also impacts on the lives of disabled people. They experience the same threats like any other person in the face of HIV and AIDS pandemic. The current situation of disabled people places them not only at a high risk, but also at a vulnerable position in the absence of adequate public support systems and community safety nets which ultimately increase and pushes them further in to perpetual poverty. Disabled people are more at risk of becoming HIV+ if not more than their able-bodied peers, the impoverishing living conditions leads to mentally and emotional abuse. The high level of discrimination towards disabled people generally, makes it also difficult for them to be included in HIV and AIDS programmes as they are perceived to be asexual. Different countries have launched HIV and IADS strategic plans in response to the political declaration adopted at the HIV and AIDS special session held in New York in May/June 2006, but most of them if not all have not consulted, included nor recognized disabled people’s special needs and the impact of HIV and AIDS on them as infected and affected people. They are not recognized as users no providers of essential services to combat HIV and AIDS> for those countries who believe they have included them only mentioned them and went ahead to develop programmes not including them, others have recognized hem as a vulnerable group but don’t know how to respond to the challenges facing disabled people in their diversity. Superstition in Africa remains another challenge as most believe that there is no need for disabled people to be included as they are asexual and therefore will not be affected. The impact of HIV and AIDS on disabled people at a glance with a focus on: o o o o o o o prevention treatment, volunteering counseling and testing, care and support, education and information research monitoring and evaluation
Who constitutes the disability sector in relation to their special needs be recognized and what kind of programmes and how they can be made accessible to disabled people
Prepared by Hon. Hendrietta Bogopane-Zulu (mp)
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Disabled women:
self empowerment programmes for disabled women to developed their self esteem, condom negotiation, and disabled women as care givers, microbosides and their benefits as a prevention strategy for disabled women, counselling and general HIV and AIDS information Disabled youth: they are generally excluded from youth messages, activities, we need to develop their confidence, build their sense of self and facilitate their inclusion in HIV and AIDS programmes for young people. Parents of disabled children; need to be empowered, support and educated on how to raise a confident disabled child, coping and supporting your child. How to help them deal with their sexuality. Their understanding that their disabled children need the same information and more about sex and sexuality than none disabled children Care-givers; a number of disabled people rely on care-givers for their survival, the initiative will ensure that disabled people in need of care and those providing the care are empowered, equipped with the relevant information such as home-based care, they will also be assisted to provide the care with dignity and respect while they protect both their clients and themselves from the virus. They are also equipped with general information on STI, TB and any other disease so as to care for their clients with pride Blind people access to information in formats such as Braille, large print and audio cassettes. The development of a one on one prograame on the correct use of a condom and any other prevention method. A relevant treatment literacy programme for blind people needs to be developed. Deaf people: the development of sign language with a especial focus on developing universal HIV and AIDS related signs to ensure information sharing and distribution across boundaries. Ensure access to counselling, confidentiality and consistent Mental disabilities: This group is more vulnerable to sexual abuse; they are also target as they are perceived to be asexual. This is fuelled by the myths around virgins curing HIV and AIDS. Awareness programmes on mental health and its relationship to HIV and AIDS and HIV and AIDS related messages needs to be simplified for the group. Manuals for those providing care on behaviours change will also be developed. Intellectual disabilities; this group includes those with Autism and Down syndrome and cerebral palsy amongst others. They are usually left out as most messages are developed without them in mind. Simplified versions on universal precautions, basic facts about HIV and AIDS, what to do when abused as well as making the courts accessible through intermediaries to increase reporting and prosecutions for
Prepared by Hon. Hendrietta Bogopane-Zulu (mp)
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those using and committing crimes against people with these disabilities. Deaf-Blind people: they are the most vulnerable group within the disability sector, we will develop tectile as a language, develop models that will symbols HIV related matters that will assist them in sharing information across borders. They will also benefit from Braille docs developed for blind people as well as the one on one correct use of the condom. Sign and tectile interpreters: they are the world’s link to both Deaf and Deaf-Blind people. The success of any programme targeted at this group, access to HIV and AIDS related services and programmes will be made possible by them. Empowerment programmes, debriefing and information will ensure that they are well informed and are able to impart the right information to the people. Physically disabled people; this group includes amongst others amputees, quadriplegics, paraplegics and those with polio. Epilepsy: disabled people with epilepsy are already on life saving drugs, the need for more research with regards to the relationship between ARV and their epilepsy related drugs. Programmes on treatment literacy for disabled people will be developed. HIV and AIDS related cancers: a number of cancers causes disabilities, and this group of people some remain on their cancer related medication either to make them fill better or the prevention of the spread of cancer, the relationship and ethnicity of which drugs take priority in a situation such as the person having both cancer and requiring Arts will be further researched. Disabled children disabled children are usually not included in programmes looking at orphaned and vulnerable children. Their inclusion in such programme is critical and will be facilitated. Disabled and child friendly material on HIV and Disability will be developed especially for those disabled children in schools. What we need to do to make access a reality for disabled people and none disabled people o o o o o o break the silence educate and inform and end ignorance and fear prevent prejudice, discrimination and stigma mobilise action create a focal point for HIV and AIDS and Disability lobby for HIV and AIDS legislation that is sensitive and responds to disability issues o give top priority to protect those who are vulnerable to HIV and those living with the virus o advocate for effective HIV and AIDS education and counselling
Prepared by Hon. Hendrietta Bogopane-Zulu (mp)
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o Push for health systems that recognise the special needs of disabled people and responds to them o Fight poverty and deprivation Disabled people have hope that they will defeat HIV and AIDS; they are more likely to adopt and maintain safe behaviour. Wherever the spread of HIV and AIDS has slowed or even declined, it is primarily because Men and Women have been given the tools and incentives to protect themselves against HIV. Although we don’t have a cure for HIV, we do know that consistent and courageous policies can halt the spread of the diseases and let those infected with HIV live a normal and dignified live. To meet these objectives, our commitment must contain four essential elements and: PREVENTION, TREATMENT, and HUMAN RIGHTS AND RESOURCES. The greater our diversity, the richer our capacity to create new visions. The acknowledgement of our differences and the need to celebrate them as capacities rather than deficiencies. Life must be examined to be lived fully, it may be painful, but the enquiry can be the beginning of building new personal futures. You owe us a debt of gratitude as we present you with this magnitude of change, hence including us can and will not be simply for our own benefit, it is also for your health and benefit
Prepared by Hon. Hendrietta Bogopane-Zulu (mp)
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