Article contributed by Wong Kar Fai and Syamsuriatina Ishak, with photos by Adi Irman
“Disabilities are not what we do or do not have. They are what people create to satisfy their own ideals of living in a society.”
Dr Tiun Ling Ta, President of Persatuan Orang Cacat Anggota Malaysia
To celebrate the 62nd International Human Rights Day observed on 10 Dec 2010, the Bar Council Human Rights Committee (“BCHRC”) organised the Forum on the Persons with Disabilities Act 2008 at the Bar Council Auditorium on 12 Dec 2010. International Human Rights Day marks the anniversary of the United Nations’s adoption of the Universal Declaration of Human Rights in 1948.
The successful forum, attended by over 70 Bar Members and members of the public and press, was held at the Bar Council Auditorium. Alongside the forum, BCHRC organised the three–day Human Rights Debate 2010, focusing on rights of persons with disabilities.
The forum was assisted by master of ceremonies HR Dipendra, sign language translators Wan Zuraidahh bt Abu and Goh Soo Leng from the Malaysian Federation of the Deaf, and was moderated by Chairperson of BCHRC Andrew Khoo. In his opening remarks, George Varughese, Secretary of the Malaysian Bar, offered an apt and thought–provoking quote from Marian Wright Edelman, an American child development activist: “Service is the rent we pay for being. It is the very purpose of life, and not something you do in your spare time.”
The first speaker, Helen Chin, advocate and solicitor, spoke of Malaysia’s ratification of the United Nations Convention on the Rights of Persons with Disabilities. While acknowledging it was a step in the right direction towards addressing the violations of the rights of persons with disabilities, she noted with regret that the Malaysian Government has failed to sign the Optional Protocol to the Convention. This step would be necessary to provide persons with disabilities with the required mechanism to gain redress against rights violations, including by the Federal Government, from an international monitoring body. She illustrated how such provision was notably absent in the present Persons with Disabilities Act 2008 (“Act”). Helen also noted that despite Malaysia’s commitment to protect rights of members of society, it severely lacked legislation prohibiting discrimination against persons with disabilities, citing the legal provisions in Hong Kong as a good example.
The forum’s second speaker, Zakaria Yahya, was a visually–impaired teacher from Sekolah Menengah Pendidikan Khas, Setapak, Kuala Lumpur. He spoke on the role of music in the lives of visually–impaired people, illustrating how visually–impaired children are brought around to sing at functions from a young age, thus earning them loud applause. However, he questioned how many visually–challenged individuals are given actual opportunities to make a living within the music industry, without which they would inevitably be relegated to the status of mere street performers. Zakaria pointed out that although schools for the blind had been set up since the 1950s in Malaysia, music and music score reading in Braille are absent from their curricula.
Zakaria urged lawyers and Bar Council to establish a legal aid scheme for persons with disabilities, pointing out that visually–impaired persons have to deal with increasingly complex problems that require legal assistance and representation. He concluded with a call to spread awareness regarding the effect and legal implications of the Act amongst the general public and even the community of persons with disabilities.
The forum proceeded with a presentation by Dr Tiun Ling Ta, President of Persatuan Orang Cacat Anggota Malaysia, on the provision of education to persons with disabilities. His presentation gave a dose of reality to the audience, starting with the question, “Who is the person with disabilities – me or you all?” He lamented, “Disabilities are not what we do or do not have. They are what people create to satisfy their own ideals of living in the society,” noting with disappointment that even Government–owned media such as TV1, TV2 and Utusan use the demeaning term “Orang Kelainan Upaya”, instead of the standard Bahasa Malaysia term “Orang Kurang Upaya”.
Dr Tiun pointed out that the Federal Constitution specifically prohibits discrimination on the grounds of religion, race, descent, place of birth and gender, but discrimination against persons with disabilities is unfortunately omitted. In his opinion, this is a sad state of affairs, since persons with disabilities, like any other citizens, work, pay income tax and contribute to society; therefore, they possess the right to education and all other rights under the Federal Constitution. He expressed his view that the Act is “toothless” due to the provision in the Act that limits the liability of the Federal Government for violations of the rights of persons with disabilities.
Dr Tiun pointed out further that unfortunately, the struggle for rights of persons with disabilities in Malaysia is more charity–based rather than rights–based. The Act does not provide any clause for anti–discrimination but only “appeal” to the authorities, bearing words like merayu, meminta izin and hendaklah. The Act is therefore merely advisory in nature, as compared to the stark use of penal provisions in the National Service Act, where students face penalties for failing to report for training. He observed that the reality of the present situation is that persons with disabilities are a marginalised group and there is a total lack of political will to assist them. He asserted that an individualised plan to move children from special needs school to mainstream education is required. However, due to societal stereotyping, persons with special needs are often regarded and labelled as uneducable and ultimately unable to succeed in life.
Dr Tiun went on to expound the predicament of how school facilities are inaccessible to children with disabilities, thus preventing them from receiving a complete educational experience. He shared the experience of his acquaintance, an excellent sight–impaired teacher who was promoted from a special needs school to teach English in an ordinary school. Unfortunately, due to lack of general awareness and facilities such as Braille noticeboards, the teacher faced much difficulty in keeping abreast with developments at the school and was forced to hire an assistant to help mark students’ assignments.
Dr Tiun asserted that no matter how large the quota for persons with disabilities is in managerial or senior positions in the Government and private sectors, these positions cannot be filled if persons with disabilities are not given sufficient access to education to enable them to qualify themselves for such positions. Before concluding his speech, he urged the Government to at least build one school in each district so that persons with disabilities would have more access to educational facilities.
The fourth speaker for the afternoon was Dr Mymoon bt Alias, Deputy Director of the Family Health Development Unit of the Ministry of Health. She explained how her department works closely with the Department of Social Welfare and Education, in the continuous effort to meet needs of persons with disabilities. She was candid enough to admit that there is a lot more work for the Government to do in addressing these needs, and assured the audience as to its commitment. She lamented, however, that the Government faces problems with implementing its pledge. She took the crowd through a powerpoint presentation explaining the functions of the National Council for Persons with Disabilities, its roles in various ministries including receiving complaints, suggesting solutions, proposing them to the Cabinet, translating them into action and overseeing the implementation of the policies passed in line with the National Plan of Action and related programmes. She also informed the audience of World Health Organisation statistics estimating that 5% to 10% of people worldwide live with some form of disability, a third of whom are under 15 years old.
As a medical doctor, Dr Mymoon lent her knowledge on the services provided by the Health Ministry to ensure early detection and identification of children with disabilities, in order to prevent, rehabilitate and lessen the impact of their disabilities on their lives. The speaker concluded that the effectiveness of Government measures to assist persons with disabilities depends on the full cooperation and participation of all sectors.
The final speaker of the forum was Bathmavathi Krishnan, President of Persatuan Wanita Kurang Upaya. Bathmavathi, who has been in a wheelchair for 35 years since a road accident at the age of 21, shared her experiences in coping with a disability, despite scarce information on disabilities and there being no internet facilities at that time. She recounted incidents of discrimination and difficulties encountered in performing her daily routine, from looking for a job to finding a mechanic to modify her vehicle for wheelchair use.
Bathmavathi aroused applause from the audience when she questioned why we are not moving forward, despite better facilities like the internet and numerous awareness campaigns being held. The audience could not help but agree with her pronouncement, “We have rights like the others; aren’t we the same as everyone else?” She said she was forced to conclude that the bottom line is that persons with disabilities are not a priority as far as the Government is concerned. She declared, “Every year the Government would ask us, what do you need, what do you need, and every year we would send our Memorandum. Year after year. Nothing has happened!”
Bathmavathi pointed out that although there are mechanisms within the Act that allow for recommendations to be made to amend other Acts, all this comes to naught due to the lack of political motivation to take proactive measures. She reminded the crowd that rights and issues of persons with disabilities must continuously be on the national agenda, and not just brought up during the election campaign period. Bathmavathi got the crowd riled up again when she pointed out that monies used for decorative pavements, ornaments, fancy seminars, conventions and other unnecessary expenses should instead be channelled towards concrete, practical measures that would assist and support the community of persons with disabilities.
The forum proceeded to allow audience participation with a “Question and Answer” session.
A member of the audience, Chin, began by propagating the use of information and communication technologies as a way of communication, illustrating an existing “Friends Serving Persons with Disabilities” community model. The audience was reminded once more of the harsh reality of living as a person with disabilities when Thanga, a polio sufferer, shared his story and hit out against the red tape faced by persons with disabilities. He cited an example drawn from his own experience where his application to the Social Security Organisation, seeking compensation for aggravated disabilities suffered from heavy workload at his workplace, was rejected.
Associate Professor Dr Amara Naicker, Head of Rehabilitation Medicine Unit and Consultant Rehabilitation Physician of the Malaysian National Hospital, commented on rehabilitation consultations at clinic level where patients come by the dozens, leaving doctors absolutely unable to cope and having nowhere to refer them. She called upon Dr Mymoon to look into facilities for special needs schools in Malaysia and to investigate how her department could provide assistance for special needs children, such as placing inhouse nurses in all schools attended by special needs children. As an example, she cited child patients suffering from spina bifida who require assistance to perform urinary catheterisation once every four hours to prevent damage to their kidneys. Having worked and conducted research with the Spina Bifida Society, Dr Naicker pleaded for assistance and resources from the Ministry officials present at the forum.
In response, Dr Mymoon admitted while spina bifida is a known and prioritised condition in Malaysia, it has yet to be comprehensively looked into. She explained that although inhouse nursing is not currently available in schools, the Ministry adopts a holistic approach through a homecare nursing service in addition to setting up of multidisciplinary teams, including pediatricians, to assess, intervene and/or rehabilitate the persons with disabilities.
Zakaria, on the other hand, lamented the lack of awareness programmes carried out by the Government. He noted that there are times when even relatives of persons with disabilities lacked understanding as to the issues affecting persons with disabilities. He reminded the crowd of the reality that there is still a lot more to be done, pointing out that policies that look good on paper could still fail due to lack of proper implementation.
Dr Tiun stated it is unfortunate that insurance companies often exclude liability for injuries suffered by the disabled, labelling these as being due to a “pre–existing condition”. He also noted that due to a lack of awareness, there are instances when an employer wants to employ a person with disabilities, but does not know how to go about it.
Christine Lee proposed Bar Council to establish a working committee to address complaints of persons with disabilities, and issues relating to their rights.
Norani Hashim, Deputy Director General of the Department of Social Welfare, highlighted two recent areas of development within the Ministry. First, the human resource departments of all ministries had resolved to formulate a plan to employ persons with disabilities. Second, the Pihak Berkuasa Tempatan, plan to work together with architects and social planners to make buildings more accessible to persons with disabilities.
In response to Norani Hashim’s comment and a student’s question regarding the cost involved in improving infrastructure, Bathmavathi pointed out that despite the existence of bylaws regulating buildings, numerous buildings built had failed to consider accessibility for persons with disabilities. She stressed that action should be taken to rectify and monitor these buildings. She added that the cost of building access–friendly facilities is not excessively high and pointed out, “To build a flight of stairs is more expensive than ramps. Less bricks are used for a ramp compared to stairs!”
Closing remarks were presented by Mohammad Faizal bin Che Yusof, a sight–impaired advocate and solicitor of nine years’ standing, member of BCHRC and the head of the Forum’s organising team. Mohammad Faizal stated that the purpose of this forum was to increase awareness amongst members of public on the rights of persons with disabilities, pointing out that even able–bodied persons may one day have to suffer the effects of living with disabilities. He quoted an example of the celebrated case of Tan Tek Seng v Suruhanjaya Perkhidmatan Pendidikan & Another [1996] 1 MLJ 261, where the Court of Appeal held that “the right to live includes the right to work.” Mohammad Faizal simply posed the following question to the audience, “How to live if one cannot find work?”
To answer a question posed by a student, Mohammad Faizal echoed the views of other speakers that it is very frustrating that Malaysia, when ratifying the United Nations Convention on Persons with Disabilities, reserved its position in relation to the provision of mechanisms for redress, and expressly prohibited legal action against the Government for violating the rights of persons with disabilities.
Mohammad Faizal revealed that he had specifically invited Members of Parliament and state legislatures to attend the forum, in an attempt to raise their awareness on issues facing persons with disabilities, especially since Parliament had passed the Act with hardly any debate, betraying the Parliamentarians’ lack of understanding on the subject. Mohammad Faizal noted that the politicians clearly lacked interest, since no one responded to his invitation.
The forum was assisted by master of ceremonies HR Dipendra, sign language translators Wan Zuraidahh bt Abu and Goh Soo Leng from the Malaysian Federation of the Deaf, and was moderated by Chairperson of BCHRC Andrew Khoo. In his opening remarks, George Varughese, Secretary of the Malaysian Bar, offered an apt and thought–provoking quote from Marian Wright Edelman, an American child development activist: “Service is the rent we pay for being. It is the very purpose of life, and not something you do in your spare time.”
The first speaker, Helen Chin, advocate and solicitor, spoke of Malaysia’s ratification of the United Nations Convention on the Rights of Persons with Disabilities. While acknowledging it was a step in the right direction towards addressing the violations of the rights of persons with disabilities, she noted with regret that the Malaysian Government has failed to sign the Optional Protocol to the Convention. This step would be necessary to provide persons with disabilities with the required mechanism to gain redress against rights violations, including by the Federal Government, from an international monitoring body. She illustrated how such provision was notably absent in the present Persons with Disabilities Act 2008 (“Act”). Helen also noted that despite Malaysia’s commitment to protect rights of members of society, it severely lacked legislation prohibiting discrimination against persons with disabilities, citing the legal provisions in Hong Kong as a good example.
The forum’s second speaker, Zakaria Yahya, was a visually–impaired teacher from Sekolah Menengah Pendidikan Khas, Setapak, Kuala Lumpur. He spoke on the role of music in the lives of visually–impaired people, illustrating how visually–impaired children are brought around to sing at functions from a young age, thus earning them loud applause. However, he questioned how many visually–challenged individuals are given actual opportunities to make a living within the music industry, without which they would inevitably be relegated to the status of mere street performers. Zakaria pointed out that although schools for the blind had been set up since the 1950s in Malaysia, music and music score reading in Braille are absent from their curricula.
Zakaria urged lawyers and Bar Council to establish a legal aid scheme for persons with disabilities, pointing out that visually–impaired persons have to deal with increasingly complex problems that require legal assistance and representation. He concluded with a call to spread awareness regarding the effect and legal implications of the Act amongst the general public and even the community of persons with disabilities.
The forum proceeded with a presentation by Dr Tiun Ling Ta, President of Persatuan Orang Cacat Anggota Malaysia, on the provision of education to persons with disabilities. His presentation gave a dose of reality to the audience, starting with the question, “Who is the person with disabilities – me or you all?” He lamented, “Disabilities are not what we do or do not have. They are what people create to satisfy their own ideals of living in the society,” noting with disappointment that even Government–owned media such as TV1, TV2 and Utusan use the demeaning term “Orang Kelainan Upaya”, instead of the standard Bahasa Malaysia term “Orang Kurang Upaya”.
Dr Tiun pointed out that the Federal Constitution specifically prohibits discrimination on the grounds of religion, race, descent, place of birth and gender, but discrimination against persons with disabilities is unfortunately omitted. In his opinion, this is a sad state of affairs, since persons with disabilities, like any other citizens, work, pay income tax and contribute to society; therefore, they possess the right to education and all other rights under the Federal Constitution. He expressed his view that the Act is “toothless” due to the provision in the Act that limits the liability of the Federal Government for violations of the rights of persons with disabilities.
Dr Tiun pointed out further that unfortunately, the struggle for rights of persons with disabilities in Malaysia is more charity–based rather than rights–based. The Act does not provide any clause for anti–discrimination but only “appeal” to the authorities, bearing words like merayu, meminta izin and hendaklah. The Act is therefore merely advisory in nature, as compared to the stark use of penal provisions in the National Service Act, where students face penalties for failing to report for training. He observed that the reality of the present situation is that persons with disabilities are a marginalised group and there is a total lack of political will to assist them. He asserted that an individualised plan to move children from special needs school to mainstream education is required. However, due to societal stereotyping, persons with special needs are often regarded and labelled as uneducable and ultimately unable to succeed in life.
Dr Tiun went on to expound the predicament of how school facilities are inaccessible to children with disabilities, thus preventing them from receiving a complete educational experience. He shared the experience of his acquaintance, an excellent sight–impaired teacher who was promoted from a special needs school to teach English in an ordinary school. Unfortunately, due to lack of general awareness and facilities such as Braille noticeboards, the teacher faced much difficulty in keeping abreast with developments at the school and was forced to hire an assistant to help mark students’ assignments.
Dr Tiun asserted that no matter how large the quota for persons with disabilities is in managerial or senior positions in the Government and private sectors, these positions cannot be filled if persons with disabilities are not given sufficient access to education to enable them to qualify themselves for such positions. Before concluding his speech, he urged the Government to at least build one school in each district so that persons with disabilities would have more access to educational facilities.
The fourth speaker for the afternoon was Dr Mymoon bt Alias, Deputy Director of the Family Health Development Unit of the Ministry of Health. She explained how her department works closely with the Department of Social Welfare and Education, in the continuous effort to meet needs of persons with disabilities. She was candid enough to admit that there is a lot more work for the Government to do in addressing these needs, and assured the audience as to its commitment. She lamented, however, that the Government faces problems with implementing its pledge. She took the crowd through a powerpoint presentation explaining the functions of the National Council for Persons with Disabilities, its roles in various ministries including receiving complaints, suggesting solutions, proposing them to the Cabinet, translating them into action and overseeing the implementation of the policies passed in line with the National Plan of Action and related programmes. She also informed the audience of World Health Organisation statistics estimating that 5% to 10% of people worldwide live with some form of disability, a third of whom are under 15 years old.
As a medical doctor, Dr Mymoon lent her knowledge on the services provided by the Health Ministry to ensure early detection and identification of children with disabilities, in order to prevent, rehabilitate and lessen the impact of their disabilities on their lives. The speaker concluded that the effectiveness of Government measures to assist persons with disabilities depends on the full cooperation and participation of all sectors.
The final speaker of the forum was Bathmavathi Krishnan, President of Persatuan Wanita Kurang Upaya. Bathmavathi, who has been in a wheelchair for 35 years since a road accident at the age of 21, shared her experiences in coping with a disability, despite scarce information on disabilities and there being no internet facilities at that time. She recounted incidents of discrimination and difficulties encountered in performing her daily routine, from looking for a job to finding a mechanic to modify her vehicle for wheelchair use.
Bathmavathi aroused applause from the audience when she questioned why we are not moving forward, despite better facilities like the internet and numerous awareness campaigns being held. The audience could not help but agree with her pronouncement, “We have rights like the others; aren’t we the same as everyone else?” She said she was forced to conclude that the bottom line is that persons with disabilities are not a priority as far as the Government is concerned. She declared, “Every year the Government would ask us, what do you need, what do you need, and every year we would send our Memorandum. Year after year. Nothing has happened!”
Bathmavathi pointed out that although there are mechanisms within the Act that allow for recommendations to be made to amend other Acts, all this comes to naught due to the lack of political motivation to take proactive measures. She reminded the crowd that rights and issues of persons with disabilities must continuously be on the national agenda, and not just brought up during the election campaign period. Bathmavathi got the crowd riled up again when she pointed out that monies used for decorative pavements, ornaments, fancy seminars, conventions and other unnecessary expenses should instead be channelled towards concrete, practical measures that would assist and support the community of persons with disabilities.
The forum proceeded to allow audience participation with a “Question and Answer” session.
A member of the audience, Chin, began by propagating the use of information and communication technologies as a way of communication, illustrating an existing “Friends Serving Persons with Disabilities” community model. The audience was reminded once more of the harsh reality of living as a person with disabilities when Thanga, a polio sufferer, shared his story and hit out against the red tape faced by persons with disabilities. He cited an example drawn from his own experience where his application to the Social Security Organisation, seeking compensation for aggravated disabilities suffered from heavy workload at his workplace, was rejected.
Associate Professor Dr Amara Naicker, Head of Rehabilitation Medicine Unit and Consultant Rehabilitation Physician of the Malaysian National Hospital, commented on rehabilitation consultations at clinic level where patients come by the dozens, leaving doctors absolutely unable to cope and having nowhere to refer them. She called upon Dr Mymoon to look into facilities for special needs schools in Malaysia and to investigate how her department could provide assistance for special needs children, such as placing inhouse nurses in all schools attended by special needs children. As an example, she cited child patients suffering from spina bifida who require assistance to perform urinary catheterisation once every four hours to prevent damage to their kidneys. Having worked and conducted research with the Spina Bifida Society, Dr Naicker pleaded for assistance and resources from the Ministry officials present at the forum.
In response, Dr Mymoon admitted while spina bifida is a known and prioritised condition in Malaysia, it has yet to be comprehensively looked into. She explained that although inhouse nursing is not currently available in schools, the Ministry adopts a holistic approach through a homecare nursing service in addition to setting up of multidisciplinary teams, including pediatricians, to assess, intervene and/or rehabilitate the persons with disabilities.
Zakaria, on the other hand, lamented the lack of awareness programmes carried out by the Government. He noted that there are times when even relatives of persons with disabilities lacked understanding as to the issues affecting persons with disabilities. He reminded the crowd of the reality that there is still a lot more to be done, pointing out that policies that look good on paper could still fail due to lack of proper implementation.
Dr Tiun stated it is unfortunate that insurance companies often exclude liability for injuries suffered by the disabled, labelling these as being due to a “pre–existing condition”. He also noted that due to a lack of awareness, there are instances when an employer wants to employ a person with disabilities, but does not know how to go about it.
Christine Lee proposed Bar Council to establish a working committee to address complaints of persons with disabilities, and issues relating to their rights.
Norani Hashim, Deputy Director General of the Department of Social Welfare, highlighted two recent areas of development within the Ministry. First, the human resource departments of all ministries had resolved to formulate a plan to employ persons with disabilities. Second, the Pihak Berkuasa Tempatan, plan to work together with architects and social planners to make buildings more accessible to persons with disabilities.
In response to Norani Hashim’s comment and a student’s question regarding the cost involved in improving infrastructure, Bathmavathi pointed out that despite the existence of bylaws regulating buildings, numerous buildings built had failed to consider accessibility for persons with disabilities. She stressed that action should be taken to rectify and monitor these buildings. She added that the cost of building access–friendly facilities is not excessively high and pointed out, “To build a flight of stairs is more expensive than ramps. Less bricks are used for a ramp compared to stairs!”
Closing remarks were presented by Mohammad Faizal bin Che Yusof, a sight–impaired advocate and solicitor of nine years’ standing, member of BCHRC and the head of the Forum’s organising team. Mohammad Faizal stated that the purpose of this forum was to increase awareness amongst members of public on the rights of persons with disabilities, pointing out that even able–bodied persons may one day have to suffer the effects of living with disabilities. He quoted an example of the celebrated case of Tan Tek Seng v Suruhanjaya Perkhidmatan Pendidikan & Another [1996] 1 MLJ 261, where the Court of Appeal held that “the right to live includes the right to work.” Mohammad Faizal simply posed the following question to the audience, “How to live if one cannot find work?”
To answer a question posed by a student, Mohammad Faizal echoed the views of other speakers that it is very frustrating that Malaysia, when ratifying the United Nations Convention on Persons with Disabilities, reserved its position in relation to the provision of mechanisms for redress, and expressly prohibited legal action against the Government for violating the rights of persons with disabilities.
Mohammad Faizal revealed that he had specifically invited Members of Parliament and state legislatures to attend the forum, in an attempt to raise their awareness on issues facing persons with disabilities, especially since Parliament had passed the Act with hardly any debate, betraying the Parliamentarians’ lack of understanding on the subject. Mohammad Faizal noted that the politicians clearly lacked interest, since no one responded to his invitation.