GEDC Forum on Reaching Beyond Boundaries: Transcending Disability Beyond Law's Boundaries, Transcending Law’s Disabilities by Low Hong Ping (James)
The following was presented by James Low Hong Ping at a forum organised by the Kuala Lumpur Bar Committee Gender Equality and Diversity Committee on 15 October 2018. The forum was titled “Reaching Beyond Boundaries: Transcending Disability.”
INTRODUCTION
Thank you very much for the kind introduction.
Good afternoon, ladies and gentlemen. First of all, I would like to thank the KLBC Gender Equality and Diversity Committee for inviting me to speak today. The title of my sharing today is “Beyond Law's Boundaries, Transcending Law’s Disabilities.”
Sorry if you came here expecting me to lament on my or my peers’ disabilities. We are not the problem. We have problems as much as all of us do in life generally. But we are not the problem. The problem partly lies in the law.
So I will be speaking from the legal perspective, looking at how disability rights have been bound by the deficiencies in law, and how we can reach beyond law’s boundaries and transcend law's disabilities.
My sharing is divided into four sections: First, I will discuss how Malaysia has not fully implemented the Convention on the Rights of Persons with Disabilities. Secondly, I will show that though the Federal Constitution of Malaysia does not expressly mention persons with disabilities, there is protection nonetheless. Thirdly, I will talk about the shortcomings of the Persons with Disabilities Act 2008. Finally, I will suggest that persons with rare diseases, among whom I am one of them, may still be protected despite the legal issues plaguing disability rights.
1 The Convention on the Rights of Persons with Disabilities
The Convention on the Rights of Persons with Disabilities (or known as “CRPD”) is the first United Nations human rights treaty of the 21st century. It is reported to be the most rapidly negotiated ever.[1] The CRPD was a response to an overlooked development challenge – according to the World Report on Disability published by WHO and World Bank in 2011, approximately 15% of the world’s population are persons with disabilities, out of which 80% live in developing countries.[2]
The CRPD responds by reaffirming that our rights are human rights and by strengthening respect for these rights.[3] In this regard, three out of eight General Principles of the CRPD are based on respect.[4] In short, the purpose of the CRPD is to promote, protect and ensure full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities and promote respect for our inherent dignity.[5]
Malaysia signed the CRPD on 8 April 2008 and ratified on 19 July 2010.[6] Having ratified the CRPD, Malaysia undertakes to perform the General Obligations provided in art 4 of the CRPD. A couple of noteworthy obligations are: first, to adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognised in the CRPD,[7] and secondly, to take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise.[8] On these two fronts, we have simply failed to implement legislative measures to eliminate disability discrimination.
Further, Malaysia has not ratified the Optional Protocol,[9] which allows an international supervisory Committee on the Rights of Persons with Disabilities to receive and consider communications from individuals who allege that his or her country has violated the CRPD.[10] In addition, Malaysia has considered itself not bound by Articles 15 and 18 – Article 15 provides for freedom from torture or cruel, inhuman or degrading treatment or punishment, and Article 18 liberty of movement and nationality.[11] The reservations on those two Articles take away the fundamental principles which underpin the CRPD.[12]
Ultimately, while the explicit recognition of the rights of persons with disabilities in CRPD is a crucial first step, the impact is contingent on individual countries’ actions. Critically, to realise the objectives of the CRPD, States parties must embed its principles in national law.[13] With that, I now turn to the Federal Constitution.
2 The Federal Constitution of Malaysia and Disability
The Federal Constitution (“Constitution”) is the supreme law of Malaysia and any law which is inconsistent with the Constitution is void to the extent of the inconsistency.[14] In other words, the Constitution is the highest law in Malaysia and any other law which is against the Constitution is invalid or unconstitutional.
Part II of the Constitution lists the fundamental liberties accorded to citizens of Malaysia or all persons. If any law restricts the fundamental liberties enshrined under Part II beyond the restrictions permitted by the Constitution, the law is invalid or unconstitutional.
Among the fundamental liberties housed under Part II, art 8(1) of the Constitution provides that “All persons are equal before the law and entitled to the equal protection of the law.” art 8(2) then prohibits discrimination on certain grounds unless sanctioned by the Constitution. Among the grounds, however, disability is not one of them.
Nonetheless, the principle of equality and the protection of equality before the law accorded by art 8(1) is all-encompassing. Although art 8(2) may not provide shelter to discriminated persons with disabilities, art 8(1) is open to all persons who seek refuge from inequality.
Even if our Constitution does not expressly protect our rights, legislation serves as an important role.[15] The principal legislation on our rights is the Persons with Disabilities Act 2008.
3 The Persons with Disabilities Act 2008
The Persons with Disabilities Act 2008 (“PWD Act”) came into force on 7 July 2008.[16] The PWD Act consists of five parts and 46 sections. The parts are: (1) Preliminary, (2) National Council for Persons with Disabilities, (3) Appointment of Registrar General, et cetera, and Registration of Persons with Disabilities, (4) Promotion and Development of the Quality of Life and Well-Being of Persons with Disabilities, and (5) General.
Particular mention should be made of Part IV of the PWD Act. This Part lays down the rights of persons with disabilities: Chapter 1 on Accessibility, Chapter 2 on Habilitation and Rehabilitation, Chapter 3 on Health, Chapter 4 on Protection of Persons with Severe Disabilities and Chapter 5 on Situations of Risk and Humanitarian Emergencies. Although the provisions in this Part lay down the rights, there are several issues with the PWD Act being a rights-based legislation:
1. The provisions in Part IV fall short of being offences if the rights are violated. The Human Rights Commission of Malaysia (SUHAKAM) submitted that it is important for the legislation to make discrimination of a person’s disability an offence.[17]
2. The PWD Act does not provide for an enforcement mechanism against those who discriminate against or fail to provide amenities for persons with disabilities.[18]
3. ss 41 and 42 of the PWD Act become the shield for any legal proceedings against the Government. Ikmal Hisham has opined that the sections must be abolished to ensure there is serious implementation of the PWD Act in accordance with international standards and laws in developed countries.[19]
An example of unlawful disability discrimination can be found in Hong Kong. s 38 of the Disability Discrimination Ordinance (“DDO”) provides that it is unlawful for a person who provides goods, services or facilities to harass another person with a disability who wants to acquire the goods or services or make use of the facilities.
In the same Ordinance, s 2(6) explains that a person harasses another person if the former engages in unwelcome conduct (which may include an oral or written statement) on account of the person’s disability in circumstances in which a reasonable person, having regard to all the circumstances, would have anticipated that the person would be offended, humiliated or intimidated by that conduct.
With respect to enforcement, the Hong Kong’s Equal Opportunities Commission (“Commission”) shall encourage persons who are concerned with the matter to which the act relates to effect a settlement of the matter by conciliation.[20] In this regard, the Commission possesses the power to conduct formal investigations,[21] power to obtain information[22] and may make recommendations and reports on the formal investigations.[23]
Notwithstanding the conciliatory interference by the Commission, the DDO provides that discriminated persons may initiate civil proceedings in like manner as any other claim in tort.[24] If liability is established, the court may various orders, including declarations of unlawful conduct, orders to perform acts to redress any loss or damage and general, punitive or exemplary damages.[25]
A case from Hong Kong that is worth examining is Ma Bik Yung v Ko Chuen.[26] The plaintiff was on a wheelchair and intended to get into the taxi that the defendant was driving. However, the defendant was unwelcome towards and unwilling to help the plaintiff; the taxi driver refused to assist the plaintiff into the car, reluctant to put the wheelchair into the boot and made rude and offensive remarks while they were on the journey.
The District Court held that the defendant’s act amounted to harassment and ordered the defendant to give a written apology and pay damages. However, the Court of Appeal quashed the District Court’s order of an apology from the defendant and the Court of Final Appeal affirmed the quashing.[27]
The lack of offences and the absence of an enforcement mechanism in the PWD Act reflect serious doubts as to whether the Government is committed in pursuing and advancing the rights of persons with disabilities.[28] Some quarters even questioned whether the PWD Act is disabled friendly or an attempt to discriminate.[29] It is pertinent that the principal legislation on disability rights has remedial provisions. This is as much important as the need to enshrine disability as one of the prohibited grounds of discrimination in art 8(2) of the Constitution.[30]
Despite the shortcomings of the PWD Act, it is my view that the legal protection as it is applies to persons with rare diseases as well.
4 The PWD Act and Persons with Rare Diseases
Malaysia does not have legislation on rare diseases. Consequently, Malaysia does not have an official definition of what is regarded as a rare disease. Besides, orphan drugs, which are drugs for persons with rare diseases[31] are listed as the world's top 10 most expensive drugs,[32] putting them out of the reach of most patients. Nonetheless, persons with rare diseases are still protected by the PWD Act.
s 2 of the PWD Act defines persons with disabilities as including those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society. The definition of persons with disabilities in the PWD Act is similar to how the CRPD defines persons with disabilities in Article 1. As such, the jurisprudence of Article 1 of the CRPD is of great assistance.
The Committee on the Rights of Persons with Disabilities[33] has found that albinism falls into the definition of persons with disabilities provided by Article 1 of the CRPD. In arriving at its conclusion, the Committee noted that “a human rights-based model of disability requires that the diversity of persons with disabilities… and the interaction between persons with impairments and attitudinal and environmental barriers… be taken into account.”[34]
The Committee's opinion was made based on paragraphs (i) and (e) of the Preamble of the CRPD, which respectively recognise the diversity of persons with disabilities and that disability is an evolving concept. Interestingly, the PWD Act also recognises that disability is an evolving concept in its Preamble.[35]
Hence, the PWD Act, specifically the basic human right of the access to health, applies to persons with rare diseases. This follows that persons with rare diseases have the right to the enjoyment of health on an equal basis with persons without disabilities[36] and the Government and the private healthcare service provider shall make essential health services available to persons with rare diseases, including genetic counseling, early detection of disabilities, timely intervention to arrest disabilities and treatment for rehabilitation.[37]
The Government is therefore urged to follow through on its promise prior to 14th General Election to increase the budget allocations and provide incentives to tackle rare diseases. In this regard, the Government has a public and constitutional duty and responsibility to fulfill this promise as access to health is a basic human right provided in the PWD Act.
CONCLUSION
I started my sharing today by saying that the problem partly lies in the law. Another part of the problem is our perception towards persons with disabilities – the attitudinal barrier. This in my humble opinion is an easier obstacle, for it only takes a decision to overcome the attitudinal barrier; a decision to reach beyond the boundary of what we think is normal into the reality that diversity is natural, a decision to descend to humility, ascend in empathy and transcend disability, a decision to make the world better, humanity closer and lives lovelier.
Thank you very much.
The script was first published on the website of WeCareJourney, whose permission was obtained prior to this republication.
[1] Secretary General Hails Adoption of Landmark Convention on Rights of People with Disabilities, Official Statement of the UN Secretary-General, 13 December 2006, UN DOC SG/SM/10797, HR/4911, L/T/4400, <http://www.un.org/News/Press/docs/2006/sgsm10797.doc.htm> accessed on 13 October 2018.
[2] World Health Organization and World Bank, Summary: World Report on Disability <http://apps.who.int/iris/bitstream/handle/10665/70670/WHO_NMH_VIP_11.01_eng.pdf;jsessionid=08A8E2593F368DD950BADAF93620ED95?sequence=1> accessed on 13 October 2018.
[3] United Nations – Disability, Frequently Asked Questions regarding the Convention on the Rights of Persons with Disabilities <https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/frequently-asked-questions-regarding-the-convention-on-the-rights-of-persons-with-disabilities.html> accessed on 13 October 2018.
[4] art 3, Convention on the Rights of Persons with Disabilities.
[5] art 1, Convention on the Rights of Persons with Disabilities.
[6] United Nations Treaty Collection, Convention on the Rights of Persons with Disabilities
<https://treaties.un.org/doc/Publication/MTDSG/Volume%20I/Chapter%20IV/IV-15.en.pdf> accessed on 13 October 2018.
[7] art 4(1)(a), Convention on the Rights of Persons with Disabilities.
[8] art 4(1)(e), Convention on the Rights of Persons with Disabilities.
[9] Convention on the Rights of Persons with Disabilities and its Optional Protocol, Signatures and Ratifications <http://www.un.org/disabilities/documents/maps/enablemap.jpg> accessed on 13 October 2018.
[10] art 1, Optional Protocol to the Convention on the Rights of Persons with Disabilities.
[11] United Nations Treaty Collection, Convention on the Rights of Persons with Disabilities
<https://treaties.un.org/doc/Publication/MTDSG/Volume%20I/Chapter%20IV/IV-15.en.pdf> accessed on 13 October 2018.
[12] Lim Chee Wee, Press Release: Time to remove all reservations and sign the Optional Protocols” (The Malaysian Bar, 8 July 2010).
[13] Amy Raub, Isabel Latz, Aleta Sprague, Michael Ashley Stein and Jody Heymann, “Constitutional Rights of Persons with Disabilities: An Analysis of 193 National Constitutions” Harvard Human Rights Journal, 2016, Vol. 29, p. 204 at p. 205.
[14] art 4(1), Federal Constitution, Malaysia.
[15] Amy Raub, Isabel Latz, Aleta Sprague, Michael Ashley Stein and Jody Heymann, “Constitutional Rights of Persons with Disabilities: An Analysis of 193 National Constitutions” Harvard Human Rights Journal, 2016, Vol. 29, p. 204 at p. 238.
[16] P.U. (B) 268/2008, Malaysia.
[17] Human Rights Commission of Malaysia, Report on Persons with Disabilities: Submission on the Proposed Legislation on the Rights of Persons with Disabilities.
[18] The Coalition of Malaysia NGOs in the UPR Process, Universal Periodic Review on Malaysia for the 4th Session of UPR February 2009, para. C6.
[19] Ikmal Hisham bin Md. Tah, “A Need For Remedial Provision To Protect Persons With Disabilities In Malaysia,” Proceeding of the Kuala Lumpur International Business, Economics and Law Conference at Kuala Lumpur, December 2-3, 2013, 9-15, p. 11.
[20] s 62(1)(d), Disability Discrimination Ordinance, Hong Kong.
[21] s 66, Disability Discrimination Ordinance, Hong Kong.
[22] s 68, Disability Discrimination Ordinance, Hong Kong.
[23] s 69, Disability Discrimination Ordinance, Hong Kong.
[24] s 72(1), Disability Discrimination Ordinance, Hong Kong.
[25] s 72(4), Disability Discrimination Ordinance, Hong Kong.
[28] Khaizan Sharizad, “The disabled have rights, too” (The Star, 4 March 2010) <http://www.thestar.com.my/story.aspx?file=%2f2010%2f3%2f4%2ffocus%2f5779213&sec=focus> accessed on 13 October 2018.
[29] Ainul Jaria Maidin, “Legal Framework Regulating for Improving Accessibility to Built Environment for Disabled Persons in Malaysia”, at p. 4 <http://ssrn.com/abstract=1992205> accessed on 13 October 2018.
[30] Working Group of the Disabled, Human Rights Committee, Malaysian Bar Council, Memorandum Bangkit 2012, 17 Mac 2012 <http://www.malaysianbar.org.my/index.php?option=com_docman&task=doc_view&gid=3655> accessed on 13 October 2018.
[31] Pacific Bridge Medical, “Orphan Drugs in Asia 2017” <https://www.pacificbridgemedical.com/wp-content/uploads/2014/03/Orphan-Drugs-in-Asia-2017.pdf> at p. 1, accessed on 13 October 2018.
[32] Pharmaceutical Research and Manufacturers of America (PhRMA), “2005 - 2015: A Decade of Innovation
in Rare Diseases” <https://www.phrma.org/report/2005-2015-a-decade-of-innovation-in-rare-diseases> accessed on 13 October 2018.
[33] CRPD/C/18/D/22/2014.
[34] CRPD/C/18/D/22/2014 at para 7.6.
[35] Preamble, para. 1, Persons with Disabilities Act 2008, Malaysia.
[36] s 35(1), Persons with Disabilities Act 2008, Malaysia.
[37] s 36(1), Persons with Disabilities Act 2008, Malaysia.