okurightsmatter

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Malaysia has a long-standing practice of making policy decisions and planning programmes for us persons with disabilities and care partners – without engaging us. This practice has yielded poor results that failed to address real OKU needs. The new unity government has a fresh chance to undo this harmful practice, by proactively and meaningfully engage persons with disabilities and care partners in policy decision-making and programme planning.

For more info visit us: https://supportokurights.wordpress.com/2024/10/26/letter-nothing-about-us-without-us/

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Each year we celebrate a number of disability days, often with the involvement of the Ministry of Women, Family and Community Development (KPWKM), Ministry of Health (MOH) and, at times, the Ministry of Education (MOE). Recently, we observed World Autism Awareness Day (2 April). In March, we celebrated World Down Syndrome Day (21 March). There are also International Day of Persons with Disabilities (3 December), World Cerebral Palsy Day (6 October), Invisible Disabilities Week (17–23 October) and many others. These events will usually have statements made by the relevant ministers, invariably illustrated by photo-ops of the ministers with persons with disabilities and some infographics or images on the respective social media pages of KPWKM, MOH and MOE.

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Kami merupakan ahli komuniti Orang Kurang Upaya (OKU) yang terdiri daripada individu OKU, aktivis hak OKU, rakan sepenjagaan dan individu-individu sekutu kepada OKU. Kami amat kecewa sekali dengan kenyataan dan pendirian anda baru-baru ini dalam wawancara profil dengan laman berita atas talian Malaysiakini yang telah diterbitkan pada 22 April 2024 — yang dibawa ke perhatian komuniti OKU kami pada 1 Mei. Suara kami mencerminkan kepelbagaian realiti kehidupan kami..

For more info visit us: https://medium.com/@okurightsmatter.dev/surat-terbuka-kami-perlukan-pemimpin-oku-yang-seiring-bersama-kami-bukan-menentang-suara-kolektif-eabe8ea9b8ad

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LETTER | Confirmation that our fifth prime minister Abdullah Ahmad Badawi, fondly known as Pak Lah, is living with dementia throws a spotlight on a condition that affects nearly 300,000 Malaysians. Health Minister Khairy Jamaluddin acknowledged the gaps in care and services. He pledged to increase investments in social care and proposed to set up a joint committee with the Women, Family and Community Development Ministry.

For more info visit us: https://okurightsmatter.blogspot.com/2024/10/letter-make-malaysia-dementia-inclusive.html

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Aida (Autism Inclusiveness Direct Action Group), along with our allies, express deep disappointment over the remarks made by Human Resources Minister V Sivakumar at the 16 October press conference held at the Parliament building

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Letter: AIDA and Allies Urge Legal Protection for OKU in Hiring Process and Workplace

Aida (Autism Inclusiveness Direct Action Group), along with our allies, express deep disappointment over the remarks made by Human Resources Minister V Sivakumar at the 16 October press conference held at the Parliament building.

“The country’s laws on workplace discrimination cover persons with disabilities as well, and there is no need to enact specific legislation for this group,” he said.

The Minister’s statement reflects a lack of understanding and acknowledgment of the systemic barriers faced by persons with diverse disabilities in job search, recruitment and employment.

He further substantiated his statement by pointing out that the government had only received eight reported cases up to 30 September, none of which involved discrimination faced by employees with disabilities.

In response to the Minister’s statement, we raise four key points:

1. OKU Exclusion in the Hiring Process

Persons with disabilities consistently face exclusion during the hiring process, battling biases and discrimination from the outset. Long-standing government failure to address this problem perpetuates the systemic issue, leaving disabled persons marginalised.

With this bias in the hiring process, many persons with disabilities are forced to hide their disability for fear of being discriminated against. A case in point: a blind university graduate with first-class honours was handed RM50 and told to go home when he showed up in person for a job interview that he had been shortlisted for.

Global data show that 80 to 90 per cent of working-age persons with disabilities are unemployed in developing countries. Yet, Malaysian data regarding the employment status of persons with disabilities are not available in the public domain, and are not disaggregated by gender, age, and disability.

The poverty of Malaysian data obscures the true extent of issues faced by persons with diverse disabilities in the job search, recruitment, employment, and job retention process.

2. 1% OKU Public Sector Employment Mandated

The implementation of Malaysia’s commitment to hiring 1 per cent of persons with disabilities in the civil service is a dismal failure. Except for the Ministry of Women, Family and Community Development, this mandate remains unfulfilled.

In 2021, it was reported that only 0.35 per cent of employees in the civil service were persons with disabilities, much lower than the targeted 1 per cent quota for the public sector.

Government inability to meet its own policy target raises serious concerns regarding its commitment to inclusivity as demonstrated via disability inclusion.

The Minister missed seizing the opportunity to address the real issue: the absence of reported cases of workplace discrimination against persons with diverse disabilities is actually indicative of the fact that most of us are not getting employed in the first place.

3. Critical Amendments to the Persons with Disabilities Act, 2008

Malaysia urgently needs comprehensive amendments to empower persons with disabilities and uphold and protect our rights.

We stress the urgent need for the:

Establishment of a disability tribunal to ensure affordable and disabled-friendly access to justice;

Appointment of an independent disability commissioner with authority to track implementation and enforcement and troubleshoot gaps in the building and strengthening of disability-related multi-ministerial coordination and cooperation;

Introduction and implementation of legal provisions for the rights of women and girls with disabilities.

Persons with disabilities have distinct needs and rights. The Employment Act, as it stands, does not suffice for protecting and upholding the rights of persons with disabilities in the entire process of job search, recruitment, employment and continuous learning and career advancement.

4. Claim of Only 8 Reported Cases, None Involved Discrimination Against Disabled Employees

This claim is based on serious flaws in logic and understanding of the depth and pervasive impact of discriminatory practices. The lived reality is that most persons with disabilities acquiesce in the face of discrimination.

Many of us are enslaved by widespread discriminatory practices. We have little choice and no experience of access to justice when we experience discrimination. Most of us do not have a basic grasp of legal literacy.

Since the country’s independence, mechanisms for reporting discrimination cannot be accessed by persons with disabilities. This fact can no longer be ignored in 21st century Malaysia.

Consider the following case studies that we received in our collective advocacy efforts.

A. Person with Invisible Disability, Aged 36

In a virtual job interview, everything appeared promising as the interviewer expressed immediate interest and promised an offer letter. However, during the interview, she had no chance to disclose her long-term medication and therapy for depression.

After receiving the offer letter and proactively disclosing her condition, the employer rescinded the offer, citing inexperience with employees dealing with depression.

This incident sheds light on the challenges faced by individuals with disabilities and mental health conditions in Malaysia’s job market.

B. Deaf Person, Wheelchair User with Cerebral Palsy, Aged 37

He had been employed by a company for four years. Unfortunately, the building where he worked was not wheelchair user-friendly, and there was no accessible toilet (OKU toilet) on the same level as his workstation.

This meant he had to go downstairs whenever he needed to use the toilet. When he requested improved accessibility, his request was denied, and he was subsequently asked to leave the company.

To make matters worse, he was not paid his salary for the last month before termination. He couldn’t manage to go through with the process of filing a formal complaint due to the lack of accessible transportation and the inability to travel independently.

He was also discouraged from reporting to the authorities, as cases such as his were deemed of no priority and tended to remain unresolved.

The fear of being penalized for being disabled is real. It is well-grounded in the experiences of many persons with disabilities.

We urge the Government to initiate open and extensive consultations with stakeholders and the public to ensure that amendments to the Persons with Disabilities Act include comprehensive employment-related provisions.

These provisions must genuinely reflect the experiences and needs of persons with disabilities, and be harmonised with the Convention on the Rights of Persons with Disabilities that Malaysia ratified in 2010.

The Human Resources Minister could play a historic role by acquiring a holistic understanding of the systemic problems obstructing the employment of persons with disabilities and proposing the legal provisions for their removal.

Failure to enact meaningful legislative amendments would perpetuate the exclusion and discrimination faced by persons with disabilities, who are estimated to be 16 per cent of the Malaysian population.

Signatories:

Beatrice Leong, autistic adult; Founder of AIDA (Autism Inclusiveness Direct Action Group)

Ch’ng B’ao Zhong, autistic adult; licensed and registered counsellor

Raul Lee Bhaskaran, ADHD individual; lawyer, civil rights activist

Dato’ Dr Amar-Singh HSS, person with dyslexia; child-disability activist; advisor, National Early Childhood Intervention Council; advisor, National Family Support Group for Children and People with Special Needs; member, The OKU Rights Matter Project

Anthony Chong, PhD, Deaf person; Co-Founder and Secretary, Deaf Advocacy and Well-being National Council (Dawn), Malaysia

Moses Choo, Blind person; former member, Majlis Kebangsaan Orang Kurang Upaya (MBOKU) 2016-2021; independent consultant on information and communications technology for Blind persons and persons with Low Vision

Dr Lim Tien Hong, Blind person; disability rights activist

San Yuenwah, person with invisible disability, care partner, disability rights advocate; member, Harapan OKU Law Reform Group; member, The OKU Rights Matter Project

Dr Naziaty Yaacob, polio survivor and person with multiple disabilities; accessibility and mobility advisor-cum-trainer; former member, Majlis Kebangsaan Orang Kurang Upaya (MBOKU) 2008-2012; and former Associate Professor of architecture, University of Malaya

Meera Samanther, former President of Association of Women Lawyers (AWL) and Women’s Aid Organisation; Executive Committee member of AWL; member, Harapan OKU Law Reform Group; and parent advocate, disability and gender activist

Ng Lai-Thin, care partner and Project Lead, National Early Childhood Intervention Council; and member, The OKU Rights Matter Project

Association of Women Lawyers (AWL)

The OKU Rights Matter Project

Dr Zahilah Filzah Zulkifli, Consultant Paediatrician; President, Malaysian Advocate for Child Health; autism consultant with AT-Autism, SPELL lead trainer

Prof Dr Ramiza Ramza Ramli, Chairman, USM Early Intervention Center (UNEIC); and Chairman, USM Autism Society

Dr Mohd Iqbal Iyen, Paediatrician, Jesselton Medical Centre, Kota Kinabalu

Dr Intan Juliana Abd Hamid, Consultant Paediatrician (Immunology and Allergy), Institut Perubatan dan Pergigian Termaju, Universiti Sains Malaysia

Dr Fahisham Taib, Consultant Paediatrician, Senior Lecturer, School of Medical Sciences, Universiti Sains Malaysia

Dr Syed Abdul Khaliq Syed Abd Hamid, Consultant Paediatrician and Neonatologist, An-Nur Specialist Hospital, Bangi

Penang Independent Living Association for the Disabled (PILAD)

Datin Anit Kaur Randhawa, parent advocate; member, Harapan OKU Law Reform Group; member, The OKU Rights Matter Project

Dr Alvin Ng Lai Oon, Professor, Department of Psychology, Sunway University; mental health advocate

Mohd Zaqrul Razmal bin Mohd Podzi, Consultant Paediatrician, Mawar Medical Centre, 70400 Seremban, Negeri Sembilan

[okurightsmatter]

The Malaysian journey towards inclusivity and equality for persons with disabilities has seen progress in recent years. However, there still exist gaps to be bridged for the more meaningful participation and empowerment of persons with disabilities. Continuous, long-term advocacy for disability rights in Malaysia is key to creating a more inclusive society of equitable access to and use of opportunities and resources for all.

[okurightsmatter]

The Malaysian journey towards inclusivity and equality for persons with disabilities has seen progress in recent years. However, there still exist gaps to be bridged for the more meaningful participation and empowerment of persons with disabilities. Continuous, long-term advocacy for disability rights in Malaysia is key to creating a more inclusive society of equitable access to and use of opportunities and resources for all. 

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Ensuring equitable opportunities for persons with disabilities is a fundamental aspect of a just and inclusive society. One crucial mechanism for achieving this is through the provision of reasonable accommodation for persons with disability. Recognizing the significance of this issue, governments, organizations and advocacy groups worldwide have been striving to implement effective policies and practices to support individuals with disabilities.

[okurightsmatter]

The Malaysian journey towards inclusivity and equality for persons with disabilities has seen progress in recent years. However, there still exist gaps to be bridged for the more meaningful participation and empowerment of persons with disabilities. Continuous, long-term advocacy for disability rights in Malaysia is key to creating a more inclusive society of equitable access to and use of opportunities and resources for all. 

[okurightsmatter]

Bridging Gaps by Advocating for Disability Rights in Malaysia

The Malaysian journey towards inclusivity and equality for persons with disabilities has seen progress in recent years. However, there still exist gaps to be bridged for the more meaningful participation and empowerment of persons with disabilities. Continuous, long-term advocacy for disability rights in Malaysia is key to creating a more inclusive society of equitable access to and use of opportunities and resources for all.  Drawing lessons from struggles that have yielded success in the realization of disability rights, “long term” means sustained, continuous action over many years. Indeed, over decades.

According to the Department of Social Welfare (JKM), Ministry of Women, Family and Community Development, Government of Malaysia (as of 29 February 2024):

697,439 citizens are OKU, meaning they have completed the government formalities for OKU registration and are holders of JKM-issued OKU cards.

This number – 697,439 -- represents an underestimated and significant group of the population whose rights and needs remain to be addressed. Despite efforts to improve accessibility and support programmes, many persons with disabilities still face entrenched barriers to education, skills training and re-training, employment, healthcare social inclusion, as well as engagement in the digital and financial sectors, and decision-making at all levels.

Challenges that perpetuate inequitable access to opportunities and resources include the following:

Social stigmatization, discrimination and marginalization: ableist stereotypes and misconceptions about persons with disabilities   perpetuate exclusion and isolation, limiting access to services, support and opportunities for persons with disabilities and our family members.  With the rapid ageing of Malaysian society, ageism and sexism exacerbate the impact of ableism on persons with disabilities at the individual and collective levels.  The Government of Malaysia is a party to the proclamation of the Fourth Asian and Pacific Decade of Persons with Disabilities, 2023 – 2032.  The Fourth Decade presents an opportunity for persons with disabilities to actively seek opportunities and tap resources for collective self-empowerment and self-help.

2. Limited availability of information, knowledge and communication in formats and modalities that suit persons with disabilities:  Malaysia acceded on 31 March 2022 to the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled (Marrakech Treaty). The domestic implementation of the Marrakech Treaty would make a life-changing difference in enabling access to information, knowledge and communication on an equal basis among all persons, including persons with print disabilities of all ages, women and girls with disabilities, and older persons.  There is a need for wide compliance with the Web Content Accessibility Guidelines and provision of policy and other documentation intended for the general public to be made available in Plain Language and Malaysian Sign language formats.

3. Lack of accessibility: There is a need for access auditing, with timely remedial action, as well as access monitoring of all stages of the design, construction and renovation of infrastructure and related services.  Most schools, training institutions, workplaces, government offices and decision-making venues, and public spaces do not have accessible toilets that women and girls with diverse disabilities can safely use. This absence is one clear indicator of a deep and widespread negligence that prevents equitable access to   participation in all mainstream development programmes, community life and decision-making at all levels.  Persons with disabilities and allies could coordinate and work together as cross-disability teams to access audit designated priority areas and services.  Learning the technical terms and requirements for access auditing is a first step.

4. Inadequate support systems:  parents of children with disabilities have self-organized as groups and networks to try and meet their children’s needs.  Some civil society organizations of persons with disabilities, especially independent living associations and single disability organizations, provide peer support.  Care partners of older persons with dementia and/or other disabilities are not yet well-organized to press for more support, although the support need at the household and community is real and growing with the rapid ageing of society.  A major gap is the lack of technical know-how and good practices in many sectors on reasonable accommodation: What is reasonable accommodation?  What is advocacy for reasonable accommodation?  How is reasonable accommodation organized and managed as support that works for each person?  How does it work in diverse settings, for example: an inclusive early intervention centre, a local community park, a vocational training institution or via the provision of transition support for young adults with disabilities to secure and retain employment opportunities?  Why is there no community of practice on reasonable accommodation to encourage and support many more of such critical efforts?

Financial challenges: The cost of living has risen in Malaysia. Many feel that Government financial assistance does not suffice.  What are the options for persons with disabilities and families?  Is there justice in the taxation system?  How can more resources be allocated for empowering persons with disabilities to engage in means of livelihood that generate adequate remuneration on an equitable basis?

Advocating for disability rights in Malaysia is a collective responsibility that requires commitment, collaboration and continuous effort by all sectors of society.

With stronger disability rights advocacy, we can together help create a more inclusive and equitable society – with space and opportunity for everyone to thrive.

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Ensuring Opportunities are Equitable: The Importance of Reasonable Accommodation for Persons with Disabilities

Ensuring equitable opportunities for persons with disabilities is a fundamental aspect of a just and inclusive society. One crucial mechanism for achieving this is through the provision of reasonable accommodation for persons with disability. Recognizing the significance of this issue, governments, organizations and advocacy groups worldwide have been striving to implement effective policies and practices to support individuals with disabilities.

What is Reasonable Accommodation?

Reasonable accommodation refers to modifications or adjustments made in the workplace, education, housing or public services to enable individuals with disabilities to effectively perform their roles or access services on an equal basis with others. These accommodations are designed to eliminate barriers that may prevent persons with disabilities from fully participating in various aspects of life.

In Malaysia, statistics reveal that persons with disabilities face challenges in employment. Research from the International Labour Organization (ILO) indicates that individuals with disabilities are more likely to be unemployed, earn less than non-disabled individuals, and often work in positions with limited promotional prospects and poor working conditions. This highlights the pressing need for policies and practices that promote equitable opportunities and outcomes in employment for persons with disabilities.

Importance of Reasonable Accommodation

Promoting Inclusion: Reasonable accommodations facilitate the inclusion of persons with disabilities in all spheres of society, promoting diversity and enriching communities.

Equitable Opportunities: By providing adjustments that each person needs, persons with disabilities can learn and work on an equal footing with non-disabled peers, thereby ensuring fair participation in opportunities for life-long education and training, healthcare, employment, as well as participation in social activities and decision-making at all levels.

Economic Benefits: Facilitating the participation of persons with disabilities in the workforce and in the consumer market through reasonable accommodations not only enhances economic independence, but also contributes to overall productivity and economic growth.

Improved Well-being: Access to appropriate accommodations is a key part of dismantling barriers that disable. This enables the fulfilment of potential and enhances the well-being and quality of life of persons with disabilities.

Reasonable accommodations for persons with disabilities encompass a wide range of adjustments that can be made in various settings to ensure equitable access and opportunities. Some common examples include:

Acceptance of and Provision for Alternative Communication Formats: Enable the use of speech-generating devices (SGD) or assistive communication devices and/or written feedback instead of verbal communication; national/local sign language interpreting -- for individuals who communicate better through such means.

Accessible Parking: Modify parking policies and physical arrangements to accommodate employees with mobility issues who require parking spaces that are more conveniently located close to doorways, railings and ramps.

Service Dogs: Allow service dogs in the workplace by adjusting a "no animals" policy to support employees with disabilities.

Equipment Change: Provide or adjust equipment, software or other products to meet the specific needs of employees with disabilities.

Flexible Work Schedule: Allow for flexible work hours or remote work options to accommodate individuals with disabilities who may require adjustments in the work environment.

Reassignment to a Vacant Position: When necessary, reassign an employee with a disability to a vacant position that better suits her/his abilities and needs within the organization.

Modification of Job Tasks: Adjust job duties or restructure positions to align with the capabilities and requirements of employees with disabilities.

Changing Presentation of Tests and Training Materials: Adapt the format of tests and training materials to ensure accessibility for individuals with disabilities.

Reasonable accommodation transcends legal mandates; it embodies a societal commitment to inclusivity and fairness. By embracing this principle and implementing effective accommodation strategies, we pave the way for a more equitable and vibrant future where every individual, regardless of ability, can thrive.

[okurightsmatter]

The Malaysian journey towards inclusivity and equality for persons with disabilities has seen progress in recent years. However, there still exist gaps to be bridged for the more meaningful participation and empowerment of persons with disabilities. Continuous, long-term advocacy for disability rights in Malaysia is key to creating a more inclusive society of equitable access to and use of opportunities and resources for all.  Drawing lessons from struggles that have yielded success in the realization of disability rights, “long term” means sustained, continuous action over many years. Indeed, over decades.

[okurightsmatter]

Ensuring equitable opportunities for persons with disabilities is a fundamental aspect of a just and inclusive society. One crucial mechanism for achieving this is through the provision of reasonable accommodation for persons with disability. Recognizing the significance of this issue, governments, organizations and advocacy groups worldwide have been striving to implement effective policies and practices to support individuals with disabilities.