Disability Data

Disability Data - Be Counted to Count


Why Data Matters

Disability data is more than just numbers. Behind the numbers are the life stories of persons with disabilities: the everyday challenges we face; barriers to participating, in roles and activities that are expected of non-disabled people, within our community; prejudice and discrimination faced in many aspects of life, including education, healthcare, employment, etc. Each story contributes to our understanding of the disability experience and the changes necessary to eliminate all barriers in our society, whether physical or social environment.

Each person with disability(ies) count. And we, whether disabled or not, must collectively and collaboratively change the way we do things to improve the quality of life, eliminate discrimination, and uphold the rights and dignity of persons with disabilities.


Statistics: Be Counted to Count

At the same time, disability-inclusive data that reflects the experiences and needs of persons with disabilities are important to help disability activists and disability organisations to advocate for systemic changes necessary to improve the quality of life of persons with disabilities.

Disability-inclusive data will help communities and decision-makers such as government agencies, local authorities, non-governmental agencies, corporate bodies to:

  • Understand and meet the diverse needs of persons with disabilities and respect the multiple ways we need to be supported to participate meaningfully in our society.
  • Fulfil accessibility requirements and incorporate Universal Design principles in the built-environment, public transportation, dissemination of information, infrastructure, and services that they offer.
  • Provide meaningful and equitable assistance and accommodations (adjustments) to persons with disabilities.
  • Provide disability-inclusive healthcare to children and families with disabilities that focuses on improving their quality of life.
  • Ensure children and persons with disabilities have equal access to education opportunities and resources, as well as meaningfully and inclusively participate in schools and education programmes.
  • Eliminate discriminatory employment practices and provide supports and accommodations to enable persons with disabilities to work effectively and successfully.
  • Provide equitable access to persons with disabilities in all aspects of living, including housing, banking and finance, legal and justice, community participation, political participation, etc.
Infographic of persons with functional difficulties from the NHMS 2019 survey

Malaysia Disability Data

Registration of persons with disabilities in Malaysia is not mandatory. According to Jabatan Kebajikan Masyarakat (Department of Social Welfare, JKM) which manages the Persons with Disabilities (OKU) registry (updated as of 31 May 2021), there are a total of 579150 persons with disabilities, which is about 1.8% of Malaysian population. Unfortunately, the data released by JKM is not disaggregated by age.

The National Health and Morbidity Survey (NHMS) 2019 report provides a more accurate estimation of persons with disabilities in Malaysia. The NHMS 2019 report states that:

  • 11.1% Malaysians above 18 years old have disabilities.
  • 1 in 4 Malaysian adults experience functional difficulties in one or more of the following domains: seeing, hearing, remembering, walking, self-care and communicating.
  • 4.7% children aged 2-17 years old have functional difficulty in at least one domain, including hearing, vision, communication/comprehension, learning, mobility and emotions.

Meanwhile, workforce participation among working-age Malaysians with disabilities is low, with approximately 4,500 workers in public and private sectors as of 2018, which is barely 1% of the number of registered persons with disabilities in the country.

Disability Data from Around the World

Disability Prevalence

  • World Health Organisation (WHO) reported that 15% of the world’s population live with some form of disabilities, with 2-4% experiencing significant difficulties in functioning.
  • The Global Burden of Disease Study 2017 data revealed that at least 291.2 million (11.2%) of the 2.6 billion children and adolescents worldwide under 20 years old were estimated to have 1 of the 4 specified disabilities, namely intellectual disability, epilepsy, hearing loss, and vision loss. The study acknowledged that the data analysed did not include the full range of childhood disabilities or childhood functional difficulty.
  • 1 in 4 (26%) adults in the United States live with a disability.


Disability and Poverty

  • The gap of poverty rate in the United States was 16% in 2018 between people with disabilities (26%) and people without disabilities (10%) of working age.
  • Almost half of the poverty in the United Kingdom is directly associated with disability, with 28% of individuals living in poverty being disabled people, and another 20% of those in poverty were living in the same household with disabled people. The same report also indicated that 31% of people in a family that includes a disabled person are in poverty compared with 18% of people in a household with no disabled people.
  • 1 in 6 Australians with disability were living in poverty, compared with just over 1 in 10 Australians without disability. 38% of the adult Australians who are living in poverty are people with disabilities.


Disability and Employment


Disability and Access to Health Care

  • A report on access to health services by Australians with disability revealed that 2 in 5 people with disability aged under 65 had difficulty accessing medical facilities (general practitioner, dentist, hospital). The same report also revealed that 1 in 6 people with disability under 65 years old experienced discrimination by health staff (general practitioner, nurse, hospital staff).
  • A study regarding access to healthcare by people with disabilities in the United Kingdom revealed that people with a severe disability and mild disability are 5.4 times and 3.6 times, respectively, more likely to have an unmet need due to the cost of prescribed medicine than people without a disability. The study also revealed that women with a disability were 7.2 times more likely to have an unmet mental healthcare need due to cost if compared with men without a disability.


Harmonizing Disability Data To Improve Disability Research And Policy by Daniel Mont, Jennifer Madans, Julie D. Weeks, and Heidi Ullmann.