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