6/17/2023 0 Comments Nothing about us without us![]() Who was consulted on that new document is a mystery. There is hearsay that some new strategic document for OKU wellbeing may start in 2023. And, yet, most persons with disabilities still have no idea as to what will replace them. In just three weeks, the KPWKM Pelan Tindakan OKU 2016-2022 will expire. We persons with disabilities and care partners do not have a seat at the table and are not in leadership roles in policy and programme decision-making that directly impacts our lives. Opinions may be obtained from some persons with disabilities, but are often neither comprehensive nor extensive: they tend not to involve all disability groups across all regions in the country. Policy and programme planning for persons with disabilities tends not to involve persons with disabilities and care partners in any serious manner. The Women, Family and Community Development Ministry (KPWKM) which plans social services via the Welfare Department has a similar outlook. How can an effective and meaningful national plan be devised for meeting the real needs of persons with dementia and their care partners, if they are not represented adequately and time is not scheduled for listening to their valuable lived experiences? Not a single person living with dementia is on the list of invitees. To be fair, 23 persons from various ageing or dementia associations are invited (but quite a number of these are doctors). Of the 73 persons invited to a planning meeting in December to harmonise an advanced draft, only one by designation is a care partner of a person with dementia. Take, for example, the upcoming Health Ministry Action Plan for Dementia 2023-2030. In the medical profession, specialists, in particular, are notorious for thinking that they know what is best for their “patients.” It is a wasteful use of resources and a loss not to engage us meaningfully in the planning, implementation, monitoring, evaluation and corrective action concerning any policies and programmes that impact on our concerns and daily lives. Token consultation for the sake of appearance will not suffice. None of us would like our lives “controlled” by the decisions of others, especially without our voices being heard and given due consideration. Such institutionalised negative attitudes deny the valuable lived experiences of us persons with disabilities and care partners. We are forced to accept “Big Brother” deciding for us. ![]() Importantly, the exclusion of persons with disabilities from meaningful participation in policy and programme decision-making exposes the internalised belief system of non-disabled persons, that we persons with disabilities are incapable of having our own aspirations and opinions. More information on ableism can be found here. It is ableist attitudes and beliefs, manifested as behaviour choices of non-acceptance, and hostility, that have a disabling effect. This devaluing of anyone with a disability is ableism.Ībleist practices, beliefs and attitudes undermine and limit the fulfilment of the full potential of persons with cognitive, sensory, physical or psychosocial disabilities. In this view, a disabled person is perceived as lacking in the desirable characteristics of a “normal person” and is thus of lesser value and lesser humanity than so-called “normal” persons. Programmes and services developed by non-disabled persons for persons with disabilities are based on the view that disability is a problem that must be corrected to make “the disabled” as close to “normal” as possible. “Nothing About Us Without Us” emerged globally in the 1990s, championed by persons with disabilities and allies to underscore the critical importance of our meaningful participation in all decision-making that affects our well-being. The new unity government has a fresh chance to undo this harmful practice, by proactively and meaningfully engaging persons with disabilities and care partners in policy decision-making and programme planning. This practice has yielded poor results that failed to address real OKU needs. LETTER | Malaysia has a long-standing practice of making policy decisions and planning programmes for us persons with disabilities and care partners - without engaging us.
0 Comments
Leave a Reply. |