Nothing about Us without Us

 

From Amar-Singh HSS, Sharifah Tahir, Yuenwah San, Dr Daniel Leong, Lai-Thin Ng, Dr Anthony Chong, Mary Chen, Kaveinthran & Meera Samanther

Malaysia has a long-standing practice of making policy decisions and planning programmes for persons with disabilities (OKU) and care partners – without engaging us.

This practice has yielded poor results that failed to address the real OKU needs. The new unity government has a fresh chance to undo this harmful practice, by proactively and meaningfully engaging with the OKU community and care partners in policy decision-making and programme planning.

“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 wellbeing.

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.

In this view, a disabled person is perceived as being lacking in the desirable characteristics of a “normal person” and is thus of lesser value and lesser humanity than so-called “normal” persons. This devaluing of anyone with a disability is called “ableism”.

Ableist practices, beliefs and attitudes undermine and limit fulfilment of the full potential of persons with cognitive, sensory, physical or psychosocial disabilities.

It is ableist attitudes and beliefs, manifested as behavioural choices of non-acceptance, and of hostility, that have a disabling effect. More information on ableism can be found here.

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 the OKU are incapable of having our own aspirations and opinions.

We are forced to accept “Big Brother” deciding for us. Such institutionalised negative attitudes deny the valuable lived experiences of the OKU and care partners.

None of us would like our lives “controlled” by the decisions of others, especially without our voices being heard and given due consideration.

Token consultation for the sake of appearance will not suffice.

It is a wasteful use of resources and a loss not to engage with the OKU meaningfully in the planning, implementation, monitoring, evaluation, and corrective action concerning any policies and programmes that impact their concerns and daily lives.

Some examples of negative practices:

The medical profession, specialists in particular, are notorious in thinking that they know what is best for their “patients”.

Take, for example, the upcoming health ministry action plan for dementia 2023-2030. 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.

To be fair, 23 persons from various aging or dementia associations have been invited (but quite a number of these are doctors).

Not a single person living with dementia is on the list of invitees. 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?

The women, family and community development ministry that plans social services via the welfare department has a similar outlook.

Policy and programme planning for the OKU tend not to involve them and care partners in any serious manner. 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.

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 their lives.

In just three weeks, the women, family and community development ministry’s OKU action plan 2016-2022 will expire. And, yet, most persons with disabilities still have no idea as to what will replace it.

There is hearsay that some new strategic document for OKU wellbeing may start in 2023. Who was consulted on that new document is a mystery?

The education ministry has a document entitled “The Malaysia Education Blueprint 2015-2025 (Higher Education).”

This 40-page document is the product of engaging some 10,500 people over two years, with inputs from Malaysian and international education experts, and leaders of Malaysian higher learning institutions.

The document is built on the five aspirations of access, quality, equity, unity, and efficiency. Surprisingly, there is no mention whatsoever of “inclusion” or “disability”.

It is as though 15% of the Malaysian population, those with disabilities, are non-existent. It is obvious that no persons with disabilities were consulted and no thought was given to addressing their right to education.

On progress in realising the rights of persons with disabilities, our nation has fallen very far back in comparison with our neighbours. This is the result of entrenched complacency with adherence to paternalistic and charity-based models.

Inclusion of persons with disabilities in the fabric of our society will foster inclusion in bridging disparities on all other dimensions of Malaysian society – including gender, ethnicity, aging, urban-rural, and income.

We call for a change in the outlook and practice of government ministries and agencies, professional bodies, civil society organisations and disability organisations.

To keep pace with progress on other fronts, we must move from services led by non-disabled people, to disability-inclusive services led by or co-created with persons with diverse disabilities.

Children and adults with disabilities and care partners have insights based on lived experiences that can guide everyone to design and implement policies and programmes with improved outcomes.

Many more Malaysians need to embrace the principle of “Nothing about Us, without Us”, and have the courage to acknowledge that partnership with the OKU community and care partners is a strength, not a weakness, nor a threat to professionalism.

It is time to emulate good practices elsewhere, to have disabled persons in decision-making roles as board members, policymakers and managers.

We need to accept and support disabled persons with varied strengths, support needs and communication preferences in decision-making processes, not just those who speak well and/or have low support needs.

This will be a challenge to everyone who is today non-disabled.

The media has a vital role in preventing and calling out ableist attitudes and behaviour and in breaking negative stereotyping. Also, in sharing respectful, realistic and meaningful images and stories about persons with disabilities.

We call for Malaysian media practitioners to join in advocating for a disability-inclusive Malaysia where OKU rights matter.

Guidance for the media can be found here: Disability Representation in the Media.

Inclusion in society is built on acceptance. It is nurtured by the principle of equal and full participation, in which all voices are heard and respected.

The active involvement of persons with disabilities in the planning of strategies and policies that affect their lives and that of care partners will contribute to the development of a truly inclusive society, in which all voices are heard in shaping a stronger, more inclusive nation for all. - FMT

Dr Amar-Singh HSS is a consultant paediatrician and adviser to the National Early Childhood Intervention Council (NECIC) and National Family Support Group for Children and People with Special Needs, Malaysia.

Yuenwah San is the honorary senior adviser (Disability Inclusion), Social Development Division, United Nations Economic and Social Commission for Asia and the Pacific (ESCAP).

Sharifah Tahir is a care partner, dementia advocate, and Founder of UniquelyMeInitiatives.

Dr Daniel Leong is an autistic self-activist, autistic peer group facilitator.

Lai-Thin Ng is an educator in special and inclusive education, and project officer for the National Early Childhood Intervention Council (NECIC), Malaysia.

Dr Anthony Chong is a deaf person, deaf activist/researcher, and the founder of Malaysian Sign Language and Deaf Studies (MyBIM) & Malaysian Deaf Advocate and Well-Being Organisation (DAWN).

Mary Chen is a care partner and chairperson of Challenges Foundation.

Kaveinthran is an independent disabled human rights activist.

Meera Samanther is a disability-gender activist, parent advocate, and a committee member of the Association of Women Lawyers (AWL).

The views expressed are those of the writers and do not necessarily reflect those of MMKtT.