TOMORROW is International Day of Persons with Disabilities. The theme for this year’s celebration is “Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda”.
This year’s theme highlights the empowerment and inclusion of persons with impairment and/or chronic illness in all stages of planning and implementation in order to achieve all goals underlined in the Sustainable Development Goals (The goals are a global agenda for ending poverty, protecting the planet and ensuring that all people enjoy peace and prosperity; Malaysia has adopted them).
The message is simple and clear enough, but the question remains: Does the Malaysian government recognise the necessary steps needed to embody this aspiration, and is it willing to take them?
Before promoting the participation of persons with impairment and/or chronic illness in the decision-making process and national development agenda, the government and society must first recognise the capability and potential contribution of these persons.
It is odd that we often celebrate when persons with impairment and/or chronic illness win medals or get straight As in an exam but we do not really give them – especially young people who are talented and have potential – the opportunity to empower themselves let alone to be involved in decision- making processes and governance.
In many instances, the government and society are more interested in hearing from and relying on the views of non-disabled “experts” rather than directly asking disabled activists, disabled scholars, and disabled leaders in the field. Many disabled young persons who have the knowledge still find it very difficult to voice their concerns and ideas.
Recently, we observed a series of engagement and consultation programmes carried out by many government agencies. Some representatives from disabled people’s organisations were also invited.
This certainly is a good sign. However, the government must always be mindful so these engagement efforts will not be mere political gestures or desperate responses when groups hold demonstrations. The opportunity should be widened and representatives from disabled people’s organisations should be on the must-invite list.
The engagement and consultation should not only be limited to issues affecting persons with impairment and/or chronic illness directly; instead, the disabled community must also be involved in all nationally relevant plans.
There are two key issues we must really think about: the nature of participation and representation. When representatives from disabled people’s organisations attend a workshop or meeting, are they just there as input providers or are they also making the final decision?
Representation is equally important and demands critical reflection from all parties. As senior activist Mohammad Faizal Che Yusuf has said, there is a need to “put the right persons at the right place”.
Disabled people’s organisations also bear responsibility in enhancing their leadership and nurturing future leaders in their community. Ideally, all persons with impairment and/or chronic illness must understand and embody the meaning of an inclusive society through the lens of the human rights model of disability and not keep falling back on a charity mindset.
To this end, such organisations must carry out continuous education programmes for their members to cultivate critical consciousness about disablement.
Disabled leaders and activists must also develop and redevelop critical skills such as human rights awareness, political literacy, effective advocacy, legal litigation and so on. Moreover, they must re-analyse their position in local civil society movements.
The keyword here is capacity building. With all the international and regional instruments we have now, we must walk the talk and work together to achieve this.
There definitely will be a lot of hurdles when we are fighting for a good cause, but we can always find a way to overcome them. No more excuses.
May all persons and children with impairment and/or chronic illness in Malaysia have a better and meaningful future.
May this beloved country become truly inclusive for all. Happy International Day of Persons with Disabilities 2019.
MUHAMAD NADHIR ABDUL NASIR
Note: The writer is an independent researcher and consultant on issues affecting persons with impairment and/or chronic illness.