The face of disability in South East Asia is changing. Disabled women are becoming more visible in the disability movement and getting their voices heard. Kuhu Das, a disabled woman activist and Director of the Association of Women with Disabilities (AWWD) in India tells of her struggle and how a unique project is training disabled women to be new leaders.
I had polio in early childhood causing impairment in my mobility, so I am disabled. When I started working for the empowerment of women in general, I realised that empowerment programmes did not include disabled women. At every forum I would bring up issues around disability but I was the only person talking about it. Hardly any disabled women would come out and talk about themselves and their rights.
So I decided to work for the empowerment of disabled women. I started an organisation in 2002 called the Association for Women with Disabilities (AWWD). Through all this activity, I became a leader over time; not part of my plan, but it happened that way.
Disabled women in India face huge discrimination: as a woman experiencing gender discrimination and as a disabled person experiencing prejudices around ‘difference in abilities’. Disabled girls and women struggle to access rights to education, health, employment and others. They often have low self esteem, low levels of literacy and experience discrimination by their own families. Disabled girls and women living in rural areas are more deprived than those in urban areas as there are few support services, and gender-biased cultural practices are more common. This creates further barriers for disabled women to exercise their rights.
At AWWD we analysed the root of the marginalisation of disabled women. We saw that they are often invisible and unable to voice their discrimination. This is made worse by a lack of leadership among, and by, themselves. A situational analysis reflected the need for more disabled women leaders. So we started work to address this and gave birth to the project Creating spaces for Women with Disabilities to Communicate and Advocate for their rights. The project is really unique as we do not provide any kind of rehabilitation service or assistive appliances such as wheelchairs. We focus on supporting disabled women to be leaders and advocate for their rights. The disability rights movement is strong in India, but there is still gender discrimination within it. Policies, programmes and benefits have mostly brought changes into the lives of disabled men. It has not changed the lives of disabled women significantly. We need disabled women to be leaders to ensure their prominence in the movement for disabled people’s rights.
The project is regional. Core partners are Association of Women with Disabilities (AKASA) in Sri Lanka, Social Assistance and Rehabilitation for the Socially Vulnerable (SARPV) in Bangladesh and AWWD in India. We recognised the lack of evidence-based data and information about disabled women’s situations, attitudes of policy makers, and the shortcomings of disability projects run by governments and NGOs. Each partner carried out a base-line survey in their country. A study also gathered regional evidence in Nepal under the guidance of AWWD. Based on findings, we planned leadership training to create more disabled women leaders at regional, national and grass-root levels. Healthlink Worldwide in the UK provided technical support and guidance to design modules, develop materials and conduct leadership trainings to all the core partners.
The training prompts disabled women to think about leadership. Who is a leader? What kind of leader do you want to be? How can you be a good leader to influence other disabled women? How do power relationships, discrimination and marginalisation affect disabled women at all levels from the family to the wider community and nationally? How can you influence policy-makers and what is a good advocacy strategy? What is the existing international legislation for the protection of the rights of disabled people, and women specifically?
We conducted regional leadership training and 25 disabled women participated from South Asian countries. We then held national trainings in the three core countries – India, Bangladesh and Sri Lanka – for over 75 disabled women. We are conducting similar national level training in the other countries involved in the project, and training in Pakistan, Afghanistan, Nepal and Bhutan is already planned for this year.
After the training, disabled women were highly motivated to take action and become more visible. They became more confident and better organised. Now when they have advocacy meetings with government representatives they talk with greater boldness and strategic intention.In India, Sri Lanka and Bangladesh, the governments know there are disabled women trying to get their voices heard.
New leaders are already in action. Rupa in India has started her own initiative to organise disabled women in her district, transfer her leadership skills and advocate for their rights. Nishintha in Sri Lanka started organising disabled women and is preparing to conduct leadership training at district level. In each country disabled women have formed networks to build nationwide movement and advocacy. Across the region disabled women are communicating, sharing and disseminating information about their new initiatives to the global community. A network website – Network of South Asian Women With Disabilities (NSAWWD) has been set up, which is a good resource on disabled women’s issues. To continue the work, we want to provide seed grants to support these new leaders create a stronger movement, but currently the project’s support is limited and we need extra resources to do that.
In South East Asia, largely because of this initiative, disabled women are starting to understand that their rights cannot be claimed by anyone else. They are coming forward, speaking for themselves and showing strong leadership to other disabled women. I hope that every region can have a movement of disabled women and that we can link up in the future.
Kuhu Das is the founder and Director of the Association for Women with Disabilities, India firstname.lastname@example.org
David Curtis is Head of Programme and Capacity Development at Healthlink Worldwide Curtis.email@example.com
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How do you think creating good leadership can lead to better health? Have you had an experience where this has happened?