A rights-based approach to address development's ignored disability

CANBERRA — Discrimination against people with mental and psychosocial disability is commonplace — from the community level to the highest reaches of government, according to Aleisha Carroll, disability inclusion adviser with international Christian development organization CBM Australia.

When it comes to disability-inclusive development, the attention given to mental and psychosocial disability has been limited, she said. Donors often consider this aspect of inclusivity too challenging, with mental health seen as a Western idea, while local disabled people’s organizations struggle to find support, experts in disability inclusion tell Devex.

Carroll is aware of examples where policymakers have written national mental health strategies without consulting people with psychosocial disability, she told Devex. She has also seen stakeholders “snickering and making patronizing expressions when a person with psychosocial disability communicates in a nontraditional way in a meeting” as well as “even more overt prejudice such as a local government representative using derogatory language to describe people with psychosocial disability.”

Existing barriers for people living with mental and psychosocial disability in low- and middle-income countries include lack of access to services or the right to make decisions for themselves. And in many contexts, it is hard for them to legally form representative organizations, according to Diana Samarasan, founding executive director of the Disability Rights Fund, a grantmaking collaborative.

“Many national constitutions and laws restrict rights for people with ‘unsound mind,’” she said. “In addition, there is greater stigma against persons with psychosocial disabilities than against other disability groups,” Samarasan said.

Without legal capacity, people living with mental and psychosocial disability cannot marry, sign housing or employment contracts, hold bank accounts, get loans, be parents, make critical health decisions for themselves, hold property, and more.

“Try living life like that,” Samarasan said. “The assumption of society is that a person with psychosocial disability does not ever have decision-making capacity.”

Australia’s Department of Foreign Affairs and Trade is one donor working to support better understanding of the challenges in the Indo-Pacific region by calling on the expertise of disabled people's organizations, a strategy that experts tell Devex they want to see built upon by donors and NGOs around the world.

Forging positive relationships with the disability movement

Because of the complexity, there is a tendency to simplify disability inclusion by referring to people with disabilities as a homogenous group, Carroll explained.

“Secondly, confusion about correct terminology and not wanting to offend or say the wrong thing can deter people from raising issues. Likewise, there are broader debates which may be considered controversial to a Western development agency, such as recognizing the ongoing impact of colonial practices in mental health and the rise of the anti-psychiatry movement, but which need to be understood and taken into account when seeking to forge positive relationships with the disability movement,” Carroll continued.

In order to better address needs in the Indo-Pacific, DFAT is building partnerships with organizations with expertise in mental and psychosocial disability within development. CBM Australia, one of DFAT’s partners, provides advice and support for disability inclusion within the Australian aid program, as well as capacity building activities to educate DFAT staff based in Canberra or internationally.

Through CBM’s close work with DPOs within the Indo-Pacific, it can also act as conduit to DFAT’s programs. CBM has brokered links between DFAT and TCI Asia Pacific, an alliance of persons with psychosocial disabilities and disability supporters from 21 countries in Asia and Pacific regions. This has included engaging TCI in multistakeholder training through the DFAT funded Partnership For Human Development in Timor-Leste.

The connections don’t have to be big to make an effective impact.

“A recent visit to Jakarta enabled DPO representatives of people with psychosocial disability to make linkages with DFAT staff that they later utilised to obtain funding for an expert witness to attend a constitutional court hearing,” Carroll explained to Devex. “This hearing was aimed at enabling people with psychosocial disability to be able to stand for political positions and vote on an equal basis with others with and without disability.”

DFAT’s work also supports the Disability Rights Fund and its sister organization, the Disability Rights Advocacy Fund, with two key DPOs for persons with psychosocial disabilities funded —  the Indonesian Mental Health Association and Users, and Psychiatric Survivors Association of Fiji.

Through funding, DFAT is encouraging wider discussion. The Nossal Institute for Global Health Disability Inclusion Department holds a master’s program on disability-inclusive development, which includes a CBM-presented session on the inclusion of people with psychosocial disability. It has also been contributing to research into how psychosocial disability is represented in Committee on the Rights of Persons with Disabilities state party reports.

A rights-based model

Empowering DPOs with expertise on psychosocial disability is important in ensuring the right people are involved in political discussion and programming.

The DPOs for persons with psychosocial disabilities that have been supported by the Disability Rights Fund, for example, has successfully used peer support as a way to reduce the effect of external stigma on internalized stigma — which Samarasan says is a necessary first step in order to build community, understand rights, and work toward joint advocacy to reduce stigma and rights abuses.

In Timor-Leste, DFAT is funding DPOs to support people with psychosocial disability. There, research has shown that people living with mental and psychosocial disability face bullying, physical and sexual violence, and confinement. And psychosocial disability is still viewed through a medical or charity model lens, where the common political response is to build facilities such as new hospitals or beds in hospitals rather than fund community-based interventions.

Carroll explained there needs to be a shift in the discussion to overcome misconceptions that mental and psychosocial disability will be supported through the health system.

“Confusion about the terminology associated with psychosocial disability and misperceptions of disability play a large part in deterring focus,” Carroll said. “Often the needs of people with psychosocial disability are seen as a mental health service issue — and therefore efforts stop short at providing limited treatment services within the health sector, whilst the human rights factors around disability, including the impact of policy, institutional, communication and attitudinal barriers are not understood or addressed.”

The work of TCI Asia Pacific asks development actors to focus on article 19 of the CPRD — the right to live independently. And TCI is working toward removing those policy, legal, communication and attitudinal barriers that prevent people with psychosocial disability exercising their right to live in the community, have a family and have equal access to services.

DFAT and the U.K. Department for International Development are the donors Samarasan named as working on increasing support for mental health in the development landscape. But overall, she said, there is limited funding.

Aside from helping to close funding gaps, Samarasan is calling for the involvement of the wider development community to change the discussion when it comes to mental and psychosocial disability: “The best thing the global development community could do would be to recognize that persons with psychosocial disabilities — not just those with post-traumatic stress disorder post-conflict — have rights and need support that is rights-based, not medical, model,” she said.

For more coverage on creating a disability-inclusive world, visit the Development Enabled series here.