Tag Archives people with disabilities

Institutional care is an affront to rights of children with disabilities

In solidarity to the 16 days activism against gender-based violence, this article highlights the structural violence that impedes the rights of children with disabilities —including girls— in Kenya. The author Stephen Ucembe, who is an alumni of the International Institute of Social Studies, The Hague, emphasizes the need to protect the rights of children confined to institutional care.

Image Credit: Hope and Homes for Children

Every child, including those with disabilities, is entitled to the rights enshrined in the Convention of the Rights of the Child which Kenya has ratified. As a country, we have agreed to uphold these rights through the Children’s Act 2022.

However, in contravention of their rights, children with disabilities are often hidden away in communities or sometimes separated and isolated in institutions against their wishes. Isolation from communities on the basis of disability is discriminatory. It is a dereliction of duty – an abdication of responsibility by the government. Supporting these children to be visible in our communities and families normalizes disability. Hiding them from others dehumanizes and perpetuates stigma and discrimination, hence exacerbating the problem.

Furthermore, unnecessary placement in residential care institutions often multiplies violations; children with disabilities are denied other rights, like the right to family and community care, to culture, to identity, to freedom of association.

A global Human Rights Watch report, published in 2017 titled, ‘Children with disabilities: Deprivation of liberty in the name of care and treatment’ documented that children with disabilities often face severe neglect and abuse. This included beatings and psychological violence, sexual violence, involuntary and inappropriate medical treatment, use of abusive physical restraints, seclusion and sedation, denial of education and denial of regular contacts with families.

An investigative media exposé traced how the problems described above play out locally. It uncovered multiple human rights violations perpetuated against institutionalized children with disabilities, by a government agency.

Nobody is seeking to romanticize families and communities. There are many children facing abuse, neglect and exploitation, including stigma and discrimination within family and community settings. However, studies consistently point to serious violations in institutional care settings. Moreover, over 80 years of research shows that supported families and communities are far better equipped than institutions when it comes to improvement of children’s overall well-being.

The primary role of government should not be to create more barriers, or spaces that deepen inequality and diminish inclusivity. Yet, this is exactly what we do when we institutionalize these children or neglect them in communities. The role of the government should be to ensure their protection and enjoyment of all rights, through full inclusion and participation in the community.

To make inclusion a reality, we need responsive initiatives that tackle ubiquitous stigma and discrimination. That starts with community services and facilities available to persons with disabilities, enabling them to access education, housing, rehabilitation and therapy.  It extends to respite care centers that allow struggling care-givers time off, or time to go and work. And it means we must improve infrastructure and provide necessary assistive devices, aids and services, like hearing aids, crutches, wheelchairs, tricycles, white canes and walking appliances to support full participation.

Lastly, it’s up to us to ensure we do not leave these children behind in the care reform processes that the government has initiated. To support governments to include disabled children in family based alternative care, the Committee on the Rights of Persons with Disabilities developed ‘Guidelines on deinstitutionalization, including in emergencies’.

These guidelines are meant to ensure an end to rampant violence against institutionalized persons with disabilities, including children. This advice should ensure children with disabilities are included and supported in families and communities, and prevent their institutionalization.

This article was first published on The Standard.

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Opinions expressed in Bliss posts reflect solely the views of the author of the post in question.

About the author:

Stephen Ucembe is the Regional Advocacy Manager, Hope and Homes for Children. He is a professional social worker with skills, knowledge, and experience working with children and young people without parental care, and vulnerable families. His preference is to work in Kenya, or regionally (east and southern Africa) with organization (s) whose mission and vision is family and child focused.

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“Nothing about us, without us!”: Disability inclusion in community-based climate resilient programs. A case study of Indonesia

In design of climate-resilient programs for community development, there is growing awareness of the benefits of gender assessments, but it is far less common that disability is considered. The meaningful inclusion of people with disabilities can reveal their knowledge and capacities to contribute, and result in more contextualised and socially-just responses to climate change.

Caption: Plan Indonesia and PERSANI staff in hybrid workshop to provide recommendations for the Guidance on assessments for climate-resilient inclusive WASH. Photo credit: Silvia Landa, Plan Indonesia (2020)

Climate change poses huge challenges for the wellbeing of individuals and communities, especially those reliant on their local environments for subsistence. As the latest Intergovernmental Panel on Climate Change 2021 report demonstrates, we are experiencing changes to our climate at an unprecedented scale and intensity. There is growing awareness that the impacts of climate change are not merely biophysical, but embedded in social processes. To varying degrees of success, non-governmental organisations and local governments are mainstreaming climate resilience in their community development programs. In designing programs, it is important to involve diverse community members in assessing climate change impacts and finding solutions, including those who are often marginalised.

The catch-cry of disability rights organisations of “nothing about us, without us” draws attention that all people have the right to self-determination and to have a say in development outcomes and policy that affects them. This blog provides three arguments for inclusion of people with disabilities in community-based climate-resilient programs, with a case example from Indonesia.

Improving community sanitation in Manggarai district, Indonesia

Together with Yayasan Plan International Indonesia (Plan Indonesia), Institute for Sustainable Futures – University of Technology Sydney (ISF-UTS) conducted a research-practice project to collaboratively inform how Plan Indonesia addresses the impacts of climate change on their inclusive sanitation program. In 2019, ISF-UTS and Plan Indonesia co-designed and trialled seven participatory methods/activities to assess how climate change affects water, sanitation and hygiene (WASH) services, and gender and social inclusion outcomes.

All activities considered inclusion of marginalised groups and people with disabilities, but the assessment of climate impacts on sanitation accessibility was most specific in addressing disability inclusion. Adapted from the WaterAid “How to conduct a WASH accessibility and safety audit” guide, this activity identifies: barriers that currently affect sanitation accessibility; how climate extremes can potentially worsen and create new barriers; and how the community and local government can help people overcome barriers.

The activity was piloted in Manggarai district in the central part of Flores Island, Indonesia. In recent times there has been increasing intensity of rainfall, causing landslides, floods, and soil erosion. Increasing seasonal variability, longer dry spells, and more extreme weather events were also noticed by villagers, and have been in line with climate change projections for the region. The case shared below shows three benefits of inclusion of people with disabilities in climate change assessment for inclusive WASH programming.

First, people with disabilities are likely to experience climate change impacts most severely. Their vulnerability to climate change is linked to multiple disadvantages they experience. For example, people with disabilities globally are disproportionately represented among the poor, have higher levels of unmet health needs, and are twice as likely to be unemployed. Due to these differentiated impacts, their voices are critical for identifying the issues so they can be addressed. For example, in Manggarai, we met with a young woman, with a physical disability, who told us about accessibility issues with the lack of ramp and handrails at the public toilet. To access the toilet, people needed to step across a drain, which fills and overflows during heavy rain.

Second, people with disabilities are routinely excluded from education, jobs, leadership roles, and often denied the opportunity to contribute to public forums. Through including people living with disabilities in community decision-making on climate-resilient programs, they have an experience of being treated with dignity and respect. Through meaningful participation, there may be growing awareness of the actual capacities and contributions of people with disabilities to their community. This helps to shift their position and perception from being an aid beneficiary, to an agent driving their own development, with perspectives worthy of inclusion.

As a result of the inclusive design of the participatory activities, people with disabilities in Manggarai joined the assessments, and other participants created space for them to voice their concerns. In one village forum, an elderly man with disabilities was vocal in requesting assistance from government. A Plan Indonesia team member reported, “we talked about how people with disabilities can have a voice and be heard, using Pertuni (disability people’s organisation) as an example. We want to try changing thinking about people with disabilities as charity recipients, so they can also be empowered and involved in the community”.

Third, drawing on information gathered from a diverse range of community members of different ages, genders, ability levels, and occupations can inform new pathways forward for surviving well in the face of climate change, and possibly positive transformation. This approach pays attention to contextualised and place-based knowledge on the changing environment. Inclusive programs are more likely to be effective, sustainable, and align better with the values of communities.

The community assessment revealed the difficulty of accessing sanitation facilities in challenging weather conditions, such as heavy rain and drought. Learning about experiences of people with disabilities and their carers could then be used to help identify solutions that could be implemented by the community or the government. For example, in all villages, community members suggested using collective funds and labour to build toilets, and provide support to facilitate equal access to water and sanitation for people with disabilities.

Benefits of disability inclusion

Through this case study of a WASH program in Indonesia, we can see the benefits of people with disabilities participating in climate-resilient development programming. Representation of people with disabilities can contribute to a breakdown in negative stereotypes and misconceptions of their capacities. The meaningful inclusion of diverse perspectives ensures a nuanced and contextualised program that benefits all community members with an inclusive outcome.

Although the empowerment and leadership of people living with disabilities is critical in responding to climate change, external assistance is also needed. With the perspectives and needs of people with disabilities in mind, development actors can work alongside disabled people’s organisations, and provide more targeted support for climate change resilience and adaptation.

Opinions expressed in Bliss posts reflect solely the views of the author of the post in question.

About the authors:

Tamara Megaw is an ISS alumnus who graduated in 2015 from the MA program in Social Policy for Development. After graduating, she worked in global education at Nuffic NESO Indonesia and then consulted for Transnational Institute. Since late 2017, she has worked at the Institute for Sustainable Futures, University for Technology Sydney (ISF-UTS) on research related to development effectiveness, gender equality and social inclusion.

Anna Gero is a Research Principal at ISF-UTS. Anna is a climate change and disaster resilience leader and specialist with over 13 years’ experience in the Asia-Pacific region.

Dr Jeremy Kohlitz is a Water, Sanitation and Hygiene (WASH) researcher at ISF-UTS with interests in climate change impacts on equitable WASH service delivery in the Asia-Pacific region.

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