Reducing the invisibility of people with disabilities – lessons from Tajikistan
There are currently approximately 150,000 registered people with disabilities in Tajikistan, including more than 28,000 children. Many face profound isolation, marginalisation and violence.
Yet, there is a huge lack of reliable data and evidence on the experiences of people with disabilities and those – mostly women – parenting children with disabilities.
Earlier this year we published research to help fill some of this information gap. Building on our earlier analysis, we looked at how the issues faced by people with disabilities intersect with violence and exclusion, and discussed what opportunities there might be to raise the visibility of some of the most vulnerable members of Tajik society.
Today, on the International Day of People with Disabilities (3 December), we wanted to re-share some of these findings and the lessons identified in supporting those with disabilities in Tajikistan.
Problems faced by people with disabilities
Compared to people without disabilities, people with disabilities in Tajikistan have poorer health outcomes, lower educational attainment and economic participation, face higher levels of poverty, and are less visible in public life.
A lack of accessible means of transport, buildings and roads restricts their freedom of movement and impedes their access to the buildings where they might seek support. This in turn negatively affects their participation in education and the labour market and their ability to access healthcare, social security and other basic services.
Many people with disabilities struggle to take an active role in their families or society, or are prevented from doing so, and public awareness of disabilities is hugely lacking. Disability is often associated with poverty, illness and lack of education. Being born with or giving birth to a child with a disability is even seen as punishment for one’s sins. This all leads to fear, misunderstanding and different forms of violence – physical, emotional, sexual, financial and structural.
This kind of social stigma, as well physical and other barriers, prevent those with disabilities from fully participating in society and realising their potential. This is compounded by the overwhelming focus on a person’s disability rather than their ability, which further contributes to their isolation from society and social support.
Sexual and gender-based violence against people with disabilities is common in Tajikistan, particularly against women with disabilities and women parenting children with disabilities.
Tajikistan is a patriarchal and hierarchical society, where traditions and customs dictate that women are first and foremost mothers and wives, that they should be subordinate to men and their families, and that their primary role is to run the household.
Women with disabilities are not seen as being able to fulfil the roles expected of women or to live up to dominant ideals of femininity, which isolates them and puts them at risk of violence. Their rights and mobility are extremely restricted, and they have little or no participation in public life because of the shame and stigma they face due to their disability and the perceived risks to family honour.
Fear that women with disabilities are vulnerable to sexual violence only intensifies the control they face over their movements and the insistence that they be escorted everywhere – and thus considered even more of a burden on the family. Their marriage prospects are also poor and families are quick to arrange their marriage to older men or men seeking multiple wives, without the women’s consent.
Faced with sexual and gender-based violence, women with disabilities or women parenting children with disabilities rarely seek help, for fear of abandonment. Abuse is endured or covered up to keep families together. Women with disabilities are frequently threatened with divorce because they are ‘unhealthy’ and women parenting children with disabilities are often blamed for the child’s disability and beaten or insulted. Yet, they are also not typically welcomed back at their parents’ homes after marriage. This leaves them dependent upon their husbands and families, and victim to different forms of violence.
Our research suggests that many women in Tajikistan actually develop a disability during their marriage, suggesting that prolonged physical and emotional violence committed by husbands and their families is resulting in further disabilities among women.
Many people with disabilities suffer from depression and other mental health issues and have very low feelings of self-worth. Seeing the violence they face as being the result of their disability often leads them to expect it. In many cases, social stigma is so deeply ingrained in their subconscious that, in addition to physical and other barriers, a sense of deep shame prevents them from seeking help.
Mothers of disabled children experience anxiety, depression and hopelessness when faced with the daily challenges and discrimination of providing their children with adequate education and care. They are rarely afforded opportunities to do anything apart from be full-time carers.
Preventing violence against people with disabilities
Since 2015, International Alert has been implementing the Living with Dignity programme in Tajikistan. The project focuses on the family level to transform behaviours that drive or maintain physical, emotional, financial and sexual violence, particularly against women and girls.
The programme uses a combined gender-sensitisation and economic-empowerment methodology. This has been shown to successfully change harmful attitudes towards women and girls and promote more positive relationships within families, reducing violence and increasing economic food and economic security, as well as promoting non-violent communication within wider communities.
The first phase of the programme and subsequent research revealed the isolation and marginalisation experienced by women with disabilities and women parenting children with disabilities, and the need to engage directly with people with disabilities, as they are frequently only on the periphery of development and peacebuilding programming.
In 2019, Alert therefore began specifically working with people with disabilities and their families in the south of the country. This has included seeking to reduce the levels of violence they experience and disability-related stigma. “Three years ago, I was an aggressor in my family – I fought with my wife all the time,” said one husband involved in the project. “Since I joined Living with Dignity, I have changed. I realise that my wife has the same rights as I do. I will now try to be a better, more understanding husband.”
We have also sought to increase people with disabilities’ inclusion in family decision-making and provide socialisation and economic opportunities. “My wife and I are disabled and were living in terrible conditions,” says one participant. “No one helped us before, but … we [now] have our own business and can make a profit.” Another man with disabilities described how previously he “could not work anywhere because there were no opportunities”. Through the project he was able to get some tools for a workshop. “I now have a permanent job as an electrician and shoemaker.”
The project has also been building a stronger evidence base for local and national policy-making on disability, so others can benefit from the experiences.
What needs to change?
In Tajikistan, people with disabilities continue to exist on the fringes of society and face distinct challenges. Greater attention must be paid to those living with or parenting those with disabilities, both in terms of state responses and in projects led by international and national civil society organisations.
The Tajikistan government should fulfil its commitments to the Convention on the Rights of People with Disabilities more closely and optimise mechanisms to more clearly and effectively provide support to people with disabilities. This includes on coordination, monitoring, access to benefits, healthcare and education, and having a clear complaints process for when systems are not performing as intended. This optimisation must involve people with disabilities themselves.
The state and private sector should ensure more people with disabilities are hired in state and private institutions. This would increase their visibility in society and help to change attitudes towards disability. Indeed, people with disabilities and women parenting children with disabilities deeply wish to be involved in social life and different networks.
The government should enforce minimum standards on school accessibility for children with disabilities and develop inclusive curricula. Increased participation of children with disabilities in educational institutions will help to increase their visibility and challenge stereotypes and stigma at an earlier age. It will also begin to change social norms that perpetuate only negative associations with disability.
There should be increased financial support given to networks that are supporting people with disabilities and increasing their visibility at the national level. While such local networks already exist, there is little nationwide coordination on the issue driven from the grassroots. More funding and technical support is needed to increase awareness and make advocacy for people with disabilities and women parenting children with disabilities more effective and ensure that their voices and experiences can be heard.
International and national organisations must recognise the increased levels of vulnerability faced by people with disabilities – particularly women – and women parenting children with disabilities. They should ensure greater inclusion of people affected in development and peacebuilding programming, and consider the extent to which the unique needs of these groups are integrated into projects.
Finally, there needs to be further efforts to collect data on the intersection of violence and disability. This will help build the evidence on which to base quality policy and programming and make it more effective.
You can read more about our research here.