Every body matters

UNFPA Representative Ritsu Nacken delivering the welcome remarks

“People with disabilities are very much part of the development agenda,” UNFPA Representative in Sri Lanka Ritsu Nacken said at the 9th International Conference on Birth Defects and Disabilities in the Developing World. Delivering the welcome remarks of the panel discussion hosted by the United Nations Population Fund (UNFPA) yesterday at Cinnamon Grand, Ms. Nacken stressed on the need for a comprehensive sexuality education and care for persons with disabilities due to their increased vulnerability. 

“We are all aware that people with disabilities often face difficulties and challenges in exercising their sexual and reproductive rights,” she added, setting the tone for the morning’s discussion. 

• People with disabilities cannot be generalised as one group
• Just like everyone else, people with disabilities should be able to enjoy a sexual life as well as have children
• Access to information about reproductive health a challenge

Bringing together experts from the fields of medicine and sociology, the event shed light on less mooted aspects of human rights and gender equality in the discussion of disabilities and birth defects. In her address, Ms. Nacken underscored that one billion people or 15 per cent of the world’s population experience some form of disability in their lifetime. “In order to achieve Sustainable Development Goals (SDGs), we need to ensure that persons with disabilities have equal access to services, including sexual and reproductive health services, and are able to exercise their rights fully,” she said. 

Do they have access to these services to family planning clinics? Do we recognise people with disabilities as a group of people who should not be kept away from these services
- Athula Kaluarachchi

The UNFPA representative shared a story closer to her home in Japan. “In April last year, our (Japan’s) government passed a bill to compensate victims of a decade-long government programme under which thousands of people were sterilised without their consent, because of intellectual disability, mental illness or genetic disorders. Under this bill, the government will offer about USD 28,000 to each of the survivors who were sterilised. Many of them have already passed away,” Ms. Nacken said. 

She was speaking about a controversial law in Japan titled ‘Eugenics Protection Law’ which came into effect in 1948. The law was introduced at a time when the country was struggling with food shortages while rebuilding a war-ravaged nation. The law however was revoked in 1996. 

During that time, an estimated 25,000 people were sterilised under the government programme, with at least half of the number not consenting. The programme was created to prevent the birth of children identified as ‘inferior’ targeting mostly women with disabilities. 

“Beyond the issue of compensation, I believe what this story tells us is the social stigma and exclusion often associated with people with disabilities. There was an understanding that reproductive rights of people with disabilities have to be respected and protected. We have a long way to go,” Ms. Nacken opined. 

‘Just like everyone else’

In May 2008, the Convention on the Rights of Persons with Disabilities came into force and Sri Lanka ratified the convention in 2016. This was the first legally-binding international treaty on disability. It specifically mentions the rights of people with disabilities to access sexual and reproductive health services. However, these services are often inaccessible to persons living with disabilities for many reasons including physical barriers, stigma and discrimination. Sexual and reproductive health services have been largely overlooked in policy, planning and service delivery by social, legal, health and welfare services. 

The panel discussion which followed was moderated by Janitha Rukmal, disability rights activist and Co-founder of Enable Lanka Foundation. One of the eminent panellists, senior lecturer in obstetrics and gynecology at the Medical Faculty of Colombo University, Prof. Athula Kaluarachchi discussed the importance of providing equal reproductive health services to people with birth defects and disabilities. “Just like everyone else, people with disabilities should be able to enjoy a sexual life as well as have children if they wish. They must have equal access to family planning and antenatal care among other things. It is imperative that the service providers keep in mind their responsibilities towards people with birth defects and disabilities when planning and implementing reproductive health programmes.” 

The problem is we haven’t been able to see disability as part of diversity. Is it our problem that we are incapable of seeing them as diverse?
- Subhangi Herath

“How does the society look at individuals? The culture, the language they speak, even caste, all these come into play. There is certainly an individual aspect that needs to be discussed here. What is available to them in the environment that provides services is also important. For instance, do they have access to these services to family planning clinics? Do we recognise people with disabilities as a group of people who should not be kept away from these services?” Prof. Kaluarachchi questioned. 

Meanwhile, the moderator shared with the audience an experience of how healthcare services often overlooked the needs of persons with disabilities, especially their reproductive rights. “We live in a society where the medical system dictates the fact that if you create a ward or facility for expectant mothers, it automatically assumes that the mothers who arrive at the facility will not have a disability. With this kind of structurally-apartheid and socially-segregated society, how do you navigate the idea of inclusion?” Rukmal questioned. 

In April last year, our (Japan’s) government passed a bill to compensate victims of a decade-long government programme under which thousands of people were sterilised without their consent, because of intellectual disability, mental illness or genetic disorders

Blind to diversity

In response, professor in sociology at the Sociology Department of Colombo University, Subhangi Herath highlighted: “The ignorance and attitudes of the society and individuals raise most of these barriers – not the disabilities themselves. People with disabilities cannot be generalised as one group, and one-size-fits-all solutions do not work for everyone. Their needs are diverse. For instance, people with intellectual disabilities are further marginalised because most services focus on people with physical and visible disabilities,” Prof. Herath highlighted. 

She also stressed that the existing system did not allow people with disabilities to construct goals, and only offer them care, instead of empowering this group of citizens. “In my research with students, I have found that even certain academics and administrators have not been able to see people with disabilities as having equal rights as others. The main problem I see here is that it’s not only very specific to disability. When it comes to equal rights for all people belonging to different ethnicities, religions and genders, we have not been able to see human rights as enclosing all people in the world, despite their differences. The problem is we haven’t been able to see disability as part of diversity. Is it our problem that we are incapable of seeing them as diverse?” she questioned. 

The panel also included senior lecturer in the Disability Studies Department of the Kelaniya University Medical Faculty, Dr. Shyamani Hettiarachchi. “In spite of the explanatory models of disability, whether it is karma, whatever these models may be, it does not take away the fundamental rights of these citizens to be seen as people,” she said. 

The right to your body, the right to make choices, the right to have a sexuality; how do these messages go out?
- Shyamani Hettiarachchi.

In her comments, she noted that access to information about reproductive health was another issue. “The right to your body, the right to make choices, the right to have a sexuality; how do these messages go out? Is the format accessible? For a person with certain disabilities, it may need to have very simple language, whereas a person with a different disability would need pictorial support. They should help people understand what their rights are,” she opined. 

The discussion provided a platform for open dialogue between policymakers, health professionals, academics, the civil society, media and other stakeholders as it explored Sri Lanka’s progress and the way forward in relation to inclusion and the 2030 Agenda on Sustainable Development. 

Pix courtesy: UNFPA