- 4.4% of population above 5 lives with disabilities
- Statistical data provides unrealistically low number
- Disability allowance only reaches small percentage
- Women with disabilities falling through the cracks
- Call on State to incorporate their demands in law
A group of women living with disabilities in Sri Lanka presented a list of demands recently, calling for the upholding of their long-neglected rights.
The group – comprising women with disabilities from Batticaloa, Ampara, and Kandy – put forward their list of demands to facilitate full lives of self-respect and dignity, while outlining the immense challenges they face on a daily basis.
Noting that women living with disabilities had ‘always lived as second-class citizens in Sri Lanka,’ the group in its statement pointed out while Government statistics from 2019 maintained that 4.7% of Sri Lanka’s women lived with disabilities, the number was highly misleading.
Misleading numbers
According to the Household Income and Expenditure Survey (HIES) 2019 Final Report, in Sri Lanka, 4.4% (approximate estimate 932,800) of the population above five years of age live with disabilities.
“We know from field-level work that this statistical data provides an unrealistically low number. Those born with disabilities or living with disabilities from a young age live without access to medical care and other facilities that could enhance our quality of life that are available in other parts of the world. From education to employment, we face many challenges. We are unable to live lives as whole members of society,” the group asserted.
Speaking to The Sunday Morning, feminist activist and independent researcher based in Batticaloa Sarala Emmanuel pointed out that no accurate data was available on the number of people living with disabilities in the country.
“The number we have now is from the 2019 HIES, which says 4.4% of the population above the age of five comprises those living with disabilities, which is close to a million people. There is clear invisibilisation, apart from gendered invisibilisation.”
Impact of war injuries
Compounding matters, these assessments are based on the standard classification – seeing, hearing, mobility, self-care, cognition, and communication – and do not capture all war-related injuries, with the group emphasising that war injuries needed to be looked at differently.
“There are internal injuries; you are living with pieces of shell inside your body and your head and unable to engage in the everyday functioning required to live a decent life. That level of assessment is not available,” Emmanuel noted, adding that this was a big issue in the north and east in the post-war context.
The women’s group in their statement asserted that in everyday life they had to face a ‘lack of access, lack of understanding of their realities, condescending sympathy, disrespect, and ridicule’.
“It is in this context that we put forth the demands that follow in the hope that women living with disabilities in Sri Lanka can live full lives with self-respect and dignity. We hope that our fundamental needs to live such a life will be fulfilled at the earliest. The existing challenges have been further compounded by the Covid-19 pandemic and the ongoing economic crisis,” the statement added.
Massive discrimination
Emmanuel pointed out that several women’s organisations – primarily Suriya Women’s Development Centre – and individual civil society activists had been working in the east with women leaders of groups of women living with disabilities, trying to highlight the massive discrimination they face.
“During Covid, the impact on them was massive. The only support they have is self-employment support schemes, but accessing markets poses other challenges. Generally for women it’s been difficult and worse for women with disabilities,” she pointed out.
Having held lengthy discussions, they had realised that nothing would get done if they were to present an extensive list and also decided to build alliances rather than only spotlighting Batticaloa.
“We had a vibrant process of conversation with groups of women living with disabilities in Ampara and Kandy, where we discussed the crisis and compiled the urgent needs presented in the petition. We’ve been working at district level and we really need to talk about this at a national level – this is a group that is falling through the cracks,” Emmanuel asserted.
The petition – issued by the Vannam Women Living with Disabilities Forum Batticaloa, We for Rights Kandy, and Vivida Kusalatha Sahitha Pudgalayinge Sangamaya Ampara and endorsed by several women’s groups and rights organisations – focused on the following areas:
National ID card
The group called for the issuance of an identity card similar to the National Identity Card (NIC) for people living with disabilities, noting that it was essential to ensure that those with non-visible disabilities were able to access all the rights extended to people living with disabilities.
The card is to be used in transport facilities, hospitals, employment institutions, State institutions, banks, and other such public spaces.
Emmanuel stated: “The military has issued such cards for disabled military personnel, where they don’t have to prove their disability on their body and this gives them subsidies for transport and to access clinics.”
State disability benefit
In 2019, due to pressure by northern groups of women living with disabilities, the disability allowance provided by the State was increased from Rs. 3,000 to Rs. 5,000 and the number of beneficiaries was increased from 32,000 to 72,000 across the country. However, this is nowhere near enough, given that close to a million people with disabilities live in Sri Lanka.
The group noted that the minimal amount being given by the Government for those living with disabilities must be given to all persons living with disabilities and that the responsibility of registering all persons living with disabilities must fall upon Government officials at Grama Niladhari level. It also pointed out that proper registration was essential to ensure accurate statistical data and adequate budget allocations.
The statement also called for the disability allowance to be given to each person living with disabilities in a family and the abolition of the points system to ascertain eligibility for the benefit.
“The State assistance goes to the household, so even if there is more than one person in the household with disabilities, it is still entitled to only one allowance. In the north and east it is quite common for a household to have more than one person living with disabilities, but you are not seen in your individual right. Gendered assumptions and norms govern access to this benefit too,” Emmanuel noted.
The group further emphasised that the disability benefit must not be cancelled on accord of a person receiving any other assistance from the Government and vice versa and that all benefit amounts must go directly into personal bank accounts to make the benefit amount conveniently accessible and not to the Samurdhi Bank (as has been done in recent months).
“People with disabilities used to get the allowance to their individual accounts at People’s Bank but the State has now moved it to the Samurdhi Bank, which is not as easily accessible,” said Emmanuel.
“The more worrying side is, why have they done this? Are they doing this to consolidate all the so-called State assistance and does this mean they are going to cut the allowance if a person, for example, receives the Samurdhi allowance? That’s the more dangerous thing we are monitoring. The idea then is that if you are getting one form of State assistance, you shouldn’t receive any other form of State assistance. The discourse is ‘you are creating dependency of the poor on the State’ and we are trying to challenge that discourse.”
The statement further noted that the monthly benefit amount of Rs. 5,000 was barely enough to fulfil any fundamental needs and thus should be given to all persons living with disabilities to cover at least their medical expenses.
“State assistance is not almsgiving; it is your right amid this economic crisis you are not responsible for. If the State is saying ‘we prioritise vulnerable groups,’ then this group should be prioritised. The new Budget, as far as our analysis has shown, has not even talked about the disability allowance in terms of increasing it or covering more people. In fact, people are afraid that it’s going to get cut with the austerity measures,” Emmanuel further noted.
Health services
The statement also calls for all areas in Government hospitals to be made accessible to persons living with all forms of disabilities and separate queues for people living with disabilities.
“Prosthetic equipment – an integral part of our bodies – must be issued with good quality and efficiency at every hospital. Language issues at hospitals, including for those who speak Tamil and sign language, must be addressed with adequate translation facilities immediately. Doctors, nurses, and other medical staff must be made aware of the challenges of the everyday realities of persons living with disabilities, especially women,” it added.
Transport services
Another major challenge facing women living with disabilities in Sri Lanka is the lack of accessible transport, which poses challenges in earning a livelihood, living everyday lives, and accessing health services.
“As public and private bus systems cannot be altered overnight, arrangements must be made at the local level with three-wheelers to serve as subsidised transport for people living with disabilities in the short run. We must be provided with access to free transport facilities,” the statement noted.
It also called for a circular to be released after deliberation by the Transport Board to all public and private transport systems about the challenges of persons living with disabilities and the relevant measures being taken to address them.
Despite ratifying the United Nations Convention on the Rights of People with Disabilities (CRPD) in February 2016, Sri Lanka is yet to go the distance in terms of implementation.
“The two minutes of stoppage stipulated in the convention for all transport facilities must be executed in Sri Lanka immediately. Buses that are available in other countries which provide accessibility to persons living with disabilities must be brought to Sri Lanka,” the statement noted.
Livelihood and employment
Asserting that the current 3% allocation for employment for people living with disabilities was ‘grossly inadequate,’ the group pointed out that it was men living with disabilities who largely benefitted from it and that a separate 3% must be introduced for women living with disabilities.
“Such employment must be based not just on formal education but also on skills and experience and this allocation should also be applied to private institutions. For us to easily engage in livelihood activities and everyday life, the special drivers’ licence should be made issuable in every district.”
Government stance
State Minister of Women and Child Affairs Geetha Kumarasinghe speaking to The Sunday Morning condemned the limitation of the disability allowance to only one person per household, terming it a “great injustice” and adding that plans were underway to submit a Cabinet paper in this regard.
“In providing the allowance only for one disabled person per household, we are doing a great injustice. If there are two disabled people in a household, the allowance should be provided to both. We are hoping to make a request in this regard via a Cabinet paper. I know the President will definitely approve of it. In many instances only men are provided with this allowance, not women. This is wrong; these women also need to live. I will definitely push for this,” she asserted.
In terms of the disability allowance, she stated that every Divisional Secretariat provided an allowance of Rs. 5,000 a month for disabled and elderly persons who were low-income earners and noted that any disabled women who were not receiving this allowance could make a request via the Divisional Secretariats.
“Among the thousands of people who are disabled, some are State employees, some are pensioners, and some do not like to accept this allowance. When a request is made, we look into whether they earn an income of less than Rs. 50,000 a month as the allowance should only go to those truly in need. Sri Lanka is not in an economically strong position and we provide these allowances with great difficulty, paying interest for the loans via which we provide them. However, I would very much like to increase this allowance if possible for those who are desperately in need,” she added.
Speaking on employment, she noted that more forms of self-employment needed to be encouraged and training provided: “We must provide training for disabled persons in order to enable employment. There are officers to look into these matters in the Divisional Secretariats.”
‘Those with disabilities like me encounter many hardships’
A woman from Batticaloa (name withheld) in her late 30s who was injured in the civil war and has an artificial limb from the hip down shares her story:
I am still dealing with the trials that my life has brought me as a disabled person who was affected by the civil war. After getting married, I struggled daily with my kids and had an extremely hard time even qualifying for the Government’s aid programmes.
I was aware that the Divisional Secretariat could provide families and disabled individuals with a livelihood allowance. I explained my difficulties to the Divisional Secretariat and asked for a subsistence allowance, but the officials refused my request on the grounds that I was married and had a husband. I was deeply upset when my request was rejected without consideration of my condition.
Then Government representatives called me and said that the Government was going to fund a housing project. However, they again rejected my request, giving the same justification: they said I had no chance of getting this housing project since I was married and living with my husband and that he would take care of me.
I then stopped going to see those officials and stopped asking for assistance. Still, I couldn’t help but wonder when my family’s problems would be resolved.
My husband was working for daily wages because he was unable to find a permanent place. I also decided to work to relieve some of the family’s financial burden. No matter how often I applied for jobs, my physical condition prevented me from getting hired.
I took sewing lessons. Following that, I enrolled in formal cooking classes. But career opportunities were not available to me when I went out on my own after training.
An organisation provided me with cooking training and helped me get a job at a hotel in Passikudah. Even though it was difficult for me and it was considered inappropriate work for a disabled person, I did it for my kids, out of concern for the suffering my family would endure. I wasn’t ready to give up my meagre income, even though I had a low monthly income and transportation issues.
During Covid, hotel operations were halted. I had to leave my job because I was unable to report for duty. My husband experienced numerous issues with work around the same time. Then my family began experiencing a series of problems – family difficulties and poverty issues on the one hand and my husband harassing me on the other. I suffered more because my husband had other personal relationships.
At one point, I was at a loss about what to do next. I was too nervous to even file a complaint with the Police about my husband’s behaviour. I avoided going to the Police station because I believed that family problems could not be resolved there; they don’t take our problems seriously, they ask us various questions but we don’t get any solutions.
Transportation is still an important issue for those with disabilities like me. We are not given reserved seats on buses and buses are not equipped to accommodate wheelchairs. Some buses will not allow disabled individuals to board if they notice a wheelchair. Regular transit is a major issue due to the lack of adequate bus services. Amidst such challenges, the mind does not want to leave the house.
After I got over my hesitancy and fear, I approached Government officials and received the assistance I needed – a monthly sustenance stipend of Rs. 5,000. I launched a small-scale chilli powder grinding facility with this scant assistance and the grinding equipment I possessed, creating a business opportunity to support my family.
Some disabled persons create barriers for those who live around them and people like me are excluded from various groups. It hurts me to see others acting like this. A separate organisation for people with disabilities also operates under the Divisional Secretariat, through which exclusive savings activities are conducted for the differently-abled and monthly subscriptions are also received.
Even through this disadvantaged group, I received no assistance. As a result, I don’t take part in any of its operations. I have a limited connection with it because its key members engage in unfair behaviour and are unaware of the true concerns of individuals with disabilities.
In every situation, those with disabilities like me continue to encounter a wide range of obstacles and hardships in our daily lives.