She is wearing a green dupatta (a long thin scarf) and even if we sit less than a metre from each other, she can’t see me.
Naheed has cataracts in both eyes and is scheduled for surgery the next day. But her vision is not the only thing Naheed has lost. About eight months ago she had a stroke and was left paralysed in the lower left part of her body. She can’t work; she can’t see her grandchildren.
I’m in Pakistan to learn more about a new inclusive eye health project, Right to Health. I’ve followed Naheed during her final assessments and during her operation at the LRBT eye hospital, one of Sightsavers’ partner hospitals, which has given me an insight into how difficult it can be for people with disabilities to get health care in Pakistan.
The LRBT hospital is not particularly accessible for people who use wheelchairs: the rooms are small and it’s hard to move around. The equipment used for eye examinations is often too high for Naheed to reach, and she needs to be lifted up underneath her arms by her husband so she can position her face close enough to the instruments. Her experience of the local healthcare system has, in many ways, been painful and humiliating.
To learn more about the challenges people with disabilities face in Pakistan, I visit the offices of STEP, a disabled people’s organisation (DPO) that works in partnership with Sightsavers. There I meet Abia Akram, CEO of the National Forum for Women with Disabilities.
Abia tells me that in Pakistan, as in many other countries, there are often two extreme views on the causes of disability. Either people with disabilities are seen as extremely pure, innocent and close to god, therefore in need of protection. The other view is that they are a punishment from god. In both cases, the result is that the family member with a disability becomes isolated.
“People with disabilities are excluded in our society,” says Abia. “Even their families see them as a burden, because they are not getting employment, they are not educated, infrastructure is not accessible. How will they get jobs in future? And if they are not earning, it means they have to survive their whole life with their family.”
Waqar Shahid, programme coordinator at STEP, reveals the impact this can have. “If people with disabilities face negative attitudes, a lot of stigma is attached,” he explains. “Because of that, they don’t get involved in their communities. They just stay home.”
There are clearly huge challenges when it comes to disability inclusion in Pakistan. But STEP and other organisations are doing what they can to help people with disabilities learn about their rights and put them into practice.
I visit the village of Barakoh, which sits on a mountain slope an hour’s drive from Islamabad. It’s the location of an outreach camp organised by Sightsavers and another partner organisation, Development for Disabled People’s Organisation (DDPO).
Inside the camp, about 60 people of all ages have gathered, waiting for their turn to be examined by the optometrists who sit by a desk at the front.
DDPO was founded by Farah Butt, an energetic woman who is constantly on her feet, talking to patients and helping with eye screenings. In 2005, her husband Muhammed was injured in the huge earthquake that hit Pakistan, and was left partly paralysed.
Farah saw the way that people with disabilities were treated in mainstream hospitals, which are often inaccessible, with staff that often know very little about the needs of someone who, for example, uses a wheelchair, has hearing impairments or is paralysed. “I faced all the issues that families of people with disabilities face,” Farah explains. “I realised the issues and then I established this organisation.”
The hospitals are inaccessible not only because of poor design and lack of awareness, but also because the health system doesn’t take into consideration the long-term health implications and wellbeing of patients with disabilities.
“Nobody tells people with disabilities how to improve their lives by taking care of their health and managing their disability,” Farah says.
Mohammed Hafiz is 52 years old and has arrived at the eye camp in Barakoh on his disability scooter. He used to work at construction sites: one day while laying a roof, he fell and broke his spine, leaving him paralysed from the waist down. He is looked after by his brothers, but his eyesight is also deteriorating and now he can’t see well enough to enjoy – a pastime he used to enjoy.
Mohammed tells me how difficult it is to access health care in his situation. “I did not go to the hospital or any other health facility because it is difficult – there is no one to accompany me. And when I go there, I need help because it’s difficult for me to move around – the health facilities are not accessible for me. They give me different appointments for other visits, so it’s difficult for me to go there again and again.”
In Pakistan I’ve seen first-hand how challenging it can be to live with a disability. Learning about all the barriers, from families’ attitudes to difficulties accessing healthcare, it’s easy to think that the problems are insurmountable. But initiatives such as the eye outreach camp show it’s possible to improve access to health care and make it more inclusive.
The Right to Health programme, funded by UK aid, is one of Sightsavers’ first inclusive eye health projects and aims to demonstrate a new way of bringing health care to the most vulnerable and excluded groups.
Besides the outreach camps, the programme also includes accessibility audits of eye hospitals to ensure that patients with disabilities can access eye health care without barriers. Staff will be trained in sign language to make it easier for patients with hearing impairments to receive care and information.
There is also a strong focus on disability disaggregated data, and hospital staff who meet patients are being trained to use a questionnaire developed by the Washington Group on Disability Statistics (under the UN’s Statistical Commission) so they can fully understand their disabilities and gather accurate statistics.
Data is crucial, explains STEP executive director Atif Sheikh: people with disabilities have never been counted in Pakistan. “If you don’t have numbers, you can’t make any decisions,” he says. Accurate statistics form the basis of policymaking and legislation.
Dr Mohammed Nadeem, community ophthalmologist at LRBT eye hospital, took part in some of the initial training: he tells me he has really benefited from an increased understanding of disability inclusion. His hospital will soon undergo its accessibility audit, and Dr Nadeem is looking forward to learning what changes can be made to make the hospital accessible for everyone.