Stopping stigmas attached to disability during a pandemic

People with disabilities are often left behind in society but Christian Blind Mission has been working to ensure they are supported as the pandemic worsened their situation, Chai Brady writes

The rights of people with disabilities in the developing world were “abused” during the pandemic as many of them were disproportionately affected by restrictions, according to the charity Christian Blind Mission (CBM). Now there is now a lot of work to do to address the halted progress.

Although the name may be slightly misleading, CBM is a charity that caters for the needs of people of all disabilities in the developing world. It was started more than 100 years ago by a German priest who founded a school for blind children in Turkey.

There would already be difficulties for people with disabilities regarding access to services, especially since they are often stigmatised by their community”

CBM International is a worldwide network of 10 organisations working in 53 countries. CBM Ireland was established in 2002.

Speaking to The Irish Catholic, CBM Programme Manager Louise Talbot Beirne, who is based in Ireland, explained the pandemic’s devastating impact on poor communities in the developing world. There would already be difficulties for people with disabilities regarding access to services, especially since they are often stigmatised by their community.

Ms Talbot Beirne said she hopes CBM can now fill the gaps that were created by Covid and subsequent lockdowns which left many people jobless and with no means to support themselves or their families.

Disabilities

“People with disabilities are left behind, generally they were left behind during Covid, and so there has been far less progress made in the past few years than there should have been,” she said.

“People with disabilities, their rights were abused, they didn’t get the care that they needed, they were disproportionately affected by Covid itself, so we want to be able to make up that difference and to support people with disabilities as much as we can to firstly get back to where they were and then secondly of course to be moving forwards.”

CBM works closely with local government and receives commitments to make sure that the projects they’re involved with are maintained and continue after the charity have left.

“We show them how it works and we slowly hand over the services to them,” said Ms Talbot Beirne, “So that’s why, for example, we only work in government schools, government hospitals, so that they will then take over and keep things running. That means that at least we know that it will continue there.”

Currently they are working on a three-year project in Ethiopia called ‘Bridge the Gap’, with Ms Talbot Beirne saying: “It’s about bridging the gaps between people with disabilities and the rights and services that they’re entitled to so a big part of that is supporting people to get access to health care, access to education, access to financial institutions to civil society, it covers quite a broad spectrum of areas of work and it’s funded by Irish Aid as well as some other donors.

“It started in late 2018  and it’s finishing in this coming September so about 18 months of the project, half of the project, has been affected by Covid – of course we had to quite significantly change the plan,” she said.

Home visits

Some of CBM’s work includes home visits. They would have a number of volunteers who visit people and give them simple physiotherapy, there is also some home-based education to help kids prepare to go into mainstream school. In schools they also train teachers to be able to work with children with disabilities.
These services “were severely impacted by the pandemic and by lockdown restrictions”, Ms Talbot Beirne explained. “We sat down with our partners and we said, ‘Okay, you’ve got all these restrictions. What can you still do? And what do you need to change in order to make sure that we can still support people in this really difficult time?’”

One of their main concerns was making sure that people with disabilities were heard during the pandemic planning process and that any government response would keep them in mind. “So a big thing that we were able to do, which was really exciting actually because our partners had worked really hard to have good relationships with local government, was we were able to put a disability representative on the local working group that was deciding how restrictions would work, how Covid responses would happen in the area.

“It meant people with disabilities were included from the beginning; making sure that their needs were met. Obviously their needs are different and they do tend to be left behind in situations like this.”

The area where we work, Amhara, at the height of everything there was extremely severe restrictions”

Despite work related to their three-year project in Ethiopia coming up against the myriad of challenges wrought by the pandemic, the charity had to adapt the work it was doing to tackle the larger issue of Covid-19.

“The area where we work, Amhara, at the height of everything there was extremely severe restrictions. People weren’t allowed to leave their homes without a very specific reason and all the schools were closed, a lot of elective hospital surgeries were cancelled as well as any kind of public meetings,” Ms Talbot Beirne said.

“Within our own project, we tried to do the home visits as much as we possibly could, obviously with distancing and masks. We also distributed PPE, soap, sanitiser, masks and when we were doing that we were also educating people about Covid and particularly how Covid could impact people with disabilities differently.

“If you have a child with cerebral palsy, they’re going to struggle with their breathing. They can be much more liable to get particularly sick. That may not be well known. At the same time there was of course a lot of messaging around Covid, public awareness campaigns and things like that, so we worked to make sure that those were accessible for people with disabilities.

“There were leaflets in braille, for example, easy to read leaflets for people with intellectual disabilities. We put a lot of stuff on radio so people with vision impairments could still get the messaging, so a lot of work was done to make sure everybody heard the information that they needed,” she said.

Subsistence

CBS was also involved in helping people who had lost jobs to get food, particularly for families on their programmes.

“A lot of them would have what you call subsistence daily living, they get money in for what they need that day. A lot of those kind of jobs just weren’t possible, like shoe shiners and people selling in markets, all of that was closed so we did distribute emergency food supplies to make sure that people weren’t completely stuck, we’re actually still doing that now to an extent, even though Ethiopia has opened up, because a lot of those people lost their businesses,” Ms Talbot Beirne said.

“We’re doing this alongside working with savings and loans groups. We’re also continuing with that direct support until people are able to get back on their own feet.”
During their work in Ethiopia news of Covid-19 began to surface. Originating from China, the impacts were soon felt in Europe, with Ms Talbot Beirne saying there was a lot of confusion and uncertainty at the time. When it was clear the virus was going to be a worldwide issue, “the fear came”.

“One of the biggest things that we deal with and we see regularly in the project, is stigma. People with disabilities would be considered perhaps cursed or there would be a lot of fear around associating with them, you know bad luck and things like that. Along with Covid of course that gets multiplied so in the communities in which our project participants live, we needed to make really sure that they didn’t leave people with disabilities behind,” she said.

“There was definitely a lot of fear that they wouldn’t get the help that they needed as well. We did a piece of research before we started the project, and we found that sometimes when a person with a disability goes to the doctor, the doctor will only see their disability. So say somebody with a leg amputation goes with malaria, the doctor might not even recognise the malaria because they’re just looking at the physical disabilities, so there’s some real issues in terms of access to health care.”

Health care systems

“Of course, when everything is shutting down and there is so much pressure on health care systems, that just increases. There was a real fear that people wouldn’t get the support that they needed, that they wouldn’t get treatment they were entitled to it.

“Something that we do is accompany people to appointments to make sure that they are heard. We’ve got specially trained facilitators who would do that so they would have some medical knowledge, they would know the person very well and they would go and they would advocate for them and make sure do get that treatment.”

Biggest problem

However, Ms Talbot Beirne said the biggest problem was the fact many people had lost their incomes as a result of lockdown.

“A lot of countries like Ethiopia were kind of copying the response in the West but without a solid social welfare system you’re not going to be able to protect people who suddenly are not able to work,” she said. Now there is ongoing reflection regarding a more appropriate response, she said, but the consequences are already being felt.

The education of children was also a big issue, with some not attending school for more than a year. Already children with disabilities face challenges accessing education as the school may feel they do not have the facilities to support them, or they face stigma and rejection from their community.

Giving an example, Ms Talbot Beirne said: “There was a girl aged 12 that I met on one of my visits who had never been to school. And she had a physical disability. But there was no reason mentally or intellectually she shouldn’t be educated, it was just that not a single school would accept her and this was a middle class family. This wasn’t a poor family. It’s an issue that is spread across all classes. It’s certainly something that goes beyond just people living on the poverty line.

They are planning to start a new project in Kenya and Zimbabwe doing a lot of the same things they have started in Ethiopia”

“Our facilitators helped her to get to a level where she could join school and not be at too much of a disadvantage. And then at the same time, we would train teachers. So the teacher in the class that she was assigned to was trained in how to support her and how to work with her and we gave resources, particular educational resources like books, school bags, computers where need be – depending on the disability – to make sure they had access to what they needed.”

The charity has set up disability clubs in school and invites children with and without disabilities to attend in an effort to quell the stigma attached to those with disabilities – who are often kept at home due to perceptions of them within their community.

“Kids only absorb what they’re told and what they’re surrounded by so if they learn that the child with the vision impairment is just like them and they learn to be friends, it’s just – it’s huge, you can only imagine the difference. Those kids then go home and tell their parents ‘I’ve got this friend who can’t see’ and the children are able to bring that message home. It’s quite an effective way of reducing stigma,” Ms Talbot Beirne said.

They are planning to start a new project in Kenya and Zimbabwe doing a lot of the same things they have started in Ethiopia.

Mental health

There has been a lot of discussion about the impact the pandemic has had on mental health, which CBM also considers to be part of their remit – as they say psychosocial disabilities and mental health disorders can be very disabling.

“We learned a lot through Covid about the impact of disconnection, loneliness and the importance of peer support,” Ms Talbot Beirne said, “Our next project is actually going to be replicating a lot of what we did in Ethiopia, but with an increased emphasis on mental health.

What we did at the beginning of the Bridge the Gap project was a community survey which is basically going around and trying to find people with disabilities to bring into the project”

“We’re hoping that the public will understand because they’ve been there, we were all affected by Covid mentally. It was the same in the countries where we work. We want to particularly look at supporting people with mental health disabilities, but also looking particularly at the mental health needs of people with disabilities. Helping them to support one another, so we do a lot of things around peer support groups.”

Speaking about a child in Ethiopia, Ayichew Worku (4), who they believed to have Down’s syndrome which had not been diagnosed, Ms Talbot Beirne said all he could do was lie down and was unable to sit up or hold up his head. His mother had to leave work to care for him and the father was at work for most of the day, they also had a daughter aged seven.

“The mom was reaching the end of her tether in terms of feeling like ‘how do I look after my child?’ She’s fully dedicated but didn’t have the resources, didn’t know what to do. She had taken him to hospital when he was very young and the doctor said to bring him back when he was six and they would have a better idea of what to do. She brought him to all these kind of healers and nothing had happened,” she said.

Community survey

“What we did at the beginning of the Bridge the Gap project was a community survey which is basically going around and trying to find people with disabilities to bring into the project. Because often they would be in the house all the time, the neighbours might not know that there’s someone with a disability there. But it turned out that her cousin knew about the project and told her.

“So she was put in touch with our community facilitators and they started visiting every week, at the beginning it was at least three times a week doing very simple physio with him firstly. Showing mom how to move his legs, move his arms, get him moving, things like that.

“He made really quick progress and so when I met him six months after they started he was sitting up. And he was like a ray of sunshine. I’ve never met a child so happy. There were loads of visitors because we were quite a big group and he was just so excited to see everybody.”

CBM also connected the family to appropriate medical services and someone went with the mother to the appointment “so the doctor couldn’t just brush her off and tell her to go away”.

The effects of the pandemic could take years to recover from but while progress to help better integrate those with disabilities is somewhat halted, it seems CBM are fighting to push positive change and advocate for those often forgotten by society.