Time to thrive.
The global disability rights movement is led by the energy and drive of activists all over the world, collaborating for change. It changes lives, minds and practices, but faces huge challenges in terms of access and funding. What is needed for a thriving and equitable disability rights movement? Faith Njahîra, a Kenyan disability inclusion expert and PhD candidate at University of Pretoria, shares her thoughts.
“A thriving and equitable disability rights movements sound like a futuristic dream, but also one I feel I have experienced within some pockets of disability spaces. It looks like interacting with multiple disabled people without having to be fixed to one corner where space is physically accessible. Being in spaces where I can roll in on my wheelchair, has found me feeling like a thriving person. A thriving community is one where the individuals thrive and take care of each other.
“Right now we have disability justice community in the US which has really been pushed by queer Black and Brown disabled people as a response to the disability movement over the years not serving our needs.
“We need a disability movement where we are not forced to compete for resources, where we are not pitted against each other, and we are not expected to all do the same kind of work, because equitability for me means that we are recognised for doing the things we know need to be done for our own bodies and spirits.”
Aneth Gerana Isaya, Founder and Director of FUWAVITA (Tanzania Joy Women Entrepreneurship for the Deaf) shares her experience of the disability rights movement in Tanzania, and explains why, as a disabled woman, she faces double discrimination.
“Really in Tanzania women with disabilities face many challenges. Women with disabilities are often neglected and rejected I remember at the time when I was trying to apply for job opportunities, I approached many companies to employ me but many companies rejected me. I believed in myself and was confident in my education, so I tried also to think about how form an organisation for persons with disabilities. We need to think about how to invest more in women with disabilities because we have so much potential and are capable of doing things. That’s why we formed FUWAVITA to make sure that women are included in different spheres – political, social and economic.”
Nayem Molla, Diversity and Inclusion Officer at Microgovernance Research Initiative, Bangladesh explains how the movement cannot thrive until disabled people are equally included:
“During COVID the government said, yes, we are in a difficult situation and we can’t provide support to all people. But this compromises the rights of persons with disabilities because they are the lowest priority, they become excluded. For a thriving movement we need to challenge such circumstances. We want to be equally included and therefore empowered.”
We need to think about how to invest more in women with disabilities because we have so much potential and are capable of doing things. That’s why we formed FUWAVITA to make sure that women are included in different spheres – political, social and economic.Aneth, Founder of FUWATIVA
Community not competition.
It is an interesting moment for the disability rights movement, coming out of the COVID-19 pandemic. For the first time many people around the world experienced the access restrictions faced by disabled people on a daily basis. Activities and experiences moved online, and people took precautions to protect against the spread of germs. Now, talk about getting ‘back to normal’ is a threat to some of the welcome changes forced through the pandemic.
Faith Njahîra explains her experience during the pandemic.
“As an individual with muscular dystrophy, the biggest thing that I loved at a personal level is that the world slowed down. But now people are saying, we are going back to “normal”, but for me, the speed that at which we were moving during the pandemic is what my chronically ill body moves at all the time. People had to figure out how to wear your mask and wash their hands and sanitize like I have been doing for years, because I have respiratory weakness.
“In terms of activism, there was a big push to then go back to “normal” project functioning for projects that require community activities, face to face interactions. Myself and my disabled siblings did feel isolated again, because there were are those within the disability community that do not have immune compromised, situation conditions around them. It was heart breaking to see that even some of us within the disability community left each other behind.
“At the same time, people were saying, oh no don’t worry it’s only for those who are immune compromised conditions and chronically ill those are the only ones who are going to die and within the disability community there was such a negative painful period. For us it was like, we can hear you actually saying, that you’re okay with the rest of us dying, and that was a really strange moment.”
In spite of these challenges, the pandemic did offer opportunities with lasting impacts, as Nayem explains:
“I saw that during Covid it’s easier to record books because all the people are staying home in their house. They are reading books and if it’s possible for them to to record a book and save it, it means persons with visual impairment can also learn from those books, because in Bangladesh we don’t have books in accessible formats for people with visible disabilities.
“At first, I just posted the idea and 11 people responded so say they would like to record a book for persons with disabilities. We ended up with 131 books within two months! We wouldn’t have been able to do this before Covid because we didn’t have the capacity to record the books ourselves.”
Persons with disabilities needs sufficient funding to support advocacy and campaigns, especially in a country where access is almost non-existent. There is a lack of funding to meet the needs of persons with disability.Elkhansa, Young Leader in Sudan.
Equity in funding.
A challenge universally highlight by our panellists is access to funding. A tiny proportion of development funding goes towards disability rights, and grassroots organisations in particular face huge barriers in accessing this.
Elkhansa Fahad, Young Leader with ADD International, Sudan, explains:
“From my point of view the resources in funding are very weak compared to the needs. Persons with disabilities needs sufficient funding to support advocacy and campaigns, especially in a country where access is almost non-existent. There is a lack of funding to meet the needs of persons with disability.”
Aneth explains the difference funding can make to efforts to advocate for inclusion and accessibility:
“We need donors and funders to support us our programmes. We want to make sure that people with disabilities and women and girls with disability complete their education and make sure that also they are employed. We need funding to run our leadership programme to train women with disabilities to get the chance to raise awareness of the challenges they face in many different places, so that people better accept and include people with disabilities.”
Nayem explains the inequality in the funding landscape – how disability rights organisations have less chance of receiving money than other justice movements:
“A lot of disability activism in my country is sustained by foreign funding. Since COVID and the war in Ukraine, foreign funding has decreased a lot in Bangladesh and so did the activities of different organisations that are working towards the disability coalition.
“So what happens is that organisations that are working for disability rights have to go through some procedures to get the funding but they don’t have the organisational capacity so they miss out. Some big organisations like ADD or the UN provide funding to some other organisations and through that they contribute to their activities, but funding has really impacted all the activities of organisations here in Bangladesh.”
A lot of disability activism in my country is sustained by foreign funding. Since COVID and the war in Ukraine, foreign funding has decreased a lot in Bangladesh and so did the activities of different organisations that are working towards the disability coalition.Nayem, Disability Rights Activist, Bangladesh
The right to be heard.
There is a fundamental link between funding and voice in the movement. Disability rights activists need funding to implement their work, and want to be trusted and heard, in terms of how these funds are deployed.
“People don’t believe in our capability and the things that we are doing. In Tanzania we have struggled to get funding because of many donors ask for so muchinformation which is very difficult to get and so are people with disabilities organisations are left behind.
“When ADD now is going to transform, they need also to include special windows for women with disabilities so that they can access fund and support the initiative which is run by persons with disabilities.”
Faith explains how she uses academic research to raise awareness of the experiences and needs of disabled people:
“I’ve always tried to mix academic research with advocacy and my push really has been from the years of advocacy and activism and seeing how things are remaining the same. The stories that I have been told about either people in Kenya or elsewhere, with disabilities are the same, so I feel like for me what would be great to see is to see an expansion of support which I think is really lacking and it’s impossible for us to archive our histories so that then we can continue learning from our ancestors from our elders from each other.”
A new participatory funding model.
ADD International is embarking on a journey to address these challenges, by becoming a participatory grant maker. This will mean more money going directly to disability rights activists and organisations, but also, that disabled people are the ones to decide how these funds are used.
Fredrick Ouko, Co-Chief Executive and Transformation Officer, ADD International explains what needs to change and how ADD seeks to address these challenges:
“As all the speakers have said, they are looking for a well-resourced disability rights movement, they are looking for some sort of interdependence within the movement and they are looking for a movement that is not forced to compete for resources amongst themselves.
“Covid has taught us that indeed people can work from home, but persons with disabilities have been looking for accommodation for years that no one gave us. So, if we are asking for reasonable accommodation to work from home, no one allowed us but then Covid forced all of us to work from home and it means there’s something wrong with how we make decisions around here.
“The decrease in funding during that time led to persons with disability not being recognised as agents. We need to ensure that everyone is being treated as a human being and we are actually giving them what they deserve what they need they shouldn’t be asking, and it shouldn’t be given as an act of pity or charity but as a matter of fundamental rights as a human being.
ADD is shifting the way we work to ensure even more funds are distributed to organisations of people with disabilities and that disabled people play a key role in deciding how funds are used.
“We are going to be more committed and more focused on supporting organisations of persons with disability and those with lived experience of disability to allow them do the things they want to do and decide what is imperative for them and us not deciding because we see in this field people are deciding or funders are deciding what is pertinent to you and we want to try to disrupt that and allow persons with disability to decide for themselves and invest in the issues that actually are dear to them and from this we already started making strikes as ADD International.
“We are currently co-designing a pilot to launch next year. It is a participatory grant making model that centres disability rights activists in Africa and Asia. We have already done a consultation with persons with disability, and we are now co-designing with them.
“Secondly, we are looking at leadership. We are co-designing a leadership programme, a youth leadership academy specifically for young people with disability so that they can realise their full potential and be better able to work on the initiatives that respond to the immediate needs of their communities, and sustain the passion that they have to develop new leadership within the eco-system.
“Thirdly we are looking at the intersection with the women’s rights movement and youth leadership movement. We are looking at how they intersect with disability, how is everyone learning from one another, how are disability issues referred to within those contexts? If activists from women’s rights movement can learn from the disability rights movement, and from the youth movement, all of them together, it gives us an opportunity to solve our problems as allies so that we quicken the pace at which we can service the needs of society.”
We need to ensure that everyone is being treated as a human being and we are actually giving them what they deserve what they need they shouldn’t be asking, and it shouldn’t be given as an act of pity or charity but as a matter of fundamental rights as a human being.Fredrick, Co-Chief Executive Transformation Officer
“Lastly, we are looking at a fund for ADD, so that when we invest in organisations of persons with disability we don’t just invest once, but we are investing for the long haul, it might be five, ten, or 15 years. The project model of funding persons with disability leaves them without any sufficient resources to support the issues they need to work on over long haul. For example, if they were to do advocacy around say inclusive education, policy takes quite a long time yet organisations with disability are only exposed to one year project funding or two years and that’s it. We want to follow up our organisations of persons with disability are fully supported and are able to see the impact and fruits of their work in their community.
“This is a journey we are going on as ADD International and we look forward to partnering with funders and with other organisations to make this vision a reality together.”
To find out more about ADD International’s journey to become a participatory grant maker, see add.org.uk/transformation