During one of my most recent video calls with Aleema Shivji, Oxfam’s newly appointed Chief Impact Officer, an email popped up on her screen. It was February, and the devastating earthquakes had just struck Türkiye and Syria. Oxfam had sent a fundraising message to its mailing list. Shivji paused to glance at it, before returning to our conversation with a look of satisfaction.
“The appeal lists people with disabilities as some of the most affected communities,” she said. “I’m only smiling because I had nothing to do with that. Would Oxfam have put that messaging in an appeal 10 years ago? I’m not sure.”
It was a subtle change, but a significant one for Shivji, who has worked her whole career fighting for aid to be more inclusive, especially for people with disabilities.
“At least words on the paper are changing,” she said. But she also noted shifts on the ground too: She had heard of another international organisation auditing the accessibility of collective shelters in Türkiye, and that a number of aid groups there were working directly with people with disabilities. “This is not something I would have seen a few years ago,” she told me.
According to the World Health Organization, about 1.3 billion people, or one in six, experience significant disabilities.
Even though disasters disproportionately affect people with disabilities – it’s estimated that between two and four times more people with disabilities die in disasters compared to the rest of the population – planning processes in many countries don’t consider their particular needs. Disasters often separate people with disabilities from their crutch, wheelchair, or assistance person. Early warning systems are often inaccessible to people who cannot hear or see; while escape routes can be impossible for people with mobility impairments.
And the aid sector doesn’t make it much easier for them either. Research has found that aid workers often fail to adapt their services, and that people with disabilities find it harder to access humanitarian assistance.
Shivji’s entire career – from working as a physio in Canada in her 20s to leading inclusivity efforts at one of the world’s largest international NGOs – has been devoted to addressing the needs of people on the margins, rehabilitating them personally, advocating for their rights globally, and making sure they have a say in an aid response that often excludes them.
Becoming a rebuilder
Shivji is a child of migrants. Her parents, of Indian descent, were living in Tanzania in the mid-70s and watched with fear and horror as anti-Indian sentiment rose in neighbouring Uganda until Indians were ultimately forced out of the country. Worried the same could happen in Tanzania, they took advantage of Canada’s open-door policy at the time and decided to make a new life there.
That story of displacement, Shivji said, defined her life.
“My upbringing [as a child of migrants] has been a driving force,” she told me during one of the many video calls we have had over the past few months. “My parents sacrificed a lot, and focused on rebuilding themselves.”
Shivji herself went on to become a rebuilder, but of other people – helping them get stronger and regain their independence after traumatic accidents or surgeries, or working with older people who struggled with mobility. She trained in Canada to be a physiotherapist, choosing it over being a doctor, because it afforded her more time and greater intimacy with patients.
“People would look at my CV and say, ‘no we can’t use you. You’re a physio, what are you going to do?’”
“As a physio, you work with people who rely on you and need you, and you are part of their story to bring them back,” she said.
Shivji recalled being exposed to inequality in service provision and rehabilitation services early on in her career. People from First Nations communities in Canada were regularly flown to the hospital where she worked. The disparity in access to these services didn’t seem fair. “People with fewer resources should still have access to rehabilitation services,” she said.
It spurred her to consider her role not only in Canada, but globally. “I asked myself, how can I use my skills to have more impact in the world?”
Carving out a role in aid
But back in 2004, working with people with disabilities wasn’t commonly part of a humanitarian or development response. “People would look at my CV and say, ‘no we can’t use you. You’re a physio, what are you going to do?’”
Shivji was told she had no place in international aid. She thought differently. At the age of 25, she applied for an internship with BRAC, one of the oldest and largest NGOs in Bangladesh. There were no expats running BRAC – the only foreigners were interns like herself, there to learn. She worked alongside a Bangladeshi team in a rehabilitation centre, putting her physio expertise to use.
Despite the naysayers, Shivji’s international career blossomed. From BRAC, she went on to work for Handicap International (now Humanity and Inclusion), advising the South Sudanese government on their plans for people with disabilities; supporting teams on the ground who were working with the Ministry of Education in Sierra Leone to ensure children with disabilities could access schools, and adapting the curriculum for children who use sign language; going from Palestine to Pakistan to the Philippines to make health, community services, and social care programmes more inclusive.
Shivji noticed that people with disabilities in these settings – and in most other places around the world, for that matter – rarely had a voice. “Voice and participation – those are the golden thread,” she said.
But to change this, she had her work cut out. At the time, the international aid sector was still lagging a long way behind when it came to including people with disabilities – and other marginalised groups – in direct programming and support.
National governments were no better: Research from 2019 found that, with few exceptions, many countries in Europe and Central Asia still didn’t actively engage with disabilities rights organisations for decision-making, and rarely disaggregated data by disabilities in their disaster risk programmes.
Haiti: A turning point for the disabilities agenda
For years, Shivji and her colleagues in the disabilities space fought for greater inclusion, but the pushback was always the same. There was a lack of awareness about just how many people were disabled, coupled with limited bandwidth to consider yet another marginalised subset.
“There was definitely a lot of eye-rolling,” from other aid workers, she recalls. “We don’t have time for this, or this isn’t important. We have our focus areas and that’s enough.”
“It’s not enough to support people with disabilities by giving them a wheelchair or a hearing aid if they don’t have a place to live or don’t feel safe or if they can’t eat.”
And it wasn’t that aid organisations weren’t considering exclusion. “Women, refugees, unaccompanied minors were all on the targeting lists. It’s just that people with disabilities were not,” Shivji explained.
However, shortcomings on aid inclusivity – particularly around those with disabilities – became highly visible in the aftermath of the 2010 Haiti earthquake.
Thousands of people suffered complex fractures, leaving them disabled or needing amputation. Shivji was there, working as a health coordinator and then as the head of mission for Handicap International (now Humanity and Inclusion).
The problem was suddenly impossible to ignore, and with the increased attention came the belated funding.
“For HI, it was such a big deal to have that coverage,” she recalled. “All of a sudden, more resources came in to support people with disabilities.”
Shivji and her colleagues at HI set about rebuilding houses to be accessible for people in wheelchairs, amputees, those who suffered physical impairments. It may have cost more upfront, but they demonstrated that it was ultimately cheaper than retrofitting structures later.
In the midst of a high-profile disaster, it was a perfect opportunity to showcase how it could be done: whether that was modifying a shelter box so that a person in a wheelchair or a visually impaired person could use it; or reconfiguring queues at food distributions so that people with mobility difficulties could more easily access them.
”It’s not about shaming people, but saying, ‘you’re not doing it, but here’s how we can help you do it’,” Shivji explained.
Another common refrain she heard from the mainstream aid sector was that disabilities issues were for specialists like her. “This is your job, not ours,” people would tell her.
Shivji’s retort: “It’s not enough to support people with disabilities by giving them a wheelchair or a hearing aid if they don’t have a place to live or don’t feel safe or if they can’t eat. It’s not just a specialist agency who needs to fix that. Everyone needs to be thinking about it.”
Her push speaks to the core of inclusion: “People with disabilities are part of the community. Unless we are considering all parts of the community, we can’t say we’re responding to the needs of the community,”
While Shivji was chipping away at the issue on the ground, and advocating globally, the policy landscape around disabilities was shifting.
One of the first significant turns was the Charter on Inclusion of Persons with Disabilities in Humanitarian Action. It was launched in 2016 when over 1,000 groups endorsed it to improve the participation of persons with disabilities in aid. The UN then came out with guidelines on disability inclusion in humanitarian action in 2019, turning these commitments into more practical standards. Importantly, people with disabilities were central to defining them.
“In the space of 10 years, you have loads of mainstream organisations recruiting disability specialists. All of a sudden, there's a demand, because the policy context changed.”
The first Global Disability Summit in 2018 was another major step, concluding with a set of commitments ranging from ensuring people with disabilities were treated fairly, to keeping better data about people with disabilities, to making it easier for children with disabilities to access education, to giving adults more opportunities to work.
Shivji reflected how the same organisations who used to frown at her kind of role a few years back are now hiring people just like her.
“In the space of 10 years, you have loads of mainstream organisations recruiting disability specialists,” she said. “All of a sudden, there's a demand, because the policy context changed.”
That’s not to say the work is over.
In recent crises, such as in Lebanon, where people from Syria have sought refuge, few organisations provided services to people with disabilities. In places like Kharkiv in Ukraine, wheelchair users can’t access public shelters, and the needs of deaf people and people on the autism spectrum are often ignored by authorities. A report from 2022 found that only 1 in 4 countries sampled in the Asia-Pacific region could monitor critical disability inclusion indicators relating to healthcare access.
“But there’s progress,” she said. “There’s more understanding of diversity within [the] community, and therefore the diversity of needs, in times of crisis.” Whether that’s people with disabilities, older people, trans people, or other members of the LGBTQI+ community, “the sector as a whole is more aware”.
Building a more inclusive system
In her new role as Chief Impact Officer for Oxfam, Shivji now works on making aid overall more accessible and equitable. While her remit has broadened, those early years fighting for inclusivity and watching people’s strength in their recovery have stayed with her.
“The people most impacted by the challenges of inequality or poverty – they’re the ones who have the best solutions.”
She has recently helped usher through Oxfam’s Decolonial Partnership Strategy – an internal roadmap for how they will work in solidarity with partners in the Global South. Shivji referred to it as “cutting-edge stuff”.
“The people most impacted by the challenges of inequality or poverty – they’re the ones who have the best solutions,” she said. “Our role is to support the solutions they’re identifying, on their terms, not coming in with our own pre-set strategy.”
This means a number of things for the organisation, but one of them is giving unrestricted funding to some local partners. “We can spend it on anything?” she recalled one of the groups replying in disbelief, after being so accustomed to the rigorous proposal process that most international NGOs put them through.
One of their partners used the funding to get an office because having their meetings in cafes meant that partners didn’t take them seriously. “Even paying rent – such a basic thing – helped raise the profile and the diversity of funding for this group,” she said. “They may not spend it on bright shiny stuff, but it’s foundational and enables them to continue their work.”
But while funding flows are important, they are ultimately just a part of the solution.
For Shivji, what solidarity comes down to is broader than that – a mindset shift that considers aid in a completely different way, building on the assets and skills affected people already possess: “They’re not sitting there waiting for us to help them.”
Edited by Andrew Gully.