People with disabilities, older people and indigenous communities are often excluded from disaster risk reduction strategies on preventing and responding to emergencies such as earthquakes and tsunamis. But by making some small adjustments—like adding subtitles or using contrasting colors on signage and informational materials—we can ensure no one is left behind when disaster strikes.
Kipu Llaxta, an organization in Peru that works to advance the inclusion of people with disabilities, is working with Humanity & Inclusion to improve a national disaster risk reduction campaign. Among the simple measures it recommends are:
- Include the organizations run by and for people with disabilities and their representatives in disseminating information through their networks
- Translate awareness-raising videos into sign language and add subtitles
- Increase the size of text on posters and fliers
- Use contrasting colors to enhance the legibility of information
- Use multiple formats: visual, audio, text and illustrations
- Disseminate communication campaigns on national media to reach the whole population
As a result of these recommendations, families and people with disabilities were noticeably more likely to take part in disaster risk reduction actions.
Bringing about lasting change
Psychologist Giovanna Osorio Romero, the chair and co-founder of Kipu Llaxta, has a physical disability caused by a rare disease.
“Kipu Llaxta decided to address the issue of disaster risk management in Peru to make it more inclusive," she explains. "With support from Humanity & Inclusion, we have trained ourselves in risk management and gained expertise."
"By making simple adjustments, Peru's 2021 communication campaign was much more accessible, and people were better able to understand prevention messages," Romero adds. "This proves that inclusion benefits society as a whole and not just a small group of people. We are working hard to bring about lasting change and to challenge stereotypes.”
Prevention measures and disaster response must take into account the specific needs of populations disproportionately affected by emergencies: people with disabilities, aging people, women, children. Humanity & Inclusion supports organizations run by and for people with disabilities—like Kipu Llaxta—to uplift their voices and ensure inclusive humanitarian action. The organization will draw attention to this commitment at the 2022 Global Disability Summit in February.
For more than 30 years, Giovanna Osorio Romero has worked tirelessly to build a more inclusive society and change how people see disability in Peru. Below, she shares insight about her work and her organization's partnership with Humanity & Inclusion:
My name is Giovanna Osorio Romero. I am 41 years old, and I’m a psychologist. I have a physical disability caused by a rare disease. I have campaigned for a more inclusive society for over 30 years. My parents always knew they had to help me become a strong person who could defend herself and make her own decisions. But as soon as I left the house, there were obstacles in my path. Even as a young girl, I realized that, as someone with disabilities, people look at you in a different way.
I became a psychologist because I realized society needs health professionals who are trained in inclusion. Health professionals often take a discriminatory view of people with disabilities, and I want to change that. When a parent of a child with disabilities sees a doctor, the doctor makes a list of what their child cannot do because of their disability rather than recognize what they can do.
We need to teach children with disabilities not to define themselves by how society sees them and help them recognize and remove obstacles, and become self-reliant.
This desire for change was the driving force behind the founding of Kipu Llaxta in 2016. This non-profit organization, of which I am the chair and cofounder, works to advance the inclusion and development of people with disabilities.
Inclusion is something you experience and apply every day. It’s less about one-off actions than achieving lasting change.
Before people adopt an inclusive approach, they need to understand that inclusion is not confined to a small group of people: it allows us all to live together in a meaningful way. How many of us use an elevator, for example? We all benefit from measures to improve access.
Inclusive risk reduction
In 2018, when we were asked to be part of an inclusive disaster risk management subgroup in Peru, many disabled people’s organizations questioned its importance and didn’t see it as a priority.
This is because they didn’t understand the challenge, and this made us vulnerable. This is why Kipu Llaxta decided to address the issue. With support from Humanity & Inclusion, we have trained ourselves in risk management and gained expertise.
The working group is composed of private and public bodies who meet to discuss ways to make risk management more inclusive through public policies, posters, communication campaigns and appropriate evacuation plans. It is especially important to use visual, audio, text and illustrated messages to get information across. Inclusion is not just about taking into account people with disabilities; it should also include other groups, like older people or indigenous communities.
As a result of our work, inclusion and diversity challenges have been incorporated into training courses for community safety officers. These officers are volunteers who work to prevent risks and assist disaster-affected communities. They identify evacuation routes, map at-risk areas and so on. The new intake of community safety officers includes women, men, young people, older people and me—the first community safety officer with a disability in Peru.
People used to think that safety officers needed a certain build. They thought older people, young people and people with disabilities were incapable of doing the job. But the most active safety officer today is a 76-year-old woman who says this role has given her life new meaning.
Our new intake of inclusive safety officers is challenging stereotypes.
Our work with HI
It is not always easy for people with disabilities in Peru to be part of the decision-making process. We’re often simply asked to support decisions that have been made already. Some bodies are prejudiced and want to teach us things we already know, because they assume we are not aware of them.
In contrast, Humanity & Inclusion knows all about teamwork. It is an organization that listens and makes the most of the expertise of people with disabilities and the contribution they make. What I like most is our horizontal collaboration with Humanity & Inclusion. This collaboration allows us to learn and teach at the same time.
Building a sustainable society
My goal is to build a society where we no longer need bodies or organizations like Kipu Llaxta. For us, it is crucial to look at the big picture: when you give someone a wheelchair, you help them, but it’s a one-off action; when you change rules and laws, you help them and the people who come after them.
It’s about making sustainable improvements, not providing one-off benefits. We don’t live forever, and our work must continue to have an impact when we’re no longer there.
One billion persons have a disability worldwide, but meaningful inclusion remains a challenge.
In this Q&A, Ruby Holmes, an inclusive governance global specialist for Humanity & Inclusion, expands on the organization’s commitments ahead of the Global Disability Summit, which will be held virtually Feb. 15-17.
What is the Global Disability Summit?
The Global Disability Summit (GDS) is the second summit of its kind. The first one brought stakeholders from different governments, civil society organizations, the UN and organizations of persons with disabilities (OPDs) together in 2018, to discuss disability inclusion and inclusive development.
Disability inclusion is a key topic: about 1 billion persons, that is 15% of the global population, have a disability – and this is only an estimate due to lacking global disability data. Persons with disabilities are the largest minority group in the world.
Because of a lack of awareness amongst governments and service providers, persons with disabilities face many barriers, such as accessibility factors. However, one of the main barriers is attitudinal, as they face a lot of stigma and discrimination. One of the major challenges today is awareness raising, to show that persons with disabilities have equal rights and must have access to services just like everybody else.
Why is the GDS a key moment for inclusion and disability rights?
The GDS is important because of the momentum that the disability rights movement is gaining globally. We really want to keep those conversations, those partnerships going. It is also extremely important to hold stakeholders accountable to implement their commitments and ensure they are including persons with disabilities and OPDs in all of their programs, policies and initiatives.
A report by the Stakeholder Group of Persons with Disabilities found that between 2014 and 2018, less than 2% of international aid was disability relevant. So international stakeholders must really continue to support funding, providing more direct support to OPDs and pay them for their expertise.
What are HI’s commitments for the GDS?
Inclusive health, inclusive education and inclusive humanitarian action are part of the topics and themes that were produced by the Summit Secretariat. They are also pillars to Humanity & Inclusion's work and interventions.
In inclusive education, Humanity & Inclusion commits to working with local education actors to train teachers to include students with disabilities. The work will include a focus on supporting children and young people with a range of diverse and complex needs, such as intellectual disabilities, communication impairments and psychosocial disabilities. Humanity & Inclusion commits to developing a guidebook and toolkits within the next two years, to developing research on the itinerant teacher and support mechanism model, and to applying these innovations in at least five new flagship projects over the next two years. Amongst other actions, Humanity & Inclusion also commits to advocating for financing efforts, to strengthen inclusive education systems and increase investments, in international platforms and networks.
For the health sector, Humanity & Inclusion is focusing on sexual and reproductive health and rights (SRHR). Among other items, the organization is committing to develop at least four new inclusive SRHR projects over the next four years, through meaningful participation of organizations of persons with disabilities. In addition, through continued and renewed advocacy with key partners, Humanity & Inclusion commits to influence at least four policies, strategic planning or budgeting processes in the U.S., Canada, United Kingdom and European Union in the next 4 years.
Inclusive humanitarian assistance
Persons with disabilities are routinely ignored during disaster preparedness and often left behind when disaster strikes. More climate-induced disasters will increase the vulnerability of persons with disabilities. To fight against that, Humanity & Inclusion is committing to support persons with disabilities to meaningfully participate in humanitarian responses. By the end of 2025, the organization will develop, pilot and share two sets of tools for field professionals and three lessons learned from case studies.
Humanity & Inclusion has also created a commitment on meaningful engagement and sustained partnerships with OPDs across all of its projects. Throughout livelihood and education initiatives, Humanity & Inclusion will implement capacity building on advocacy and inclusive policies in five countries by the end of 2026. The organization has also made a commitment on acknowledging disability, gender and age as cross cutting components and critical vulnerability factors for populations affected by sudden onset or long-term crisis or poverty. Recognizing the diversity of the disability community, Humanity & Inclusion is committing to implement its disability, gender and age framework within all its projects by the end of 2023, to ensure that further marginalized groups, such as persons with psychosocial and intellectual disabilities, receive equal opportunities and representation in all initiatives.
The meaningful participation and inclusion of persons with disabilities is also key in many other topics, such as climate action and disaster risk reduction. Humanity & Inclusion attended COP—a global climate change summit—in Glasgow in 2021 and disability inclusion was not at all on people’s radar.
What outcomes is HI expecting of the GDS?
We need to increase the scale and ensure that disability inclusion is meaningful, not just a tick mark. Humanity & Inclusion is definitely advocating for more funding on inclusion projects. The organization also wants stakeholders to be intentional about disability inclusion from the very beginning and include OPDs in the design of their projects.
Humanity & Inclusion is expecting more dedication from States, UN entities and donors to support inclusive actions. Commitments are not legally binding agreements and there was a lack of response from some stakeholders at the last summit. For this summit, there has to be more pressure, more follow-up. Commitments have to be much more time-bound and practical, so that they are more likely to be achieved.
What added value can HI bring?
The GDS is very aligned to Humanity & Inclusion’s work and mission. For 40 years, Humanity & Inclusion has worked alongside persons with disabilities and populations living in situations of extreme hardship, in order to respond to their essential needs, improve their living conditions, promote and respect their dignity and fundamental rights. Humanity & Inclusion is also unique in that it is working in situations of poverty and exclusion, but also conflicts and disasters. The organization’s actions encompass the thematic pillars of the summit, focusing on more development context through education and health but also working in many situations focused on humanitarian action.
Furthermore, through its disability, gender and age policy, Humanity & Inclusion is taking more of an intersectional approach to inclusion. This approach is gaining a lot of traction globally: it is an important time and momentum to look at the various identities of a person and the role they play in their everyday lives.
Why is it important to support OPDs?
Obviously, we have to stay true to the disability rights motto: nothing about us without us. How could we work on disability rights without including persons with disabilities? They are the experts of their own needs, the barriers they face and accessibility. They must play a central role in ensuring that their human rights are translated into concrete measures that improve their lives.
OPDs are a way for persons with disabilities to come together and have a united voice. That uniform voice and collective movement has really played a huge role in the traction that the disability movement has had globally.
Humanity & Inclusion has historically always partnered with local organizations, to promote their meaningful participation, equal access to opportunities and resources as well as accessibility of the environment.
For instance, Humanity & Inclusion’s teams are working in Iraq with the Iraqi Alliance of Disability (IADO). In 2019, Humanity & Inclusion supported IADO in a joint publication on a shadow report on the Convention on the Rights of Persons with Disabilities (CRPD), which helped the UN committee learn more of a civil society perspective. It led to 69 recommendations to the Iraqi government, which actually encouraged the Prime Minister to sign a decree to reserve a certain percentage of jobs for persons with disabilities.
What is HI doing to support OPDs?
Humanity & Inclusion has been supporting the implementation of the CRPD in 59 countries and currently has about 35 country projects across 25 countries, where it is working with OPDs. Humanity & Inclusion is supporting OPDs through small grants, capacity building (workshops and trainings on creating an advocacy action plan, for instance), partnership building and elevated advocacy efforts, from the local to the regional, national and international levels.
Humanity & Inclusion’s main goal is to work at the local, very grassroots level, and then support those efforts to reach the national and international level, to create networks and spark constructive dialogues. For instance, Humanity & Inclusion has a regional capacity-building program in 15 countries in West Africa. The lead OPD partner is the Western Association of the Federation of Persons with Disabilities, who is in turn supporting smaller federations of OPDs.
In most contexts, Humanity & Inclusion does not need to play the advocacy role, as the organization is only acting as a support and not replacing OPDs.
Ruby Holmes is an inclusive governance global specialist. She has been working at HI for over 3 years and represents the organization in a number of international consortiums. She is working alongside HI teams to help them support civil society and organizations of persons with disabilities, through training materials, capacity-building workshops, advocacy events, etc. She is making sure HI is partnering with local organizations and that they're being engaged in a very meaningful way.
The Global Disability Summit will be held virtually Feb. 15-17, 2022, to advance the rights of people with disabilities. Humanity & Inclusion is calling on States to commit to a more inclusive world.
Drawing on its experience in the field, in collaboration with organizations of persons with disabilities, Humanity & Inclusion will work to achieve progress on three core issues at the summit: inclusive education, inclusive health and inclusive humanitarian assistance. The organization is formally calling on States to attend and take the necessary steps toward a more inclusive future.
A call to action
The 2022 Global Disability Summit is critical to advancing the rights of people with disabilities and helping ensure they live with dignity. In the wake of the first summit in 2018, 171 international actors committed to advancing the inclusion of people with disabilities in all areas of society.
This issue will remain central to the 2022 summit. It is vitally important for States, international agencies, funding bodies and civil society organizations to attend the gathering in large numbers and make commitments that are both ambitious and practical.
Humanity & Inclusion is launching an urgent appeal to all international actors to seize this opportunity and attend the summit. The commitments made must address core inclusion issues in collaboration with organizations run by and for people with disabilities, and be supported by funding to ensure they are implemented in full.
Three core commitments
Humanity & Inclusion is committed to making progress on three key disability rights issues at the 2022 Global Disability Summit. The organization also advocates taking into account the intersections of gender and age with disability rights.
More than 32 million children with disabilities worldwide are deprived of an education—which means one-third of all children are not enrolled in school, according to a 2016 report published by the Education Commission. Humanity & Inclusion operates 48 education projects in 26 countries, collaborating with local partners to ensure the specific needs of all children, including those with disabilities, are taken into account. In 2020, Humanity & Inclusion helped 365,000 children go to school.
Humanity & Inclusion will urge national and international actors to commit to promoting access to school for girls, making education systems more inclusive and increasing funding for inclusive education policies.
Humanity & Inclusion advocates the implementation of Article 25 of the Convention on the Rights of Persons with Disabilities, which recognizes their right to the enjoyment of the highest attainable standard of health. The organization works to implement inclusive health policies, train health staff and ensure equal access to care. To achieve this, Humanity & Inclusion works alongside with people with disabilities and their organizations to uplift their voices and support their involvement in decision-making.
The organization is committed to working alongside people with disabilities and the organizations that represent them, with an emphasis on women and young people with disabilities. Humanity & Inclusion works to facilitate access to quality information and services in the field of sexual and reproductive health and to advance rights in these areas.
Inclusive humanitarian assistance
Humanity & Inclusion helps international humanitarian actors—NGOs, funding bodies and international agencies—across 20 countries to develop a more inclusive approach. To achieve this, Humanity & Inclusion works alongside organizations run by and for people with disabilities to implement humanitarian projects and programs—such as interventions related to natural disasters—that take into account the specific needs of people with disabilities. The organization works with the Global Protection Cluster—a network of NGOs and international organizations engaged in protection work in humanitarian crises—and its partners to facilitate inclusive action through a global approach that includes age, gender and disability in adopted strategies.
Humanity & Inclusion is committed to helping implement the guidelines issued by the Inter-Agency Standing Committee, an inter-agency forum of UN and non-UN humanitarian partners founded to strengthen humanitarian assistance, including by giving people with disabilities and their representative organizations a voice and a role in humanitarian action. The organization plans to undertake promotion actions, gather good practices, and share tools and data on inclusive action while empowering international actors on this issue.
Humanity & Inclusion’s expertise
For more than 40 years, Humanity & Inclusion has worked to advance the rights of people with disabilities and to help them live with dignity. Across nearly 60 countries, the organization helps people with disabilities and their representative organizations participate in public debates to meaningfully shape strategies designed to meet their specific needs.
Drawing on its experience and expertise built up over many years, Humanity & Inclusion is committed to advancing the rights of people with disabilities at the 2022 Global Disability Summit. A delegation from Humanity & Inclusion will attend the summit, which will be held virtually.
To mark World Cerebral Palsy Day on October 6, Humanity & Inclusion highlights the importance of providing care and treatment to children born with this life-long condition.
Cerebral palsy is the most common motor disorder encountered by rehabilitation teams in the countries where Humanity & Inclusion works. Assisting children with cerebral palsy is therefore a major priority for the organization.
Seventeen million people worldwide live with cerebral palsy. It is the most common cause of motor disorder in children. Globally, people with cerebral palsy are still subject to discrimination.
Cerebral palsy is a group of lifelong conditions that affect movement and coordination. It's caused by a problem with the brain that develops before, during or soon after birth. It is sometimes associated with severe cognitive and sensory difficulties. It can also make it challenging to communicate with a child, to calm them and take care of them, which sometimes leads to rejection.
However, depending on the severity, if cerebral palsy is detected early, the parents are provided with information and the child receives immediate rehabilitation care, the likelihood of further complications can be reduced. The correct treatment can quickly transform the life of both the child and their family, and increase their chances of being able to walk, go to school, work and live a fulfilling life.
Humanity & Inclusion takes an intersectional approach to healthcare and physical and functional rehabilitation, while working as closely as possible with the family in order to provide them with the best possible care and treatment.
First step: early detection
Children born with cerebral palsy in the low- and middle-income countries where Humanity & inclusion works are often at-risk of discrimination and exclusion.
“Cerebral palsy is caused by an accident during pregnancy or during or just after birth. Symptoms depend on which part of the brain is affected, and they change over time. If a baby does not receive treatment, they will develop problems with muscle tone and will not be able to coordinate their movements. The faster it is correctly treated, the less brain damage the child will experience,” explains Uta Prehl, Humanity & Inclusion’s West Africa rehabilitation specialist.
“Unfortunately, in the countries where we work, care staff are often not trained to detect this condition early on,” Prehl continues. “Midwives need to know how to test the reflexes of newborns, for example. These tests need to be done every three months to check if the child is affected. This is why Humanity & Inclusion trains medical staff in the early detection of the cerebral palsy whenever possible. Care staff need to make a diagnosis and parents should be provided with information and guidance on visiting a health center with their baby without delay.”
Raising awareness of parents
Many families never visit a health or rehabilitation center or go when it’s too late. Sometimes parents are unable to take leave from work or to pay for transportation to health centers. Others feel ashamed and frightened their children will be seen as different. In some countries, children with cerebral palsy are hidden away or ostracized.
Humanity & Inclusion runs family education activities to raise the awareness of parents and their communities to help people learn more about cerebral palsy and the possibilities that treatment can open up for a young child. Parents also learn about the significant role they play in helping their child at health centers and in their future care.
Rehabilitation is essential
Most of a child’s early learning and brain development happens before the age of 5. Early detection of cerebral palsy is essential to providing an immediate rehabilitation response, in addition to mobility aids and other supports. These are included in the services provided to children with cerebral palsy by Humanity & Inclusion’s rehabilitation teams or its partners. Mobility aids and other supports must be personalized, and children need to learn how to use them with help from their parents.
“With our partners, we work in direct and close contact with families, often the mothers, to ensure rehabilitation care produces the right results,” Prehl explains. “We need to provide equipment or devices adapted to the child, like mobility aids, and adapted chairs and tables, which are made to measure to give the child proper posture support.
“We make the diagnosis and decide on treatment and orthopedic fitting using the international Global Motor Function Classification Scale, which means we can work in a way adapted to each child, based on a precise evaluation. The next step—exercises to learn how to use posture and mobility aids—depends a lot on the relationship between the mother and child, and how motivated they are.”
Many people with cerebral palsy live long and fulfilling lives with support from Humanity & Inclusion and other organizations around the world. But too many people are still left behind. Humanity & Inclusion will continue its efforts to ensure young children with cerebral palsy are able to access the immediate care they need and to increase their chances of enjoying the same rights and opportunities as everyone else.
Through an inclusive education project in Nepal, Rabina finally has the chance to learn alongside other students.
Rabina, 19, was born with cerebral palsy. As a girl with disabilities from a low-income family, she was unable to go to school. Her parents were unaware children with disabilities could access education. Disability is stigmatized in communities like hers, where there are no inclusive schools. As a result, Rabina lacked both mobility and education for years.
That’s changing since she met a community officer working with the Empowering a New Generation of Adolescent Girls with Education (ENGAGE) project, managed by Humanity & Inclusion and Voluntary Service Overseas along with local partners in Nepal. The project seeks to empower more than 2,000 girls who are not enrolled in school—including those with disabilities—through education across three districts in Nepal’s Terai region. It is supported by UK Aid’s Girls Education Challenge Fund.
“I think that many people with disabilities in our community are still deprived of their rights and the support they need to gain their independence,” Rabina explains. “They need to be involved in projects like ENGAGE, which can be life-changing for them.”
Rabina’s opportunity to learn
In a medical camp organized by the ENGAGE, teams assessed Rabina’s needs and provided her with a wheelchair and toilet chair along with training in how to use them correctly. Soon, she will receive another, custom-made wheelchair that will help her move around even more easily.
A community officer also paid regular visits to her home to meet with her family. After a series of discussions and counseling, Rabina’s parents agreed to let Rabina join an intermediate class to prepare her to attend school. ENGAGE supplied her with the necessary learning materials.
“Thanks for supporting me with a wheelchair and a toilet chair; they really made a difference to my life,” Rabina says. “Thank you for providing counseling to my parents. They started to see me as their daughter with a future and have helped me learn.”
Rabina has completed her intermediate class, learning basic literacy skills and developing a strong interest in drawing and art. She is gaining self-confidence and wants to go to school to take her learning a step further. She will soon join a classroom where children with and without disabilities learn and play together.
“Rabina’s life has changed a lot since she joined the ENGAGE project,” explains Suman Buda, a community officer who works with Rabina. “She had never been to school and was totally illiterate. Now I feel very happy for her because she can read her lessons and write.”
Rabina’s parents are pleased with the progress she has made in her studies, and they are participating in a training program to learn how to better support their daughter. Now, they see her as a woman with ambitious plans for the future. Rabina’s neighbors are more welcoming, too, inviting her to social activities and rituals. This means Rabina is more involved in her local community, and she feels more confident than ever.
Léa Bayekula, a Belgian athlete specializing in track and field, hopes to use her position as a Humanity & Inclusion ambassador to raise awareness about inclusion for people with disabilities.
As a child, Léa knew nothing about adapted sports and had never seen athletes with disabilities in the spotlight. In June, she competed in the World Para Athletics European Championship in Bydgoszcz, Poland, and brought home a bronze medal in the 100-meter dash.
"This sport has had an impact on who I am today,” Léa says. “Before, I didn't know anything about sports. When I was little, I wasn't introduced to para-sports, so I didn't know that they existed. I learned about them when I was 15 years old. I started with basketball, and then I discovered track and field during a special day that my league had organized. I had played three years of wheelchair basketball, and I really liked it. I was the only girl. 2013 is when I first began pursuing track and field, and then I began competing at a high level in 2016. I started with the 100 meters, then the 200 meters, and then 400 meters came not long afterwards. I always enjoyed the competitive aspect the most, and today I find myself in competitions and I love it.
"In the middle of a race, it's all about the adrenaline—I feel great. It can vary depending on the competition. Sometimes I get a little stressed, but that's normal. It's a positive stress. There is this feeling of freedom—feeling free and being able to express yourself on the track. It's different from everyday life.
On being an HI ambassador:
Léa: I consider it a victory to be able to represent HI. I think anyone with disabilities is trying to make a difference in this society, and having someone who speaks out for people with disabilities is important. I have trainers and physical therapists and a coach. I have a whole team behind me that help me to progress and move forward. I have the chance to have free braces, while there are people and children who do not have the opportunity to have braces, a wheelchair or a walker. That is what drew me to HI. I think that together we can change the way people look at things, and we can change reality a little bit.
On the importance of visibility:
Léa: It's important to give visibility to athletes with disabilities because we also have our place. Whether we have a disability or not, we all have a place in society, and we shouldn’t set anyone aside because they are different. Sure, we are all different, but we are all human beings. My objective and my role as an HI Ambassador is to give even more visibility to the world of disabilities. Today, almost nothing is adapted, and that already makes things difficult. Some things are starting to be, but it's not so simple. It really is my goal to bring visibility to all of these issues.
Visibility can change people’s mindsets, because many are closed-minded when it comes to disability. Whether that be in the media, or in life, we need to change the gaze, that look of pity.
On setting an example:
Léa: I think that everyone chooses an example of someone who resembles them. For me, my example was Cynthia Bolingo. She is a high-level Belgian athlete in track and field, and she was the first person I knew in the sport. I didn't know that you could do adapted track and field, so for me Cynthia Bolingo was my main example of an Olympic athlete, and she is an example for me still. If there is someone who is not doing well, and I can serve as an example for them to regain their strength, that would make me very happy.
But each person works differently. We can find fulfillment in all areas of life, not only in sports. Personally, I think you can find pleasure in anything, so we must continue to keep the joy of living and simply do things we love.
Kotime and her mother are the definition of resilient. They have braved disability, war, exodus and rejection by their family to fight for a better life.
When Kotime was 9, she suddenly lost the use of her legs. At the same time, her family was forced to flee their home to escape violence. Kotime and her family have received support from Humanity & Inclusion’s teams in Burkina Faso.
Before her village in the Sahel became the target of increasingly frequent jihadist attacks, Kotime's family enjoyed a peaceful life. Then, in 2019, fate took a turn for the worse. Just as Kotime's condition suddenly deteriorated, the village came under renewed attack. Only weeks before her family fled and took refuge in the north central region of Burkina Faso, she found herself unable to walk.
Mariam, Kotime's mother, has fought for her daughter against all the odds.
“I stayed in the hospital for about three months while my daughter was being treated,” Mariam recalls. “My in-laws were threatening to disown me because I’d left my home to treat a child who might never walk again. They also said Kotime was not my only child. So, I had to bring her back again. Then one night, armed groups entered our village, killed people, and stole our animals, so we had to leave. It was extremely hard for me because I was pregnant, and I fled with Kotime and her sister in my arms."
In seeking safety, the family now faces new challenges.
“When we got here, to feed ourselves, we sold all the animals we had left,” Mariam explains. “We've been here for a long time. My husband doesn’t work. Now and again, I collect sand to sell, or I go to town to wash clothes to feed my children and buy soap. Sometimes we get help from the government and NGOs. That's how I met the Humanity & Inclusion team, at a disability awareness event. They spotted Kotime. I’d just given birth. I was carrying my baby on my back and Kotime in my arms. I would take her to places of worship and pray, hoping she might walk again.”
Kotime, 11, has never been to school.
“Kotime has never attended classes. When my daughter was 7 years old, the age children start school, the schools in our village were already closed because it wasn’t safe. Two years later, she fell ill, and her lower limbs were paralyzed," Mariam explains.
Working alongside Kotime and her family
Humanity & Inclusion’s Inclusive Humanitarian Action project team has supported Kotime and her mother in helping their family understand Kotime’s disability and the importance of rehabilitation.
“To start with, HI’s awareness-raising officer came to talk to us to learn more about Kotime's situation. She referred us to the functional rehabilitation center, but my in-laws were against the idea,” Mariam says. “HI did everything they could to convince them and offered to mediate between us. The officer came back to meet my husband’s brothers, but my father-in-law wasn’t there. When he heard the news, he set his mind firmly against it. It took more meetings with my family and a visit from the director of the rehabilitation center and a religious figure to convince my in-laws! But today everything has changed, at last!”
Kotime couldn’t wait to start her twice-weekly rehabilitation sessions. Humanity & Inclusion also equipped her with a wheelchair, walking frame and leg braces. Now, she can join in everyday family activities again and can even take a few steps on her own. Mariam no longer has to carry Kotime from place to place and is able to spend more time with her other children.
"The wheelchair’s changed Kotime's life - and mine too! It means I can take her everywhere without feeling worn out, and thanks to her rehabilitation sessions Kotime has begun to walk again, although she can’t go far. Life is returning to normal,” Mariam says. “She can help me with the dishes, and best of all she can go out and play with her friends again. They bring her home after they’ve finished playing. I’m really proud of her!”
This testimony was collected by Pascaline Nongbzanga Tapsoba, who is responsible for Humanity & Inclusion’s community campaigning and inclusion work in Burkina Faso.
Header image: Kotime and her mother, Mariam, fist bump each other. Copyright: Olivier Czar Katona/HI
Inline image: Kotime plays with other children from her community. Copyright: Olivier Czar Katona/HI
Humanity & Inclusion welcomes the Resolution on the Highest Attainable Standard of Health for Persons with Disabilities, recently adopted by the World Health Assembly. These commitments should not remain only on paper.
Persons with disabilities often encounter significant barriers to accessing health information and services, including physical, communication, attitudinal and financial barriers. Persons with disabilities are two times more likely to find health care providers’ skills and facilities inadequate, three times more likely to be denied health care, and four times more likely to be treated poorly in health care facilities.
While the general health needs of persons with disabilities are the same as everyone else and can often be met by primary healthcare services, they may also have additional specific health needs, including access to rehabilitation and assistive devices such as wheelchairs, artificial limbs and visual supports. Despite greater needs, 50% of persons with disabilities cannot afford healthcare, facing a 50% higher risk, compared to persons without disabilities, of facing catastrophic healthcare costs.
During the Covid-19 pandemic, persons with disabilities were significantly affected by the disruption of health services, and experienced greater difficulties in getting information on and implementing preventive measures such as accessing clean water and sinks and practicing social distancing. In addition, they might have been disqualified from receiving care due to the prioritization of treating Covid-19 patients.
In Jordan, 88% of those who responded to a survey conducted by Humanity & Inclusion in 2020 reported that they could not go to the hospital for their regular checks or additional medical needs.
WHA adopts crucial resolution
Recognizing the huge unmet health needs and the persistent exclusion of persons with disabilities from health care information and services, the resolution recently adopted by the World Health Assembly builds on the Convention on the Rights of Persons with Disabilities and reaffirms the right of persons with disabilities to enjoy the highest attainable standard of health, with no discrimination and on the basis of free and informed consent.
Organizations of persons with disabilities and other civil society organizations were consulted during the drafting process and provided critical input to the resolution. Humanity & Inclusion’s contribution was provided through the International Disability & Development Consortium and in partnership with the International Disability Alliance.
The resolution provides a set of important commitments for Member States to move toward more disability-inclusive health systems, including:
- consulting with, and actively involving persons with disabilities and their representative organizations, in decision making and designing programs;
- identifying and eliminating attitudinal, environmental and institutional obstacles and barriers that prevent persons with disabilities from accessing health;
- collecting health-related data, disaggregated by disability, age and sex, education level and household income to inform relevant policies and programs;
- developing and implementing policies and programs to improve access to rehabilitation, as well as affordable and quality assistive technology within universal health and/or social services coverage and to ensure their sustainability.
The resolution requests the World Health Organization (WHO) to produce, in close consultation with Member States and relevant stakeholders, a global report on the highest attainable standard of health for persons with disabilities by the end of 2022. WHO is also called to ensure the implementation of the United Nations Disability Inclusion Strategy, and the creation of an inclusive global research agenda.
Translating political commitment to action
As an organization with extensive experience in disability inclusion in health as well as in rehabilitation, Humanity & Inclusion believes this resolution can help make significant steps in both fields. However, Humanity & Inclusion recognizes that rehabilitation is an essential health strategy not only for some persons with disabilities, but also for many other people who experience limitations in their everyday functioning. Therefore, while Humanity & Inclusion welcomes the integration of rehabilitation in this resolution, the organization also highlights that the need for rehabilitation is bigger—estimated at 2.4 billion people globally—and requires additional, specific political commitment to ensure that health systems integrate rehabilitation and make it accessible to everyone in need.
The resolution comes at a crucial time, as the WHO global disability action plan expires and when Covid-19 has exacerbated existing inequities in accessing and receiving health care.
As the WHO, Member States and community organizations are paying efforts to “build back better,” they should look into building back more inclusively. This resolution provides a solid roadmap to advance in this direction, but it will remain an empty text if it is not followed by concrete and immediate actions.
Humanity & Inclusion is marking World Clubfoot Day on June 3 by highlighting the importance of early treatment. Providing care for clubfoot in the weeks immediately after a child’s birth can prevent them from growing up with a disability.
Clubfoot is the malformation of one or both feet and is visible at birth. If left untreated the foot never regains its normal position, with serious consequences for the child. They can never wear shoes, risk injury, and find it difficult to walk, especially over long distances. Because the child cannot take part in activities with other children, they also risk being excluded and stigmatized.
“We can prevent this bleak outcome," says Uta Prehl, one of Humanity & Inclusion’s rehabilitation specialists. “But we must detect this malformation as soon as possible after birth. It’s one of the keys to successful treatment. The child can then be treated effectively, and the malformation corrected, and within months they can walk normally. Social workers also play an important role in the care cycle by working with parents to ensure they continue the treatment. If children are not followed up correctly and regularly, the malformation may not be properly corrected. So, it’s crucial to give caregivers as much information as possible.”
Treatment involves placing a cast—which is replaced every week for six weeks—on the child’s leg to steadily correct the foot. The tendons are sometimes operated on before the final cast. Humanity & Inclusion’s partner organizations then fit the child with an orthopedic brace made of a bar connecting two small shoes, which is worn for the first four months and regularly adjusted to appropriately correct the malformation. The child’s feet are checked until they are able to walk, and an X-ray is performed to check healing. The brace and shoes are normally removed between the ages of 3 and 4. The child continues to attend regularly follow-up consultations until they stop growing to prevent the malformation from returning.
For several years, Humanity & Inclusion has trained physical therapists in a number of countries to promote the early detection and appropriate care management of clubfoot. Teams continue to run these projects today, particularly in Burkina Faso and Sri Lanka, so children born with these malformations grow up without disabilities.