Special Edition dedicated to young People with Disabilities
When COVID-19 began to emerge in late 2019, few people believed that it would get to this point. Now nearly 7 months into this pandemic, we are facing new and increasingly changing realities. For many countries, even though lockdown orders are easing away, restrictions and rules still remain to ensure communal safety, including limited access to public spaces and services and limits on gatherings, social or otherwise.
For most of us, these rules and restrictions have been inconvenient to varying degrees, and have affected our mental and physical health but for people with disabilities these limitations present a different set of challenges.There are 1 billion persons with disabilities worldwide, and, across the board, they have had to adapt to live in society and fight to advocate for inclusion.
When the pandemic hit, however, it became apparent that no real changes have been made to be truly inclusive. The pandemic has underscored the deep and existing inequalities in access to, health care, education, employment and economic opportunities and this is further compounded by the gap in access to technology. In addition to, people with disabilities being at high risk of contracting the disease, hospital care protocols, crisis responses and reopening plans across the globe have not been developed with consultation and inclusion of people with disabilities. This makes it impossible for many people with disabilities to be part of the post COVID-19 lockdown rebuilding process. It creates further anxiety and stress over an already uncertain future.
Despite these roadblocks, however, people with disabilities across the globe have shown incredible innovation and resilience, taking it upon themselves to continue advocating for inclusion and disability inclusive responses to the pandemic. People with disabilities are making sure to provide services and support to their communities as well. As asserted by United Nations Secretary-General Antonio Guterres, ensuring accessibility is fundamental to a disability-inclusive COVID-19 response and recovery and falls in line with the 2030 Agenda. Through donations of PPE, awareness campaigns, podcasts, volunteer work, advocacy, compassion and more, young people with disabilities all over the world are pushing through this difficult time to ensure the safety of those around them and work towards better, more inclusive and accessible future for all.
Young people with disabilities are making change happen, and it is inspiring to see! That is why, for this week’s blog, I would like to highlight the work of 10 young people with disabilities who have been fighting COVID-19 in their communities.
1.Racheal Inegbedion (Nigeria)
Offering adaptive education options
Due to the circumstances of this global pandemic, students with disabilities in many developing countries have been deprived of therapeutic and educational resources, especially in comparison with their peers without disabilities, who can access remote learning and adapt to several learning opportunities during this period. “Inclusive education is a core part of UNESCO’s 4th Sustainable development goal and 2030 education agenda”, explains Racheal Inegbedion, the Founder of the Initiative for National Growth Africa. “Today, Africa estimates a total of over 85 million persons with disabilities. A current study across developing countries cited the prevalence of developmental disability varied from 0.4% to 12.17% and 20.4% screened for development impairment amongst other physical, sensory and intellectual disability. This constitutes a huge developmental digress for children and young adults with intellectual disability in my community — Nigeria”. During the early days of the global COVID-19 outbreak, Racheal Inegbedion and her team decided to organize a community project to offer adaptive learning opportunities for young adults with Down Syndrome, based on their learning styles. In collaboration several down syndrome and development organizations, Racheal led the creation of the Stem, Robotics and I workshop, which combined technology and special needs education in order to provide these young people with the opportunity to enhance their communication skills while learning about robotics, physics and electricity. The workshop was positively received, but Racheal believes that the world can and should increase their efforts. “Now it is obvious that we need to do more in terms of providing students with disabilities with the right learning alternatives”, she says.
2.Zhang Chaofan (China)
Beating the odds and paying it forward
Zhang Chaofan, 28, was born without a left arm, but this did not phase her. After coming in first in national school rankings, Zhang Chaofan was admitted to the Beijing Technology and Business University. During the summer vacation following her second year of university, she taught in poverty-stricken mountainous areas, and this experience helped inspire her to start a business in education. After graduation, she returned to her hometown in Jilin Province and, within the next 5 years, she founded Chaofan Education Group and Chaofan Public Welfare Dream Grant. Every year, the Chaofan Public Welfare Dream grant provides 300,000 yuans worth of dream grants to help students from low-income families learn painting and take art examinations, and, in the past eight years, Zhang Chaofan has given over 700 motivational speeches in colleges and impoverished mountainous areas and donated 1.28 million yuan to help over 320 children with various disabilities learn traditional Chinese culture for free. During the COVID-19 pandemic, the Chaofan Public Welfare Dream Foundation collected 4 million yuan’s worth of medical materials such as surgical masks, protective clothing, medical alcohol, gloves and shoe covers, and sent them to the frontline of the fight against the pandemic in Wuhan. At the peak of their collection campaign, Zhang Chaofan started work at 6 a.m. every day and did not rest before 2:00 p.m. During days like these, she said that she would look at the stars in the night sky for peace, as she knew that “after the night [was] the dawn, and life will always treat those who work hard”.
3.Besfort Golaj (Kosovo)
Giving time to support his community
The coronavirus pandemic has inspired many people to action. When Kosovo began its COVID-19 lockdown, Besfort Golaj, a 25-year-old young man with a disability from the city of Gjakova, decided to support his municipality by volunteering to answer the city’s emergency line full-time, in addition to managing his other volunteer roles with the YMCA and UNICEF. Besfort started his civic service in 2017 when he and his friends applied to UNICEF’s UPSHIFT project, where they were empowered to start a social enterprise making wooden handcrafts. Last year, he became a mentor with the YMCA, supporting a group of young people with their emergency situation awareness campaign. During this quarantine time, he has also been volunteering for the Innovation HUB Gjakova, implemented by YMCA and supported by UNICEF, where he leads online youth sessions to teach people how to contact emergency lines when they need to. Besfort hopes to inspire and help communities through his work.
4.Seme Lado Michael (South Sudan)
Advocating for the consideration of people with disabilities
The global outbreak of the Coronavirus pandemic has strongly affected the citizens of South Sudan, particularly those with disabilities. People with disabilities across South Sudan are being affected in many ways due to the lockdown, and many have not felt included in the emergency responses of the various organizations working in the country. Seme Lado Michael, a 27-year-old South Sudanese man with a physical disability, has been working to create and pursue a response plan that includes people with disabilities through his work as a Disability Inclusion Facilitator. “As facilitator,” he states, “I started creating awareness through awareness training, radio stations, article writing and even social media like Facebook and WhatsApp, [covering the] inclusion of people with disabilities”. Through his work, in addition to sensitizing people, he is hoping to reach the various organizations working in South Sudan and encourage and help them to understand and work towards inclusion by recognizing and involving people with disabilities.
5.Elisabeth Egel (Estonia)
Maintaining community in times of crisis
A possible silver lining of this pandemic is that it has reignited a spirit of community in many places. On June 18th, 2020, Elisabeth Egel, a 19-year old blind student and the representative for the Future Leaders Exchange (FLEX) Program alumni community in Tallinn City, Estonia, organized a small event where she and 8 other participants made baked goods for their local food bank to share as support people affected by COVID-19. Another goal of the event was to engage the recent FLEX program students, as they were forced to interrupt their foreign exchange year earlier than expected. Elisabeth and the other alumni wanted to make sure to involve them in the volunteering activities organized by the program’s alumni and to inspire them to find ways to help their community. Elisabeth also volunteers as one of the facilitators in a local English club, where participants from different cultures meet regularly to practice speaking English and learn about American culture and history. Since the club was not able to meet due to the pandemic, Elisabeth created weekly English grammar, American culture and history themed quizzes for the group’s participants from April to the beginning of June in order to help them continue to learn English during this time.
6.Indonesia Disability Movement for Equality
Joining forces to protect communities in need
South Sulawesi, Indonesia’s first coronavirus was identified in on 18 March 2020. Shortly after, the government called for residents to begin to socially distance themselves and avoid large crowds and gatherings. Public events and spaces were cancelled, closed, or significantly downsized, and healthy and clean living was strongly encouraged. While these policies had positive effects, they also put many people in difficult situations. People with disabilities, particularly those working in the informal sector, were some of those people: For example, people with disabilities selling food had fewer customers due to restrictions on gatherings, and blind people working as masseuses had no clients due to touch-related fears. In an effort to support these people, there has been an emergence of various initiatives from organizations that focus on people with disabilities, operating in conjunction with the Indonesian Disability Movement for Equality. Pertuni, an organization for blind people, put out a call for donations and distributed food packages to hundreds of blind families living in the city of Makassar and the Gowa Regency. They also organize online counseling to educate blind people about COVID-19. Similar initiatives were also carried out by an organization for deaf people in South Sulawesi and the Independent Leprosy Association of Makassar City and the Gowa Regency. Several of these organizations are coming up with ways to safely support elderly people with disabilities. “We know that the elderly are the most vulnerable people affected, and [elderly people] with a disability are even more vulnerable”, adds Nur Syarif Ramadhan, a member of the Indonesia Movement for Equality.
7.Shirley Liu (Australia)
Ensuring a high level of accessibility in the midst of a pandemic
Before the widespread outbreak of COVID-19, Australia had already had its share of national emergencies. In January 2020, the country experienced a devastating period of bushfires, leaving the landscape burnt and charred and forcing people and animals to relocate. While governments and citizens were working to support those in need, it became apparent that the deaf community was not aware of what was going on, and this was primarily due to the lack of accessible announcements and press releases. Deaf people in Australia, who have English as a second language, missed out on vital information that could have contributed to their safety and wellbeing. Since then, several people have initiated a gradual process to ensure that the deaf community of Australia are getting access to the news in their first language, Auslan (Australian Sign Language). One such person is Shirley Liu, a young deaf woman from Sydney who was inspired to spring to action. She led a campaign to ensure that the country’s main TV channels featured a visible Auslan interpreter on screen. This campaign inspired significant changes, notably pushing media to pay attention to and include Auslan interpreters, but also encouraging the deaf community to fight for their rights to accessible information. This, in turn, has influenced the presence of Auslan interpreters during various COVID-19 related events and speeches. During televised speeches and briefings, there are now Auslan interpreters next to the Prime Minister and state premiers, and there is an increase in accessible Auslan videos and collaborative practices between the state government and the deaf community.
8.Ana Sikhashvili (Georgia)
Creating a platform for her fellow youth
Before the pandemic started, 18-year old Ana Sikhashvili enjoyed being outside and working on projects and events aimed at spreading information to and about blind people in Georgia. When the Coronavirus prevented her from continuing her work, however, she felt a bit lost. Not wanting to stay inactive, Ana decided to create a podcast called Fried Potato on which young activists could share their experiences and stories. “The uniqueness of this project is that any person can join during the [virtual] meeting and can ask the questions”, she explains. She sought out stories from a variety of students from regions all over Georgia who were also struggling with continuing their work during the lockdown, offering them a platform and opportunity to adapt their work to their new reality. “The whole idea of this project is to make people smile”, added Ana, “During the pandemic there was only one topic: Coronavirus. [That is why] we called our podcast Fried Potato, just to make everyone smile and educate [them on] different topics”. Although the goal was to support her fellow youth, Ana and her team have strongly benefitted from the experience as well, citing the development of their communication and listening skills, working on social media networking, and developing their technological skills through the recording and editing of the podcast. Ana hopes to continue and expand the project. “In the future, we are planning to do some research about different stereotypes, because one of our main goals is to break stereotypes, for instance about disabled people”.
9.TraciAnn Hoglind (USA)
Distributing accessible information on COVID19
Many people with disabilities struggle when dealing with medical professionals due to the lack of accessible information. After seeing and experiencing a huge lack of accessible health education and communication in sign language growing up, TraciAnn Hoglind decided to pursue a Master of Public Health degree to help tackle the issue. After she had graduated, she founded Health Signs Center to provide linguistically and culturally accessible public health education and advocacy resources to deaf communities. Since the announcement of the pandemic in January 2020, TraciAnn has been disseminating bilingual videos in American Sign Language and English on a variety of public health topics, including different perspectives on the impact of COVID-19. She also makes videos featuring ASL translations of COVID-19 articles, and they have gathered thousands of views. Among the most popular videos was a collaborative effort with the NAD Youth Section, entitled “Our Responsibility as Young Adults to Save Lives.” TraciAnn also recently obtained a microgrant to conduct a national COVID19 survey project to develop Deaf-inclusive policy initiatives for emergency preparedness and response efforts, which will be shared with the community to promote self-advocacy skills at the state level.
10.Sharad Philip (India)
Delivering extra care to his patients
Dr Sharad Philip is a young doctor living with Retinitis pigmentosa, a permanent visual disability that changes how the retina responds to light. He works as a psychiatrist at a large tertiary care psychiatric hospital in India, starting off at his present institute for training and subsequently continuing on as a supervisor for other trainees. Usually, he works towards the rehabilitation of people with psychosocial disabilities and mental health conditions. Like many others these days, however, he is saddened by the lack of accessible systems to support the aspirations and inclusion of the differently abled, especially in health care professions. Especially during this pandemic, when healthcare professionals and resources are over taxed and over extended, he uses his role as a representative of his institution’s internal committee for Persons with Disability to advocate for the inclusion of medical professionals with disabilities, as they can function as integral members of healthcare teams at the frontlines, using himself as an example. More generally, however, his current work involves reaching out to the patients in the community, bringing him to connect with other local hospitals, social welfare systems, NGOs and even law enforcement agencies to ensure their well-being. While doing so, he and his team co-developed systems that minimized the risk of exposure while also ensuring best quality care for all his patients, inspiring his fellow professionals to better care for those at the fringes of society. Having been on the periphery all throughout his life, likes to say, “Who can empathize better than me, who has always been discriminated [against]?”.When there was an outbreak of COVID-19 in his ward, he used this system to manage it and guide his patients to healthy recoveries. Through his work, Dr. Sharad hopes to show us that the world of sight does not begin or end with our eyes. He encourages people to look beyond the disability and connect as humans. “You might discover something quite extraordinary… that we are simply ordinary,” he says.
I hope that these stories will inspire you to see people with disabilities as responsible, resilient and resourceful both in times of crisis and after, as they truly are.
Written by Jayathma Wickramanayake and Christian Detchou