COVID-19 and social policy in contexts of existing inequality: experiences of youth with disabilities in Ethiopia and Jordan

Abstract

This article explores the social policy implications of the COVID-19 pandemic for adolescents and young people with disabilities in Ethiopia and Jordan. The article draws on qualitative research interviews carried out in person between November and December 2019 and by phone between April and June 2020 with 65 young people with hearing, visual and physical impairments in urban settings in both countries, complemented by interviews with key informants in government and civil society organisations working with young people. Whilst in Jordan social policy on disability is more developed, and in Ethiopia, systems are still embryonic, the COVID-19 pandemic has increased the marginalisation of adolescents and young people with disabilities in both contexts as health, education and social protection systems have been slow to mobilise targeted support and address social exclusion. This article identifies social policy gaps in Ethiopia and Jordan that must be addressed in order to support young people with disabilities during crises.

Points of interest

• Adolescents and young people with disabilities in lower- and middle-income countries are at high risk of both contracting COVID-19, and being harmed by efforts taken by governments to mitigate the spread of the virus.

• Our evidence shows that the COVID-19 pandemic response has negatively affected access to education, health care, employment and social protection support for adolescents and young people with disabilities in Ethiopia and Jordan, and magnified social exclusion within the community.

• In both contexts the pandemic has highlighted the limitations of current social policies for addressing disability-related inequalities quickly and effectively.

• Support that is targeted to the most marginalised adolescents and young people with disabilities, across education, health, labour and social protection sectors, should be at the forefront of social policy responses in line with the Sustainable Development Agenda 2030 to ‘leave no one behind’.

Keywords:

• Social policy
• youth
• disability
• stigma
• inequalities
• inclusion

1. Introduction

Emerging data on the impact of the COVID-19 pandemic around the world consistently shows that not only are people with disabilities more likely to die than people without disabilities, but that strategies intended to slow the spread of the virus also have a disproportionate negative impact on people with disabilities, due to their care-related needs and over-representation among the poorest social groups (World Health Organization (WHO) 2020; Office of the High Commissioner for Human Rights (OHCHR) 2020). In low- and middle-income countries (LMICs), where social protection systems are nascent or poorly funded, lockdowns and social distancing measures are likely to worsen poverty for those who are already among the most marginalised groups (United Nations Department of Economic and Social Affairs (UNDESA) 2020a).

Emerging literature has identified the multi-dimensional negative effects of the pandemic for people with disabilities in LMICs (Shakespeare et al. 2021) and there has been some attention to the experiences of children with disabilities in such contexts, with a focus on educational impacts for groups who already face marginalisation and exclusion (Cahapay 2021; Jia and Santi 2020; Mbazzi et al. 2021). Yet an ongoing dearth of data disaggregated by disability and limited research on adolescents and young people with disabilities in LMICs has presented challenges for analysing the impact of the pandemic and for targeting social protection policies and programming to this cohort (UNDESA 2020a; International Labour Organization (ILO) 2020; WHO 2020).

In order to address this challenge, this article explores the impact of the pandemic on adolescents and young people with disabilities in Ethiopia and Jordan, two LMIC contexts which have very low expenditure on social assistance in general (approximately only 1% of GDP, World Bank, 2019), and where the authors have been involved in an ongoing programme of longitudinal mixed methods research since 2015. The project, entitled ‘Gender and Adolescence: Global Evidence’ encompasses six LMICs, and explores the experiences of young people throughout the second decade of life, with a strong focus on the most vulnerable adolescents. Early in the pandemic, we moved towards using virtual research tools to enable continued engagement with young people, and were able to collect qualitative data from vulnerable urban youth who were long-term participants in the GAGE programme.

It soon became evident that not only are these contexts where there was already quite different existing social protection provision for people with disabilities; both Jordan and Ethiopia have also pursued very different approaches to managing the pandemic, and this has had implications for young people’s experiences of the crisis. In Jordan, there is relatively good support from government for adolescents and young people with disabilities, and while the country’s sizeable refugee population is partially excluded from these protections, the United Nations (UN) system seeks to fill this gap in provision. Similarly, the government’s centralised and well-coordinated response, including an organised programme of distance education, has not targeted refugees, of whom large numbers have disabilities (Thomson et al. 2018). In Ethiopia, there is less formal support available, especially outside of major cities, although there have been improvements in recent years through the introduction of new policies around disability, including the 2012-2021 National Plan of Action of Persons with Disabilities. Whilst initially seen as a success story in its quick response to COVID-19, Ethiopia has since seen transmission rates rise rapidly; yet limited deployment of social safety net programmes in urban areas and a lack of infrastructure for delivering specialised schooling at a distance leaves adolescents and young people with disabilities with little formal support as the crisis escalates (Emirie et al. 2020).

The research discussed here offers insights into how COVID-19 has impacted adolescents and young people with disabilities in Ethiopia and Jordan across various domains of their lives, including access to education, health care and employment. In both contexts, we find that the pandemic has amplified pre-existing vulnerabilities in these domains, with existing social protection mechanisms either poorly mobilised or non-existent in the face of the impact for adolescents and young people with disabilities of the enormous socioeconomic crisis it has generated. Drawing on these findings, this article outlines recommendations for social protection policies for both countries.

2. Disability and COVID-19 in context

Since COVID-19 was declared a pandemic in March 2020, the WHO has been advising public health authorities around the world on containment of the virus, including how to mitigate its impact on vulnerable populations (WHO 2020). An emerging body of academic work has attended to the catastrophic impact of COVID-19 for people with disabilities (Mladenov and Brennan 2021) and called for their inclusion in all recovery stages (Shakespeare et al. 2021). WHO guidance calls attention to the obstacles facing people with disabilities in accessing information, implementing hygiene measures, and undertaking social distancing. The UN has also highlighted the impact of the global recession expected to be triggered by COVID-19 on young people aged 10 − 25, particularly those with disabilities who already experience challenges in accessing education, health care, livelihood opportunities and social protection (UNDESA 2020b).

Yet, as noted by international agencies, the knowledge base around disability and youth on which these assumptions and recommendations are based remains thin (UNDESA 2020a). Moreover, research into the experiences of adolescents and young people with disabilities in LMICs remains limited for various reasons, including the fact that some families hide children with disabilities at home for fear of stigma (Rohwerder 2018). Evidence gaps are particularly striking for certain domains: the psychosocial wellbeing of adolescents and young people with disabilities; their economic capabilities; their sexuality and the implications for disability-inclusive sexual and reproductive health (SRH); and their voice, agency and participation as citizens (Jones et al. 2018). More research is therefore essential to understand the patterning of COVID-19 impacts on the lives of youth with disabilities. Such impacts are likely to differ for young people with different types of impairments and for those who live in different contexts (Grech 2011).

The UN has described the inclusion of people with disabilities in the pandemic response and recovery as both key to achieving the Sustainable Development Goals’ (SDGs) pledge to ‘leave no one behind’ but also for testing the global commitments of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) (UN 2020). The UNCRPD was adopted by the UN General Assembly in 2006. The first treaty to address the vulnerability of people with disabilities from a rights perspective, it adopts a social model of disability that rejects the association of impairment with dependency, pity and charity (Ruiz 2017). Article 28 of the Convention outlines the right of people with disabilities to an adequate standard of living and social protection. Countries (including Jordan and Ethiopia) have gradually begun to develop policies to address these rights. A rights-based approach to the effects of COVID-19 has been used as the basis for advocacy around the inclusion of people with disabilities in all stages of the response, including targeted social protection measures, and protection within health care, employment and education (ILO 2020). Yet the extent to which the diverse everyday experiences of the most marginalised people with disabilities in LMICs can be accommodated within and reached by human rights instruments has equally been called into question (Meekosha and Soldatic 2011).

2.1. Disability and social policy in Jordan

Jordan’s 1993 Law for the Welfare of Disabled Persons recognises the responsibility of various government ministries to make provisions that enable people with disabilities to enjoy full human rights. Jordan ratified the UNCRPD in 2008. It requires states to implement legislative, administrative and other measures needed to assure the rights of persons with disabilities, and Jordan’s 2017 Rights of Disabled Persons Law (which updated a 2007 law) outlines comprehensive protection for people with disabilities in all spheres of society. It includes provision for young people’s right to: participation and inclusion and the development of their abilities and skills; enrolment in accessible education; safety from violence; and disability-inclusive poverty alleviation programming. Yet despite the establishment of a cross-ministerial body, the Higher Council for Persons with Disabilities, the government has been criticised for failing to put these policies into practice by not allocating funds for their implementation (Human Rights Watch 2019). Various other Jordanian laws are also inconsistent with the UNCRPD and have not been updated, serving to disempower people with disabilities (Thompson 2018).

Negative attitudes towards people with disabilities in Jordan make effective implementation of legislation around disability extremely difficult (Al-Zyoudi 2006; Mulazadeh and Alharbi 2018). The country has a long history of discriminatory treatment of people with disabilities. Women with disabilities are regarded as a burden to their families due to the difficulties they face in marrying, reflecting concerns about the hereditary nature of some disabilities (Turmusani 2003; Al-Zboon and Smadi 2015). Jordan also hosts a large number of refugees from Palestine and Syria, which because of their experiences have higher rates of disability than the local Jordanian population, although there is a lack of consensus on exact numbers (see Thompson 2018 for a discussion of different survey findings from 2014 onwards). The literature indicates that young refugees with disabilities in Jordan have been subject to structural neglect within service provision, with even basic health care and education accessed by relatively few (Presler-Marshall et al. 2020).

Inequalities in access to disability-inclusive services for refugees and local people prior to the pandemic are seen in the landscape of social protection programming in Jordan, which receives only 1.1% of public expenditure, despite 12.6% of the population having a disability (WHO and World Bank, 2011). The government’s National Aid Fund (NAF) was established in 1986 to provide financial assistance for vulnerable families, including those with disabled members. As well as free basic health care, the Ministry of Health provides cash transfers to low-income families with a disabled child; and the Ministry of Social Development’s Handicapped Affairs Programme (HAP) supports adolescents and young people with disabilities in accessing care, shelter and other basic needs. Yet despite an estimated 30% of Syrian refugees having disabilities (either congenital or conflict-related), refugees are ineligible for many of these programmes. Instead, the United Nations High Commissioner for Refugees (UNHCR), the United Nations Children’s Fund (UNICEF) and the United Nations Relief and Works Agency for Palestine Refugees in the Near East (UNRWA) – along with a raft of international non-governmental organisations (NGOs) including Oxfam, Save the Children and CARE International, and government actors such as the UK Department for International Development (DFID) and the United States Agency for International Development (USAID) – provide social protection for refugees. This assistance can be grouped into four categories: cash assistance and voucher schemes; education; employment; and protection (including psychosocial support) (Roth et al. 2017). Under UNHCR’s policy on age, gender and diversity (AGD) (UNHCR 2018) and in line with its Committee Conclusion on Refugees with Disabilities (UNHCR 2010), protection and assistance to refugees must include persons with disabilities. Yet prior to the pandemic, research in Jordan suggests that UN agencies have tended to rely on NGOs to deliver small-scale, time-bound programming rather than the UN agencies themselves assuming responsibility for appropriate programming at scale (Presler-Marshall et al. 2020).

2.2. Disability and social policy in Ethiopia

The delivery of social protection for adolescents and young people with disabilities in Ethiopia through formal mechanisms is at a much more nascent stage of development than in Jordan. In 2010, the Ethiopian government ratified the UNCRPD and in 2012 published a National Plan of Action (NPA) on Persons with Disabilities that highlighted priority areas for action over the subsequent nine-year period (2012–2021). However, in 2016, reporting by a UN committee on the implementation of the UNCRPD noted that there were still various gaps in delivery of actions detailed in the Plan, including limited data on the status of adolescents and young people with disabilities (UNCRPD 2016). A restrictive law around the funding of charities and NGOs has also hampered the capacity of civil society to work on disability issues (Wakene 2011); this law was, however, repealed in 2019 by Nobel Laureate President Abiy Ahmed, leading to hopes that the new government will demonstrate a more meaningful commitment to human rights.

The 1995 Constitution of Ethiopia codifies the right to social protection for vulnerable groups, including people with disabilities, and in 2005 the Productive Safety Net Programme (PSNP) enrolled people with disabilities to receive cash transfers on an unconditional basis (Endale et al. 2019). However, overall public expenditure on social assistance is very low, at only 1% of GDP, despite an estimated 9.3% of the population having a disability, and 41% of persons with disabilities living in extreme poverty ((UNICEF, MOLSA and Development Pathways, 2019). Moreover, there remains more investments and work to be done to strengthen the capacity of sectors including health care and education to be accessible to and inclusive of people with disabilities. For example, the launch of a Master Plan for Special Needs and Inclusive Education (2016) notwithstanding, adolescents and young people with disabilities in rural and poor areas of the country face greater difficulties in accessing education because of the lack of resources among poorer schools, including experienced and qualified teaching staff and adapted classrooms (Malle et al. 2015; Temesgen 2018; Tedla and Negassa 2019). While research has tended to focus on access to health and education services for young people, the impact of disability-based discrimination, which often leads to confinement at home for People with disabilities, also has implications for young people’s social connectedness and overall mental health (Abeshu 2017).

In addition to challenges around the capacity of systems to deliver social protection to people with disabilities, social attitudes in Ethiopia have consequences for young people’s enjoyment of the rights asserted in the UNCRPD, though attitudes are gradually beginning to change. While poor medical care accounts for high numbers of preventable disabilities such as blindness from trachoma and physical impairments from lack of vaccinations (Jones et al. 2018), disability has been seen historically as a curse, creating stigma around impairments (Tefera 2016). This stigma is amplified by gender inequality, with girls with disabilities found to be more disadvantaged and more likely to receive less support from their families regarding schooling than their male peers (Zegeye 2019).

2.3. Social policy, disability and capabilities

Evidence from prior GAGE research illustrates the marginalisation of adolescents and young people with disabilities in both Jordan and Ethiopia pre-COVID, and its heterogeneity; factors including differences in impairment, gender and migrant status shape individual these experiences. A lack of resources in LMICs presents challenges for participation at home and within school, and in navigating the built environment (Jones et al. 2018) – all of which serve to restrict the lives of adolescents and young people with disabilities. Under lockdowns in Ethiopia and Jordan, the effects of this social exclusion are likely to be amplified.

Disability is social in nature; rather than being an inherent quality, disability emerges through interactions between impaired bodies and ableist norms, institutions and practices that exclude certain people (Bailey et al. 2015). An intersectional and rights-based framework provides the platform to consider how multiple axes of power, including social norms about race, age and disability, interact to shape these individual experiences and outcomes (Hankivsky 2012). Within critical disability studies, intersectional theory provides a useful framework for exploring how one’s experiences of disability is shaped by other social identity positions (Flynn 2022).

From a rights perspective, as outlined in the UNCRPD, states have obligations to address these intersecting forms of discrimination to ensure that all people with disabilities are able to access a certain standard of living, equal participation, and social inclusion. The conceptual framework used by the GAGE research programme – built around what the programme terms the ‘3 Cs’ of capabilities, contexts and change strategies – accounts not only for the interplay of individual and social dynamics, but the potential for policies and programming to instigate change that enables the most vulnerable young people to exercise their full human rights.

3. Research process

3.1. Virtual data collection approach

Our findings are based on qualitative research interviews carried out at two points – November to December 2019 in person and by telephone following the onset of the pandemic between April and June 2020 – with vulnerable urban youth in Ethiopia and Jordan. These interviews were undertaken as part of a broader longitudinal research programme that has been generating data on gender and adolescence in LMICs since 2016, including a purposively selected sample of adolescents and young people with disabilities. Due to the pandemic, data collection scheduled for 2020 in both Jordan and Ethiopia pivoted to being undertaken ‘virtually’ through telephone and WhatsApp calls with participants, offering an opportunity to explore the impact of the pandemic. In both countries, interviews were carried out by researchers who spoke the local language and had built up prior relationships with participants. Along with relevant local approvals, official research ethics approval was obtained from the Overseas Development Institute (ODI) Research Ethics Committee (02438).

Tools included a semi-structured interview guide covering COVID-19 awareness, knowledge and practice, as well as impacts of the pandemic and the ensuing policy responses on three key GAGE capability domains: education and learning; health and nutrition; and economic empowerment and social protection. (For more details about the research tools see Malachowska et al. 2020a).

Interviews were transcribed, translated and coded using a thematic code book in the MAXQDA qualitative software package. During the fieldwork process, detailed debriefing discussions with the interviewer team were held at the end of data collection in each site to address emerging context-specific issues and themes, and to exchange insights about the use of the research tools with adolescents and youth with different types of impairments. Data were analyzed thematically using a detailed codebook developed by the authors in line with GAGE’s conceptual framework and specifically focusing on education and learning, health and health care and economic empowerment (encompassing both employment and social protection support) (GAGE consortium, 2019). We coded thematically and then disaggregated according to age, location and disability type.

3.2. Research sample

In Ethiopia, young people in the sample lived in urban centres in the three largest regional states: Adama and Batu (Oromia region), Bahir Dar and Ebenat town (Amhara region), and Hawassa, (Southern Nations, Nationalities and Peoples Region (SNNPR)) as well as Addis Ababa, the federal capital. The sample was drawn from the GAGE longitudinal research sample (for both the pre-pandemic and COVID-19 data collection rounds) and also included some individuals purposely sampled from a study on vulnerable urban youth (funded by the United Nations Population Fund (UNFPA)) in the context of COVID-19 (in Adama, Hawassa and Addis Ababa for the COVID-19 data collection round only). The sample comprised 45 adolescents and young people with disabilities from two age cohorts: 15–19 years and 20–24 years. It also included youth with both congenital and acquired (e.g. through accidents, or delayed medical treatment) disabilities; 26 had visual impairments and 19 had physical impairments. 23 participants were male and 22 were female. Researchers also conducted virtual interviews with 19 key informants from the city bureaus of health, labour and social affairs, women, children and youth affairs as well as NGOs working with vulnerable urban youth in each city.

In Jordan, the sample included stateless Palestinian refugees from Gaza Camp and Jordanians from a rural host community (Mafraq) that is part of the GAGE longitudinal research sample. In total, 20 youth aged 15–19 years with hearing and visual impairments were included; 13 young people had visual impairments and 7 had physical impairments. 16 were female and 4 were male. Virtual interviews conducted with 7 key informants, including staff from community-based organisations, teachers, and social workers.

4. Results

4.1. Health and nutrition

Our findings suggest that adolescents and young people with disabilities in Ethiopia encountered challenges in accessing health services and adequate nutrition during COVID-19, with the pandemic exacerbating pre-existing inequalities and barriers.

In both Jordan and Ethiopia, adolescents and young people with disabilities reported having reasonable access to information about COVID-19 transmission and prevention mechanisms. This was through television (TV) in Jordan, and FM and regional radio stations on mobile phones in Ethiopia, and, in some cases (in both contexts and especially for male youth), the Internet. Yet youth with disabilities emphasised that guidance on how to prevent spread of the virus was difficult to follow in practice due to community fears around transmission, which made it difficult to overcome existing infrastructural barriers.

In Ethiopia, for example, social distancing is challenging for youth with visual impairments or those in wheelchairs who typically rely on community members to help them navigate public spaces. Fear of the virus means fewer people are willing to help, wanting to avoid close proximity to other people and touching surfaces (e.g. wheelchairs). An 18-year-old young woman with a visual impairment in Addis Ababa noted:

I feel sad now that people are not willing to help us. I know it’s difficult, but I can’t help but be sad. When they are willing to help, we fear of them and they fear us. You can never be sure if that person does not have the disease, and they think the same.

Interestingly, there were differences between cities. Whereas in Addis Ababa, Adama and Ebenat these challenges were highlighted by multiple respondents, in Bahir Dar and Hawassa, where social distancing rules are largely not being followed, youth with disabilities reported getting help from community members. However, in these contexts, they complained that public transport was crowded (despite official guidance for drivers to carry fewer passengers to facilitate social distancing) and that they did not feel safe, especially as many people in these locations were not wearing face masks. Several young people also mentioned that they were mocked for wearing masks and labelled as ‘cowards’.

For many respondents in both countries, economic constraints also hindered use of soap, alcohol sanitisers and masks. A 19-year-old Palestinian young woman with a visual impairment in Gaza Camp, Jordan, explained:

We can’t buy face masks or gloves – we don’t have the money – and no one gave us any for free.

Several youth reported that they had no running water supply and had to source water from their neighbourhoods. Similarly, a 19-year-old young woman with a physical disability from Bahir Dar, Ethiopia explained:

I try my best to stay safe, but I have to share a toilet. If I get infected, I am sure my body cannot resist it. This disease is for people who have a good living standard. You have to have your own house and bathroom so you can stay safe. There are many people who come to this compound. Everyone touches the water pipe, toilet door, and they say it stays longer on metal objects. This worries me a lot.

Poverty is pronounced among migrant adolescents and young people with disabilities in Ethiopia. Our findings pre-pandemic found that adolescents and young people with disabilities who had migrated from rural to urban areas often faced very precarious living arrangements due to a dearth of economic support from families as well as the state. As a 22-year-old male youth with a visual impairment from Debre Tabor noted:

My parents have no farming land and can’t provide me with any support. The school gave me 350 birr a month [8 USD] and I sometimes get some support from an NGO…I used the money to buy food and basic supplies. But the money is not even enough to buy shoes and clothes for me. I live in a tomb inside the church. I have been doing this for two years.

Similarly, a key informant from the Association of Persons with Disabilities in Addis Ababa emphasised that because migrant youth with disabilities often live in very low-cost housing without private piped water or toilets, they are at greater risk of exposure to COVID-19.

Youth in both contexts highlighted that lockdown had exacerbated existing problems with access to health care. A number of adolescents and young people with disabilities in the Ethiopian research sites underscored that economic constraints and a dearth of health services beyond very basic healthcare in rural areas and small towns constitute major barriers to accessing appropriate services. A 17-year-old adolescent girl with a visual impairment, originally from a rural area who had recently migrated to Debre Tabor, explained her case as follows:

I told my parent about my eye irritation and even asked them to take me to the hospital but since they are living in a rural area and not used to spending money for hospital visits and can’t easily acquire money they would take me to holy places to get holy water when they saw that I was sick. When they finally decided to take me to the hospital it was too late. So then they took me here [to a school with special needs classes for grade 1-4] so now I am at least attending school.

In Jordan, health services, including specialist services for people with disabilities, were generally more widely available, although youth living in camps noted that it often took considerable persistence to secure appropriate referrals and that costs of treatment were frequently prohibitively high. As a 15-year-old Syrian refugee adolescent boy with a visual impairment living in Zatari refugee camp explained:

I didn’t leave a single doctor in the camp [a camp with 80,000 inhabitants] without visiting them!…In the end I was able to go to Amman and they examined my eye and said I would need a retina implant. They first asked for 3000 Jordanian Dinar [4230 USD] but then reduced it to 1500 Dinar [2115 USD].

In Jordan, youth with hearing disabilities emphasised that lack of access to specialist services presented challenges in terms of maintaining their hearing aids, which are essential for their ability to communicate about the pandemic. As the mother of a 15-year-old girl in Mafraq noted:

The battery for my daughter’s hearing aid is not available… Hearing was improved after she started using it but they are not available now. The local association for persons with disabilities used to bring them from Amman to us but they have suspended operations for now.

Previous research has found that people with disabilities are more likely to experience adverse economic outcomes during crises where basic services are disrupted because they are not able to access the same opportunities for work, education and employment as their non-disabled peers (WHO and World Bank 2011; UN 2020). In Ethiopia, a number of youth emphasised they were compelled to depend on relatives and neighbours for charitable support and that this dependency was very stressful. As a 23-year-old youth with a physical disability from Adama noted:

Since COVID, I have been leading a hand-to-mouth life. I have no job. I depend on some money that my friends give me. This cannot help me to lead a stable life. Before COVID, I served in a local church and some people had given me some money as alms, but with the closure of the church, everything has been stopped and I started to face shortage of food every day. It is miserable for me to lead such a life now.

According to a key informant from the Association of Persons with Disabilities in Ethiopia, and as the above quote shows, this dependency has been compounded by the closure of churches, which had previously provided food and alms to impoverished persons with disabilities. A 20-year-old male with a physical disability in Adama reported:

For people like me, fulfilling the basic needs is the top priority rather than thinking [about] contracting the virus. I have been facing a shortage of food, and I give priority on how to get daily food rather than taking care of my health under COVID.

4.2. Education and learning

A key concern among youth attending school or university was the closure of schools and uncertainty about when they would reopen – especially as for many, having advanced in their education was already a major achievement, given the limited availability of special needs education facilities in Ethiopia in particular but also in Jordan outside of the capital city. In both contexts, young people with disabilities and caregivers reported that to access education facilities that provided specialist education (for example, tuition in Braille or sign language) that they either had to travel long distances or migrate to an urban area, and that many schools made only limited adaptations to accommodate students with disabilities or only run up to a certain age. As an 18-year-old girl with a hearing impairment from Batu, Ethiopia noted:

I am not getting support from the school. I would be happy to go to a school where they give support with sign language….Teachers consider teaching students with special needs is difficult. They believe they can’t communicate with us. They also do not consider that this is their obligation. They focus on teaching students without disabilities and have no interest in us. They could for example communicate by writing instructions on paper to help us and find out if we understand the class. But they do not try.

For other youth, discrimination by peers in school was another key challenge and was identified among those who had had any schooling as an important driver for eventual dropout. As the mother of a 15-year-old adolescent girl with a communication disorder from a rural area who had attended a school in Ebenat, the district town, explained:

It was when they were laughing at her that she quit…She was trying with her studies and she attended for most of the year but then she stopped and asked to stay here. She said the other students always laughed at her and she hated going. So she quit.

In the context of the pandemic-related service closures young people in our sample repeatedly emphasised their concern that their educational aspirations may be thwarted. A 20-year-old male with a visual impairment from Bahir Dar (Ethiopia) noted:

My intention was to find myself in university in 2020 but it looks certain that I will not be there and I don’t know when we can start education again. It is quite frustrating.

Many respondents also expressed anxieties about retaining what they had learnt to date given a dearth of accessible educational materials that they could use while out of school. As a 19-year-old young woman with a visual impairment in Ebenat (Ethiopia) noted:

If we are asked to take an exam when school opens, we haven’t learnt anything… While other normal students are referring to and reading their books, we don’t have braille to read, and waste our time waiting for school to reopen.

Similarly, in Jordan, youth with hearing impairments emphasised that while many students were accessing online education, they were still waiting for instruction in accessible formats. Those in large families often missed lessons as the whole family was sharing a single device. As an 18-year-old young woman from Gaza Camp (Jordan) explained:

We are six [siblings] and we are all studying… We couldn’t turn to the two different channels at the same time so I couldn’t do it right when we were following lessons from our teachers.

In Ethiopia, these challenges were compounded by limited digital connectivity. With secondary school online learning being transmitted by TV rather than radio, and university education via the application (app) Telegram, many of the youth in our sample were unable to access virtual education as they had limited access to TV and internet. Even for those who did have access to TV at home, lessons at this level are all provided in English and as they are unable to ask questions it was difficult to follow the lessons fully. For youth with visual impairments the medium of instruction provided further challenges as some content relied on visual interaction. An important exception was in Hawassa, where the city Bureau of Education is providing adolescents and young people with disabilities with memory cards with pre-recorded lessons they can listen to on their mobile phone.

Yet closure of schools was also stressful for adolescents and young people with disabilities in both countries for social and economic reasons. By going to school, adolescents with disabilities had been able to socialise regularly, and for many it was an opportunity to secure emotional and practical support from peers in communities which otherwise often displayed significant levels of exclusion. As one 18-year-old adolescent girl with a visual impairment from Ebenat explained:

I can’t move freely around without help from my friends – they help me going to school and at school….The other challenge is being able to read by myself…I need to ask my teachers or friends to read anything for me…For this reason I wish there could be summer school. I wish we could also get access to Braille books.

Similarly, a 20-year-old male youth with a visual impairment from a Palestinian refugee community noted:

Most of my friends are completely blind like me. We trust each other. We understand each other.

Now with the onset of the pandemic this source of social connection has been curtailed, and it has had particularly deleterious effects on adolescents and young people with disabilities given a dearth of adapted communication options and the specific needs they have. An 18-year-old adolescent girl with a visual impairment from Gaza Camp emphasised:

I don’t communicate with my school friends. I only contact my best friend on WhatsApp but not often, as there are often problems with the internet connection…

Similarly, an 18-year-old young man with a visual impairment from Ebenat noted:

We spent most of our time at school. We used to get help from other students working in groups and got advice from counsellors about how we should study… But not anymore. So, we are suffering a lot because of these reasons.

Some adolescents and young people with disabilities in Ethiopia had been receiving school stipends prior to the pandemic but these had now been suspended, as schools were closed. One adolescent girl from Debre Tabor reported having received a stipend of 350 birr as a charitable donation from teachers and students, but this had also been discontinued during COVID-19, leaving her in a very vulnerable situation. Similarly, students in Hawassa (where there was no government school stipend but instead an arrangement to receive school meals from a private boarding school) noted that with the closure of educational institutions, they were facing serious food insecurity.

4.3. Economic impacts and access to social protection

Many adolescents and young people with disabilities in both countries underscored that the pandemic had compounded the challenges they already face in accessing viable livelihoods. As a 24-year-old young woman with a physical disability from Adama (Ethiopia) explained:

I recently graduated from college, I passed through many challenges to complete my education. It is very discouraging for me still to depend on my mother to sustain my life. She is poor… She hopes I will get a job, but there is no support for persons with disabilities to get a job, especially in the context of the pandemic.

In Jordan, few adolescents and young people with disabilities in our sample were in decent employment and instead were running their own small businesses, but the pandemic and response measures had curtailed opportunities to sell their products. A 17-year-old adolescent girl from Gaza Camp explained:

Before corona[virus], I used to go to the market with my sister. I used to make cakes and sell them. Also, I used to make embroideries to sell. Nowadays we can’t go out of the house.

In Ethiopia, many adolescents and young people with disabilities in our sample had migrated to the urban centres where this research was undertaken in order to access specialised education, and were living alone and responsible for their daily subsistence. Most underscored that securing work to help cover their living expenses was very challenging due to a shortage of employment opportunities in general and compounded by discrimination against persons with disabilities. An 18-year-old adolescent boy with a visual impairment explained the challenges he has faced:

We asked to be organised many times [to support our rights]. We even managed to get a letter from the Kebele (local government) administrator to work on the construction of a lodge… We asked three times to be selected for that [daily labouring work] but everyone turned a deaf ear to our problem…In other cities youth like us [with disabilities] we heard get these chances but no one has listed to us. They [the government] have done nothing for us.

Since the onset of the pandemic, several explained that they felt trapped between struggling to ensure their economic survival on the one hand, and protecting themselves from COVID-19 on the other. As a 17-year-old boy with a visual impairment from Hawassa explained:

It is so difficult to talk about my livelihood situation. I sometimes spent a day without food, because I don’t have any source. I was eating three times a day in the school providing the service, but now that has stopped. My parents are poor and living in a rural area to support me, so now I am completely reliant on support from the community in our compound.

Adolescents and young people with disabilities who make a living on the street (for instance shoe shining) emphasised that the pandemic had significantly reduced their income, in some cases more than threefold, while others had found themselves completely out of work, often because authorities preventing them from working on the streets. A 19-year-old young woman with a physical disability from Bahir Dar (Ethiopia) noted:

This time, people with a disability just like me, who are visually impaired and with a physical disability working on the street, shoe shining and renting scales, are now left without income… They say it is to clean the city… It is the disabled who usually work on the street because we have no other choice. The city administration said they will not look into our case separately since it is all about beautifying the city… I am going to take down the plastic cover if it is beauty that concerns them. I have to eat after all. I get one meal a day. Last time I fainted because of hunger.

The economic difficulties associated with loss of livelihoods has a knock-on effect in other capability domains. A number of youth in Ethiopia noted that they had had to find another, cheaper place to rent, but with living arrangements that had less accessibility to services and transportation. Others underscored that their economic hardships prevented access to online education as they lacked money to pay internet fees. As a 19-year-old young woman with a physical disability from Hawassa explained:

How can I use the internet for my studies, since it requires money? I do not have any.

While there has been considerable discussion in both Jordan and Ethiopia about scaling up emergency social protection to mitigate COVID-related economic shocks, in practice, few adolescents and young people with disabilities in our sample had received support. In Ethiopia, while disability status is part of the eligibility criteria for the urban PSNP, only one youth from Addis Ababa reported that his household was a beneficiary – although this was not because of his disability status but rather the family’s poverty level. In Jordan, the families of several youth in Gaza Camp were receiving cash assistance from UNRWA, but again this was through household poverty criteria rather than to support their disability-specific needs. Generally, adolescents and young people with disabilities in both contexts were unaware of their rights to social protection, and only a minority of adolescents and young people with disabilities reported receiving support from community-based organisations or Zakat (Muslim tithing) in the form of food items and sanitary products. Other youth highlighted that they felt overlooked due to the broader invisibility of persons with disabilities in society. An 18-year-old young woman with a visual impairment from Addis Ababa reported:

When they gave aid in our area, they left us, the poor. Because we are living in a rented house, they did not consider us. They gave soaps, food, oil, and flour to the others. They were very selective on whom they gave it to.

5. Discussion

These findings illustrate the ways that the pandemic has exacerbated the challenges already facing adolescents and young people with disabilities in Ethiopia and Jordan. In particular, we find that experiences of the pandemic are shaped by pre-pandemic predictors of vulnerability, such as being poor, or a refugee or migrant. In both countries, prior to the pandemic, adolescents and young people with disabilities were more likely to be living in poor conditions, which amplifies their risks of exposure to the virus; and given their reliance on informal networks of support, the economic impact of the pandemic on family and friends further undermines their stability. Disability also intersects with refugee status to compound vulnerability. In Jordan, lockdowns have meant it is difficult for adolescents and young people with disabilities to access support services. For young refugees, with whose families cannot enrol in state-run social protection schemes, and who may rely on day-waged labour which has been impacted by lockdowns, food insecurity is a major concern.

We also find that when public services are scaled back, as they have been in both contexts, vulnerability associated with different disability types is amplified. This is most evident when it comes to health and nutrition. In both Jordan and Ethiopia, disability type also exacerbates the challenge of accessing distance learning, with materials not made available in accessible formats putting young learners with hearing and visual impairments at a disadvantage. In addition, our pre-pandemic findings had underscored that many relied on peer support to cope with school lessons and with the closure of schools this support is now not available. In Ethiopia, infrastructure for people with disabilities is very limited, meaning that youth with mobility or visual impairments must rely on others to help them; but this makes social distancing very difficult and places them at heightened risk of virus transmission.

5.1. The role of social protection

This research contributes to existing work that shows how inequalities pattern outcomes in a health crisis. During the Ebola outbreak in West Africa (2014–16), for example, the poorest people and those from the most marginalised groups were not just worst affected; poverty itself drove the spread of the disease due to overcrowding and poor sanitation (Obeng-Odoom and Bockarie 2018). Yet research in the wake of the Ebola crisis highlighted that social protection (including cash transfers, food rations, educational support and/or jobs) not only boosted the financial security of those most affected, it also restored their dignity and sense of emotional and personal wellbeing (Richardson et al. 2017). Comprehensive social protection systems that seek to redress injustice can help to promote social inclusion and prevent deep marginality in the first place.

While the experiences of adolescents and young people with disabilities in both countries during the pandemic elucidate gaps and inadequacies within existing social protection policies and programming by illuminating where and how these systems have been unable to respond to the crisis adequately, they also highlight the gap between adoption of the UNCRPD and its rights-based principles. Transformation at a systemic level is therefore necessary to deliver these rights. Social protection programming can be designed in a way that directly supports the rights of people with disabilities. To do so, it must foster inclusion and promote active citizenship; and it must place the obligation on the state to provide inclusive access to food, health care, education and other support services for people with disabilities as a matter of course (Aguilar 2017). However, the prominent role of charitable food aid, and the reliance of young people in both contexts on informal support (including the generosity of the public) during the pandemic, underline that this rights-based approach is yet to be embedded. Without placing human rights at the centre of policy and programming, social protection will be insufficient to ameliorate the inequalities that generate the challenges described in this article.

5.2. Implications for policy and programming

Our findings point to several key implications for policy and programming in both contexts. In terms of healthcare, given that adolescents and young people with disabilities in both contexts highlighted that cost barriers – both in terms of travelling to specialist health services and affording treatment and expenses related to the purchase and maintenance of assistive devices – were a key challenge pre-pandemic and exacerbated during the COVID-19-related lockdown and service closures, expanding social health insurance coverage for adolescents and young people with disabilities seems essential. In addition, recognising that many young persons with disabilities have specific health-related needs but are often socially isolated, prioritising outreach to this cohort, including sharing information about available health services and support, is important both in general and crisis settings. This echoes findings as to the impacts of the pandemic on young people by Mbazzi et al. (2021) in Uganda.

Given findings about very low access and uptake of distance education services by adolescents and young people with disabilities, there is an urgent need to invest in both low-technology and no-technology approaches to promoting the inclusion of adolescents and young people with disabilities in distance education programmes during school closures, in line with Ethiopia’s Master Plan for Inclusive Education, Jordan’s Rights of Persons with Disabilities Law and UNHCR’s Age, Gender and Diversity Policy. Low-tech approaches could include distribution of low cost tablets or mobile phone devices with voice-activated or Braille software for young people with visual impairments, and sign language interpreters on TV- or -internet based education programmes (McAleavy et al. 2020). No-tech approaches can include distribution of written materials (including in Braille as appropriate) by teachers to students and regular support either in person and physically distanced or by phone or internet for students and their caregivers (ibid). Non-formal education providers such as adolescent clubs can also play a supportive role during crisis contexts by sending learning materials via text, WhatsApp or internet, and offering the presence of a trusted adult either virtually or in-person as well as opportunities for peer interaction in safe and moderated online spaces, as has been piloted for example by UNICEF’s Makani child and adolescent empowerment programme (Malachowska et al. 2020b).

Finally, our findings underscore the critical importance of both scaling up and enhancing the crisis-responsiveness of social protection programmes. Our data highlights that adolescents and young people with disabilities were already economically vulnerable prior to the pandemic and had inadequate access to social assistance support. Yet not only was access to support not expanded in response to the additional vulnerabilities wrought by the COVID-19 related lockdowns and service closures, but in the case of Ethiopia, support through school-related stipends for adolescents and young people with disabilities was also cut off. In order to be able cover the additional healthcare, assistive devices, and transportation costs that persons with disabilities typically incur, and the fact that they are disproportionately likely to live below the poverty line, it is essential that Ethiopia’s Urban PSNP and Jordan’s National Aid Fund and the UNHCR cash transfer programme expand coverage and base payment amounts for persons with disabilities, and ensure that they are also prioritised when additional emergency-related social assistance payments are provided.

6. Conclusion

In both Ethiopia and Jordan, adolescents and young people with disabilities face both immediate and longer-term challenges in relation to health and nutrition, education and learning, and employment. Yet while the government in both contexts has been quick to respond to the pandemic, it has been slow to recognise the complex, interconnected effects of these responses for groups that were already vulnerable before COVID-19. It is essential to nest improved social protection programming within a rights-based approach if LMICs such as Ethiopia and Jordan are to ensure that progress on disability inclusion is not undone by the pandemic. This requires investments by governments and other stakeholders to develop comprehensive, better resourced systems that are attuned to the diverse experiences of adolescents and young people with disabilities and recognise their rights, rather than treating them as objects of charity. Embedding the rights-based approach also requires delivering on commitments to collect disaggregated data to inform design and evaluation of interventions; this article contributes to this important task.

Acknowledgement

The authors thank Kathryn O’Neill for her expert copyediting assistance.

Disclosure statement

No potential conflict of interest was reported by the authors.