Author's note
By sharing our experience as practitioner, with different needs than the average, we wish to promote dialogue and inspire critical thinking. We will not generalize disabilities, for each case is their own, but rather peruse through specific cases and derive from those. Disability, as a label, is a conceptualization we do not wish to address at this point. Instead, the focus will be on the fact that disability might not translate to impairment, but it can certainly heighten vulnerabilities which, in a humanitarian context, will need different attention.
“I'mpossible” is stripped of traditional conformities and intends to appeal to curious minds so that innovative solutions in the area of humanitarian affairs can be achieved. Written with heart, as it takes passion to implement law to concrete cases, especially in volatile and complex contexts, it is, nonetheless, guided by reason and pragmatism. The title plays with misconceptions towards disability and is adapted from one of the scenarios here represented.
Aiming to present a dynamic contribution to the International Review of the Red Cross, it approaches the perception of people with different needs, explores action in humanitarian settings, recommends some good practices, as well as possible solutions, and shares lessons learned. It is presented as a fictional case-study based on combined different real-life situations drawn from the author's experience, correlating international law principles with actual challenges faced in implementation. It is not an exhaustive piece, as disabilities are diverse and have different levels of complexity. Each individual case intends to illustrate a broader issue.
This presentation will, hopefully, allow readers to draw from their own experience and knowledge to provide the optimal solution to the scenario, contributing to the discussion and, ultimately, to a positive pragmatic approach when in the field.
Introduction
The following intends to stimulate thought and promote debate by giving a personal perspective to what being a person with a disability, in a humanitarian context, can mean. Considering the practical challenges faced in implementing legal frameworks and the barriers of operationalization, we intend to contribute to the dialogue and the effectiveness of an inclusive approach,Footnote 1 focusing on humanitarian urgent relief and assistance, and persons with congenital disabilitiesFootnote 2 or pre-existing different-needs (we will not elaborate on disabilities as consequences of armed conflict).
The article presents its reasoning as testimonies, through the lenses of persons with disabilities, in context-specific situations – inviting the reader to follow the stories of several characters. These represent real people and the stories, actual events and contexts experienced. It evolves in two parallel axes, considering the author's background and challenges witnessed or experienced in Hiveland,Footnote 3 a fictional region of four countries, depicting a space where events took place.
The geographical representation of west Apolegma, east Ballan, south Reef and north Doto serves the purpose of illustrating the nature of conflict, the movement of people and the scope of application of different legal frameworks. Hiveland is the scenario for the lives of 40-year-old Amelia, humanitarian affairs officer, specialized in protection; of Enow, 14 years old, who was born deaf and lost his leg when he was 12 years; of Ting, 17 years old, blind from birth; and of the siblings Malaika, aged 15, younger sister of 17-year-old Moon, who has an undiagnosed autistic syndrome disorder (ASD) and Down syndrome. Their names have been changed and their stories adapted to fit the current format.
Reef's protracted armed confrontations between the ethnic groups Coral and Cowry, and their strife with the elected Government had contributed significantly to the instability and insecurity of the region. Cowries were organized, well-funded and had effective control of southwest Reef's territory, giving them access to multiple supplies. Corals were scattered in the north and regularly ventured in aggressive incursions into neighbouring Ballan, (mis)appropriating its resources to support their fight. Reef's northwest border was shared with Apolegma, a thriving country, considered neutral and often asked to mediate negotiations and host regional summit meetings. The internal conflict affected, especially, Ballan that was constantly on high alert and had to strategize defensive military operations.
Apolegma and Ballan shared a border between them and both welcomed people fleeing the conflict. The countries established accompanied-migration-routes and Apolegma had a border temporary transit centre, the Tuna Centre. Doto, to their north, hosted the only refugee camp in the region, Orca Camp. The three countries’ official policies had a strong component of child protection and support of children on the move.
Amelia is the common thread throughout the narrative, as she and a multidisciplinary team accompany the children traversing to safety, when conflict escalates and transforms. Each chapter follows the individual journey of our characters and represents a stage of the emergency response. The following is a way of presenting a serious and complex issue in a personalized and narrative way.
Chapter I: “War, as a thing only fit for beasts, and yet not practised by any kind of beasts so constantly as by man, they regard with utter loathing” Footnote 4
Of law and war
War is not civilized.
This simple truth has helped Amelia go through her professional life with some inner balance, while realizing limits to the effectiveness of international law.
People have relinquished their own violence in order to live collectively. Repossessing their violence to fight is negating civilization. War is not civilized. However, the rule of law establishes duty-norms, those participating in war shall abide by, and grants “equal and inalienable rights” for “all members of the human family”Footnote 5 – simple truths that need to coexist in highly complex scenarios.
In armed conflict, we need to be aware that, despite theoretically being granted the same protection rights, not all civilians are equal; not all civilians in need of protection have the same needs. When designing and programming a humanitarian response to armed conflict, we must consider the discriminatory impact hostilities have on civilians and people hors de combat and be conscious of the diversity of the civilian population and the heightened risks for those more vulnerable. People with specific-needs “shall be the object of particular protection and respect”.Footnote 6
It is the systematic acknowledgement of this diversity that will enable an effective protection of the principle of human dignity, outlined under the Geneva Conventions. An inclusive approach in programming will improve operationalization and reduce vulnerability risks. Universally accessible humanitarian action does not necessarily translate to equal access to relief and protection but rather to a context-specific equitable one. The requirement of adequate specific patterns of protection of persons with disabilities, in armed conflict, derives from their heightened vulnerability to adverse contexts. A rapid adjustment of Standards to context-specific needs is crucial in implementing legal frameworks to complex and volatile scenarios. The design of an inclusive humanitarian responseFootnote 7 plan does not need to be exhaustive but requires those designing it to be sensitive to the possibility of specific-vulnerabilities, especially, if there is no disaggregated data available when assessing humanitarian needs. It is impractical to include all eventual needs for protection and assistance but there is an absolute necessity to be prepared to rapidly adapt the approach, and that has to be reflected in the design so it can be operationalized.
The diversity among those with disabilities is widely varied and so is the terminology. The fifth paragraph of the preamble in the Convention on the Rights of Persons with Disabilities (CRPD) recognizes “that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”.Footnote 8 It is important to navigate disability language, both in legal and psychosocial contexts. To update legal terminology, we would need to keep doing it as often as circumstances, social perceptions and warfare evolve. As practitioners, we believe in the spirit of the law and advocate for interpreting available legal frameworks with contemporary perspectives. In this article, while for consistency purposes we use persons with disabilities, we chose to use the term people with different-needs or specific-needs to conceptualize human beings with their own identity and particular characteristics – individuals that are constantly adapting to the environment around them, an environment that is not adequate to their needs. We believe this to be a value-neutral choice in wording and reiterate that we are sharing a personal argument and presenting personal experiences. Using value-neutral terms is important in communicating about the subject, but, more importantly, is to refer to people that have a disability in a way they would prefer. Objectifying is not right, nor is it to tell others how they should identify themselves. The choice of words in the stories shared have, in consideration of this, employed the terms used by the people depicted.
Chapter II: “Had I known you were impaired, I wouldn't have allowed them to hire you”
Institutional barriers, stereotypes and misconceptions
Amelia had been newly hired by an international organization, Isopod, as humanitarian officer after going through the recruitment process like all other candidates. Although she did not have to, she mentioned in her application that she had a disability and specified that she would need reasonable accommodation.Footnote 9
Diversity and inclusion must be a reality and not only a theoretical well-intended directive included in policies. The adoption of a disability-related human-resources strategy enables organizations and employees with specific-needs to actively find adequate solutions for optimal performance of professional duties and clarifies responsibilities. A healthy, supportive and respectful work environment mitigates other barriers, such as physical (like geographical) and circumstantial (such as security measures and guidelines), and allows professional staff with specific-needs to better accomplish results.
Amelia was asked to lead a donor's meeting – not because she was the humanitarian coordinator officer for the protection cluster, but because funding would be more likely if the plea came from a “handicapped”. Whale Foundation was an informed donor who understood the challenges and complexities of Isopod's programme. Humanitarian donors’ awareness is, indeed, crucial – funding can be scarce and often insufficient to address the heightened and uncertain challenges of an emergency. Objectification of persons with disabilities in the workplace is still a reality. There is a tendency to perceive someone with specific-needs not as a competent professional but as a poster-hire for funding or someone fit to fill the required quotas.
The balance between disability-value and respect for the individual must be achieved. People must be treated with dignity, independently of their physical, mental or health condition. And their reality should, indeed, be valued. Humanitarian action and civilian protection can only be inclusive if implemented and operationalized without prejudice or preconceived ideas and notions. Mainstreaming disability-related issues, throughout the emergency process, will promote compliance with international standards and other regulations, reduce stigma and misperceptions, and contribute to the efficiency of implementation and the achievement of positive results.
Isopod operated in all four countries of Hiveland with various programmes. One of Amelia's responsibilities was to coordinate the design and implementation of a more inclusive child protection regional strategy, considering education and child protection in emergencies. Among other aspects, a comprehensive protection programme, containing an inclusive education and adequate emergency preparedness, was set in motion, in Apolegma through Eel School, in south Ballan with Fin School and Fugu School to the north, and Goby School in Reef. Alongside an inclusive curriculum, all schools had an emergency contingency plan, adapted to the specific needs of students attending.
Involved in the different stages of the process, from planning to implementation, were several stakeholders. Some local and regional entities and organizations regarding disability, such as specialized government or official bodies, the regional confederation of organizations of persons with disabilities, organizations representing families of persons with disabilities that are not able to advocate for themselves, associations for the protection of childhood and youth with active inclusive programmes and specific-disability groups. There were members of the schools, representatives of the students, and members from the boards of education of the different countries. Also involved were non-governmental organizations, security forces, local and regional authorities, security officers and different committees and units from the international agencies present in the region. An architecture and civil engineering company was consulted to address physical barriers and a disability focal person in Reef's armed forces was appointed. An inter-agency memorandum of understanding (MoU) regarding the gathering and sharing of specific disaggregated data was signed and facilitated both the joint design of the plan and its implementation.
The ad hoc donor's meeting with Whale Foundation resulted in the funding of a comprehensive budget that would allow the feasibility of the operation. Responding to a needs-specific emergency requires sufficient funds to mitigate barriers arising from the heightened vulnerability of children with disabilities. A transparent and fluid communication with donors is an added value when operating in volatile environments, even more so when responding to an emergency with unpredictable variables. Specialized psychological first aid, adapted transport for evacuation, communication tools, appropriate educational material, technical aid equipment, adequate water, sanitation and hygiene (WASH)Footnote 10 and health measures, and accessible services, were all part of Isopod's disability-focused humanitarian relief strategy.
Chapter III: “Load them onto the lorry, load them on to the lorry!!”
Challenges in urgent humanitarian relief operations
Enow was born deaf and he never considered himself to have a disability. Nor did his community see him as a disabled child. He lived in Ballan's south border village Lamprey, with his mother and older brother. His father was Coral and succumbed in battle when the lads were very young. Communication was natural within the family and their community. Enow used non-formal sign language, written or drawn notes, images, and facial and body expressions. He was a happy lad, very resourceful and athletic.
When he was 12 years old, he lost his leg because he could not hear the warnings of his mother who was outside cooking, when an unidentified armed group attacked the village. He was unable to run to safety and was injured when the house collapsed on him. Children with sensorial or intellectual disabilities face the additional challenge of not perceiving threats and dangerous situations, even if there is a previous warning.
Enow now understands he has an impairment: having to move around with technical aids, he needs to compartmentalize two basic daily tasks: walking and expressing himself. He was offered different types of equipment but feels more comfortable using the one he has, an improvised “crutch” made for him by his uncle – a flawless crafted orthosis-like wood support that enabled Enow to walk swiftly and even do sports. We should always ask and never assume what is best for persons with specific-needs. After the attack on Lamprey, Enow left to attend nearby Fin School. He wanted to be a farmer.
The situation was worsening as border armed movements were in place. Reef's Goby School and Ballan's Fin and Fugu schools were being evacuated to Eel School, in neighbouring neutral Apolegma, as a precautionary measure. The operation, led by the Regional Body for Child Protection, was being coordinated on the ground by Amelia. She would also accompany operations in Ballan.
As the man in uniformFootnote 11 shouted outside Fin School, Enow could not hear him but inferred, from body language, an aggressive posture and this did not inspire confidence nor was it reassuring of a journey to safety. The perception of security forces and law enforcement differs, and this should be considered when interacting with vulnerable people and, more so, with children in humanitarian relief operations.
Amelia understood the man in uniform's reaction to an unexpected situation. A disability focal person had been appointed in Reef's armed forces and nowhere else. Ballan's man in uniform was being confronted with an unusual emergency to which he probably had not been prepared or trained for. Technical training is essential but just as crucial is to be psychologically prepared, as individual and professional, to be part of this context-specific humanitarian action. He was not able to realize that the children themselves had organized their own evacuation, according to their needs and were orderly(ish) getting into the assigned transports, despite the many challenges that this task presented.
In addition to introducing disability-related specifications to jus in bello principles, civil and military coordination/cooperation (CIMIC), and humanitarian military intervention (HMI) should be able to adequately interact with persons with disabilities. Not only should warfare be conducted with recognition of the diversity of the civilian population that must be protected, but the security and armed forces involved in humanitarian affairs or peacekeeping missions must also be aware of the possibility of having to interact with these differences.
Evacuation is tense and can be difficult, especially in the context of armed conflict. Isopod schools’ emergency plan was the result of a collaborative work and multisectoral approach.Footnote 12 Despite the holistic design and programming, when implementing the plan, conditions had changed and adjustments had to be made. Reef's internal conflict had escalated and was overflowing into Ballan. Ballan's armed forces established several area defenses in the south and west borders. Fin and Fugu students could no longer be evacuated through the Tuna transit centre as initially planned. Evacuation routes and safety corridors had, hence, to be renegotiated taking into consideration also the students’ specific needs. Orca Refugee Camp, in Doto country, would temporarily host them and the journey further north would require other arrangements and logistics. To safely endure a longer trip, different transport had to be procured and safeguarding escorts also had to be renegotiated. Physical and mental health, sanitation and hygiene measures, and food and non-food items had to be re-adapted, especially in respect of girls. Families and other support systems were kept updated and informed of the well-being of their children.
Chapter IV: “You don't need to shout, I am blind, not deaf”
Dignity in humanitarian assistance
Ting was born blind and did not have any mental visual references. As such, she interpreted her environment with intellectual representations and was very keen to adapt to new places, people and experiences. Ting had a curious mind, she loved sciences, excelled at mathematics and was a bright student at Fugu School.
At Orca Refugee Camp, in the turmoil of arrival, she accidently got separated from the Fugu group and was deposited Footnote 13 in a space with other “disabled persons”. She was never asked anything, nor who she was or where she was from. No one ever addressed her directly. Other people just assumed she belonged there.
When Amelia located her, Ting was disoriented, but even more appalled with the way that camp officials treated her. Reunited with Isopod's other children, she was apologized to, very loudly so she could understand the official's regret.
Perception of dignity is the result of our own cognitive processes. The unique experiences of each of us, as individuals, will determine how human dignity is perceived – ours and the dignity of others. Respect for dignity, in this particular situation, encompasses communication and not acting like the person is not there. It is how you are considered, rather than what or how much is being provided to you, that dignifies you as a person, as a human being. For children with different-needs to be present in the moment, within the limits of their own capacities, it is paramount they are informed about the process, their surroundings, their rights and their options. The psychosocial effect of ill-communication, and the dismissal of the individual, can have devastating consequences.
Despite official camp planning, Orca was, in fact, not equipped for such an influx of people in transit and, less so, children with disabilities. Among others, child-friendly spaces were not prepared for different needs as, for example, sensorial overload and physical access were not taken into consideration. WASH and health facilities in the refugee camp did not consider intersecting elements such as gender, disability, or cultural or religious traditions. The Community feedback and complaints mechanism was not accessible to Ting, nor the available educational programme.
Chapter V: “This is torture, I am possible! I will not let them take him away”
Context-specific approach and positive discrimination
Malaika and Moon lived in Krill, a small village in northeast Ballan, since their parents’ death. She would take him with her to school and he would sit curiously with the other children, always smiling. When their grandmother fell severely ill, family tracing produced no results for other relatives. They were referred to Isopod's protection programme as result of the inter-agencies’ cooperation and disaggregated data collection and sharing agreement. The two siblings were to integrate into the group at Orca Refugee Camp and would be relocated with the others in Apolegma's Eel School.
They were separated from each other after arriving at Orca. Malaika, placed in a safe haven structure for girls, was desperate for news about her older brother. Moon was left in registration, despite the fact that boys are also at risk for sexual violence and abuse, particularly if their vulnerability is heightened by disability or they are unaccompanied or separated from their families. Moon had completely lost sense of his environment as he was overwhelmed with everything new. His comorbidity implied some deficit in reciprocal social interaction and required stability and familiarity of his surroundings. It is vital to maintain a certain consistency or some elements of consistency amid the havoc, to avoid further psycho-emotional distress. Travelling from Krill to Orca, Malaika was by his side, but the fact that he was separated from his only remaining reference, and left alone in an unfamiliar place with strange people, led to a shut down.
When Amelia was called to formalize Isopod's guardianship of the siblings, she clarified that Malaika was Moon's caregiver and that they only had each other. Keeping them together was essential, as a family unit in need of specific protection. In Orca Refugee Camp they would have to be separated according to age- and gender-appropriate protection guidelines for unaccompanied minors, but in cases like that of the M siblings, the risk assessment of possible liabilities should always be considered. There needs to be equity especially when protecting children with intellectual, cognitive and psychosocial disabilities. We must aim for a balance when implementing corresponding safeguarding protocols and practise a context-specific approach whenever there are multiple and intersecting factors.
Malaika reported that she felt that she was being tortured when a camp officer was trying to enforce the guidelines. This reiterates the importance of the principle “do not assume, ask”. Operational and attitudinal barriers also affect children's support systems. The imposition of a standard without due assessment was being translated into a declaration of ineptitude. Despite her protests and fair arguments, it was assumed that Malaika could not care for Moon and his needs. It was impossible for her to care for her older brother and he would be better accommodated elsewhere. The deep impact of this lack of consideration was inhumane, cruel and uncompassionate.
An additional level of complexity to this case was the fact that Moon would soon be turning the age of 18 years, and risked that, no longer being considered a child, he would fall through the cracks of protection frameworks. Amelia was able to negotiate an exception and guarantee adequate temporary accommodation for the siblings. However, she felt these specific cases should not constitute an exception but fall into a possible scenario of positive discrimination, already predicted in the design of the humanitarian relief operation.
Chapter VI: “They don't see me”
Child-focused conflict analysis
After their sojourn in Orca Refugee Camp, Amelia and the team reached Apolegma with the children. Eel School was prepared and was going to host Isopod's other students from Fin, Fugu and Goby schools, for an undetermined period of time.
Reef's Goby School was located in a Cowry-controlled area and although there were students from other ethnicities, the majority were Cowries and some of them had taken part in hostilities. Isopod's intervention in Goby had to be negotiated with two of the main parties involved in the conflict: Cowry de facto authorities and Reef's elected government. It was authorized by the latter, and justified nationally by the immediate need to protect Reef's children from the deteriorating situation and to prevent them from continuing being recruited into the conflict. There was an in-house reconciliation project, part of the wider national disarmament, demobilization and reintegration (DDR) programme,Footnote 14 funded by the same donor, Whale Foundation, targeting children associated with armed forces and armed groups. Goby School was prima facie a civilian object. Nonetheless, an agreement was celebrated between the three key actors, the Government, the Cowries and the Corals, to guarantee a safety zone for the school and an accessible humanitarian corridor. This allowed the children to reach Apolegma safely and without major incidents.
A senior Whale officer was to visit Eel School. A concept note for a special reception was written by the unit in charge of welcoming and accompanying the Foundation's representative: girls would greet the donor with singing and there was to be a football match played by the lads with physical disabilities. Funding for the activity was approved by the unit's project manager. However, the children were not asked if they wanted to or knew how to sing, nor were they consulted about playing a sport that they had never played before. Gender bias assumptions and disregard for cultural and religious values are not acceptable.
One of the teams would be comprised of young men with acquired physical disabilities (injuries resulting from the armed conflict) who had been through a process of physical rehabilitation in Reef's Goby School. In spite of the effort to physically rehabilitate these lads, there was not a parallel psychosocial healing process. Tension was high as some of the team members were formerly part of an armed group, responsible for the land mines that caused the injuries of several others. Aggravating this volatile imposed scenario was the fact that the opposing team was mainly composed of Corals, including Enow, who refused to play and suggested that the Fin group performed some traditional dances.
There had been no child-focused conflict analysis, or any assessment of the psychosocial effect of the physical consequences of armed conflict. The unit responsible for the event could not see past the children's disabilities. The awareness training for Isopod's professionals had failed. The unit was unable to distinguish and, consequentially, respect different religious, ethnic and cultural groups within the student body.
Humanitarian accountability as a concept has been evolving and constantly adapting to new emergencies. Isopod's policy determined a balance between powers, as its action was to be accountable to governments, donors and other higher parties, in the same measure as it would be to communities and beneficiaries. There was to be a shift in that balance whenever there was a conflict of interests that might hinder the best interest of the children – especially those most vulnerable.
Deep changes in perception are still needed: people must be treated with dignity, independently of their physical, mental or health condition. Humanitarian action and protection of civilians in armed conflicts can only be inclusive if implemented and operationalized without prejudice or preconceived ideas and notions.
Personal note
Ting went back to Ballan and is currently a mathematics teacher at Fugu School.
Malaika and Moon were resettled in another country. Malaika became a doctor and Moon goes to his own school and has regained his smile.
Enow was shot dead on his way home from school. His brother cares for their mother and attends to the small family farm.
This is for all of them, and all the others, who are possible.
