Diversity and Inclusion of people with a disability

Çaglar Akgungor (AKUT)

Disasters highlight the human diversity in a very dramatic way: A person’s or a group’s characteristics translate into different levels of vulnerability to disaster risks, which in turn lead to an “unequal distribution” of the disaster impact. While some hazards like the air pollution are said to be more “egalitarian” than others, rapid onset and large scale events such as major earthquakes, floods or hurricanes cause the biggest harm and loss on the “less-privileged” or the “marginalized”. The latter’s exposition level to risks is also usually higher and their capacity to mitigate those risks is lower due to several factors. A low level of income is often mentioned as the prevalent factor since it may limit seriously people’s ability to access to risk information and to take the necessary measures to reduce their exposure. Poverty not only signifies a limited access to disaster-resistant infrastructure and services like education (more access to information) that would increase the protection level, but also a diminished capacity to recover after the disaster. On the other hand, the economical situation is often intertwined with other human conditions or characteristics in shaping vulnerabilities: Combined with socioeconomic conditions, gender, age, disability, health condition, ethnicity and other particularities generate a class of “most vulnerable” which is disproportionately affected by catastrophes’ impact.

Dealing with the human (and social) diversity is a daunting task for the public sector, which continues to be the primary actor in the field of disaster risk reduction (DRR) and disaster management. “Most public policies and policy process, disaster policies originate in some bureaucratic agency or professional epistemic community and most depend for stamps of approval (certification) and implementation on one or more bureau of professional communities.” (Bobrow 2006) Disaster policies are no exception to this pattern, which generally result in “one size fits all” plans and actions that may exclude the “disadvantaged” ones. Unfortunately, the most disadvantaged groups are also the least equipped for influencing policy-making processes, so the need for the recognition of the human diversity (and the associated cultural variety) may not become a priority for those who make or implement disaster-related policies until a dramatic series of events make the society aware of this particular problem. A positive development at the international level in this respect is the rising trend of “inclusiveness”, in part as a consequence of recent major disasters that have made the problem more visible, but also as a result of decades-long efforts by advocacy groups.

The Sendai Framework for Risk Reduction, drafted in March 2015, is the most recent, comprehensive framework that clearly emphasizes the need for inclusion in the disaster risk reduction. Adopted by 187 UN member States, it brings the concept of inclusion as a fundamental element for reducing disaster losses: “Disaster risk reduction requires an all-of-society engagement and partnership. It also requires empowerment and inclusive, accessible and non-discriminatory participation, paying special attention to people disproportionately affected by disasters, especially the poorest. A gender, age, disability and cultural perspective should be integrated in all policies and practices, and women and youth leadership should be promoted.” (article 19d) The Sendai Framework also stresses that inclusiveness cannot be reached by a top-down approach, and it requires active presence of the possible disadvantaged groups who would be given the opportunity to express themselves and to mobilize their resources (intellect, knowledge and skills) in order to contribute to the design and implementation of the disaster risk reduction plans and actions. (article 36).

Although the Sendai Declaration’s focus is mainly on the reduction and mitigation of the risks and building resilience, its recommendations on inclusiveness can (and should) be extended to any phase or activity of the disaster cycle. Notably, post-Sendai declarations follow this trend. For instance, the Dhaka Declaration on Disability and Disaster Risk Management that has been drafted in December 2015 has urged governments around the World “to ensure the participation, inclusion and leadership of persons with disabilities within all disaster management programs” (article 1) (Dhaka Declaration on Disability and Disaster Risk Management 2015) The recognition of diversity and the need for inclusiveness has also been considered as a “key finding” by the World Humanitarian Summit in May 2016, which shows that inclusive approaches will become part of the humanitarian policies and actions as well (World Humanitarian Summit Commitments to Action 2016).

The well-known proverb “a chain is only as strong as its weakest link” is very much true with respect to vulnerability to disasters. It is clear that “a community can only be safe when all of its members are able to cope better to avert disasters” (INCRISD 2014). But a superficial acknowledgment of variety will not help much. Inclusion is a rights-based notion that should not be seen as “optional”; it is neither “positive discrimination” nor an attitude of compassion. Inclusion is about equality of rights and opportunities for all those exposed to the same risks. To this end, it is necessary to recognize diversity; to admit that all social groups should benefit from the same rights and services vis-a-vis disasters; to create the mechanisms that will ensure participation to disaster risk reduction effort; to empower the “marginalized” ones both from the point of knowledge and skills so they could participate and contribute. Naturally, the last step is to develop tailored approaches that will encompass all the stakeholders. In other words, it is about replacing “one size fits all” developing approaches to disaster risk reduction and disaster management by “universal” ones.

Disability

Most people associate the term “disability” with some form of physical impairment and a quasi-permanent state of incapacity, which is likely to explain why the wheelchair icon became the omnipresent symbol of disability. The reality is that this term points out to a wide spectrum of physical or mental conditions that may also coexist and cause very complex situations. On the other hand, medical perspective alone is hardly sufficient for understanding disability. Looking from a societal point of view, disability also comes to signify a particular life style, a different way of thinking, experiences and culture as well. In other words, it is a human condition rather than a pathological state.

Notably, the “social model of disability”, which claims that the disability results from the reaction a society gives to difference, is increasingly replacing the medical model, which focuses on the difference itself. According to the social model, individuals become disabled when the society fails to recognize human diversity and to lift the barriers that restrict their options and action margin in life. While the term barrier is often associated with physical obstacles such as the lack of adapted infrastructure or accessibility solutions, adverse socioeconomic conditions and shortcomings in terms of support may also be considered as barriers. The latter, nevertheless, is not limited to what is “tangible” or directly measurable: Prejudices, beliefs, perceptions, negative attitudes, stereotyping or discrimination continues to prevent people with disabilities from enjoying a “full life”.

The social reality described above affects the life of a significant part of the World population. Despite being referred as “the largest minority” in the planet (15,6 % of the World’s adult population according to the World Health Survey; 2,2 % having significant difficulties in functioning) people with disabilities have difficulties in enjoying their fundamental rights and in benefiting from the same services and opportunities offered to the rest of the population. Like other disadvantaged groups, people with disabilities around the World suffer from “inadequate policies and standards, lack of provision of services, problems with service delivery and lack of consultation and involvement”; among other problems (WHO 2011).

Disability Inclusive Disaster Risk Management (DiDRM)

People with disabilities are disproportionately affected by disasters and mass-emergencies. Recent and increasingly better documented cases such as the Indian Ocean Tsunami (2004), Hurricane Katrina (2005), the Haiti Earthquake (2010), and the Tohoku Earthquake (2011) helped bringing the attention to the hardships encountered by people with disabilities during and after catastrophes. The dramatic fact is that not only the rates of loss and injury were considerably higher among the disability communities, but persons with disabilities also experienced severe problems with the post-catastrophe services such as response and emergency sheltering, which failed to respond to their specific needs (Kang and Stough 2015). In other words, people with disabilities cannot receive the same level of protection and support compared to the rest of the population. This situation will likely to remain unchanged unless the disaster risk management becomes a truly inclusive process.

Disaster risk management (DRM) involves risk mitigation, preparedness to disasters and disaster management. It is “a way of thinking and acting around risk” which goes beyond infrastructure-based solutions and focuses on society, emphasizing the vitality of improving people’s capacity to cope with disasters and building social resilience, in order to minimize the potential effects of disaster risks. These goals, however, cannot be reached through “generic” DRM frameworks designed for the “average citizens” without significant health issues, who are supposed to possess adequate resources and a sufficient literacy level to access information. Inclusiveness, therefore, becomes necessary to bring under the same protection umbrella the ones excluded by the “one size fits all” attitude. In this sense, DiDRM aims to compensate the lack of adapted strategies for individuals with disabilities.

The UN Convention on The Rights of Persons With Disabilities (2006) stresses that:”State Parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.” (Article 11, Situations of risk and humanitarian emergencies)

The Dhaka Declaration on Disability and Disaster Management (2015) urge governments to “Implement the Principles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), other human rights treaties to ensure the participation, inclusion and leadership of persons with disabilities within all disaster risk management programmes.” (Article 1, Ensuring people centric approach)

It is important to retain that DiDRM is a rights-based approach and based on the principle that people with disabilities should enjoy the same level of information, support, service and they should be given the same range of options offered to the rest of the population facing risks and disasters. On the other hand, it is equally important to retain that DiDRM is not only about receiving services, or benefiting from various forms of protection. It also involves active participation to the design and to the implementation of DRM actions by people with disabilities, who know best their needs but also capabilities and strengths.

DiDRM’s key principles can be summarized as follows:

  • Participation: People with disabilities should participate to planning, implementation and monitoring of the DRM activity. This suggests that the barriers to their participation should be lifted and the opportunity for dialogue be created (they should be empowered first if necessary, for example in terms of knowledge).
  • Non-discrimination: The exclusion factors preventing people with disabilities’ from being part of the DRM activities and services have to be eliminated.
  • Accessibility: Disaster risk information, participatory DRM activities and all DRM-related services should meet the accessibility needs of various disability groups.
  • Tailored solutions: People with disabilities should not be considered in broad categories and the complexity of disability phenomenon should be taken into account in the DRM processes. Specific solutions should be developed for the widest range of possible cases.

In Practice: Lessons Learned on DiDRM in the EDUCEN Case Study of Istanbul, Turkey

Although states are the leading actors of DRM, recognition of diversity and inclusion cannot be achieved through public sector action only. The adoption of an inclusive attitude towards people with disabilities is also a must for all stakeholders, including NGOs and other types of civil initiatives working in the domain of disasters and mass emergencies. The difficulty is that the road to inclusiveness is not without pitfalls, despite the apparent simplicity of the DiDRM principles as summarized above. In this sense, we believe some lessons we have learned during EDUCEN Project Istanbul Case Study may help other organizations in their DiDRM efforts.

Focus group meeting with participants with sight impairments
Focus group meeting with participants with reduced mobility

As explained in detail in the EDUCEN Istanbul Case Study Manual AKUT Search and Rescue Association has aimed at developing a disability inclusive public disaster preparedness program. From AKUT case study team’s perspective, the main objective then was to make the disaster preparedness materials accessible for people with sight and/or hearing impairments while incorporating disability-specific information into the content (for 3 selected groups, persons with sight impairments, persons with hearing impairments and those with reduced mobility). Consequently, the action has debuted as a feedback collection and formal adaptation work. A series of extended focus group meetings have been organized in order to review AKUT’s existing program and content, in collaboration with disability organizations.

Focus group meeting with participants with hearing impairments

It would be convenient to say that a true reflection on the concept of inclusiveness has only started to develop following the focus group meetings, where the Istanbul case study team and the other participants from AKUT’s public training unit came into close contact with the disabled participants. Interaction and dialogue with disabled shareholders has altered AKUT volunteers’ perceptions of disability, the Istanbul Case Study’s focus shifted to inclusiveness, repositioning accessibility as merely one of its pillars. The case study team also made the following observations:

Conveying information to people with disabilities, even in accessible formats, do not make a training program inclusive per se. Genuine inclusiveness happens when people with disabilities can take part in any section and/or any phase of the program by their own choice and assume any role offered to other volunteers. In other words, the host organization itself has to become inclusive. For an ONG like AKUT, this would require a significant effort at different levels, starting by the improvement of physical accessibility to the association’s premises, to the modification of the recruitment and orientation process (use of online learning tools for people with reduced mobility or sign-language translation for people with hearing impairments).

Inclusion is a goal that requires commitment on behalf of the organization aiming it. Unfulfilled promises and impertinence are causes of frustration for persons with disabilities, who would also be discouraged from participating to other actions in the future because of such negative experiences.

The tendency to see inclusion as an “empathetic process” is quite common. Nevertheless, inclusion is not about empathy, which can be described as the drive and the effort to understand another. This capacity is certainly relevant in the context of inclusiveness, yet the issue of DiDRM cannot stand on an individual capacity (that people might not have developed enough, also). Inclusion is based on the principle of equality between human beings and the associated human rights. People with disabilities have right to receive whatever services AKUT offers, just as they have the right to participate to any activity of the association they consider appropriate.

Accessibility has several dimensions and forms depending on the context and the type of disability. There is no single “generic” accessibility solution. Making a printed booklet accessible for people with total hearing impairments and making a training hall accessible for people with reduced mobility require different approaches, techniques and instruments. Persons with disabilities as end-users are the best guides on which tool to use. It is critical to take their suggestions into account. Members of the Istanbul Case Study team, for example, have realized that most of their ideas about accessibility tools and options were based on false assumptions.

Regarding the accessibility issue, people with disabilities’ attitude is generally realistic, as they limit their expectations depending on the context. They appreciate their “non-disabled” partners’ efforts for ensuring accessibility. They also tolerate, even compensate for deficiencies, provided that they consider the partner’s efforts as sincere. As for the accessibility of training materials, the most efficient strategy is to seek for “usefulness”. For example, a visual element does not have to be orally described for people with sight impairments if it does not have informational value.

DiDRM also requires commitment from people with disabilities, in the sense that their systematic presence in the DiDRM programs incite the non-disabled individuals to change their perspective on disability. People with disabilities are not necessarily dependent on others during disasters, and many are perfectly capable of assuming various roles in the DRM actions. Yet, their is need for demonstration of this capacity, which requires continuous, active participation by people with disabilities.

DiDRM is about mutual learning as well. No matter how efficient an organization is in the disaster preparedness and response, it needs the life-knowledge (and support) of people with disabilities to become inclusive. This is only possible through integration and dialogue.

References

BOBROW Davis B., “Social and Cultural Factors: Constraining and Enabling”, in GOODIN Robert E. et alii, The Oxford Handbook of Public Policy, 2006, Oxford University Press, New York, 580-581

Dhaka Declaration on Disability and Disaster Risk Management, retrieved from http://www.preventionweb.net/files/47093_dhakadeclaration.pdf World Humanitarian Summit Commitments to Action, p.5-6, retrieved from https://www.worldhumanitariansummit.org/sites/default/files/media/WHS%20Commitment%20to%20Action_8September2016.pdf

INCRISD South Asia, Inclusive Disaster Risk Management: A Framework and Toolkit for DRM Practitioners, 2014, p.1-2

World Health Organization, World Report on Disability, Geneva, 2011, p.29, p. 144-147

Kang D. and Stough, L.M., “The Sendai Framework for Disaster Risk Reduction and Persons With Disabilities”, International Journal of Disaster Risk Sciences, Vol 6 (2015), p.140