Navigating through the Challenges of Disability Inclusion midst the COVID-19 Pandemic | truCSR
Written by: Samreen Saify
Compiled and Edited by: Rebecca Shibu
According to WHO, around 15% of the world population, i.e. 1 billion people suffer from one or another form of disabilities, which means that these people spend their lives with a physical, sensory, motor, cognitive or mental health impairment that is significant enough to affect their daily lives. Disability is not a stand-alone concept. It is dependent on a variety of personal, health and environmental factors. Persons with disabilities, often a time, do not have equal access to health care, education, and employment opportunities as their able-bodied counterparts. Moreover, a majority of them do not even receive disability-related services that they are entitled to, sometimes due to lack of awareness and sometimes because of availability, affordability and accessibility issues. However, in recent years, with growing consciousness towards their rights and issues, efforts are being made, by both international and national actors, to make institutions, processes, and society at large, more inclusive. These initiatives have provided a much-needed space for persons with disabilities to exert their rights besides bettering the lives of millions yet, much remains to be done. It's important to note that the term "persons with disabilities" is indicative of a diverse group of people with a wide range of needs and that we do not uphold ableism as a standard.
Background
Persons with disabilities are among the most marginalized groups in the world. Their lives are mired with inadequate access to healthcare facilities, reduced educational and employment opportunities and consequent poverty. On 3rd December of every year, International Day of Disabled Persons is observed to bring the issues and concerns around disability to the forefront. Initiated in 1992 by a United Nations General Assembly Resolution, the idea behind this initiative is to promote the rights and well-being of persons with disabilities in all aspects of society and development besides increasing awareness about inclusive practices.
The theme of disability day this year is "Building back better: towards an inclusive, accessible and sustainable post-COVID-19 world by, for and with persons with disabilities". The annual theme provides an overarching focus on how society can endeavor for inclusivity through the removal of physical, technological and attitudinal barriers towards people with disability.
To further advance the rights of persons with disabilities, several International and National initiatives have been taken over the years, to ensure inclusion and tackle the issues of affordability, accessibility and availability. The major being The Convention on the Rights of Persons with Disabilities adopted on the 13th of December 2006. The convention aims at changing the attitudes and approaches towards persons with disabilities; from viewing persons with disabilities as "objects" of charity, medical treatment and social protection towards viewing persons with disabilities as "subjects" with rights, who are capable of claiming rights and making decisions for their lives based on their free and informed consent as well as being active members of society.
The Sustainable Development Goals (SDGs), also known as the Global Goals, were also adopted by all United Nations Member States in 2015 as a universal call to action to end poverty, protect the planet and ensure that all people enjoy peace and prosperity by 2030. By taking the pledge to "leave no one behind", member states committed themselves to "fast track the progress for those furthest behind first". Disability has been invoked both implicitly and explicitly in various parts of the SDGs. Specifically, in parts pertains to education, growth, employment, inequality, accessibility of human settlements. Persons with disabilities face numerous challenges and barriers that severely impede their ability to participate in society on an equal basis. The aim of the aforementioned initiative is to build an inclusive, accessible and sustainable world.
Persons with Disability in India
In India, Disabled Population as per census 2011 stands at 2.21% of the total population. Among the disabled population, 56% are males, and 44% are females with the majority of them (69%) residing in rural areas. To ensure their assimilation in the mainstream society several national provisions have been adopted by the Indian government to protect persons with disabilities from various forms of discrimination, exclusion and marginalization. Such as - the Rights of Persons with Disabilities Act, 2016 along with the Rights of Persons with Disabilities Rules, 2017. There are several other acts in place to ensure effective participation and inclusion of persons with disabilities in society and to safeguard the equality of opportunity and adequate accessibility.
Disability is a complex phenomenon that reflects the interaction between the features of an individual’s body and the characteristics of the society in which the person lives in. The accessibility to various healthcare services is dependent on not only individual factors but also on various environmental or societal factors. In a developing country like India, the care and management of rare conditions become immensely difficult due to the lack of infrastructure and trained medical supervision for diagnosis and monitoring. The chances of misdiagnosis are high and the supportive treatment to enhance the quality of life, when and where available, is expensive. Despite the presence of several national provisions, inequality, marginalization, oppression, abuse, poverty and so on pose severe impediments. Availability and utilization of rehabilitation services followed by its cost-effectiveness are again some of the pressing issues to be considered.
This year, world disability day is being celebrated under the umbra of the COVID-19 pandemic. The subsequent lockdown and disruption of daily activities have exacerbated the gap between 'what is there' and 'what ideally should be'. The Indian Development Reviews’ show that COVID-19 has further marginalized people with disabilities. They are more prone to contracting the virus because of their sensory, motor and cognitive limitations. Despite the various efforts, including offering varying degrees of support, persons with disabilities have been inadvertently excluded from the response mechanisms. Proving once again, when the entire population is affected, the need of the marginalized are often pushed to the backseat.
Keeping the complexity of the situation in mind, WHO recently shared additional considerations that need to be taken into account with regards to persons with disabilities during the COVID-19 pandemic. Persons with disabilities are more prone to being disproportionately impacted because of the severe disruptions in the services they rely upon. Nonetheless, the barriers experienced by them can be reduced if key stakeholders- such as families, caregivers, government, service providers- take appropriate actions. Some key considerations include-
Ensuring public health information and communication is accessible and adequately translated as per their needs;
Undertaking targeted measures for people with disability and their support networks; and
Developing and implementing service continuity plans.
Role of Nonprofit Organizations
There are many nonprofit organizations in India working tirelessly to help reach persons with disabilities realize their full potential by building their capacities, facilitating partnerships between different stakeholders and providing cost-effective rehabilitative and healthcare services. By advocating for their rights, they have succeeded in providing a platform to understand how disabled people are excluded and segregated from mainstream society. Over the past five decades, there has been a paradigm shift both in perceptions and management of disabilities; where the perception has changed from the sympathy/charity model to empathy/opportunity model to full participation to equal rights model. For example- throughout history, persons with disabilities have been given multiple names such as handicap, differently-abled, specially-abled, physically challenged, etc. These nomenclatures leave out several other disabilities that are not necessarily physical. The internationally accepted word, after decades of discussion and wrangling, is "Person with disabilities", with emphasis on Person which pushes the government to work towards accountability and responsibility.
This discourse has further successfully shifted the narrative concerning disabilities by highlighting the discriminatory and regressive policies and practices. Since the past few decades, The nonprofit sector has been acting as a conduit between persons with disabilities and government by creating awareness, imparting education, building the capacities, ensuring access to information/service around entitlements benefits/legislation, and lastly by engaging in networking, lobbying and advocacy.
Holistic Development and Inclusion of Persons with Disabilities
There are several other measures that can and should be adopted to ensure the holistic development of persons with disabilities-
- Advocacy has always been a great tool to protect and promote the rights of the marginalized. It requires commitment from all the quarters and adoption as well as timely renewal of new and existing legislation, standards, policies, strategies, and plans.
- Investment in specific programs and services for people with disabilities; the severity of some disabilities is not only challenging to gauge but also tricky to manage. Some people may require access to specific measures, support services, or training. In this process, understanding their needs and involvement of persons with disabilities are of paramount importance.
- Capacity building of health care providers through effective education, training, and recruitment is pertinent as they play a crucial role. An assessment of the knowledge and competencies of staff in relevant areas can provide a starting point for developing appropriate measures to improve them.
- Balancing the Service providers to Population Ratio - An estimated 2.21% of the Indian population has one or other disabilities. Therefore, the ratio of the service providers to the population also needs to be appropriate as the lack of it makes it merely a response mechanism. The governments need to pay heed to this issue as it severely hampers the service providers' capabilities to provide adequate services.
- Increasing public awareness and understanding of disability is also essential. Governments, voluntary organizations, and professional associations are currently running campaigns that change attitudes on stigmatized issues such as mental illness, and leprosy. The awareness among the masses must include, immense sensitization and awareness to create sensitivity towards issues of stereotyping, prejudice and exclusion.
- Simplification of procedures, as much as possible, is also crucial to ensure that the facilities and benefits, made for the persons with disabilities under various provisions, are accessible.
- Generating community-based data will help to plan and execute appropriate measures to attend to the problems of persons living with a disability.
- Strengthening and supporting research on disability to ensure evidence-based approaches is critical as it helps in increasing public understanding about disability issues, informing disability policy and program, and efficiently allocating resources. Some of the critical areas of research can be quality of life and well-being of people with disabilities; barriers to mainstream and specific services, and what works in overcoming them in different contexts; accessibility and universal design programs appropriate for low-income-settings.
Inclusive development and sustainability are inextricably linked. Therefore, it is crucial to ensure those intervention strategies are focused on the overall development of persons with disabilities. Research on disability issues, adequate policies and their implementation remains a big challenge in India. To be able to realize the goal of inclusiveness, a radical shift in perspective is needed first. We need to understand that persons with disabilities are equal partners in the development and decision-making processes. This shift is difficult, but not impossible to achieve. Therefore, deliberate, conscious, concerted and proactive efforts from all the stakeholders are a prerequisite in initiating dialogues as well as building not only working but sustainable models for the promotion of the rights of persons with disabilities.
To make a difference and access nonprofit projects dedicated to persons with disability, reach out to us at info@trucsr.in.
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