Towards Inclusive Growth and Development

Dr. Shashi Rani

International Day of Persons with Disability is being celebrated every year on 3rd December Globally. The aim of this celebration is to identify possible areas of intervention, creation of sensitive policies, advocacy and campaign for inclusive society. It is in the coherence with the Sustainable Development Goals (SDGs) which came into effect in January 2016, and they will continue to guide United Nations Development Programme (UNDP) policy and funding until 2030. India is signatory to it and is committed to global society agenda to reduce all forms of Inequality. The Sustainable Development Goals are focusing on global efforts to end poverty, to end discrimination and to ensure peace and wellbeing of all. In context of inclusion the Goal 10 of Sustainable Development is "to reduce inequality within and among countries". The Goal 16 of the Sustainable Development is dedicated to the promotion of peaceful and inclusive societies for sustainable development, the provision of access to justice for all, and building effective, accountable institutions at all levels.

United Nations launched Disability Inclusion Strategy in 2019. Disability in the population is a multi-dimensional issue. It is generally defined from biomedical approach but along with it there are many socioeconomic approaches that are equally important in the area of disability. WHO defined disability as "an umbrella term, covering impairments, activity limitations, and participation restrictions. Impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person's body and features of the society in which he or she lives." Further the WHO estimated that more than six hundred million people across the globe live with disabilities of various types due to chronic diseases, injuries, violence, infectious diseases, malnutrition, and other causes related to poverty. In India according to the Rights of Persons with Disabilities Act, 2016,"Person with Disability" means a person with long term physical, mental, intellectual or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others, and "Person with benchmark disability" means a person with not less than forty per cent of a specified disability where specified disability has not been defined in measurable terms and includes a person with disability where specified disability has been defined in measurable terms, as certified by the certifying authority. The Act enhanced the range of disabilities and it covering around 21 forms of defined disabilities. The specified disabilities in this Act are Blindness, Low-vision, Leprosy Cured persons, Hearing Impairment (deaf and hard of hearing), Locomotor Disability, Dwarfism, Intellectual Disability, Mental Illness, Autism Spectrum Disorder, Cerebral Palsy, Muscular Dystrophy, Chronic Neurological conditions, Specific Learning Disabilities, Multiple Sclerosis, Speech and Language disability, Thalassemia, Haemophilia, Sickle Cell disease, Multiple Disabilities including deaf-blindness, Acid Attack victims and Parkinson's disease. The Central Government have power In case of addition of more disabilities.

The International Classification for Measuring Health and Disability: The International Classification of Functioning, Disability and Health, known more commonly as ICF, is a classification of health and health-related domains. ICF is the WHO framework for measuring health and disability at both individual and population levels. ICF was officially endorsed by all 191 WHO Member States in the Fifty-fourth World Health Assembly on 22 May 2001 as the international standard to describe and measure health and disability. As the functioning and disability of an individual occurs in a context, ICF also includes a list of environmental factors. The ICF covered some broad components such as body functions and structure, activities (related to tasks and actions by an individual) and participation (involvement in a life situation), and additional information on severity and environmental factors.

Socio-demographic Factors and Prevalence of Disability: According to Census of India (2011), 26.8 million people are under the population of persons with disability, this constitute 2.21 per cent of the total population of India. The matter of concern that there is an increase in the population of persons with disability it increased from 21.9 million in 2001 to 26.8 million in 2011 over the decade. There are more men in comparison to women, as per the Census 2011. There are 14.9 million men with disabilities as compared to 11.9 million women. The percentage of men with disabilities is 2.41 per cent as against 2.01 in women. The urban and rural difference in the population of the persons with disability is over 18.0 million in the rural areas and 8.1 million in the urban areas. In the social groups the data revealed that 2.45 per cent belongs to the Scheduled Castes (SCs), 2.05 per cent to the Scheduled Tribes (STs) and 2.18 per cent to other than SCs/STs.

Marginalisation and Exclusion: It is known that across the regions people with disability are exposed to multiple barriers, from personal to social life there are many difficulties and challenges. The International Classification of Functioning, Disability and Health, the framework of WHO is broadly divided in two parts with two components in each part. First, Functioning and Disability, including Body functions and Structures & Activities and Participation. Second, Contextual factors including - Environmental factors & Personal factors. From this framework point of view the people with disabilities are always under multiple burden of social barriers, first due to their own difficulties and second due to the social factors. The routine life challenges are generally not in a public domain and society overlooks many important aspects which could be matter of concern for policy making. Therefore, the social groups those are at margin such as people with disability are more prone to get deprived from their basic rights for survival, education, employment, growth and development. In the absence of inclusive infrastructural arrangement, assistance, lack of resources and opportunities of participation and engagement, the benefits of nation's development and growth is not reaching out to them equally. The people with disability are marginalised and deprived of equal opportunities in comparison to other dominant groups of Indian society. From the point of vulnerability the age, gender, class, caste and region are some contextual factors that may affect the individual's capacity to deal with difficult situations of life. In the case of people with disability, they are not only victim of social barriers, stigma and discrimination, but also due to their social identity. It hampers their capacity to access educational and employment opportunity to fulfil the basic needs for survival. If we look at the disability from gendered angle, the structural inequalities that are existing in our society due to patriarchal social system impose several restrictions on women because of their gender. Their personal and social rights are being overlooked and violated in absence of strong social and legal protection. The gendered roles expected from women makes women with disability more vulnerable in comparison to other women and men. In all possible personal and social matters such as health, survival, education, marriage, sexuality, reproduction, employment and public life, women with disability having more chances of violation of their basic rights. They are not only deprived of fair chances of survival and growth but also for leading quality life with dignity.

Right to Quality Life with Social Participation and Engagement: Right to quality of life is a very broad concept and it includes various aspects of life from sense of dignity and worth to be in state of wellbeing. For leading a quality life both subjective and objective interpretation of different aspects of life is crucial and it depends on one's psychosocial context, culture, belief and value system. From a quality of life dimension in case of persons with disability it may include some important factors such as perception and confidence regarding functional ability, psychosocial support and recognition, availability and accessibility of opportunities for growth and development. The positive institutional response and role of state is important. We may say with positive presence of all these stated factors a sense of empowering state is tool to lead quality life. The Preamble to the Convention on the Rights of Persons with Disabilities (CRPD)-2006, adopted by the United Nations, describes disability by stating that "Disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others. "Therefore if we critically analyse the individual's social position and identity, it may become a major barrier in leading quality life or it can be a powerful source of reclaiming the equal social status. These social identities depend on social response and attitude of people towards another set of people. What is normal and abnormal is completely socially constructed phenomenon, thus people often fall in the trap of socially accepted definition of ability and disability. It becomes a major social barrier for many if it will be accepted without any scientific or rational idea of being able. Further these kind of social responses leads to exclusion of people with disability from social participation and engagements. Social stigma, discrimination, ignorance and lack of acceptance affect a persons immediate and long-term relations with others and sense of wellbeing. More often it is noticed that due to negative response from society, people with disability are not able to fully participate and engage in the society. Also it hampers the access of the available support systems to maintain routine life. The Socio economic and infrastructural barriers for social participation and engagement are; inaccessibility to care and support, lack of empathy, judgemental and discriminatory practices, lack of resources and opportunity. For example in different social institutions, generally people with disability are ignored in the public functions, social gathering, sports or recreational activities. In this context the infrastructural support, educational awareness programme at various levels with strong policy measures can facilitate the process of participation and acceptance of people with disability with enhanced sensitivity.

Important Initiatives for Protection of Rights of Persons with Disability by Government of India: The Constitution of India binds all citizens in a common thread with sense of security through Fundamental Rights and Directive Principles of State Policy to deliver services in best interest of its citizens with inclusive approach. From the view point of constitutional framework, it is the duty of the government to protect the social and economic interests of the marginalised and excluded sections of the society with various policy, strategies and interventions. The Government of India (GoI) have taken many initiatives through government policy and programmes to create inclusive society by focusing on marginalised sections of society especially for persons with disability. The Ministry of Social Justice & Empowerment, Government of India (MoSJE), through its programmes and policy formulations facilitates empowerment of the persons with disabilities. The Ministry of Social Justice & Empowerment work along with Ministry of Health & Family Welfare and the Ministry of Education and Ministry of Women and Child Development. This is an important ministerial alliance to work together for the cause of disability. Rights of Persons with Disabilities (RPWD) Act, 2016 have provisions of setting up Special Courts in each district. The national level fund along with state level funds for welfare of people with disability is announced. State Governments have to setup district-level committees and a separate State Fund arrangements is for the execution of welfare schemes for Persons with Disability. Also central and state level coordination is envisaged in the Act. Other than these efforts, there is Rehabilitation Council of India Act, 1992, Mental Health Care Act, 2017, National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999. Among the major initiatives of GoI, there is a scheme for an assistance to people with disability for purchase/fitting of aids and appliances (ADIP). The National Awards for Empowerment of Persons with Disabilities, Accessible India Campaign (AIC) for creating universal accessibility for Persons with Disabilities inbuilt Environment, Transport, and Information & Communication Techno-logy (ICT) ecosystem. The Unique Disability Identification Project is aimed to create national database for PwDs, to issue Unique Disability ID (UDID) Card along with disability certificate to everyone. The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities, and Inclusive India Initiative launched. First Indian Sign Language Dictionary of 3000 words, developed by Indian Sign Language Research and Training Centre (ISLRTC), New Delhi. In addition to that various workshops and events are held for information and awareness of public at large.

Need of Support and Assistance for Caregivers: People with disability are generally in the need of support and assistance from significant caregivers. People of different age require different kind of support system and attention from caregivers, their orientation and training can be important tool towards assistance and support of caregivers. At the same time frontline health workers should extend the support to caregivers to overcome from the stressful situation. In this situation it becomes important to orient immediate caregivers about need and support required by people with disability from an individual case perspective. Many times the fair assessment of need and realistic approach gets missed in the process of identifying support system. At the same time all caregivers may not be educated and empowered but to fill up this gap counselling at the time of planning of medical treatment is very much important. The counselling should compulsorily be provided to individuals and family separately and together. In order to create a supportive system for handholding, regular sessions of counselling with family by primary health care workers will be an important step. It can be applied to both rural and urban settings.

Use of Technology and Digital Assistance: The global society become one with the use of technology. The physical and social distances are covered with technology awareness and its use. In the Covid-19 pandemic we have witnessed how technology helps human beings to overcome from individual to social barriers. The telemedicine, helpline numbers and teleconsulting is very much in use and it can be possible only through use of technology. Whether it is a matter of business, health, education or all possible day to day services for daily needs are possible to get through technology. In the area of disability it can be a lifesaving tool to reach out to services, protection, and safety. Technology is having potential for creating enabling environment for people with disability, in case of any impairment and physical inability, it may provide immediate assistance to perform daily life activities. It is also providing economically viable solutions in health, education and employment sectors. It is reducing gaps between individual to individual and in addition to that creating platforms for social participation, meaningful engagement and to stand for each other in solidarity. It can be used for knowledge dissemination, orientation, training for healthcare providers, caregivers, academicians, frontline workers, policy makers and other important stakeholders. With the use of technology monitoring and evaluation of ongoing programmes are possible in timely manner and if required field interventions can be planned with optimal use of resources.

The Way Forward: In the end, we need to ensure proper implementation of policy matters. The need of the hour is to create proper infrastructure to enhance accessibility of public and institutional services. The innovation in designing and planning of infrastructure is required. The need is to strengthen administrative machinery for planning, implementation and monitoring. Active participation of all stakeholders especially families, local administrative & educational bodies, civil society organisations and media are required, orientation and training of the key personnel is an important factor for removing attitudinal barriers and adoption of inclusive approach towards inclusion of People with Disability. Use of all possible means of Information, Communication and Technology (ICT) in regional languages is required for awareness generation and publicity of government policies and schemes for persons with disability. The area of disability is very huge with large scope of interventions. Thus, we need to generate empathetic and sensitive view to create meaningful policies of social inclusion with sense of accountability.

Dr. Shashi Rani is Assistant Professor, Department of Social work, University of Delhi. Author can be reached at shashi.socialwork@gmail.com Views expressed are personal.