Empowering People with Disabilities.

INTRODUCTION

Disability, an overarching concept and an umbrella term, covers impairments in functioning, limitations in activities, and restrictions in participation in life and work.[1] The 2011 World Health Organization Report on Disability stated a prevalence of disability of around 25% (based on World Health Surveys), highlighted its significant burden in India, and contrasted it with a gross inadequacy of rehabilitation professionals and programs in the country.[1] India, a signatory of the United Nations Convention on Rights of Persons with Disabilities (UNCRPD),[2] which calls for empowerment of people with disability, has a long way to go in implementing the treaty in letter and spirit.

Disability is complex, dynamic, multidimensional, and contested.[1] The term “disability” has divergent meanings; the confusion is compounded when viewed from different theoretical frameworks and conflicting perspectives. The social model of disability, employed by occupational therapists and rehabilitation professionals since the 1900s, always argued for its multifactorial etiology and the interaction between biology and personal and social environments.[3] Occupational therapists highlighted the fact that disabilities persisted due to restriction in activity participation, perpetuated by adverse social environments, and argued for the therapeutic, diversional, and economic benefits of “occupations” to treat people with disability. However, the dominance of the medical model in the second half of the 20th century impacted rehabilitation models and resulted in a reductionistic philosophy, which shifted the focus from optimizing functional performance to correcting dysfunction in body structure and function.[4]

The past few decades highlighted the limitations of the biomedical model for chronic diseases, marked by its inability to reverse pathology, its symptomatic treatments, and the failure to restore function in many people. This led to increasing disillusionment with the approach and resulted in the emergence of more holistic perspectives; biopsychosocial[5] and recovery models,[6] with their focus on person-centered approaches, argued for comprehensive care.

The environment has a major impact on the experience and extent of disability and the lives of people with disabilities.[1] Recent models of therapy conceptualize issues related to disability as promoting occupational performance by manipulating the interacting system of the person, their role-specific occupations, and the environmental context in which the performance of these roles takes place.[78910] These models have been translated into practice frameworks, emphasizing the need to focus on occupational participation rather than a sole emphasis on remediation of deficits.[1112] The UN Convention, a watershed treaty, clearly shifts disability from the “medical model” to a “social model,” from an individual and medical issue to a structural and social perspective.[12]

The change in perspective resonated the concepts of the WHO International Classification of Functioning[13] and the UNCRPD[2] that emphasized on improving social and productivity factors to reduce disability. It is also supported by research which demonstrated that different brain disorders have similar determinants as well as common psychosocial difficulties and argue for crosscutting interventions which are horizontally rather than vertically aligned.[14] Systematic reviews point to strong evidence for effectiveness of occupation- or activity-based interventions for people with physical, pediatric, or psychiatric conditions.[151617] Recent occupational therapy frameworks suggest a top-down approach of first identifying a person's occupational area of concern, followed by evaluating the barriers to occupational engagement and finally, providing occupational activities as a means to improve function in these areas.

THE INDIAN SCENARIO

In spite of the renewed international focus on occupational performance and participation, India continues to be steeped in the biomedical model, with its bottom-up approach. The strategy based on the biomedical framework first evaluates abnormalities in body structure (e.g., deformities) and body function (e.g., loss of muscle power, executive function) and then prescribes interventions, exercises, and activities to improve these deficits. However, the translation of improvement in body function to enhancement in occupational performance is overlooked, leaving major lacuna in the rehabilitation of people with disabilities.

Many factors contribute to the current situation in the country and include (i) The use of linear paradigms, (ii) The Salami approach to rehabilitation, (iii) Tunnel vision and disciplinary straitjackets, and (iv) The magic pill illusion. These are briefly described.

Dysfunction is often viewed as a linear, cause-and-effect phenomenon. For example, in a person with a history of a road traffic accident, the head injury is viewed as causal, resulting in physical difficulties and deficits which lead to impaired occupational performance and ensuing economic hardship. Consequently, treatment delivery also tends to take the same bottom-up approach with its attempts at reversing the linear causal pathway. However, actual people and their lives are not so simple. The person's chances of recovery depend on their psycho-socio-economic context; personal motivation, family support, socioeconomic status, and access to good quality care play a significant part in recovery. More importantly, it is the complex interaction between these systems that make up the unique experience of a person suffering from disabilities.

Disabilities should not be viewed from a linear medical perspective, but need to be understood from a systems' approach with its psychological, social, economic, and public health environments. Interventions focusing only on body functions and structure are not only reductionistic but also ineffective. Therefore, holistic and rehabilitation interventions need to be multipronged, addressing personal, familial, social, cultural, economic, and political contexts of the individual. Occupation and occupational therapy, with its focus on productive work and social participation, become integral to minimizing the effects of disability.

Second, it is a common practice in medicine to divide treatment into various phases – acute, subacute, chronic, etc., While it was previously believed that rehabilitation was required only at the later stages of the illness, recent understanding suggests that disabilities can be present irrespective of the duration or severity of the illness, mandating early focus and prompt interventions related to functioning and occupation.[18] Even if medical factors require more attention in the acute phase, psychosocial management has also been incorporated into this stage in most developed countries. In the Indian context, psychosocial management continues to be reserved for the later stages of illness, to be used when pharmacological management has failed to show improvement in functioning. Considering the added socioeconomic burden that falls on a person with mental illness, it becomes imperative that interventions to improve productivity be initiated as soon as possible, irrespective of the stage of illness.

One of the major disadvantages of specialization and subspecialties in medicine and allied health sciences is the focus of professionals in their area of expertise, making them unable to see the big picture or provide holistic care. The efficiency of such separation will only be useful if the diverse specialists and specialties involved in the care of individuals are part of a multidisciplinary team which coordinates their efforts. Such teams should necessarily value diverse clinical and management expertise and dialog effectively.

A purely biomedical formulation is problematic for many chronic illnesses which only partially respond to optimal treatment and have persistent residual deficits, adverse medication effects, impaired functioning, livelihood issues, and difficulties in reintegrating back into life. Recent understanding argues for the centrality of healing and recovery to the care of people with chronic illnesses and disability. The recovery model attempts to distinguish clinical recovery (i.e., freedom from symptoms) from personal recovery (i.e., recovering a life worth living) for conditions where cure seems a distant reality.[6] It focuses on social and living skills, modification of the person's social environment, reduction of stress, lowering excessive demand on performance, involving family and caregivers in the treatment-rehabilitation process, and providing community services which foster dignity, autonomy, and positive self-regard while protecting human rights.

THE WAY FORWARD

India needs to acknowledge the magnitude of its disability burden. It needs to shift from persons with disability being statistics to being people with the same rights as other citizens of the country. It needs to match its rhetoric and honor the commitments given in its constitution and the UNCRPD.

Chronic illnesses, by their definition, highlight the limitations of the medical model, its failure to alter primary pathology, its symptomatic treatments, and the failure to address residual deficits and consequent disabilities. Health professionals, particularly doctors, need to realize the inadequacy of the sole use of biomedical interventions, particularly within market-based health-care systems. It calls for a change in conceptualization and understanding of mental illness, viewing it within the various environmental contexts, which will set in process a multidisciplinary approach to care and healing. The early incorporation of rehabilitation approaches, which focus on function, occupation, and real-world issues specific to the Indian population, is mandatory. The shift from clinical recovery to personal recovery is cardinal. Incorporating the biopsychosocial model also demands reduction in the hierarchy within multidisciplinary teams in favor of a more horizontal organization which will facilitate appreciation of diverse knowledge, different frameworks, distinct approaches, and unique skills.

The inadequacy of the medical approach to disability also demands that the society in general value and support people with disability. Many legal statutes already on the books, such as the Amendment of Rehabilitation Council of India Act,[19] Rights of People with Disability Act,[20] and the Mental Health Care Act,[21] need to be implemented both in letter and spirit. The guiding principles that underlie the UN Convention should direct their implementation in the country: respect for inherent dignity, individual autonomy, nondiscrimination, participation and inclusion in society, respect for difference, acceptance of persons with disabilities as part of human diversity, equality of opportunity, accessibility, gender equality, and the recognition of evolving capacities of children with disabilities.

Equality of opportunity should translate to improved/equality of outcomes. However, attitudinal barriers are bigger obstacles than physical dysfunction and financial difficulties to care of people with disabilities. Stigma and discrimination of people with disabilities are common.[1] There is a need to recognize the individual experience of disability rather than stereotype people. Generalizations about people with disabilities can not only be misleading but also harmful.[1] Personal, familial, and socioeconomic circumstances, cultural context, and access to care differentially impact dysfunction to produce variation in activity limitation and participation restriction and therefore need to be identified and managed.[1] Disability is part of the human condition, and the UN Convention mandates that disabilities are understood as a human rights issue.[12] The diversity of disability experience demands the need to let go of stereotypes and understand the unique experience and challenges of people with such conditions.[1]

In addition, disability is also a development issue.[1] The bidirectional relationship between poverty and disability demands the need for contextual understanding and support. Amartya Sen's capabilities' approach moves beyond the concepts of utility (e.g., gross domestic product) to emphasize human rights and “development as freedom,” arguing that people with disabilities face social exclusion and disempowerment and not just a lack of material resource.[22] The approach and the UN Convention argue that people with disabilities have equal rights to social protection and the state should provide safety nets to help people with disabilities to live empowered lives.[222]

The 2010 Millennium Development Goals (MDGs) also highlight disability as a cross-cutting issue for the attainment of MDGs and highlight the invisibility of people with disability in the official statistics.[1] Disability is referenced in many Sustainable Development Goals, specifically in those related to education, growth and employment, inequality, accessibility of human settlements, as well as in data collection and the monitoring of these goals.[23] Many international organizations support community-based rehabilitation.[24]

Health professionals should not only focus on functioning, occupation, and personal recovery, but should also lead the society in advocating for the rights of people with disabilities. No country can consider itself civilized unless it enables all its people to reach their full potential.