What is a disability? Can we leisurely define it?
Disability, either acquired or hereditary, is the leading health and social problem in many countries, including well-developed countries. It represents the significant health-social challenges of this era. As of now, as is, the healthcare system and social system are very oppressive, inadequate, and inappropriate to meet the needs and challenges of the people living with disabilities. What is desperately needed is a fundamental shift in perspective approach with the application of complementary, alternative, holistic, integrative, and functional treatments where the subjective experience of the disabled person is of central concern. Yes, subjective and personal experience!
Life, wellness, and health coaching for disabled people are necessary and of urgent need. Some disabled people are with vocational rehabilitation services for years, not months, as they should be. Actually, the primary goal of their existence, primary function, and mission are to prepare and find employment for disabled people (funded for their operation predominantly from federal resources, about 75%).
It looks like each disabled person is getting stuck in one of the phases, either in “the very beginning,” “hitting the wall,” “turning around,” “letting go,” “opening up,” “letting in,” and “the end of “healing” process” (1). The phase “hitting the wall” is where most disabled people give up all services and so-called “independent living,” where they realize that they are, in reality, heavily dependent on their family or primary caregiver for the rest of their life. This is because all care and everyday living are on the primary caregiver’s shoulder, family, and friends.
Finally, we reached the point that life, wellness, and health coaching specifically designed for disabled people is “a must.” Most disabled people are chronically placed in psychotherapeutic sessions with CBT (cognitive behavioral therapy), yes, chronically for years, instead of as CBT standards proposed 6 – 16 sessions, and that’s it. No achievements, and no improvements, then a psychotherapist should take another way of therapy. CBT strictly focuses on challenging and changing unhelpful cognitive distortions and behaviors, improving emotional regulation, and developing personal coping strategies to solve current problems. Well, it sounds good, but after a short period, another challenge is coming.
Severe depression is a common comorbidity of disabled people that is “coming” silently but persistently, staying as a shadow following the disabled person who desperately wants to find a new way of life, meaning, and purpose of life as a disabled person, employment, lost dignity… coming poverty, a new monster. Not a problem; here are antidepressant therapeutics widely available and readily prescribed even by primary care physicians. After changing six or more different forms of antidepressant therapeutics, there are no expected improvements or so few with frequent relapses. Some disabled people also do not know they have treatment-resistant depression; social factors are not improved, a home-bound lifestyle is still in existence and persistent, and the disabled person is falling into a severe episode of depression.
The integrative, functional approach in the treatment of disabled people is promising, including holistic, alternative, or complementary therapy in the form of applied intensive life, wellness, health coaching, finding a new way of life, meaning, and purpose of life, objectively approaching a job search, employment, getting back lost dignity, fighting depression and anxiety and symptoms of post-traumatic stress disorder getting disabled. Indeed, disabled people also deserve to find and feel the greatest love of all in their lives, as all others do.
What is a disability?
Millions of people live with a visible or invisible disability, acquired or hereditary disability, physical, mental, intellectual, cognitive, developmental or sensory disability, disability with comorbidity and without comorbidity; nearly one in five people, currently almost 49 million people have a disability in the U.S.A. According to the data from the World Bank, “one billion people or 15% of the world’s population experience some form of disability, and disability prevalence is higher for developing countries. One-fifth of the estimated global total, or between 110 million and 190 million people, experience significant disabilities” (2).
Disability is not a disease category; it is a condition caused by physical, sensory, cognitive, and mental disorders that cause significant limitations in one or more major life activities. According to the Americans with Disability Act, “major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating and working (Americans with Disability Act).” Probably, a much better statement about disability we can find in the World Report on Disability World Health Organization (WHO) stated: “Many people with disabilities do not have equal access to health care, education, and employment opportunities, do not receive the disability-related services that they require, and experience exclusion from everyday life activities. Following the entry into force of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), disability is increasingly understood as a human rights issue. Disability is also an important development issue with an increasing body of evidence showing that persons with disabilities experience worse socioeconomic outcomes and poverty than persons without disabilities.” (3).
It is imperative to understand disability as a phenomenon fully. Yes, I would say the phenomenon. Unfortunately, defining disability is exceptionally complicated. For a long time, I have been searching for one good definition of disability. Probably, one of the best descriptions of disability is from the World Health Organization; it states: “Disability is complex, dynamic, multidimensional, and contested. Over recent decades, the disabled people’s movement and numerous social and health sciences researchers have identified the role of social and physical barriers in disability. The transition from an individual, medical perspective to a structural, social perspective has been described as the shift from a “medical model” to a “social model” in which people are viewed as being disabled by society rather than by their bodies” (3 – 8). Indeed, this statement provides a much better description of what disability is and how disability is transforming from a medical model into a social model. However, I did not stop searching for a better explanation and definition of disability.
Leonardi M. and colleagues, in 2006, in their article published in the Lancet, stated: “Disability promoted as a “bio-psycho-social model,” it represents a workable compromise between medical and social models. Disability is the umbrella term for impairments, activity limitations, and participation restrictions, referring to the negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors)” (9). Generalization about “disability” or “people with disabilities” can mislead and any form of generalization should be avoided seriously. Persons with disabilities have diverse personal factors with differences in gender, age, socioeconomic status, sexuality, ethnicity, or cultural heritage; a unique culture. Each has their preferences and subjective responses to disability (10). A broad range of international documents has highlighted that limitation is a human rights issue, including the World Program of Action Concerning Disabled People (1982), the Convention on the Rights of the Child (1989), and the Standard Rules on the Equalization of Opportunities for People with Disabilities (1993). Over 40 nations adopted disability discrimination legislation during the 1990s (11). According to Harris J. and the article published in 2015, the Americans with Disability Act, the marquee civil rights legislation for people with disabilities, expresses a national approach to disability that recognizes the role of society in its construction, maintenance, and potential remedy. But its mission is incomplete, and it has not generated the types of interactions between people with disabilities and nondisabled people empirically shown to deconstruct deeply entrenched social stigma (12).
Disability as a phenomenon is very complicated from a biological, medical, social, and psychological point of view. As Sen A. 2009 stated in his book: “Disability is a development issue because of its bi-directional link to poverty: disability may increase the risk of poverty, and poverty may increase the risk of disability” (13). It looks like the definition of disability is not been entirely reached. Still, the question of how disability should be defined is fraught with political, ethical, and philosophical complexities (14).
How disabled people get even more impaired than they actually are?
Predominantly, disability is associated with some comorbidities, and one of them is severe depression. Depression, by itself, a separate entity, is a form of disability. So, people with a disability who developed depression as a comorbidity are more disabled. Some previous research exhibited co-morbid depression and chronic physical conditions associated with disability (15). Unfortunately, there is a substantial lack of data on disability and suicide in the U.S.A. There is a small number of national data on studies related to this topic. Some studies reaffirmed that disability is the risk factor for depression by using longitudinal data (16). Certainly, home-bound lifestyle, lack of employment, lack of transportation, services by vocational rehabilitation and social services, and heavy dependence on a primary caregiver, most disabled people will, over a specified period, develop the first signs and symptoms of depression and even suicidal ideation. Overall, significant indicators for increased suicidal risk in the population of disabled people are unemployed for an extended period, profound social isolation due to the home-bound lifestyle and lack of transportation, and significant change in health status because most disabled people require frequent medical attention and treatments.
Progressively, due to a lack of proper access to a healthcare provider, lack of mental health support and help either because they cannot afford due to overly expensive treatments and office visits or lack of mental health care providers locally, severe depression will be accompanied by suicidal thoughts or ideation in disability. Unproperly treated or untreated depression eventually, in combination with the unbearable social status and life under the limit of poverty of disabled people, will convert into a devastating condition of major depressive disorder with frequent suicidal thoughts. The majority of disabled people are oppressed by ableism, too; living as disabled people in a society that hates disability, or a society, the community suffers from significant stigma and taboo regarding disability. Overall, disability and its functional limitation in daily living activities have been associated with suicide in the population of disabled people (17). Still, there is a substantial lack of research on what category of disabled people are more prone to develop severe depression, people with acquired disability or hereditary, and people with a visible or invisible disability. Disabled people who suffer from suicidal ideation deserve to be seen by a therapist who “speaks” their language and understand their experience; thus, cultural competency related to disability is a “must” for all healthcare professionals, including pharmacists in the retail setting, social workers, psychologist and psychotherapists, rehabilitation counselors and our primary caregivers. Unfortunately, there is a lack of research on primary caregivers’ response to a disabled person with developed depression as comorbidity and vice versa.
Unfortunately, despite a substantial lack of national data on suicide and disability in the U.S., some studies have shown a substantially higher suicide rate in the population of disabled people with certain disabilities, such as multiple sclerosis, spinal cord injuries, and intellectual disability (18). As Giannini M. and colleagues in 2010 stated: “U.S. researchers and policymakers must address the substantial gaps in knowledge that remain to help create a clear understanding of suicide in the disability population, especially targeting children and youth ages 10 to 24 and other at-risk age cohorts”. It sounds like a “wake up call” but still, since 2010 we do not have some significant contribution regarding research in this field. One of the possible reasons for such a condition is that suicidologists cannot find the data regarding the suicide rate in the population of disabled people, the data are hidden, or there is a lack of proper evidence regarding this particular issue.
As one disabled person said: “Happy spring, I am “celebrating.” What? Six years of unsuccessful services, still no job for me; with all my higher education in the vocational evaluation process, they made me an office clerk that even GED would be challenging for me, a home-bound lifestyle, severe disability, and heavy dependence on a primary caregiver…for them, I am “a low expectation and high liability.” Or another one, “I am five years in CBT (cognitive behavioral therapy). My potentially successful suicide was prevented by my primary caregiver, not a psychiatrist, psychotherapist, or rehabilitation counselor…but holistic therapy helped me balance my body-mind-soul and find a “healthier” myself.”
This blog is the first blog in a series of three blogs dedicated to disability and disabled people and how holistic therapy, life, wellness, and health coaching can help disabled people to live productive life finding “the greatest love of all.”
Respectfully,
References:
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2. http://www.worldbank.org/en/topic/disability
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https://www.dol.gov/ofccp/regs/compliance/faqs/ADAfaqs.htm
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