Difficulties Faced By Disabilities Health And Social Care Essay
The difficulties that people with disabilities and chronic illness are facing can be divided into 9 major criteria, including loss of independence, transportation, accessibility issue, education, employment, dining, communication and social relationship, getting married and self-esteem.
1. Loss of independence
Disabled people have difficulties in self-care. Among the 3000 people with disabilities living in households, 42.5% states that they have a person to take care of their daily living due to their disabilities (The Census and Statistics Department, 2009). This situation is even worse for those who are paralyzed, for example, Tang Siu-pun (鄧紹斌). He had to rely on the others in activities of daily living, including eating, bathing and dressing. He also failed to maintain the quality of life and live with dignity (The Sun Daily, 2012). The dependence of financial assistance on society and family members is another concern to disability. The rehabilitation of disability is a prolonged and financial consuming process, such as huge expenditure on medication, health equipment and services, housing, transportation and financial assistance on chronic illness patient to maintain daily lives (Galvin, 2005). According to Census and Statistic Department (2009), 63.7% of the disabled are retired person and only 13.2% of them are economically active persons, this shows that the disabled mainly depend to others financially.
In Hong Kong, disabled people face lots of problems when taking public transport, including buses, MTR, trams, ferries and minibuses. Visual impaired people would have difficulties in finding bus stops as not every bus stop has guiding tracts and not every bus has the facility to provide a slope for people on the wheelchair to get on and off the buses. Minibuses and trams do not have audible announcement system and mostly make use of stairs, which causes inconvenient for people with impaired vision, hearing or walking impairment. Some MTR stations do not equipped with or only have one lift or lifting platform for people on the wheelchair.
3. Accessibility issue
Although The Buildings Department of Hong Kong has published the manual Design Manual: Barrier Free Access, not all the buildings in Hong Kong is regulated. Since the buildings built before the publishing of the manual are exempted from the requirements and those regulations are not applicable to the buildings owned by government or Housing Authority, the general accessibility is not satisfactory. Physical barriers still exists and some premises owners are reluctant to modify the premises to people with disabilities to use (The Equal Opportunities Commission, 2010). For example, people on wheelchair are difficult to open a door by either pulling or pushing if an automatic door is not provided.
According to the data from The Census and Statistics Department (2009), 32.3% of the disabled people have never received any education while 36.3% of them have studied in primary school. Less than a quarter of them have studied in secondary school. In many cases, since the inadequacy of facilities or lack of capital of schools, special facilities such as computer aids for the visually impaired are not available, which makes disabled people having less opportunities in receiving education, which is unrelated to the intelligence. Moreover, most disabled people study in special schools, which has 1 year more than the formal education syllabus, usually fail to meet the university requirement and thus they tend to have lower education level (Government of the HKSAR Education Bureau, 2010). This leads to a lack of opportunities to develop skills and post harm to their employment competitiveness.
Due to the unsupportive government policy, small companies are unable to hire any disabled people due to the large expenditure for modification of special facilities to meet their needs. Many companies that hire disabled peoples could not survive in such a competitive society due to insufficient governmental support. Disabled people also tends to have lower income than non-impaired people, as evidence by disabled people have 85% lower in income than non-impaired people even though they have the same skills and qualifications because most employers think that disabled people have lower productivity. Furthermore, since there is no minimum wages for protecting disabled people in the government policy (Labour Department, 2012), some of the employers may lower their wages to make more profits.
For people with chronic illness, they need special diets such as low salt diet for hypertension and controlled glucose intake for people with diabetes. However, not every restaurant and canteen can provide them with these choices. They may not be able to have artificial sweeteners or low salt diet in some restaurants such as McDonalds, Kentucky Fried Chicken and "cha chaan teng"(茶餐廳). They may need to prepare their own food. But they might have difficulty in doing so due to unavailability of refrigerators or microwave ovens at schools or workplaces.
7. Communication and social relationship
Disabled people have difficulties in social relationship and they usually have smaller a social network. This is mainly due to discrimination and misunderstanding. For example, sign language used among people with speech and hearing impairment is not commonly known by general public. Moreover, mentally retarded people may have difficulty in expressing themselves and thus other people find it difficult to communicate with them. Furthermore, separation between formal schools and special schools will make them have lower chances to communicate with other non-impaired people in society (Hong Kong PHAB Association, 2013).
8. Getting Married
According to the research from Hong Kong PHAB Association (2013), it is found that disabled people are less likely to get a girlfriend or boyfriend. This is due to their smaller social network and they consider themselves as minority. Moreover, over 50% of the disabled women have difficulty in finding boyfriends or getting married because most men worries about the ability of disabled women to take care of the family and their ability of reproduction as well as complications during pregnancy or laboring (Germov, 2009).
Disabled people tend to have a lower self-esteem, which means the loss of identity associated with work and independence, changes in appearance. These factors created a sense of dissonance between past and present identities (Germov, 2009). For example, Yik Siu-ling (易小玲), one of the Manila bus hostage survivors, her appearance was severely affected after the incident. She always has to wear a mask when she goes out and she stated that "When people put me in front of a mirror, I didn’t know it was me." (The Sun Daily, 2011). She has a lower self-esteem and poor body image.
Definition of Impairment, Chronic illness and Disability
According to Australian Institute of Health and Welfare (2002), chronic illness can be defined as conditions that are prolonged are rarely cured completely. It includes physical, mental diseases and injury-related conditions, for example, asthma, hypertension and depression. According to Germov (2009), chronic illness is regard as a kind of impairment. Impairment is the temporary or permanent loss of function in physiological, psychological or physical aspects (Germov, 2009).People with physical impairments may have anatomical functions or structures loss while people with mental impairments may have psychiatric illness like schizophrenia. Disability, in a general term, refers to any restriction or lack of ability resulting from impairment to perform an activity which is considered normal for a human being (World Health Organization , 2001).
Biomedical model of disability
Bickenbach (1993) stated that disability involves a defect, deficiency, dysfunction, abnormality, failing, or medical "problem" that is located in an individual, directly caused by disease, trauma or other health condition. For example, spinal cord injury, cerebral palsy, deafness, amputation. In biomedical model, the meaning of disability is related to impairment of individuals. The root cause resulting in activity limitation and participation is due to the physical, cognitive, mental, sensory, emotional, developmental malfunction of the disabled(Paley, 2002).Disability requires medical care provided in the form of individual treatment by professionals and management of the disability is aimed at cure or normalization of the individual (O'Connor, 2007). According to this model, medicine and medical treatment are universal science that aimed at inventing a magic bullet to cure all people with the same disease (Weitz, 2013). This model views individual body as a complex biochemical machine. That means once the malfunction part (impairemnt) in the individual body is fixed, the machine works again (Weitz, 2013).
Social model of disability
The Social model understands the disability though studying the impact of society on the people with impairments. It holds that social interactions between the disabled and the general public is the main contributing factor in disabling people and causing the associated problems and difficulties (Germov, 2009). Goggin & Newell (2005) pointed that a person is necessary to have an impairment to lead to a disability, but it is not a sufficient cause, instead, social arrangement like environmental barriers, discrimination (negative attitudes) causes disability. For example, being unable to walk is an impairment, however, being unable to get in a building because the doors are too narrow for the wheelchair is a disability. According to World Health Organization (2001), the loss or limitation of opportunities to participate in society on an equal level with others can be caused by social, environmental and attitudinal barriers toward the disabled. In the view of this model, remedy for disability-related problems requires an advocate, or anyone who affects the arrangements create a change in the interaction between the individual and society (O'Connor, 2007).
Understanding difficulties faced by people with disabilities or chronic illness
We think social model can explain most of the difficulties faced by the disabled, except the first one, which is loss of independence, because many difficulties in performing tasks in daily lives are rooted from impairments of the disable. According to Union of the Physically Impaired Against Segregation (1976), society disables the physically impaired people. Disability is something imposed on top of impairments by the way they are unnecessarily isolated and excluded from full participation in society. This makes disabled people an oppressed group in society (social oppression), which implies that impaired people are in an inferior position and their needs are being ignored due to standardization and social control.
Illness is viewed as deviance because sick people withdraw from a biological norm of health and feelings of well-being, and withdraw from normal patterns of social behavior (Weitz, 2013). Social role pointed that individuals in the society have to take up different roles and fulfill the responsibility and acts according to the social norms (Weitz, 2013). The concept of sick role is based on the social role. The sick role is the social expectation regarding how society should view sick people and how sick people should behave (Parson, 1951). When people are ill, they cannot perform the social tasks normally expected of them, which means they could not bear a normal social role. Sick people can use illness to evade social responsibilities. According to Parson (1951), when a person bears a sick role, the sick people have a legitimate reason for not fulfilling his or her normal social role. Moreover, sickness is considered beyond individual control so sick people do not owe the responsibility. Also, sick people should recognize sickness as undesirable and try to get well. Lastly, the sick person should seek and follow medical advice. However, the public considers sick role is a temporary role.
Due to the presence of chronic illness or disabilities, by definition their illness is unlikely to be cured. In this case, their sick roles are not temporary but permanent. Treatments are just for preventing them from deterioration, but not cure. Even if the sick people try hard to seek medical advice and recover from diseases, society still considers them as deviance.
Stigmatization is one of the examples of attitudinal barriers experienced by the disabled under social model. According to Goffman (1963), stigmatization includes a process that the general public identifies the differences and separates the labeled persons into distinct groups. After that, the public will refuse to interact with them and therefore cause a lot of misunderstanding and a construction of stereotypes. For example, the symbol of disability instills a fixed image of disabled people like sitting on the wheel chair, unable to walk, run, and work or reduction of activity. These stereotypes cause loss of opportunities and equal chances to the disabled.
One of the other examples of stigmatization is the media representation of disability. The mass media, for example news stories, fund raising campaigns, always reinforces the distorted and fixed images about disability. They present the disabled people as pitiful, weak, relying on others and requiring protection. For instance, the TV drama series ’One Liter Of Tears’ also presents the disable are full of self-pity, needs emotional support and professional help.
A research from Huber & Gillapsy (1998) showed that AIDS patients were subjected to extreme rejection, prejudice, and formal and informal discrimination. The stigmatized status of the disease was related to a range of biomedical and non-biomedical factors, including nature of illness, which is sexually transmitted, secondly their associations with homosexuality and intravenous drug use which is immoral, and thirdly the fear of its transmission through daily contact. All These stigmas impose shame on those patients with AIDS.
People with disability or chronic illness may also stigmatize themselves. Self stigmatization is also called ‘felt stigma’. It can occur among people experiencing impairment in mental and physical conditions as well as chronic illness. Self-stigmatization includes feeling inadequacy and shame due to an embarrassing condition or appearance, or limited mobility. Using people with epilepsy as an example, during relapse, the patient will exhibit urinary incontinence, muscle convulsion, drooling which cause much embarrassment. In order to prevent this embarrassment, the patient will tends to avoid taking part in normal social activities. Therefore, the disabled will develop a lower self-esteem and hence further deepening the sense of social isolation.
A research from Fife and Wright (2000) proved that patients with cancer and AIDS experience internalized shame which includes feelings of being set apart from others who are well, blaming oneself for the illness, and feeling a need to maintain secrecy about the illness Moreover, they experience social isolation which includes feelings of loneliness, inequality with others, useless, detachment.
Since people with disability or chronic illness have self stigmatization, their social identify will also be affected. Social identity is the way that individuals label themselves as members of particular groups and One’s social identity is derived from their experience and interaction in society (Weitz, 2013). Therefore, The social identity of the disabled in modern society is a double identity: an impaired being & a citizen. So, it is not surprised that 50% of the disabled population consider themselves as a minority.
The positive response bias
Although the public will lend a helping hand in daily lives or in fund raising events, their help may be related to the positive response bias. The positive response bias of normal people to the disabled is often interpreted as a ‘sympathy effect’ (Wright, 1988). We help the disabled because general norm in our society inheres that we have to be kind to disadvantaged persons. Non-disabled people may simply be appreciative of the apparent successes of disabled people in meeting difficult challenges (Kleck, Ono & Hastorf, 1966). This example shows that the public still considers people with chronic illness or disability is a deviance, and thus creating an attitudinal barrier towards them.
Comparison between the biomedical model and social model for understanding chronic illness and disability
By comparing between social and biomedical model, social model propose that disability is a difference, which is neutral while biomedical model regards disability as a deficiency or abnormality, which is negative. In social model, disability comes from from interactions between the individuals and society whereas in biomedical model, disability resides in the individual. Social model also suggests that the remedies for disability-related problems are changing the patterns of interaction between the individual and society. The agent of remedies can be the individual, an advocate, or anyone who affects the arrangements between the individual and society. However, in biomedical model, the remedies for disability-related problems is cure or normalization of the individual and the only agent of remedy is health care professional (O'Connor, 2007).
Missing elements of biomedical model
Biomedical approach only aims at cure the body impairment of the disabled but totally neglect the social factors. For example, if a person with walking difficulty, biomedical model just focus on how to deal with his or her walking impairment while ignoring the social factors which makes him or her unable to get access into different places. This reveals that the biomedical model regards disability merely as an intrinsic individual factor, but not a social issue. There is nothing can be done by society, but the disabled people themselves (Crow, 1996).
Due to mind-body dualism, mind and body are separated under biomedical model. It only aims at correcting the malfunctions through medical rehabilitation in physical aspect without considering the psychological problem (Capra, 1982). Biomedical model treats most individuals with the same diagnosis with identical treatment plans regardless of differences in the individuals' needs, resources, or assets (Smart, 2009).
Also, biomedical model is unable to reflect the daily lives of disabilities. Since the problems such as reduced opportunity, lower expectations cannot be reflected, policy makers, legislators, health professional service provider and general public underestimate the needs of disabilities (Hahn, 1985). Moreover, it could not explain the self perception and value of disability, including self-stigmatization and low self-esteem (Parsons, Hernandez & Jorgensen, 1998).
Biomedcial pathology is present, and, in addition, disabilities are objective conditions that exist in and of themselves. This "objectification" process opens the door to the possibility of dehumanizing the person because attention is focused on the supposed pathology(Albrecht, 1992; Longmore, 1995) Thus, the individual with a disability, regardless of personal qualities and assets, under- stands that he or she belongs to a devalued group. in the view of others, a life with a disability is worth less investment (McCarthy, 2003).
The Biomedical Model places people with disabilities in stigmatizing categories, therefore allowing the "general pub- lic" to view them as their category—"the blind," "quads" (individuals with quadriplegia), or "the mentally ill" (Nagi,
1969). Regardless of the category, categorized people are viewed as their category and not as individuals.
Categorization has also successfully taught society to focus on the disability category rather than the universal problems and challenges faced by people with all types of disabilities.
Missing elements of biomedical model
Social model merely focus on the social barriers of disability but never attempt to deal with the actual body restrictions of impairment. However, removal of social barrier does not necessarily mean the removal of restricted opportunity. For example, for people with hearing impairments, even the society accepts them and removes any social discrimination and provide them with opportunities to work, they are still unable to do some kinds of jobs like waiters and call receivers. The existence of the problem is no longer due to the social barriers, but the actual body restriction (Oliver, 1996).
Social model neglects some personal and physical needs. It takes social as the causes of disability but it denial both physical and psychological "pain of impairment" and it regards restrictions are entirely socially created. It also denies the personal experience of physical or intellectual restrictions of illness and the fear of death. It ignores the psychological factors of the disabilities (Morris, 1991).
Biomedical model focuses on individual responsibilities which require medical interventions and rehabilitation while social model focuses on social responsibilities which require social actions. Biomedical model can manage the actual physical dysfunctions and fulfill individual needs through medical technology which is in micro aspect whereas social model can provide more sustainable measures to assist disabled in macro aspect. Since there are limitations on both models, neither the biomedical model nor the social model is the best model to explain and analyze the problem of disability and chronic illness. The best model should include the physical, psychological and social problems of the disable or patients suffering from chronic illnesses. Thus, we should make a balance between the two models in order to help disabilities in a more holistic approach and the most effective way.