Disability: the Lived Experience - Case Study Example

Section A: Case study I am a 37-year old man living with my wife and two teenage sons in Emerald area in Central Queensland. I suffered brain injury 12 months ago and this has changed my life greatly. I now live with traumatic brain injury that has caused both mental and physical changes. My house is one-storied with the bedroom and lavatory on the first floor. The kitchen is on the ground floor together with the sitting area. I have since experienced changes in my appetite, seizures, partial physical paralysis, confusion, increased distractibility, chronic pain and impulsiveness among other challenges. Section B: Disability awareness My condition has greatly changed my life by causing physical, mental and social-emotional changes. Physical changes include paralysis that led to loss of stamina, chronic pain that initiated by frequent headaches, difficulty in controlling bladder and bowels, frequent seizures and loss of appetite (Caruso, and Cifu, 2009, p.57). I rarely eat as much as I did before the accident that changed me. As a result, I have lost weight and look skinny. Mental changes include decreased concentration and attention, high rate of distractibility, loss of memory and impulsiveness (Caruso, and Cifu, 2009, p.58). Social emotional changes include high irritability, aggression, low self-esteem, confidence, depression, and denial (Barbara, 2008, p.79). These changes have reduced my daily activities by a large proportion because I have to depend on my wife and two teenage sons. I am almost inactive because I can do nothing on my own without assistance. There are several possible effects of the experience of disability on my immediate family and extended family unit. First, my disability made me paralyzed and therefore weak and helpless. As such, I am unable to do things on my own. This means that my family has to spend all their time with me to make sure that I am okay. My wife would possibly resign from her job to spend time at home taking care of me. Since I cannot work and with my wife’s resignation from her job, my family would have trouble paying bills. We would then rely on help from relatives and organizations that help people with such disabilities. Secondly, my disability would affect my children psychologically. Disabilities have a psychological effect on children whose parents have disabilities (Defense Health Board, 2012). They would possibly cry when they see me unable to do simple tasks such as feed myself and visit the lavatory. They would not spend much time with friends and at school; they would opt to spend time alone. In addition, my decreased concentration and attention would make them think that I do not care about them .Moreover, my habit of forgetting would anger them because I cannot keep things in my memory for long, I forget. My disability would also have possible effects on my extended family unit. As an active member, they would miss my participation because of my condition. In addition, relying on them would bring distress to them because they too have families to take care of and not being able to spend time with them would change our relationship and the relationship between their family members. They would possibly hate my aggression, irritability and impulsiveness. The result would be spending little time with me and my family. Many organizations provide information and help to victims of traumatic brain injury. Brain Injury Australia (BIA), is a non-profit organization that offers information and assistance to victims of brain injury all over Australia (Disabilities Info Centre, 2011). Carelink is an agency of the commonwealth government that also provides information on disabilities across Australia. The Brain Injury Association of Queensland is the major organization in Queensland that helps people living with traumatic brain injury (Disabilities Info Centre, 2011). It improves lives of people living with brain injury and their families by coordinating a range of activities that include provision of both emotional and financial support. They have a website that provides useful information and have a hotline telephone service for people seeking for help and for any emergency. Disability Services Queensland would help me manage my daily activities well. They provide assistance to brain injury victims living in Queensland and have offices in all communities in the area (Disabilities Info Centre, 2011) .In addition, they offer assistance to the families and children of people with disabilities. In my area, Local Area Coordination (LAC) and the Family Support program are two community based help programs that help brain injury patients manage their life (Disabilities Info Centre, 2011). They also manage community groups for people with disabilities. The Taxi Subsidy Scheme and the Emerald Community Nursing Program would be of great help in carrying out my daily activities. The Taxi Subsidy Scheme aids people with disabilities by transporting them at reduced rates mostly during hospital visits and other types of visits (Disabilities Info Centre, 2011). The Emerald Community Nursing Program offer physical assistance to people with disabilities by providing health care and equipment such as wheel chairs and other equipment that aid in walking such as walking frames. Section C: Daily living Time/activity Ease of doing an activity or participating(0-4) 0=no difficulty 4=complete difficulty. Barriers or facilitators I have encountered My solution/s to overcome the barriers Approximate financial cost to me 7.00 am: getting out of bed 3 No support to pull myself up An automatic ,electronic bed $250 7.30: going to the lavatory 4 Unable to stand on my own A wheel chair $90 7.45: taking a shower 3 Unable to stand and wash myself A bath tub $150 8.00: taking breakfast 2 Weak hands that are shaky A caretaker $100 8.30: reading the daily newspaper 0 None 9.30: 10.15: family meeting 2 Distraction and lack of concentration Less family meeting time 12.00 taking lunch 3 Unable to wash hands and feed myself A caretaker $100 1.00: visiting the doctor 4 Unable to drive Chauffeur $100 3.00: watching TV 2 Low concentration and distractibility Doing it with a friend 7.00: taking a drink 4 Unable to hold the glass A helper 10.30: getting into bed 3 Unable to stand Walking frames $60 Section D: Challenges Social restrictions My disability has exposed me to several social restrictions. They include difficulty in maintaining friendships and family relationships, difficulty in communicating and expressing myself effectively, intolerance with people, aggressiveness and self-isolation (Defense Health Board, 2012). These difficulties have changed my social life profoundly and the result is that I never enjoy and participate fully in my social life as I did before. I find it very difficult to maintain family relationships and friendships. This resulted from decreased self-confidence, self-esteem and depression. My inability to spend quality time with my family and friends changed my attitude towards relationships. I do not see their need because I cannot do the thing I used to do for my friends and family. I cannot provide for my family and this makes me feel guilty. In addition, I cannot go out with my friends and have fun. My idea of friendship is hanging out together and doing nice things for each other. Unfortunately, I cannot do that. My relationship with my family is strained because of my aggression and irritability. Most of the times am angry and at such times treat them inappropriately. My children loathe me because of being very harsh and uncaring I always feel that I am a burden to them and therefore act that aggressively. Communication is very difficult for me. I can barely express myself effectively. As a result, I avoid social situations that involve interactions and other activities. My inability to express myself results from my speech discrimination and poor articulate functions. Sometimes I lack words to say what is in my mind or use inappropriate words that anger people. In return, they shun me because they take it as intentional and I cannot explain the effects of my disability on my communication. At other times, I fail to understand the exact meaning of certain statements from other people. I misinterpret them as ways of scorning me for my disability and this has prevented people from interacting with me. My disability has led to self-isolation and aggressive behavior. I try as much as possible to avoid people because am not confident to interact with them and I always feel that am overburdening them with my disability. This is because when we are together, they have to help me out with everything I have to do because am helpless. Another reason for isolating myself is lack of motivation to do anything. I do not like talking and my friends and family always think that am avoiding them. I hate when people talk to me because I feel disturbed and I am unable to concentrate on the conversation without my mind shifting to other things, people consider me as uncaring because it is hard for me to maintain a conversation for a considerable length of time without distraction. My children say I do not care because I hardly listen to them, our conversations often make me angry, and at such times, I become aggressive and harsh towards them. Community/environmental challenges I face many environmental challenges due to my disability. These challenges include annoying attitudes of people towards me, insufficient facilities for people with such disabilities and inequality in distribution and awarding of opportunities and community resources. These challenges have contributed in making my life more difficult and intensifying my depression. People have very inappropriate and demeaning attitudes towards people with disabilities (Ashley, 2004, p.43). In my daily activities, I encounter people who treat me with disrespect. Most are very rude and their comments towards my situation are very annoying. It is very depressing to receive insults from other people who consider me retarded and call me names. My reaction worsens these situations because I always take offence. In retaliation, I insult them back. In one instance, it got so bad that someone slapped me. Since I was helpless, I could not do anything but live with the anger of unfair treatment. Another challenge is the unavailability of enough facilities for people with disabilities. For example, very few buildings have ramps for use by disabled people who use wheelchairs. Since I use a wheel chair, I find it very difficult to access some areas am in need of. In addition, very few public toilets have provisions for disabled people. This is a great challenge for me because I have difficulties in controlling my bladder and bowels. Because of such inadequacies, I prefer to stay at home where I have access to these facilities. Lastly, there is inequality in distribution of opportunities and other amenities that benefit the community (Klaus et al, 2006, p.221). People with disabilities are not considered in most of these opportunities. They consider me us unable to do anything and therefore deny me the opportunity. Again, amenities meant for use by the community should be availed in ways that enable people with disabilities to use them. Instead, most of them only cater for the able bodied only, the disabled people are denied access to them. I have adjusted my life to overcome these challenges. I decided to isolate myself and avoid public areas by staying at home. To deal with people’s demeaning attitudes, I established personal principles that involve avoiding public confrontations and currently, am taking anger management classes. Environmental changes are important to ensure full involvement in community life. For example, provision of wheelchair ramps in all buildings, construction of special toilets for disabled people and education of the public on the effect of traumatic brain injury to individuals.ths would help the public understand the disability better and learn to treat people with the disability with respect and great understanding. Moreover, all community amenities should have provisions for use by disabled people and opportunities should be equally awarded without discrimination (Klaus et al, 2006, p.99). Creation of special jobs for disabled people can also be of great help. Reaction from a self-concept, body image and self-esteem perspective The loss of self based on the self- concept, self-esteem and body image is the main tragedy associated with traumatic brain injury (Ashley, 2004, p.54). Medical professionals rarely address it during treatment and management of traumatic brain injury sessions. In most cases, patients never recover from it throughout their life. Brain injury deprives the individual a lifetime that should be characterized by learning, personal identity and individual power. The loss of the self is an intimate, very intense and a soul-shattering period in an individual’s life (Ashley, 2004, p.85). It is so intense that the society neglects the suffering and pain of such a person and cares less. The society avoids people with signs or symptoms of brain injury and casts them into their own world. In addition, the society shows them disrespect by offering those demeaning jobs, sub-standard housing and condescending treatment. In severe cases, they lock them in mental hospitals and rehabilitation centers. It would be destructive to let my disability affect my perspective on life and myself. Such a disability leads to very low self-esteem, low self- confidence, a distorted self-concept perspective and a depressing perspective of body image. In all these three situations, I would react differently to ensure that my perspective on self gives me hope and a reason to live positively with my disability. Realizing that disability is not a form of inability would help me remain motivated and hopeful. The society uses different names to describe the condition: insanity, lunacy, abnormality, mental illness, craziness, madness and queerness among other demeaning words (Klaus et al, 2006, p.112). To avoid becoming a victim of the stigma, I would seek to fully understand my situation and help others understand it. This stigma makes people with disabilities hate themselves because they are not like others. Secondly, I would seek counseling to overcome the depression that resulted from my condition (Klaus et al, 2006, p.132). Many adults who suffer devastating trauma and depression from closed head injury rarely seek counseling services. They agonize until it is too late to seek help. The understanding that brain injury is very different from mental illness would greatly help in embracing my situation and positively living with it (Klaus et al, 2006, p.165). Counseling would also help me mange my anger, aggression and other destructive behaviors that damage my family relationships and friendships. Thirdly, I would learn to trust and love myself despite my body state in order to develop a healthy body image. It would be difficult but it would help me live a fulfilling and happy life with my condition. This would involve deep knowledge of my values and self-worth and developing self-acceptance. These would help me learn to listen to myself and not other people. Most people develop a negative perspective of their body image because they listen to others and compare themselves to them (Ashley, 2004, p.75). I would learn to avoid listening to negative talk and desist from comparing myself to others. Concept of pity, self-efficacy and independence based on treatment and rehabilitation Medical professionals involved in the treatment and rehabilitation of people with brain injury greatly contribute to the oppression and inequality experienced by the patients (Zollman, 2011, p.211). They contribute to this by maintaining a knowledge power difference that fosters dominance by medical professionals, enhances the ‘sick role’ and encourages dependence on the medical professionals by people with disabilities. This is because of the view that disability is a deviation from normality and as such calls for cure by professionals. This enhances dependency on the medical professionals by disability victims for the sake of treatment and rehabilitation(Zollman, 2011, p.213). This demeaning approach to empowerment intensifies the obstacles that people with brain injury encounter. This approach can be improved by replacing it with a social model that helps patients change their view on their situation and help prevent further disabilities. Most patients with brain injury pity themselves upon realization that they cannot be as effective and productive as they were before. This self-pity is aggravated by the treatment that patients receive in hospitals and rehabilitation centers. This results from associating a disability with a type of sickness that requires cure. This creates a notion in the individuals mind that they are sick and only medical professionals can help them. This helplessness and lack of power leads to self-pity. The individual adjusts his attitude to accommodate the presumed helplessness. Instead, individuals should be taught to see their disability as a condition that they themselves can manage and not a sickness that warrants medical treatment. This empowerment is important to avoid self-pity that is destructive to the lives of individuals with disabilities. The concept of paternalism is common in rehabilitation centers and medical treatment facilities. People with disabilities are not given any freedom to act on their own or make personal decisions (Ashley, 2004, p.98). They are considered as unable and therefore controlling them is necessary. For example, the society considers people with brain injury as mentally ill. This issue has been under debate for a long time. Individuals should be given the freedom to decide what is good for them (Ashley, 2004, p.118). At times, medical treatment does not work for people with disabilities. In such instances, the doctor’s decision is followed because the doctor believes he knows what is good for the individual. This happens in rehabilitation centers too. The individual is not allowed to decide what activities suit or work well for him. Instead, he is expected to follow and obey whatever instructions are given. This condescending attitude aggravates the situation of most people because they feel like they have lost personal power and freedom to choose what is good and right for them. References Ashley, M.2004. Traumatic Brain Injury: Rehabilitative Treatment and Case Management. London: CRC Press. Barbara, A. 2008. Coping with Mild Traumatic Brain Injury. New York: Penguin. Caruso, D., and Cifu, D. Traumatic Brain Injury. New York: Demos Medical Publishing Defense Health Board. 2012. Life Challenges. Retrieved from http://www.traumaticbraininjuryatoz.org/Moderate-to-Severe-TBI/Long-Term-Effects-of-Moderate-to-Severe-TBI/Life-Challenges.aspx Defense Health Board. 2012. Potential Effects of Moderate to Severe TBI. Retrieved from http://www.traumaticbraininjuryatoz.org/Moderate-to-Severe-TBI/Potential-Effects-of-Moderate-to-Severe-TBI.aspx Disabilities Info Centre. 2011. Government and Other Support Services. Retrieved from http://www.disabilitiesinfocentre.org/browse-by-services/science.html Klaus, W., Leon, J., and Zitnay, G. 2006.Brain Injury Treatment: Theories and Practices. East Sussex: Psychology Press. Zollman, F.2011. Manual of Traumatic Brain Injury Management. New York: Demos Medical Publishing. Read More