Sustaining a disability or chronic illness disrupts almost every aspect of life. This occurs through the loss or mandatory changes to employment status, vocational skill sets, role within the family system, political ideologies, spiritual perceptions, or other elements of identity (Williams, 2000). Social identity theory postulates that even to dramatically alter one of these activities potentially shakes the foundation of one’s sense of self, diminishing their well-being (Haslam, et al., 2009). Based on these concepts, a crucial aspect of rehabilitation must enable the person to positively assimilate the disability throughout their identities.
This review will examine the various reactions individuals might experience following a disability using Kübler-Ross’ stages of loss model. This process focuses on working age adults and retirees, as these individuals already have developed numerous social identities through familial relations, employment, religious affiliations, political activities, and other groups (Darling, 2010). Youth are omitted due to the discrepancies between self and group identity outlined in the identity versus role confusion stage from Erickson’s model (Abrams, Hazen, & Penson, 2007).
Kübler-Ross’ Stages of Loss
The ground breaking research from Elizabeth Kübler-Ross on grieving following death opened the doors to analyzing other forms of loss. The theory defines denial, anger, bargaining, depression, and acceptance as the five stages of loss (Kübler-Ross & Kessler, 2004). It’s important to note that these stages might not occur in this order, might not include all five stages, and relapse to a prior state is feasible (Pomeroy & Garcia, 2008).
Upon notification of a loss, denial surfaces as a method of disbelief (Kübler-Ross & Kessler, 2004; Freeman, 2005; Pomeroy & Garcia, 2008). For example, a doctor might inform a patient that they have a condition like macular degeneration or cancer at the end of an appointment. Depending on the physician’s specialty, they would simply conclude by suggesting a referral to a specialist or by saying that there is nothing more they can do. This abrupt closure sends one reeling back, not knowing what to think or believe.
The term ambiguous loss accurately captures the grief response at this point. The newly diagnosed person exists in a state of confusion yearning for answers (boss, 2013). Physically, the person is still alive, but psychologically might be unable to respond or understand how they now need to behave.
Passing exemplifies such a behavior where a person clings to their previous methods to conduct their daily activities or hide their conditions, due to unfamiliarity with adaptive skills. Motivation stems from internal desires to family and friends mandating this to comply with societal norms (Brune & Wilson, 2012; Linton, 1998; Murray, 2009). Franklin Roosevelt (FDR) exhibits both of these pressures after becoming paralyzed from polio. His goals focused on resembling a strong upright political leader by concealing leg braces and heavily leaning on his son while walking in public (Brune & Wilson, 2012). Had he elected to publicly use wheelchairs and care attendance, U.S. history might be very different today.
FDR validates passing through the concealment of aids to resembled a cured man instead of acknowledging the disability. However, many react in an opposite manner. Murray’s (2010) findings amongst mobility and limb replacement prosthetics indicate that those in denial are more likely to reject these devices, as it signifies their loss. Based on these varying reactions during denial, the best assistance one may provide is patience,until the individual finishes understanding their loss.
As one understands that the disability is permanent, feelings of anger, rage, and envy appears. This resembles the questioning and lashing out against personal and group identities, religious beliefs, and other aspects of self (Kübler-Ross & Kessler, 2004; Freeman, 2005; Pomeroy & Garcia, 2008). This reaction has the potential to push supports away, isolating the individual, but creates a possibility for clinical and rehabilitative interventions. Within the family system, a disabled individual may question their ability to parent, function as a sexual partner, or financially provide for their dependents. Each of these items contributes to the overall self-confidence. Due to the focused nature of these tasks, interventions can target specific goals, alleviating dismay towards personal feelings of ineptitude. Healthcare professionals must be willing to approach each of these subjects, even topics related to sex.
Regarding anger or fears from faith based traditions,spiritual views or teachings from scripture might inflame reactions. Different traditions throughout the world still attach negative connotations to disabilities. For example,possession by evil spirits may be blamed for mental health conditions or seizures, while atonement for past sins explain why one loses a limb or sensory organ. Differently, scriptures often depict religious figures expressing feelings of pity towards the disabled, leading towards feelings for being a second class citizen (Linton, 1998; Mahoney, 2014). Regardless, a person views their condition not as a part of human existence, but punishment that leaves them helpless. In this case, one must garner an understanding from religious leaders about the views of disablement and attempt to devise different constructs.
Recently medical science published some awe inspiring research findings and procedures, like the bionic eye or complete arm transplant. Though wonderful in theory, this potential for a medical cure leaves one asking “what if.” The bargaining stage signifies that the person acknowledges the condition, but refuses to live with it. Instead, the person seeks alternatives to restore their deficits through the pursuit of cures or praying for a miracle (Kübler-Ross & Kessler, 2004; Freeman, 2005; Pomeroy & Garcia, 2008).
The reliance on medical cures stems from the medical model of healthcare. This model transfers the control for a disability from the individual to a physician (Darling, 2010; Linton, 1998; Murray, 2009; Putnam, 2005). This forfeiture of self-efficacy especially occurs in older adults and those with limited access to information through the internet (Darling, 2010).
Advancing a person through this stage requires a combination of educational resources. The presentation of this information should not alienate one from the hope for a cure, but rather inform on the research process, living in the present with the condition, and understanding affirmative or social models of disabilities. Many disability support groups cover these items, while also normalizing various challenges.
Through depression, one signals the movement towards acceptance but yet feels fear towards the future and reluctance to leave the past. Similar to anger, this stage creates an opportunity for the introduction of different rehabilitative and counseling interventions (Kübler-Ross & Kessler, 2004; Freeman, 2005; Pomeroy & Garcia, 2008). Some additional reasons for depression include the withdrawal from employment, decrease in the support systems, and inability to enjoy previous interests. Many of those who enter a blind rehabilitation center at this point express grave concerns over their limited capabilities and the loss of identities after leaving employment rolls or failure to remain engaged with hobbies (Carroll, 1961; Darling, 2010).
As with bargaining, a peer support group allows one to witness positive possibilities. Additionally, older adults who engaged with other groups like religious congregations or senior’s clubs express an increase in their general morale (Darling, 2010). Referral to these programs should be discussed by healthcare teams, caregivers, and the individual with the impairment.
Acceptance does not mean one fully embraces their disability and becomes a disabilities advocate; rather they acknowledge the presence of their limitations and choose to live (Pomeroy & Garcia, 2008). Murray (2009) found that these individuals feel comfortable with managing their bodies and actually assimilated any assistive technologies throughout their identities. Healthcare providers play an key role by remaining actively engaged throughout the process. An example of success is an individual’s ability to discuss and publicly integrate adaptive aides, like canes, walkers, respirators, or limbs (Murray, 2009).
Disability studies debates the importance of disability pride as an aspect of acceptance. While this represents a very important tenant for disability advocates and alignment within the disability cultural identity (Putnam, 2005), but older adults generally reframe from adopting the disability identity (Darling, 2010).
The post-modern identity constructs enables one individual to exist through multiple identities. This fluid notion of self creates the ability to form an identity based on the interaction or setting, like workplace, home, friends, online, and numerous others (Breakwell and Jaspal, 2014). Developing a severe disability dramatically impacts many of these identities, diminishing self worth and well-being owing to the inability to function in these roles (Haslam, et al., 2009).
As demonstrated by FDR, societal pressures might force an individual to adopt measures to “pass” as non-disabled, with negative repercussions as noted by his rapid deterioration towards the end of his life (Brune & Wilson, 2012). However, becoming a disabilities rights advocate emitting disability pride with every step is not necessary to demonstrate acceptance (Darling, 2010; Putnam, 2005).
Relying on a person-in-environment framework, neither “passing” nor “disability pride” trumps the other during the rehabilitative process. Rather, caregivers and healthcare providers should assess the individual based on their received needs (Thielke et al., 2012). By focusing on this, the consumer will incorporate the limitations and adaptive aids into their concept of self, fostering the acceptance of the new identities (darling, 2010; Murray, 2009).
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