Disability and Aging: Health, Identity,
and Resilience in People With Lifelong
Impairments
Holly Siegrist, Ph.D., Psy.D.
Background of the Study
The Experiences of Older Disabled People
As a disabled woman, learning about other disabled people's experiences throughout their lives was important to me. Disabled people may have unique experiences that can affect their sense of identity and how they age (Heller & Marks, 2006). Psychological experiences of older disabled people are important to explore in psychology, women's studies, disability studies, and age studies in order to learn about oppression and how people empower themselves.
Disabled people often experience oppression, and this is related to inaccessible environments, negative attitudes towards disability, and social exclusion. According to 2010 global population estimates, more than 1 billion, or about 15% of people in the world, are disabled (World Health Organization [WHO], 2011). Historically, many disabled people have been stigmatized, dehumanized, and discriminated against (Smart, 2009). A life course perspective is valuable when examining the experiences of older disabled people. With a life course perspective, the focus is on the dynamics of life, as aging is a lifelong process, from birth to death (Jeppsson-Grassman & Whitaker, 2013), and it is influenced by social, historical, and cultural factors (Davidson, 2011).
People from oppressed groups often experience unfair treatment. Disabled people often experience oppression, negative attitudes that disability undesirable or a personal tragedy, and social exclusion throughout their lives (Smart, 2009). For example, they may experience microaggressions, which are subtle negative comments, actions, or messages made to a person in reaction to the person's difference (Sue, 2010). An example of a microaggression is a hearing person telling a deaf person they are "too quiet." Microaggressions can be ongoing stressors for disabled people.
Experiencing microaggressions and social exclusion can negatively affect one's sense of well-being. Disabled people often experience psychological distress when nondisabled people do not accept how disabled people do things differently (French,1999). Psycho-emotional disablism is where a person feels worthless or ashamed as a result of discrimination (Reeve, 2006). Being excluded can make disabled people feel like they are inferior and do not belong. While people may feel helpless when they experience microaggressions, it is also possible to gain strength from adversity (Sue, 2010).
Stigma and Shame
Stigma is a negative way that others react to a person, and it is projected onto the person. Shame, on the other hand, is how a person feels about oneself as a result of others seeing them in a negative way and being treated unfairly (Johnson, 2017). With shame, a person feels that they have done something ridiculous or are ridiculous. Shame can take away a person's sense of self, and make one feel wounded (Pierce, 2013). It can lead to fear, triggers of shameful feelings, or avoidance of difficult situations.
Stigma involves perceiving a person as having negative characteristics, so it is viewed as being okay to discriminate against the person (Goffman, 1963). Nondisabled people often assume that a disabled person's perceived stigma is because of the person's character, and that it applies to other aspects of the person's personality and abilities, which is the "spread effect." As a result, disabled people may try to pass as nondisabled by hiding their stigmatized identities.
Internalized Oppression
Similarly, internalized oppression is where one internalizes negative attitudes about one's group (David, 2014). Internalized oppression can result from disabled people being treated unfairly and being excluded by nondisabled people. Disabled people may then believe they deserve to be treated unfairly, and not think they are worthy of living good lives (Leigh, 2009).
Creativity and an Affirmation Model of Disability
While disabled people may experience discrimination, they can be creative in how they respond to it and live their lives. The affirmative model of disability (Swain and French, 2000) is a non-tragic view of disability that is both individual and collective. The model states that disability can enhance life and self-awareness. It is guided by the Disability Arts Movement, and it promotes pride in disabled identities and disabled people being happy with themselves. The model also says that disabled people should not have to participate in the activities of nondisabled people if this does not work for them, but they should not be pushed out either, if they choose to be included. This model describes a way for disabled people to celebrate their differences, be creative, and gain social support.
Trauma and Health
While disabled people may have positive ways of dealing with the discrimination that they face, oppression throughout the life course can take its toll on their health and affect how they age. They may experience trauma as a result of oppression or other events, and this can lead to layered or cumulative trauma. For example, deaf people are exposed to interpersonal traumas at a much higher rate than hearing people (Sullivan & Knutson, 2000).
People who are oppressed face prejudice, discrimination, and stigma, which can create stress and cause mental health conditions (Meyer, 2003). Minority stress is caused by experiences of social rejection, it leads to people trying to hide their oppressed identities, and they may engage in self-destructive activities. The minority stress model, which Meyer originally created to describe the stress that sexual minorities may experience due to ongoing discrimination, can be applied to disabled people who are aging, and explain the stress that they experience and how they cope with trauma and disadvantages.
Due to stress, disabled people who are aging with childhood-onset impairments may acquire additional health issues or declining abilities, such as less physical mobility, fatigue, and other health issues; these effects are called premature aging (Lankasky, 2004; Thompson, 2004). As a result, people may have to retire early and limit activities (Kemp & Mosqueda, 2004). It can be difficult to acquire new impairments if a person has tried for so long to attain their abilities. Some people have depression as a result of social barriers and changes related to premature aging (Reinhardt, 1996). Disabled people may live as long as nondisabled people, but have more health problems, and may experience anxiety about pain (Heller & Marks, 2006). Disabled people may face medical or psychological difficulties while aging, and there are also higher rates of mortality among disabled people.
Social Issues Related to Aging
There is still a lot of focus on youth in society (Mackinlay, 2017), and older people are marginalized despite their knowledge and wisdom (Jasinski, 2016). Older people often experience discrimination in employment and recruitment (Roscigno, 2010). As people get older, they may ask the existential question of whether they still have a contribution to make, or if there still can be passion in life (Vitemb, 2018). Terror management is where people have a desire for self-preservation (Calasanti, 2005). However, Morell (2004) argues that a recognition that we are both powerful and powerless is needed.
Making Meaning With Aging
While there are negative attitudes towards aging, older people can gain positive meaning with aging. Hollis (2005) talks about how aging can bring the opportunity for discovering one's true self:
The second half of life presents a rich possibility for spiritual enlargement, for we are
never going to have greater powers of choice, never have more lessons of history from
which to learn, and never possess more emotional resilience, more insight into what
works for us and what does not, or a deeper, sometimes more desperate conviction of
the importance of getting our life back (pp. 9-10).
To Hollis, aging involves thinking about what one really values, and who one was meant to be. People with early-onset impairments may be stronger as a result of the adversity they experience. They may experience stigma due to both their impairments and aging (Minkler & Fadem, 2012), but they can also be very resilient as they age. Minkler and Fadem argued that disability accommodations and policy change can improve older disabled people’s quality of life. This shows that stigma about disability is more of a problem than the actual impairment, and that if environments were made more accessible to disabled people who are aging, this would improve their quality of life.
Also, Cohen-Rottenberg (2014) describes fears of aging, but also how life is precious and meaningful: “Each of our lives is, indeed, very brief. There is terror in that understanding, but there is also sweetness” (p. 218). She goes on to suggest that:
If as a culture, we could hold the wonder and the pain in the palms of our hands, then
suggesting that a person is old would be not an insult, but a recognition of the beautiful,
painful, inescapable brevity of it all. (p. 218)
She states that instead, society flees from “the reality of what it means to live in a human body” (p. 218). Cohen-Rottenberg offers valuable insights into how aging can be frightening to people, but also how disability and aging are topics that should be explored more, rather than avoided.
Harrison (2004) conducted a qualitative study to learn about the meaning of aging for women with childhood-onset polio. She found that some of the women experienced abuse in relationships throughout their lives, and negative attitudes towards them in employment. They also experienced body image issues throughout their lives that they were never able to grow out of. However, participants were able to accept their impairments, and they felt empowered by being able to act on their own behalf. As the women aged, they valued the achievements they made throughout their lives. In later life, they had more pain and impairment, but this led to more creative ways of doing things, and interdependence. They were able to find meaning and make decisions that were right for them. This study reveals the difficulties older disabled people may face due to negative attitudes, but also the value of their wisdom.
Posttraumatic Growth
Recovering from trauma and loss can involve posttraumatic growth, where a person can emerge from a traumatic experience as a stronger person, better able to cope with life challenges (Tedeschi & Calhoun, 2004). With posttraumatic growth, a person can find meaning and purpose in life, and there is a potential for new, positive development to occur in the person. Through difficult experiences, a person can rewrite one's narrative, transform one's life, and be empathetic towards others (Tedeschi & Calhoun, 1995). Older disabled people may become stronger in finding creating ways to cope with oppression or other challenges.
Older disabled people can also benefit from having a positive attitude. For example, in Bigby’s (1997) qualitative research study, which was with older people with intellectual impairments who left home after they were 40 years old, the participants reported having an optimistic outlook at this time of their lives. They expressed that they had new opportunities to learn skills, such as using public transportation, cooking, or participating in social activities. Aging can involve new ways of doing things and possibilities for growth.
Resiliency
Resiliency involves a person having been exposed to a difficult event, such as acquiring an impairment, and being able to bounce back and thrive beyond expectations (Yates et al., 2003). Furthermore, resiliency is doing well in the face of adversity and risks (Patterson, 2002). Resilience in later life involves being able to handle stress (Centre for Policy on Ageing, 2014), and confronting one’s situation and shaping one’s circumstances (Ryff, 2014). When facing challenges, people often realize that they are able to handle much more than they thought, and this can lead to greater meaning and a sense of accomplishment (Cotter & Lachman, 2010).
Part of being resilient is related to self-determination (Marini & Chacon, 2012) and self-efficacy, where a person believes that they are effective in achieving goals (Cherry, 2020). Self-determination is important for quality of life, and being able to have autonomy to make personal choices is beneficial to the well-being of older disabled people (Falvo, 2005; Walsh & LeRoy, 2004). The idea of complete independence might not be realistic for older disabled people (Olkin, 1999). Interdependence is often more relevant, as this involves receiving support from others, and having control over one’s life and choice on how one is assisted (Macfarlane, 2004).
Nutrition, Exercise, and Mind-Body Practices
It is beneficial for older disabled people to have good health practices, a nutritious diet, rest, and exercise (Olkin, 1999). Also, older women with impairments should take calcium to offset osteoporosis. Physical exercise increases self-esteem, relaxation, and healthy coping skills, and reduces stress, anxiety, and depression (Robinson et al., 2021). People are motivated to exercise when they are doing fun social activities. Older disabled people should determine their own goals with exercise, and it is important to pace themselves. In addition, getting massages regularly can be helpful to older disabled people (Vaillant, 2002).
There are many activities that can create resilience and enjoyment, such as Tai Chi or Yoga, and engaging in other activities for social interaction (Centre for Policy on Ageing, 2014). Participating in activities involving art and creativity can be healing and improve quality of life with the aging process (Moore, 2017). Additional things that can be helpful are meditation, bringing an advocate when seeing one’s health care provider or being an advocate to others, and communicating with doctors about one’s concerns and goals regarding aging and disability. Visual imagery and meditation can help with symptoms of impairment, such as pain (Miller, 1999). It has been shown that meditation can lower blood pressure, anxiety, and depression, and can increase immunity (Penn Medicine, 2020). Meditation may also be beneficial in relieving symptoms for disabled people who are aging with secondary conditions (Hayes, 2019).
Having an Important Role in the Community
Older disabled people having a valued role in the community is important (Walsh & LeRoy, 2004). Meaningful activities in the community where friendships and connections can be developed are valuable. Also, access to services and resources is needed (Frank, 2000). Among disabled adults, it has been found that participating in recreational and religious activities increases their psychological well-being (Greenfield & Marks, 2007). Social support involves having caring people in one’s life, sharing interests with others, feeling accepted, and feeling close to people (Brown et al., 2007). Supportive networks are important for older disabled people, as they can increase happiness and help people age well (Bigby, 2004). Support groups have been found to be beneficial to disabled people, as they can laugh about their impairments, and also learn more about them (Fong et al., 2006). Online support groups have also been shown to help disabled people, to increase their self-esteem, and understanding towards people in the group can be helpful (Braithwaite et al., 1999).
Healthy relationships also offset disadvantages, illness, and poverty. However, social isolation can lead to depression and anxiety (Antonucci et al., 2007). In addition, for older disabled people who are unemployed, having a sense of purpose, such as volunteering or engaging in other meaningful social activities, can be beneficial to well-being (Olkin, 1999; Sellon, 2018).
Compassion and Self-Compassion
Compassion and self-compassion are also ways for disabled people to increase their quality of life. Compassion refers to a person extending love, kindness, and warm thoughts to others (The Dalai Lama, 2003). Self-compassion involves accepting one’s imperfections and showing oneself love, support, and comfort when one is experiencing difficulties (Neff, 2003). Also, self-compassion is about being kind and loving to oneself when one is experiencing psychological distress, or physical or spiritual pain (Neff, 2011).
Mindful self-compassion is a practice where a person is self-aware in the present moment and practices empathy and kindness towards oneself (Hayes, 2018). It can help disabled people who may be focused on traumatic and stressful events reduce their anxiety. A person can let themself grieve and then get back into the flow of their life. When a person is more self-aware, they can be in tune to what makes them happy. This can help a person relax, heal, believe in their self-worth, and be less critical of themself. Self-compassion can be beneficial for disabled people to practice as it can help them confront their difficulties and soothe themselves (Stuntzner, 2017). Furthermore, older disabled people being able to soothe themselves can help them become stronger, face challenges as they are aging, and realize their wisdom.
Recommended Therapy Practices With Older Disabled People
When working with older disabled people, it is important for therapists to be knowledgeable about the oppression and other social difficulties that their clients may experience (Tapia-Fuselier & Balva, 2020). Also, therapists should be aware of the unique strengths and ways of being of older disabled people. The therapist should also be aware of their assumptions about older or disabled people (Sue & Sue, 2013). It may be necessary to slow down in therapy because of cognitive issues. There is also a need for patience, empathy, and respect, and the therapist should listen to the client’s story (scienceandnonduality, 2016). A therapist should provide a safe, caring, supportive, and nonjudgmental environment, because this allows the client to get in touch with their inner self and heal (Ferentz, 2015; scienceandnonduality, 2016).
When working with older disabled clients, solutions, opportunities, and options should be explored (Millington, 2012). Also, working with clients so that they can identify people and activities in their lives that can be supportive to them is beneficial (Ryan, 2015). Therapists can also connect disabled people to disability advocacy resources in their communities (Nario-Redmond & Oleson, 2016). It is important to think of ways that clients can thrive (Keesler, 2014). Therapists valuing older disabled people's experiences, and working with them on ways to achieve personal growth and find fulfillment and joy, are helpful approaches.
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