Implications of the Study

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The goal of this dissertation was to gain knowledge of the experiences of people with childhood-onset impairments who are aging. This study was unique in that it examined the life course experiences of disabled people, and also their experiences in older age. The study was valuable because it explored how the participants’ experiences earlier in life could affect their quality of life and decisions they made later in life. It also revealed how stress from oppression could affect the health of disabled people throughout life. In addition, it illuminated the wisdom, resilience, and positive coping skills that the participants’ have gained from their experiences and ways that they practice compassion for themselves and others.

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Strengths of the Study

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​The study is valuable because it looked at the life course experiences of people with childhood-onset impairments, and also their experiences in older age. It also included participants from a variety of backgrounds and ages, and explored the intersectionalities of identity and oppression. Another strength of the study was that it told stories about the experiences of older disabled people from the participants' perspectives, and looked at different time periods in their lives. In addition, this study was conducted during the COVID-19 pandemic, and had to be adapted by conducting interviews through Zoom video. However, the study was successful and the participants were open and shared their heartfelt experiences and opinions over Zoom.

 

This study is also very useful because while most studies look at only one time in participants’ lives, this study went beyond this to explore life course experiences to provide both a big picture and in-depth angles of the participants’ narratives. The study allowed participants to reflect on their lives and share information with others. This study also aimed to be emancipatory by providing participants with the opportunity to tell their stories, reflect on their lives, and share information with others, so that much knowledge could be gained about the social experiences of older disabled people.

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Participants' Reflections

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Individual Interviews. Participant feedback was that they had the opportunity to reflect on their lives and become more aware of their growth and positive ways they managed difficult situations. Some participants also stated that they learned more about themselves on a deeper level, and that the interviews made them realize positive things about themselves, such as that they are survivors. Also, many participants said that the interviews made them think about their aging processes. It was good for knowledge of disability and aging to be gained. 

 

Focus Groups. Participants said that the focus groups were good for the opportunity to meet other people with childhood-onset impairments who were aging, and have people to relate to. The participants stated that it was good to get support, and nice to have other people to talk to who understood them and had similar experiences, so they could be themselves, as they do not always have this in their lives. The participants stated that the HeartMath (Childre & Martin,1999) meditation was calming, and one participant also said that he liked the handout on positive affirmations. The participants expressed that it was nice learning from each other and sharing resources.

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My Reflections

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I chose to do this study because I wanted to learn more about the experiences with aging that people with childhood-onset impairments have and how they cope, and also learn more about myself in the process. I found that the individual interviews were a great way for participants to tell their stories and reflect on their lives, and I enjoyed having conversations with them about disability issues.

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Also, the focus groups were a good opportunity for participants to share their knowledge with others and learn about cultures and different perspectives. When appropriate, I participated in the discussion with the participants about disability and my own experiences. The participants were provided with information about resources by the other participants and myself, which was positive. I was glad that I learned from them and that they had the opportunity to learn about resources available.

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Conducting this study was a very meaningful experience. Throughout my dissertation journey, I wrote in my journal and reflected on the participants’ responses, and also my own experiences with disability and aging and my sense of identity and goals for the future as I age. I learned a lot from the participants by what they shared about their life experiences, self-care practices, coping strategies, and compassion. I also thought of ways that I could work on aging well and do more self-care. Working on this dissertation and learning from the results also helped me gain more knowledge to improve therapy practices with older disabled people. This study provides valuable information on the social experiences of older disabled people, ways that they are resilient, and also what policy makers and health care professionals should know about disability and aging.

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Limitations of the Study

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A limitation of this research is that there were only 10 participants, so it is not generalizable to the population of disabled people who are aging. However, the participants’ stories and meanings they make about their experiences are revealed, which provide valuable insights into the sociopolitical issues that they described. Also, the participants came from from different backgrounds and had different impairments, so their experiences cannot be generalized. However, doing research with participants who came from different cultural and ethnic backgrounds was a valuable opportunity to learn about different perspectives.

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While the participants came from different backgrounds, 60% of the participants were White, so future studies examining disability and aging should include more people of color. Another limitation was that all the participants were heterosexual. In addition, the sample had at least some college education, and all the participants lived in the U.S. The participants were higher functioning, and lower functioning people might not have been as motivated to participate in this study. However, the participants’ narratives illustrate their unique experiences and help make sense out of previous research and social problems, and many of the findings are in line with previous research, lead the way for future research, and can also be utilized by clinicians, policy makers, people who are disabled and aging, and the general public. Future studies that explore similar topics with a more diverse sample, would be beneficial. Also, studies should explore these topics with older disabled people in other countries.  

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Clinical Implications 

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Therapists should have an awareness of the oppression that older disabled people may face, and also disability culture, and possible accessibility needs. It is important to help clients achieve their dreams. Therapists should work with clients on increasing self-esteem and self-worth. They should help their client see possibilities and have hope.

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It is also beneficial for therapists to provide information about wellness, positive affirmations, and mindfulness meditation. It is also valuable to learn about the client’s spirituality, and encourage self-compassion. Therapists can also help clients with strategies for talking to doctors.

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Doctors and therapists should provide clients with information about community resources and disability support groups (Brown et al., 2007). Doctors should have an awareness of how stress and aging can exacerbate an impairment or lead to other impairments (Thompson, 2004). Doctors need to listen to their clients, and be sensitive to their needs and concerns (Kemp & Mosqueda, 2004).

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Research Implications

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Areas of study, such as disability studies, age studies, and feminist studies should share ideas. Future research should examine why some people react negatively to disability and aging. There should be more research on how disabled children can be included and develop positive disabled identities. More research is also needed on ways that disabled people can develop healthy romantic relationships and familial relationships.

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Further research is needed on improving the quality of life of disabled people throughout their lives, and ways they can manage stress, develop a positive self-concept, and practice self-compassion. Also, more research is needed on internalized oppression that disabled people may face and ways to heal from this. Also, further research on improving health care and therapy practices with older disabled is needed. Surveys and longitudinal studies investigating disability and aging, and how stress from oppression can affect health and lead to accelerated aging, and ways of preventing or managing this, would be beneficial.

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Training Implications

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Attitude changes around disability and aging are needed. Disability awareness training is needed for K-12 teachers, speech therapists, school administrators, university professors, mental health professionals, and medical professionals.

The general public should also be more exposed to and educated about the disability community.

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Training is needed to create awareness of disability issues, cultures, identity, how stress can affect health, and accelerated aging in people with child-onset impairments who are aging. The training should involve information about the social model of disability and universal design.

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Policy Implications

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Healthcare services and early education programs should provide information to families on ways to include disabled children. Also, disability studies courses in high school and more sign language courses are needed. More funding for accommodations is needed in schools, mental health and medical care facilities, places of employment, and events.

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Disabled people should have more access to information about opportunities. There should also be information for disabled people who are considering becoming parents, and also about programs to support disabled entrepreneurs. Also, more support groups should be available for disabled people.

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Affordable adaptive equipment is also needed. All programs should abide by the ADA, and use universal design, and more information about services needs to be made available. To ensure accessibility and social inclusion, more availability and funding are needed for sign language interpreters, adaptive equipment, and captioning on all video screens and monitors (Siegrist, 2019). There should also be more community services that provide recreational programs for older disabled people, home visits, and take people to their doctors’ appointments.

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General Recommendations for Interacting with Older Disabled People

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     Here are some general tips for interacting with older disabled people:

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• Be patient and considerate of the person’s way of being (Sue & Sue, 2013). Be aware that the person might need more time to do things or may live more in the present moment.

• Understand that the person might get fatigued easily and may need more rest.

• Do not make assumptions about a person because of their disability or age. See them as a person and appreciate their knowledge and wisdom.

• Be inclusive, nonjudgmental, understanding, and willing to adapt.

• Provide accessible environments for older disabled people. Examples are making sure that events are wheelchair accessible, or looking at a deaf person while you are talking to them, and ensuring that your mouth is visible, so that the person can either read your lips or know you are talking to them. Also, providing reading materials in larger print can be helpful.

• Allow the person to do things in ways that work for them, such as taking more breaks or working less hours at a job.

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Conclusions

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This study investigated in-depth the life course experiences of older disabled people, their social, health, and identity experiences, and ways that they are resilient and cope with disability and aging. The results of this study contribute to the knowledge of disability and aging and are valuable for clinicians, policy makers, people who are disabled and aging, and the general public. The participants’ narratives reveal important information about oppression and stigma that disabled people may face, and this helps with understanding the negative effects these can have on disabled people’s sense of well-being. Results suggest that difficult social experiences throughout life can affect disabled people’s aging process and health. However, the participants also have wisdom and expertise in dealing with challenges, which is valuable in older age.

 

This study offers useful information about the health experiences that older people with childhood-onset impairments may face, such as accelerated aging. It was found that stress from oppression and inaccessible environments can negatively affect health and lead to premature aging. This is important information for health care providers and therapists, as this should be taken into account when considering treatment planning, and also public health measures should be put in place to provide information on the importance of a balance of rest and exercise, to improve health. More research is needed on ways to improve the health of people aging with childhood-onset impairments.

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The study also provides important information about the valuable coping strategies of older disabled people. The participants have many creative ways of coping with disability and aging, and are optimistic. These included having a positive attitude, healthy lifestyle, setting meaningful goals, and practicing self and other compassion. Other valuable ways of coping with disability and aging were embracing disability and aging, being involved in meaningful and enjoyable activities, and gaining social support. The participants also have a strong sense of autonomy. Policy changes and more research are needed to promote the quality of life and inclusion of older disabled people in society. When older disabled people are provided with respect and social support, they are able to show the valuable experiences and wisdom that they have to offer.

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For more detail about the study and results, you may read my full dissertation here:

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https://www.proquest.com/openview/af6145678027f8c75a76dad0e625598f/1.pdf?cbl=18750&diss=y&loginDisplay=true&pq-origsite=gscholar

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References

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​Brown, I., Buell, M. K., Birkan, R., & Percy, M. (2007). Lifestyles of adults with

     intellectual and developmental disabilities. In I. Brown & M. Percy (Eds.), A

     comprehensive guide to intellectual and developmental disabilities (pp. 545–

     560). Paul H. Brookes Publishing Company.

Childre, D., & Martin, H. (1999). The HeartMath Solution. HarperCollins

     Publishers.

Kemp, B. J., & Mosqueda, L. (Eds.). (2004). Aging with a disability: What the

     clinician needs to know. The Johns Hopkins University Press.

Siegrist, H. (2019). Deaf people and social trauma: Effects on interpersonal

     relationships and resiliency (Publication No. 13895236) [Doctoral dissertation,

     Alliant International University]. ProQuest Dissertations and Theses Global.

Sue, D. W., & Sue, D. (2013). Counseling the culturally diverse: Theory and

     practice. John Wiley & Sons, Inc.

Thompson, L. (2004). Functional changes affecting people aging with

     disabilities. In B. J. Kemp  & L. Mosqueda (Eds.). Aging with a disability:

     What the clinician needs to know (pp. 102–128). The Johns Hopkins

     University Press.