An interesting quote from a study performed with people with Intellectual Disabilities:
“Faith viewed herself as a helper and a protector of individuals with disability, while at the same time distancing herself from relating to them as a person with a disability. It is evident that Faith’s personal identity was not wrapped up in having Down syndrome. This struggle with identity seemed to be a culmination of parental and family expectations, the particular opportunities she had had in her life, and other community influences that recognized her as a high functioning young adult.
Faith struggled with her sense of belonging. She seemed driven by a determination to prove to the world that she was just like everybody else, worthy to stand in comparison to any of her typically developing work colleagues. Her struggles with her own identity may, in some respects, have hindered her own ability to feel a sense of belonging. In not identifying with her disability, she denied the reality she encountered, making it difficult to cope.”
Grimmet, K (2018). Using Photo-Elicitation to Break the Silence. In M. L. Boucher, Ed. Participant Empowerment Through Photo-elicitation in Ethnographic Education Research New Perspectives and Approaches, Springer, p. 79.
Page 80:
It is important to balance belonging. I am not advocating for total inclusion nor
am I saying that there should be no segregated activities. For example, as a teacher, we have segregated awards that only teachers can win. People like to be with those with whom we share common likes, dislikes, hobbies, gifts, and talents. I believe there needs to be a balance of opportunities in which individuals with disability can belong to and find meaning and worth as members or participants. When we only provide opportunities within segregated environments (i.e. Special Olympics, Book Club), I question if those segregated groups represent individuals and opportunities within the participant’s spheres of influence. A person’s spheres of influence are an
example of Bronfenbrenner and Morris’s (2006) framework which demonstrates how multiple systems (spheres) interact with one another (influence), thus playing a vital role in the development of the individual. Are these segregated environments representative of the communities and people who directly and indirectly interact and impact their everyday lives, their spheres of influence?
Quality of Life Is Fluid
“as people grow, the QoL changes. As we age, we have continuous opportunities to develop skills and try new adventures—all of which
provide personal and career development and occasions for developing
self-determination. Maybe our skills lead us to more money, which can change the places we live, the food we eat, the continued opportunities we may have. This fluid or dynamic nature is evident as one’s employment status, financial security, or health may waiver at any point in life, resulting in a positive or negative shift in one’s personal QoL.
Life is ever changing, in a permanent state of transition, and thereby one’s QoL
if fluid, modifying and adjusting according to the ups and downs, the new and the old, and other variations life throws our way.” p. 83
Parent’s Guilt:
“Carter’s mother, Jeanette felt responsible for Carter’s disability and this colored all her decisions about how to provide for Carter’s long-term wellbeing. For example, she felt that Carter was unable to take part in the study without her being responsible for taking the photos on his behalf. Jeanette’s apparent sense of guilt extended beyond Carter’s disability; she reported frequent worries about whether she paid enough attention to her other two children. Jeanette remembers how stressed she became trying to “keep up with [all of Carter’s homework]. [I felt like [I] ignored our other two kids.” Throughout the study, Jeanette remained preoccupied by guilt she placed upon herself for his disability and struggled with the additional responsibilities that come with having a child with a disability.” p.84
“She is so high functioning in many ways…that people begin to assume she is [high functioning] in every situation. She could be taken advantage of so easily.” p. 86
“any person’s Quality of life (QoL) cannot be judged by outsiders. It is personal. The quality of experiences and the quantity of opportunities individuals have to develop independence and self-determination, to be socially included, and to address their physical well-being all impact QoL. QoL is a messy concoction of elements (material, physical, emotional well-being, self-determination, interpersonal relations, personal development, social inclusion, and rights) that work together to create positive life-long outcomes for individuals with disability. As researchers, we may be able to identify components or develop a framework that contributes to QoL, but we cannot assign a given value to any of the identified component(s) nor suggest what QoL should or should not represent.” p. 87
“The discrepancy between Carter’s independence at home versus at work and out in the community is notable.” p. 87
“sometimes we may need to judge more wisely when to hang on and when to let go of our loved ones with a disability. Our perceived protection over their lives could be the one thing that hinders them the most.” p. 88