Overview

1. Growing Up & Growing Older with a Physical Impairment: the paradox of normalization through a process of rehabilitation Laura R. Moll, MSW, RSW, CGT, CBE, Ph.D. (Candidate), Department of Rehabilitation Science, Faculty of Medicine, University of Toronto Cheryl A. Cott, B.P.T., Dip. Ger., M.Sc., Ph.D., Professor, Department of Physical Therapy and Graduate Department of Rehabilitation Science, Faculty of Medicine, University of Toronto Results Continued… Participants Overview Results Continued… Rehabilitation and health care contribute to the survival and functional independence of people with congenital physical impairments during childhood and adolescence. Research on CP has found that adolescents and young adults encounter difficulties with walking, changes in musculoskeletal structures which contribute to pain and fatigue. Many require ongoing assistance with some personal care. Ironically, emphasis placed on normalizing physical impairment through rehabilitation may contribute to the onset of secondary health problems and functional declines in early or middle adulthood particularly if people lack access to ongoing rehabilitation as they age. To present key preliminary findings from a study of growing up and growing older in persons with life long impairment resulting from cerebral palsy To highlight the impact of attempts to normalize their physical performance through the rehabilitation process during childhood and adolescence as they grow up and grow older. Individuals with cerebral palsy were recruited from three sources: 1) organizations for people with disabilities in Toronto ; 2) conferences, and 3) word of mouth. In order to participate individuals had to have an interest in sharing their life stories, be able to understand and communicate in English. Multiple interviews were undertaken to accommodate their impairment s(extra time, and fatigue), and achieve an in-depth account of their experiences growing up & growing older. Each participant attended an orientation interview, and up to 3 but no more than 4 interview sessions. Multiple strategies were used to allow the participation of individuals with communication impairments. All interviews were audio-taped verbatim and transcribed . Narrative inquiry & analysis were used to engage in this process. Analysis and the co-construction of their life stories was iterative and reviewed to identify emerging themes and the central plot running their experience. NVIVO 8 was used to assist in the organization and management of my data. Participants report that they don’t have access to services, programs, and resources needed to address health problems, prevent early declines, and maintain independence as they grow older. I wanted to have some form of physio and everything like this, because I had stopped going at that point to the…Fitness Centre. So, somehow, because of connections she had, she set me up at …, over here, …Hospital, as an outpatient just for some physio. And it worked out for a little while, because at the same time I also found out about conductive education through a friend of mine at ….that I had met, you know, at the time. So, anyway, I got into Conductive Ed and I was doing the physio. But with the physio, because I’m not there in terms of rehabilitation, it’s sort of like just to keep what you have going, within three months it was like, we don’t want to see you anymore. Because I don’t have a situation where like you know I got into a car accident and I’m trying to walk again or something like that. I’m only trying to stay with what I have. The emphasis that rehabilitation placed on normalizing their physical difference was a challenge because no matter how much progress they made physically, their bodies didn’t look or function in the same ways as their able-bodied counterparts. The physical image they were being encouraged to achieve did not reflect the image they saw in the mirror or how they perceived themselves. I went to physio often which I liked sometimes. Other times I think that it negatively impacted on my body image. I think there was too much emphasis on “Walking like a Princess”. I never felt like a Princess. Achieving functional independence is assumed to lead to participation in social life. Providing support and guidance in the acquisition of skills, abilities and knowledge needed to manage life as they grow older is often neglected and discouraged due to low expectations of achievement that that others impute on them. Therapy used to emphasize walking above everything else. I don’t believe it is the primary goal. [I think the primary goal should be] communication, being able to express yourself and your needs, and feelings, so you can control your environment. Not being able to control your environment is demoralizing. That should be encouraged in what ever way you can figure out rather that the conventional way. Participants did not feel that attempts to normalize their experience through rehabilitation support the maintenance of their independence and physical and emotional well-being throughout their lives. Individuals work hard during childhood and adolescences to achieve “normative” functional independence so they can participate in mainstream life, only to reach adulthood and find themselves slowing down, overcome by fatigue, and declines in their abilities to engage in meaningful occupations, and ADL that was easier in the past. Some individuals find it difficult to achieve social, personal, and vocational milestones, while others experience disruptions in these areas in midlife. …one of my biggest fears has been growing old with a disability: My thought process has been…’If I have this amount of struggles now, what will life be like then?’. I’m just starting to deal with what’s comes up, and just, kind of letting it be what it is and try not to make judgements on it. Ten individuals (4 men; 6 women) with mild to severe forms of cerebral palsy between 26-70 were recruited. All were living in the community. One dropped out after the first interview session. Most participants had spastic cerebral palsy with variation in: severity and the number of limbs affected; need for assistance; use of mobility aides; and, educational and vocational pursuits. Four participants had moderate to severe communication impairments. One was nonverbal (used a bliss board to communicate) Results Purpose After receiving the diagnosis of CP, recommendations were usually made to have the child receive rehabilitation. Rehabilitation often involved engaging in one or multiple therapies such as physical therapy, occupational therapy and/or speech sometimes two or three times a week. The emphasis of these therapies was on achieving functional abilities and/or patterns of adaptation considered age-appropriate. A great deal of emphasis was placed on normalizing their experiences by trying to eliminate their physical deficits and in particular learning to walk. Although the participants acknowledge the results they were able to achieve through rehabilitation, they felt pressured to conform to a notion of “normal” that they found difficult to achieve. I think it was very good for them to do those things in terms of like it's helped me do very practical things for myself from a medical standpoint. I can do a lot of things physically and I'm physically a very strong person as well. So I think all of these things are great you know because I can wear a backpack and walk to the post office and things like that. At the same time though I think there's this whole business of normalcy and the idea that we're going to try to make this child walk as close as possible like as close as possible like the normal body or the idea of the normal body. Discussion The findings of this study suggest that the physical difficulties experienced early in life by people with lifelong impairments are a consequences of practices that are designed to manage “disordered bodies” that cannot support these individuals in daily living long-term because their bodies were not structured to function in “normative ways from the beginning. Rehabilitation is very beneficial to people with physical impairments, however, the functional independence and social-psychological well-being of these individuals are threatened in the absence of having access to a continuum of health care and rehabilitation throughout their lives. Methodology Acknowledgements “The authors acknowledges the support of Toronto Rehabilitation Institute who receives funding under the Provincial Rehabilitation Research Program from the Ministry of Health and Long-Term Care in Ontario. The views expressed do not necessarily reflect those of the Ministry. Equipment and space have been funded with grants from the Canada Foundation for Innovation, Ontario Innovation Trust and the Ministry of Research and Innovation”.