Last week, I turned 57 years of age. With retirement now less than 27 months away, there is an opportunity to reflect on what has occurred to this point in my life. This reflection necessarily includes a determination as to how I have coped with living as a person with a physical disability. Surprisingly, as time has gone on, the concern of what was once a very uncertain future has diminished significantly, likely in part due to the process we all go through, to define ourselves and our normal state of being. I believe this process is to a large extent based upon two words which defined my past and likely has significant application to all persons with cerebral palsy. Those words are acceptance and adaptation.
As a very young child, it never dawned on me that I was in any way different. I suppose that at the age of five, I thought all the other five-year-olds were doing as I was, going daily by Easter Seals bus to GF Strong for treatment and to attend kindergarten. The two years I attended school at GF Strong was my normal, which obviously became a different normal, when I entered the public school system. As would soon become apparent to me, what I thought was normal was somewhat different in the world of public school, given that I was the only disabled child in the school. This was one of my first experiences with the two words adaption and acceptance, both for myself and for those who I met. One has to remember that in the mid-1960s, integration of disabled children into our public schools was not anywhere near the extent that it now is. In fact, to some extent, integration was still frowned upon and the idea of institutionalization of those who were different remained the norm. I guess, to an extent, I was one of the trail blazers on this particular issue. Adapting to my ‘new normal’ in public school meant that I had to understand that the great majority of children would see me as one of them, as long as I did my part and treated them with the respect which I was hoping for. There would always be the stares and the odd comment, which is often the response of others witnessing a difference in their environment and it is often the response toward any person who is in any way different. This would have to be accepted by me for the rest of my life, which was initially easier said than done but soon became apparent that this will be part of my challenge to rise above it all. Again, acceptance and adaptation. Fortunately, there was more than enough support and acceptance to keep my head up and soldier on. It also became clear that I had to adapt somewhat to this reality and there was somewhat of an obligation on me to educate the other children on what my disability was and what it was not. It was not something that they needed to be afraid of nor would they catch anything simply by hanging out with me. It was simply something that happened at birth, that’s the way it was, like it or not.
The hand you’re dealt
This perspective was one that I maintained all my life, one that aligns with the idea that we are dealt a certain hand in this poker game called life and that you either played your hand or you folded. However, those that tend to fold tend not to enjoy the highs and lows of the journey through the game called life. Thus, I grew up with the view that I could either “fold”, or I could discover the value of the cards I held and adapt to my reality, regardless of what I may not be able to do. It soon became apparent that there were plenty of goals I could achieve. Part of the exercise was identifying what were those goals which would push me to achieve new limits physically and mentally. It was also a challenge to identify the fear involved in pursuing the challenges and eradicate such fear to the best of my ability. It is this honest effort and approach which fortunately won me acceptance among my peers, particularly as I grew older. It became my obligation to do all I could to ensure people around me were comfortable with my disability, understood what I was all about and what I should be held accountable for.
A roller coaster
The roller coaster of living with a disability mirrors the highs and lows of the life cycle of a young child, adolescent, young adult and aging adult. The difference for me was to try to incorporate whatever challenges my disability brought into the challenges which life itself brings and to try to accept those challenges in the best way possible. To me, the ability to get the most out of life meant I required acceptance, both myself for my disability, and from the world for who I was. Acceptance and adaptation are two major aspects of travelling the journey with the disability. However, the achievement of these concepts require a considerable role on my part, which in turn requires me to identify and accept the process which I needed to pursue. Acceptance and adaptation are not concepts which naturally flow directly to anyone, unless there are positive steps taken by the individual to allow these concepts to occur. In the world of a disabled person, it is undoubtedly more of a struggle to identify and accept the processes which we have to undergo to get to the point of achieving purpose and success; however, it is an essential exercise that we all must go through.
It is an interesting journey for me, particularly with respect to being a single person as a young adult, a married man, a father of a daughter and a professional for almost 30 years. All of these roles have their demands, which I’ve had to fit into my normalcy of being a disabled person. That requires a certain amount of adjustment, compromise and knowledge with respect to what I can and cannot do physically, particularly as I age. This is a process which everybody goes through, regardless of ability or disability. It is perhaps a reflection of the perseverance and the capabilities of the disabled person to go through what is undoubtedly a difficult process for many people, with the additional challenges of their disability and yet still endure and in many cases, succeed and excel. The examples of this are numerous throughout the disabled community and speak volumes to the potential which is inherent within us all, regardless of ability or disability. First Published on worldcpday.org Date: 7 Oct 2016 Category: Quality of Life Author: Robyn Cummins