MEMORIA DO PROGRAMA DE ACTUACIÓNS INVESTIMENTOS E FINANCIAMENTO PREMISAS E LIÑAS PRINCIPAIS DO PLANTEXAMENTO ESTRATÉXICO

All the men in this study shared narratives on how they believed that they would never be able to do the things that they did prior to the injury, like walking, dressing themselves, driving, plumbing, and even going to the toilet. This realization made them aware of the link they made between the loss of their physical independence and paraplegia. The loss of physical independence amongst people with disabilities - determined by the loss in individual capacity to do things for oneself, was consistent in the findings of other studies (See Galvin, 2005; DeSanto-Madeya, 2006; Dabhi, 2015).

Men like Devon, Albert, Ridah and Wendell expressed sadness in their experiences of dependency on others to assist them in the things that they could not do for themselves. This increasing dependency made them feel as though they were being treated like an infant. Consider Devon, for example, who had been living with paraplegia for the last two years. He poignantly expressed feelings of shame due the loss of physical independence.

DEVON: Ek was ’n bietjie skaam, want ek sit in ’n stoel en word gestoot. Ek pee myself nat, en maak my broek vuil want ek het nie beheer oor al daai dinge nie. Ek moes ’n katetel gebruik met ’n sakkie. Ek voel skaam, want nou moet iemand my skoon maak, my hande was so swak dat ek dit nie self kon doen nie.

I was a bit shy because I sit in a chair and get pushed [around]. I peed on myself and dirtied my pants because I do not have control over all those things. I had to use a catheter with a bag. I feel ashamed, because now someone must clean me, my hands were so weak that I could not do it myself.

Here Devon expresses feelings of shame in that his identity as a man is diminished to that of an infant due to the increased dependency on others. He had to depend on others to change and assist him with his bowel movements and to clean his body. His sense of masculinity, which is signified through being physically active is diminished to a state of “uselessness” and “neediness”. This “neediness” contributes to a great deal of shame.

Feelings of shame in relation to the loss of physical capacity to do things for oneself seems to be a pertinent experience across other studies on individuals with disabilities (see Cole, 2004; Galvin, 2005; Saxton, Curry, McNeff, Limont, Powers, & Benson, 2006). Devon continued to express feeling belittled and states that watching his wife do the things that he could not do for himself was a, “groot knaak” – “a big crack”, in his life.

Albert had been living with paraplegia for more than five years and often feels as though he is a burden to his family in asking for assistance in the things that he could not do. Feelings of being a burden to others is consistent in other studies (see Cole, 2004; Galvin, 2005, Saxton et al., 2006; Ostrander, 2008). Because Albert perceives paraplegia as a burden based on his reliance on others, also introduces an element of feeling morally inferiority. Galvin (2005, pg. 403) research shows that being a burden and feeling inferior contributes to feelings of shame because the “fulfilment of these needs is seen in terms of ‘burden’ and ‘self-sacrifice.’” Consider Albert, for example, who expressed his frustration in being a burden to his family. ALBERT: Elke keer moet ek roep, “bring gou vir my daai, bring gou vir my die, help my gou.”

Die mense het nie altyd die gedult nie, en hulle het nie lus vir dit nie.

Every time I must call, “bring that quickly, fetch this quickly, help me quickly.” People do not always have the patience, and they don’t always feel like it.

During Albert’s diagnosis procedure, the doctors explained to him that his sickness had severely affected his spinal cord. Albert was perplexed since he had no knowledge about spinal cord injuries or what it meant to live with such an injury. The only thing he understood about the injury was when the doctor explained that he would be like a baby. Even then, Albert did not gasp the full intensity of this statement. He only became aware of what it actually meant when he realised the extent to which his loss of physical independence impacted him.

ALBERT: Die dokters sê vir my: “Mnr, jy is nou weer soos ’n babatjie. Jy sal nou moet weer leer om te loop.” Dit is ’n verskrikelike gevoel. Dit kraak jou af. Dit voel of jy klaar is met die lewe.

The doctors said to me: “Sir, you are now like a baby again. You will have to learn to walk again.” It's a terrible feeling. It breaks you down. You feel as if you're done with life.

Ridah acquired paraplegia through a motor accident. He does not remember much about the accident. He only remembers feeling dead after waking up five days later in the Intensive Care Unit. Through his experiences of living with paraplegia for the last seven years, he firmly contributed to the narrative of shame and the idea of infantilization. He emphasized the need for assistance from others in relation to an infant needing care and assistance from others to survive.

RIDAH: I can’t exist without people in my space. It is probably the most difficult thing that I had to face. Life changes, our lifestyle changes, everything changes, now you are dealing with a big person who is a baby.

Like Devon who mentioned that being treated like an infant is a crack in his life, Albert also says, “dit kraak jou af”, which could also be translated and interpreted as the literal meaning of “it brings you down” from being a grown, physically strong and independent man, to being weak and dependent like a baby. It could also be interpreted as the figurative meaning of ‘bringing you down’ emotionally, spiritually, and psychologically.

The reality of losing physical independence, and the experience of feeling ashamed and infantilized, is emasculating. This was also echoed among male respondents in Cole’s study (2004). In this study, Norman and Franklin are the only men who shared narratives on their thoughts of committing suicide after they learned that the injury had impacted their masculinity through the loss of their physical independence. Since the onset of paraplegia, Norman felt trapped in his body and viewed his current body as something that did not belong to him. Due to the loss of independence and the shame he felt about being in this body, he contemplated suicide on numerous occasions but could never get himself to do it.

NORMAN: I was thinking of killing myself because this is not a life. I can’t live like this, because I looked like I was a child.

Here Norman’s feelings of shame is viewed in relation to his inability to do what he did prior to the injury (Galvin, 2005), and his dependence on others (Galvin, 2005, Saxton et al., 2006; Ostrander, 2008). Feelings of shame here is related to the physical changes and limitations of the body (Cole, 2004; Galvin, 2005). These factors contributed to Norman’s perception of being treated like a baby and his subsequent thoughts of committing suicide.

Franklin acquired paraplegia in a rugby match he played during his stay period in Pollsmoor prison. He described the moment of contact when he broke his neck as, “’n skok in my liggam” – “a shock in my body”. Franklin also had no knowledge about spinal cord injuries. After his doctor explained to him that he would have to learn independence like an infant, he pleaded with his doctor to give him an injection that would kill him, because being treated as though he was a baby at the age of thirty-six meant that his life was not worth living. Franklin closed his eyes as he reflected on the day that he had this conversation with his doctor.

FRANKLIN: Sy [the doctor] het gesê ek sal moet leer om dinge te doen soos wat ’n baba leer om dinge te doen. Dit was seer. Ek het vir haar gesê, “gee vir my’n dood inspuiting”, toe sê sy vir my, “you must say, ‘God, thank you that I survived.’”

She [the doctor] told me that I would have to learn to do things like a baby learns to do things. It was painful. I told her, “euthanise me”, then she said, “you must say, ‘God, thank you that I survived.’”

The fact that Franklin was adamant and willing to sacrifice his life because he could not imagine living a life of dependency whilst simultaneously relearning independence, is very telling. However, the doctor made him aware that he had been given a second chance. All men expressed gratefulness about being given a second chance. This was also found among respondents in Cole’s (2004) study.

The above representations of feelings of shame and infantilization shows the extent to which the injury had impacted these men’s sense of masculinity, and more importantly, how the injury had impacted their lives. Furthermore, the narratives show how strongly the need of constant care and assistance is strongly associated with feelings of shame and embarrassment. The drastic emasculation process in which grown men are reduced to an infant-like status is significant here. Because of this, men like Norman and Franklin were consumed with thoughts of committing suicide. However, the fact that they are still alive, albeit with paraplegia, allows one to argue that perhaps they may have developed a different understanding of what it means to be a man. This is what I aimed to explore later in this chapter.