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For participants the examination of occupational identity and the negotiation of a new occupational identity were influenced by the environmental context and the society the participant lived within. Participants spoke about how they perceived societal views about themselves as a brain injury survivor and the impact of negative labels on their resumption of occupations and re-development of occupational identity. Several participants spoke about

experiencing a “...wall...” (Martin J.) or labels such as “disabled...weird” (Mary S.) after their injury. The experiences of being labelled lead several participants to disengage in occupations. The following sections describe how participants experienced negative labelling in occupations and the impact of the negative stigma on their occupational participation.

4.3.4.1 Encountering labels and walls. Post injury participants recognized a change in the way others in society viewed them. For some participants the recognition of the brain injury label by others lead to discontinuing certain occupations to avoid experiencing the negative labelling. Four participants felt the label generated by those around them created a separation between those with a brain injury and those without (John S., Martin J., Mary S. Shawn B.). John S. noted:

“We can do things just as well but people hear head injury and a screen goes up. I know I will never be normal again but we can still function just our brain doesn’t work as well.... I was guilty of thinking that way too. Since my brain injury I met a lot of talented people with a brain injury. There is one guy who I talk to and you would never know he had a brain injury, he is really smart. I’m lucky, I look normal, I have no physical deformities.”

A second participant, Martin J. also shared his thoughts on recognizing the stigma he faced after returning to work, “I wasn’t being treated as a working individual. I was doing things the rest wouldn’t do. People would hear I had a brain injury and a wall would go up. I was still capable of doing things. The accident didn’t prevent me from doing what I did before, other people did.” Two participants, Mary S., and Shawn B. experienced their brain injuries at a young

age and returned to school after their injury. Mary S. commented on the stigma she experienced when she returned to school,

“Well I got teased and called names....I heard I’m disabled, you’re weird....I had to move up here with my mom.... There is a lot of names for us...It was very hard to go right back (to school), there’s very little in place to help, hard to not be able to carry on. It’s

embarrassing to have a brain injury nobody wants to have a brain injury. You look weird and people think you are not normal either, maybe we’re not.”

Shawn B. also returned to school shortly after his injury and found re-adjusting to being at school difficult. When asked how the transition back to school could have been easier he replied, “People being compassionate, understanding. You don’t just start labelling.” Other participants also noted labelling and stigma by others created a challenge to re-engaging in occupations and this caused participants to discontinue some occupations.

4.3.4.2 Discontinuing occupations. In managing the negative label, two participants (Amelia E., Reagan P.) suggested they removed themselves from community occupations as a temporary solution to avoid the brain injury label. Amelia E. initially avoided attending the center and outside activities for brain injury survivors, “I didn’t want to come, I didn’t want to be branded a freak.”

Reagan P. also discussed not continuing with certain occupations after her injury. Having worked full-time prior to her injury Reagan recounted spending the first 10 years after her brain injury at home not working. When asked what she did after her brain injury occurred she responded, “Absolutely nothing. I hid at home and watched TV all day....”

Two participants (Martin J., Amelia E.) initially attempted to return to their previous paid occupations and took an alternative approach to manage the stigma. Martin J., for example, noted that when he returned to work, “I just did my job, once they seen I was a good worker and I had the same morals, I kept doing. I am capable at doing a lot of things.” Shortly after returning to his paid occupation Martin J. felt the pressure of this occupation made it too difficult for him to continue, “Well it was like jumping out of the frying pan into the fire...I thought it was about time to get out of here while I’m still alive,” and Martin turned to volunteer activities at the center instead. Similar to Martin J., Amelia E. also reported she felt the need to present her abilities to others upon returning to a paid occupation after her brain injury, “At first I was treated like a 16 year old. I had a hard time standing up for myself.” Amelia E. also discontinued her paid occupations and began to volunteer a few hours per week at a center for brain injury survivors.

The process underpinning a shift in occupational identity began with recognition of new limitations and abilities to take part in occupations, followed by shifting occupations to manage the label of having a brain injury. The third and final stage of the process involved in re-

developing occupational identity seemed to resemble a disconnection from the society of non- brain injury survivors into relationships and new occupations surrounded by those who also experienced a brain injury.