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MAKING SURE WE BRIDGE THE COMMUNIATION GAP BETWEEN PROFESSIONAL “LINGO” AND BRAIN TUMOR SURVIVORS

By Stacia Wagner
Friday, March 9, 2012
CBTF staff
CBTF staff

Children’s Brain Tumor Foundation is collaborating with several universities to implement a Career Development Program. The text was written by a vocational rehabilitation psychologist who has worked with survivors for about four years. He has a professional understanding of their needs and current gaps in services. We asked a group of survivors (excitedly I may add) for their opinion on the landing page. Several survivors responded that the text made them feel that this was a program for people with significant intellectual disabilities. When I reread the text with their comments in mind, the problematic wording was so obvious.

For example, we had written the phrase “appropriate occupational activities”. Even in the beginning of my career decision process, I was not looking for “appropriate occupational activities”. I was looking for a career that matched my intellectual and personality strengths. I probably did not even think of it in those terms, but that is a much better match than what we had written. One survivor wrote that, to him, the phrase “sounded like survivors were in an insane asylum”. To survivors, vocational rehabilitation sounds like a job setting where a person learns a repetitive job because that is all society feels they are capable of. Because the field of vocational rehabilitation represents so much more, those of us who collaborate with professionals in the field assume that everyone knows what it means. We make referrals to vocational rehabilitation and without knowing it, shut off future conversations.

For many brain tumor survivors, middle school and high school were already times of isolation. While special education and classroom inclusion has improved dramatically the past several decades, which does not mean the cognitive challenges of a brain tumor survivor are not frequently misunderstood. Oftentimes they are placed in settings with people with significant behavior or intellectual challenges. Or they are seen as so significantly different that they do not fit in the classroom with their peers. People frequently associate survivorship with a drop in intellectual ability. As a result, many survivors do not reach their educational or occupational potential.

The way we word or promote a program can either make or break the program. The moral of the story is “ask your audience what they need and how something sounds before you introduce a program”. Make sure what you are saying will be interpreted the way it is meant to be interpreted

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