Ask Kathy M. Archives
A Collection of Questions and Answers from TBI Advice Expert - Kathy Moeller

Topic: Miscellaneous - The Term "SURVIVOR"

Question:

Dear Kathy M.,

Dear Kathy M,
I keep hearing the term "survivor" when people talk about those of us who have had a brain injury. I'm not sure I like it all that much. What do you think of this term?

Bill B.


Kathy's Response:

Dear Bill,

When I first heard the term, "survivor," I wasn't sure how I felt about it either. It was shortly after my own injury, when I went to my first "survivor support group."

Historically, it's my understanding that the term "survivor" has been used for many groups of people who have survived traumatic or life-threatening events. I'm guessing that the term was coined by people who were not themselves part of the group(s) being described.

Over the years I've had many discussions with my peers, their family members and professionals about how we use language to describe ourselves and our disabilities. My feeling is that "the jury is still out" on this one. I have made a personal choice to not use the term any longer however. I can't help but associate the word "survivor" with the Holocaust, and right or wrong, this does not give me a word picture (image) that works for me.

In some of the e-mail discussion groups on the internet, discussions about language have shed some light on this term and others used to describe various disabilities and those of us who have them (for example, being a "victim" of one thing or another, being part of a group referred to as "the disabled," or "the brain injured," and even terms such as "brain damage" as opposed to "brain injury" or being "confined to a wheel chair").

There is a movement within the community of persons with disabilities to use what is called "person-first language" and also to use language that empowers rather than limits. An example of "person-first language" is to refer to someone with a brain injury as a "person with brain injury" as opposed to a "survivor" (of brain injury), or as someone who is among a group called "the brain injured." Similarly, one would not refer to a person who uses a wheel chair as being "wheel chair bound" but rather, as a person who uses a chair.

I have to admit that I feel like a person first -- meaning that I am a person who just happens to have had a brain injury eight years ago. I don't like to lead with my disability as my major identifying factor, any more than I would lead with the fact that I'm a wife or a skills trainer, or happen to be a member of a certain race or religion. . . if that makes sense.

Language can empower, and I believe it can harm (or put a damper on how we feel about ourselves). I also feel those of us who are in a particular group have a role to play in the discussion about how we are described. I've chosen to be pro-active in this regard and let people know that I tend to bristle, for example, when I hear the term "brain damage." In my view, things are damaged and people are injured, so I tend to use the term "brain injury," just as I would "back injury" or "knee injury."

I guess this is the long way to say that we can probably do better than "survivor" but it's up to each of us to make a choice. When I hear the term being used to describe me or a group of individuals with brain injury in which I participate, I try to be pleasantly assertive about it by simply saying, "I prefer the language, 'person (or persons) with a brain injury.'"

Kathy M.

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