From a Former Client

Editor’s note: Cindy is an amazing person, whose life was terribly changed by a an accident she suffered. She was brilliant, and still is one of the most creative and interesting thinkers I know. Yet:

I’ve been following this discussion regarding terminology and it has generated a lot of thoughts for me. I have problems with short-term memory….ordinarily I would go back and read all of the postings to compensate so that I could choose what I say carefully, so that I am responding in an intellectual, thoughtful way making sure I’m following the conversation. This time, I’m not going to do that. I’m just going to take a risk and share with you what I’m thinking at this moment in time.

I resent someone telling me how I should or should not refer to myself, whether I should always use “people first” terminology and avoid labels, what is the best word to use to further whatever cause. To respond only one way at all times, focuses energies on changing only one particular area that needs to be addressed. There are many issues to be tackled and context and what to say within that context are critical.

I might decide to refer to myself as different labels at different times, all depending on the context. For example, I proclaim myself to be a victim. I am a victim of medical incompetence, of an unjust legal system, of uneducated, misinformed people in our society who serve on juries and disability advisory boards. Calling myself a victim is appropriate because I want the acknowledgment that there are people in power who have hurt me and others like me. To call myself a survivor in certain situations may actually allow others to ignore the abuses of such power and the damage/challenges it causes to people with TBI/ABI.

I might refer to myself as a survivor in a group of people with TBI/ABI because I am acknowledging that this journey is filled with a incredible challenges and I want to give myself and others credit for the strength that it takes. I am less likely to refer to myself as a survivor to a different group of people because doing so might make it easier for them to not do anything about these challenges…after all, they will point out that I and others have been able to “survive.” To claim I am a survivor to these people perpetuates the idea that “life is unfair” and you need to “suck it up” and “pull yourself up by your own bootstraps.”

I prefer to say that I am brain damaged. Allowing others to say that I have a brain injury implies that the trauma which happened to my brain isn’t all that bad, it’s just an “injury” and will heal. My brain has been damaged and my life and what I am able to do and how I am able to do it, has been forever changed. Yes, the brain has the ability to heal, but in my case it is NOT a quick fix. I’m still struggling with finding anyone knowledgeable enough to tell me what can be done for my problems, figuring out transportation issues of how am I going to get there if I do find someone, and where is the money going to come from if I’m lucky enough to find someone. I am brain damaged and I will not make it easy for others who do not understand the difficulties encountered regarding treatment, be it things that will get better or accommodations I may always need to make. This is not something that a “band-aid approach” or “time cures everything” will help.

To someone else who is only looking at one aspect of who I am, I will proclaim that I am a person with brain damage, with a handicap, etc., but I am not these things alone. I will use and push them to use “people first” language. Any person, no matter who they are and what categories they fall into, has strengths, challenges and rights. There are extremely intelligent people who have handicaps perhaps when it comes to their social skills, and extremely handicapped people who have amazing strengths when it comes to their perspective on life and what is truly important.

I am not saying that everyone, therefore, should believe and do what is right for me. I am pointing out that this is not a simple issue of what “terminology” is right or wrong. For me, much of it depends on the context of the situation–who am I interacting with, how are they treating me, what is the most important thing I want to communicate in that interaction? Don’t assume that a person using a specific word is doing so out of disrespect or ignorance or that they are undermining a particular effort or movement. When in doubt, ask.

Just another perspective to throw into the mix,
Cyndi from Cinci

Any one have any additional ideas to share?