March 12, 2007
We are delighted with the volume and quality of the comments we continue to receive from the participants in this project. One recent question concerned the usefulness of two draft checklists we developed, one for survivors and one for caregivers. Another question asked if the term "survivor" is insensitive.
The majority of the comments we received about the checklists were positive. But a sizable minority of participants felt that the list was hurtful, insulting, and even worse. Many of you argued that having a checklist transforms the person with a brain injury into a project that needs fixing. This, of course, is not our intent. We sincerely apologize for the distress we caused some of you. Clearly, we still have much to learn.
Also, some higher-functioning survivors and their caregivers were offended by the presumption that we thought they were incapable of identifying some of the more elementary items on the list. To be told, for example, that "you need to be respectful and considerate of your helpers’ time and effort" rankled a number of you.
So, we carefully reconsidered the purpose of the list, renamed it, wrote some introductory paragraphs to clarify our objectives, added and subtracted some items, and rephrased them all. Please let us know what you think of the changes.