Privacy vs. Confidentiality
I am puzzled by one of the statement's in "Maxwell's Highlights". I heard Maxwell say "A focus on privacy rather than confidentiality helps to protect students with disabilities from discrimination." As used in this statement, what is the difference between privacy and confidentiality?
Vickey,
Think of it as the difference between "privacy" and "secrecy." For a long time, folks have shied away from ANY conversation about disability in front of ANYONE, under ANY circumstances because they were so hung up on confidentiality as an absolute "right." We are moving, now, to a focus on privacy in the context of the information being sensitive, private, not to be bandied about. We aren't going to cut out your tongue if you say something aloud (grin), we are just going to ask that folks use good judgement and remember that this is private and shouldn't be shared unless there is a REASON for it to be shared.
Dr. Jane Jarrow
I agree with the distinction. However, I think there is a reasonable expectation of confidentiality within reason when it comes to students self-identifying a need for accommodation. I have taught many students who have self-identified with a learning disability. It was important to me as their instructor to keep that information as private as possible as not to cause embarrassment or to single out the student while I accommodated them. I have also had students with disabilities use them as a teachable moment with the rest of the class and actively seek to share to make the other students aware. I often find it best to take the lead of the student as to how they want the situation handled while respecting their privacy.
Cambria,
I think you make a good distinction, Cambria, between how the information is handled within the institutional structure (among faculty and staff) and how the information is shared in the classroom. I agree that students have the right to expect that information about their disability, or even their status as a person with a disability, will not be shared with other students without their express consent. The emphasis is always on sharing information ONLY if it is in the best interest of the student to do so. There may be instances among faculty and staff when such sharing will help to assure that the student is provided with support or consideration that is needed and appropriate. I cannot think of a way in which sharing such information with other students would benefit the student with a disability in any way -- so it shouldn't be shared!
Dr. Jane Jarrow
I had a similar question about the "privacy and confidentiality statement". I would assert that good judgment is the optimal word in the previous response. There are those who must be impressed upon to use their judgment and therefore need more specific guidelines. The misuse of information can be detrimental to the student reputation. In order to provide the necessary accommodations, those who are directly involved (i.e. faculty and program chairs) should have knowledge of the not only the accommodations needed but ways to limit the appearance of ADA "treatment". I find there is a balance in providing students with an environment wherein they can reach their highest potential and feel comfortable and at ease with their educational experience.
Crystal,
I don't disagree, but I am not sure what more "specific guidelines" could be offered beyond, "this information is private, sensitive, and confidential and should be treated as such." I don't think it is ever appropriate to discuss the student's disability or disability-related needs with the class or in front of the class (that is, discussing those needs with the student while others are in earshot). But neither am I a big fan of going to great lengths to allow the student to pretend he/she does not have a disability. One of my pet peeves is setting up a blind notetaking system for students with disabilities who need notetakers in class, arranging things so that the notetaker turns in notes to some neutral location or party where they are picked up secretly by the student with a disability. The notetaker never knows who the notes are for because the student with a disability doesn't want anyone to know. For lots of reasons, I don't think that kind of secrecy is in the best interests of the student or the institution.
Dr. Jane Jarrow
I agree with you especially in last part of your statement. To use good judgment and remember share information if there is a reason to share it. Often times I think many people share too much about others even if there is not a privacy issue to worry about.
Amanda,
Agreed. Information about disability is often sensitive -- more so to to the person with the disability than to someone else who happens to be in possession of that information. It should be shared carefully (if at all).
Dr. Jane Jarrow
