Subj: Online Privacy: Perspectives of San Francisco Bay Area Network on Disability (SF 
BAND)
From: Jean Nandi, SFBAND, 202-530-7888, jeannandi@aol.com,
http://members.aol.com/jeannandi/HOMEPAGE/SFband.html
To: Internet Caucus Advisory Committee

IS THE INTERNET GENERALLY ERODING OR ENHANCING INDIVIDUAL'S PRIVACY?

Persons with disabilities are increasing their use of the Internet for researching 
information about their disabilities and illnesses. We are using the Internet to access 
government websites for information about laws and regulations that affect their lives. We 
use the Internet to acquire an education, formally or informally. Wherever possible, we use 
the Internet to pay bills, to fill out government forms, to shop for medical supplies, for books, 
for travel services, even for groceries. We use the Internet increasingly for socializing and 
for supporting each other in coping with their disabilities.

People who are significantly disabled have found the Internet a boon for carrying out 
these everyday occupations, and may indeed be entirely dependent on the Internet for 
doing these things. This makes us potentially extremely vulnerable to Internet practices 
which result in private information about the websites we frequent and purchases we make, 
as well as email addresses, social security numbers, credit card numbers, and the like 
being accessed by programs run by commercial enterprises seeking to make a profit by the 
use or misuse of this information. Worse, members of the disability community have been 
increasingly suspicious of proposals by government agencies to collect genetic information, 
data on births of persons with various “defects,” and other medical information purportedly 
sought for research purposes. While the Internet has a potential for assisting in providing 
medical information or purchases of prescription drugs and the like, patients are leary of 
having their private medical information or medical records stored where they can be 
accessed online for potentially unscrupulous purposes.

As SF BAND member Maggie Dee has stated, “Privacy means protection from the 
unwanted invasions by medical, professional and legal entities that do not belong in my life. 
I want to be in control over who gets my information and for what purpose. To think that my 
privacy could be violated! And now I realize that it has. Why offer the world (the Internet) to 
a person, otherwise confined to a day-in-day-out one-room existence, only to have that 
small private space no longer under the control of the person living in that space? Rather it 
is filled with filth, with loan offers to the poverty stricken--shams, advertisements that have 
nothing to do with anything in your own life. And the more you share of a person's life, the 
more an entity can keep digging for more. It is a disgrace that anyone should have access 
to my personal information. Yet, I am realistic. I know that every time I sign up for anything 
online I suddenly get a slew of advertisements that I did not ask for, nor would have asked 
for.”

Even more ominous is this additional thought, indicating a fear of the utterly 
unscrupulous accessing personal information. “The more I hear on TV about youngsters 
cracking corporate and government computers, the more I stop and think about the harm 
such violators can cause....always building the better mouse trap.”

But is there anything, really, to be done about this? For the most part, “caveat 
emptor” would seem to be the only practical approach--forewarned is for the most part 
forearmed. However, when Internet Service Providers sell their subscriber lists, here is a 
recommendation from one of our members: “The service providers should be taxed heavily 
for selling these lists and should be required to notify people that this is being done and 
required to offer at the same price service that does not send cookies.”

For advocacy groups operating news groups and listservs, the leader of a 
nonprofit promoting independent living for persons with disabilities (SF BAND member 
Patrick Connally) has this to say: “One of the big concerns this week in California's 
disability community, has been that studies by psychologists, social science types, and 
marketing people have been based on spying in chat rooms and email lists. I don’t mind. My 
policy is that email lists, chatrooms, and the Internet are not ways to share confidential 
information. They are very open media sources and, like commercials on TV, a cultural 
monitor.”

“The non-profit organization I am with (Disability Rights Enforcement, Education 
and Services, or DREES) hosts an unmoderated email listserv (drees@marin.org). We tell 
new members that posting to the list is like writing letters to the editor, their emails are 
published as if in a newspaper or magazine. What is written and posted on the listserv 
already can reaches a hundred people, and can reach all of disabilitydom if it is good 
enough. A good piece might be passed on to thousands of others in local newsletters and 
other lists.”

“It is certainly in bad form to spy in Internet spaces which are open to all. If I were doing 
the research I would introduce myself and outline my project. However, when it comes 
to moderated or limited access Internet spaces, such as support groups, I think spying or 
not telling people that they will be studied is very wrong. It works against competent therapy 
or preventive interventions because it undermines the basic trust in any practicing 
professional. I do not know what to do about marketers, but social scientists should not 
tolerate it. On the other hand, look at the good side of the Internet for the ‘studied’ classes. 
For the first time large numbers of people with disabilities, their families and their supporters 
can be reached without going through a service agency. The Internet is direct to the 
people.”

“As a person with a disability, I often feel like a study object. I often think that the 
Internet would make it possible to develop a convenient template survey answer so I do not 
have to keep answering the same questions on every disability consumer survey. It would 
be rather like a resume, and every year my friends and I could worry about updating our 
survey template. There would be workshops and training on how to making your survey 
attractive to potential researchers. We could even hire each other to fill-out the forms! An 
annual survey could begin a whole regulatory process with office staff to ensure that only 
real institutional providers submitted proper survey forms as part of a comprehensive plan 
to stop patient abuse. Makes as much sense as all the current Medi-Cal paperwork which 
purports to stop fraud, or the 25 years of studies, pilot programs and surveys I have 
witnessed about personal assistance, attendants, home health aids or whatever the funders 
and regulation-huggers want to call these important people. Studies are still being funded 
and rotten wages are still being paid to workers. The Internet has not changed the fact that 
the money is there to study, but not to pay workers or to provide needed technology and 
other assistance.”