In our last post — Privacy, Women with Disabilities and Online Space — we discussed online privacy issues for women with disabilities, as well as some of the things we do to address them as a group. Though it is impossible to summarize all privacy issues people with disabilities face, our team thought it was important to look at privacy through a broader scope. Invasions of privacy are a constant and pervasive part of the experience of having a disability, for many people.
To recap our last post, most online privacy issues are related to creating identity. The Internet has some ability to “normalize” people with disabilities and allow them to disclose whatever information they want when they are ready. If someone is uncomfortable with their disability, they may have no need to disclose their disability online to have a place where they can be free of stigmas that may be difficult off-line. Conversely, if someone is totally comfortable with their disability, they can be totally upfront about it online in order to reach out to others in the disability community. People have different expectations of what privacy means online, but the ability to control what information is disclosed can be a powerful experience that many people with obvious disabilities ordinarily wouldn’t have the freedom to do. The same could be true of gender or any other identity. People can experiment with what they disclose online in ways that feel safe to them.
What we Missed in our Last Post About Privacy Online
A big issue with privacy online we didn’t highlight in the previous post was devotees (people who fetishize disability or associated adaptive equipment such as wheelchairs or canes). There are different camps of thought about devotees in various online communities, though we as a group do not think it is healthy to expose our members to these individuals and do not welcome them in to our spaces. However you feel about them, they are very present and numerous online, particularly if you disclose that you are a woman with a disability. They friend you on Facebook on a daily basis. They frequent disability focused chat rooms. They visit disability spaces on Second Life. They ask inappropriate questions, make lewd comments, and generally treat you like a sexual object. It feels pretty creepy and dehumanizing to most women, and it is hard to escape. Many people develop defense mechanisms to deal with devotees, like asking leading questions when meeting new people online in order to get a better read on their intentions. Most devotees are pretty obvious about their goals. However, some of them are more subtle so can be harder to read, particularly as many people with disabilities are socialized to expect people they just meet to ask really personal questions that others might find rude as a conversation opener (which we go in to more later).
Additionally, some of the ways some companies provide accommodations for inaccessible websites can also violate privacy. Instead of offering accessible CAPTCHAs (those scrambled letters and numbers you have to type in when creating an account) that people using screen readers can utilize, some companies require those users to call in to verify their account. Sadly, free, accessible options to use instead of CAPTCHAs are readily available.
A Larger Picture of Privacy Issues for People with Disabilities
The conference we took part in (PrivacyCampTO2) predominately focused on online privacy, so our conversation started there. People had a lot of feelings about that topic, but also had a ton of things to say about privacy for people with disabilities in general. Not surprisingly, as the very nature of disability can involve a lot of people in your personal space on a fairly regular basis. Caregivers handle your personal body. Medical professionals have you in all kinds of embarrassing, dehumanizing positions in those not quite big enough to cover your behind gowns. You may have to rely on others to help you read or otherwise access private or embarrassing information. (Try shopping for the right condoms on your own when you can’t read the package!) To some degree, most people just acclimate to the constant barrage of invasion of privacy. Particularly if you are raised with a disability, this can lead to both an altered expectation of privacy and a heightened appreciation for the precious little privacy you get.
Invisible or Hidden Disabilities
Even people with more invisible or hidden disabilities have fairly constant issues with privacy, on top of ones already mentioned. Because of stigma and fear of discrimination, some people with non-obvious disabilities may choose to not disclose their disability unless absolutely necessary. Knowledge of a disability can affect how professors treat you, how likely potential employers are to hire you, and how new friends view you before they get a chance to know you as a person. However, people often find full disclosure out of their control. Even simple gossip about someone’s disability can put that individual in the position of having private information made much more public than they intended.
For reasons we will not speculate on, random strangers that people with disabilities encounter often feel it is their right to immediately know really personal information like diagnoses, health status, and any host of other information. Most people will answer to be polite, but think about it: do you normally go up to strangers and start off a conversation with asking highly personal questions? Pregnant women often report this same experience with unknown people invading their personal space (touching their belly, etc.), asking really personal health questions, and assuming what emotional space they are in. It is a common experience of many people with disabilities for the entirety of their life (or disability if it is not life-long).
Unfortunately, that same lack of privacy can often extend to known people as well. Most people report experiences of an extreme lack of autonomy when dealing with caregivers and parents (of children over 18 in particular). Many people have probably experienced trying to get a little private time with that special someone as a teenager, but people with disabilities often stay with their parents longer than others might for practical concerns related to independence. When you add caregivers and nurses to the mix, it can be really difficult to get the privacy needed to explore your very normal sexuality. One person even reported that his nurse was keeping logs of when his girlfriend visited to show to his parents (even though he is an adult), and that the nurse kept barging in to his room despite being asked to wait in the other room. They eventually just locked her out and called her supervisor. This is an unfortunately common tale.
Even if caregivers are respectful, the very nature of the relationship requires a great lack of privacy. That person often knows every intimate detail of your life, like it or not. They often know financial information (though most keep that as private as possible), when you are on your period, how you vote and when you have sex. It requires a caregiver very dedicated to professionalism to keep that information to themselves. The information they aren’t required to meticulously log in your file, that is. Anyone with a government-funded caregiver has their life logged in great deal. How many times a day do you go to the bathroom? How long does it take you to go to the bathroom when you go? How long does menstrual care take you each month? These are standard questions you have to answer (both on forms and in an interview with a government employee) in order to qualify for caregiver and other government funding.
In the United States, some parts of HIPAA were intended to ensure patient privacy, which is a good goal. However, most people have not seen improvements in privacy in ways that are meaningful to them. Mostly, the largest outcome of it has seemed to be making the whole medical process even more complicated, as if the endless paperwork shuffling and constant checking in with a team of medical professionals wasn’t complicated enough.
Most importantly, we discussed that privacy means vastly different things to different people. Some want more, others less. Some know a lot about privacy, others don’t really care to know as much. There are, we are sure, many privacy issues that were not included here in this article. It is just too huge and varied an issue to fully cover in a couple of blog posts, and we would love to hear your thoughts and stories about privacy (below). People are individuals and there is no one experience that describes or represents everyone. The important thing is that people be allowed to control their own privacy in ways that work for them.
Do you have other examples of privacy issues that people with disabilities face? Comment on them below!