Why Privacy Matters for the Online Disability Community

In my regular correspondence, I’m in contact with people all over the world, and due to the fact that I cover disability issues frequently and am active in the disability community, many of my correspondents are disabled. Some of them I know in the sense that I’ve met them in physical spaces; I know their names, I know what they look like, I’ve been invited inside their homes. Some of them I know only as pseudonyms, with vague information about where they live and what their lives are like. Others have trusted me with very dangerous information: their pseudonyms and their wallet names, the connecting pieces of a puzzle that could have lifeshattering consequences if it was put together and shared.

As with many online communities, the disability community relies heavily on the ability for individual participants and users to control their degree of exposure. Some people prefer to be utterly anonymous. Others are active in the community under a variety of pseudonyms which may or may not be linked (or may be linked privately among close friends but not publicly—for example, a disability activist might write fanfiction under one name and participate in disability conversations under another). Others work under one stable, known pseudonym, which in some cases becomes so well-known that it actually becomes more familiar and widely used than their wallet names.

Others, like me, write openly under our own names.

The degree of exposure individuals choose depends on a range of factors, and many people don’t understand the concerns that can come up with privacy in the online disability community, including concerns about safety, housing and job discrimination, profiling, and other threats.

For people with physical impairments, any meeting in physical space is one in which impairments become immediately obvious. When you are fortunate enough to see Jesse the K, for example, the probability is high that you are going to notice she uses a wheelchair for mobility, and this is also something she widely discusses in her writing and within the disability community. Physical impairments make it easy to profile and discriminate against disabled people, whether you don’t want to hire them, want to take their children away because you think they are unfit parents, don’t want to offer them a lease agreement, are monitoring them for law enforcement reasons, or view them as easy targets for rape and abuse.

Thus, for physically disabled people being active online, there may be certain concerns about being both openly disabled and openly identified. It’s one thing to talk about being, for example, a 30-year-old blind woman. It’s another to provide your name, detailed information about where you live and work, and other data. This could in turn be used against you; you could be stalked, targeted for abuse, harassed, simply because you’re disabled. Images of you could be used by devotees, and you could be one of the many physically disabled people who is stalked in devotee communities that provide updates on ‘spottings’ of their favourite targets.

It may be safer and more secure to write under lock, to write under an assumed name, to make it harder for people to identify and out you. Not because you want to hide your disabilities or who you are, but because you need to protect yourself, and you acknowledge that there are certain social risks involved in being out and disabled, especially if you are outspoken. Disability activists who fight for our right to engage fully with society are often targeted for highly abusive behaviours, and thus they have good reason to want to protect themselves; even those writing under our own names take reasonable precautions when it comes to our physical safety.

For those with so-called ‘invisible’ disabilities, the risk of immediate outing in physical environments is more complex, and not as certain; unless someone does some snooping or is highly observant, a disability may be missed. Perhaps someone doesn’t catch the signs of stimming in an autistic waiting for a job interview, or doesn’t notice the distinctive tics some people develop on psychiatric medications. People can choose to live with their disabilities more covertly, or can be more aggressive about outing them, on an individual basis.

But for mentally ill people in particular, there are huge risks associated with being outed. Being known as a mentally ill person can expose you to the risk of employment discrimination in the form of being fired or not being hired in the first place. It can result in having your children taken away, or having the police called on you. Your community can grow suspicious of you. Like your physically impaired counterparts, you can be targeted for rape and abuse.

Especially if you’re writing about the intimate and immediate aspects of mental illness: people writing about active addiction recovery, struggling with medication adjustments and treatments, and daily struggles with suicidal thoughts, self-harm, and other mental health issues in real time are highly vulnerable. Their voices are important and deserve to be heard, and they make up an important part of the amazing body of work coming from the disability community, but at the same time, they must be able to interact and communicate from a protected position, because they could be in grave danger if identifying information got out.

Imagine the military employee secretly seeking treatment for mental illness and writing about his experiences, trying to rally people to change military policy on mental illness and clearances. Or the single newly-diagnosed bipolar mother with parents-in-law who are eager to come up with an excuse to take her children away from her. Being outed can result in life-changing and terrible things, making it clear that the decision to write anonymously or pseudonymously isn’t a small choice, and is one that urgently needs to be both respected and protected.

Outing someone may seem like a small thing, just as demanding real names for online services might seem totally reasonable, but these attitudes come from dominant communities in society, those who don’t risk being profiled and attacked simply for existing.