This is the old “About” page for this blog. It’s being renamed in anticipation for the new About page that I am (as I write this) in the process of writing. When that page is finished it will be called simply About again.
The logo at the top of this page (used to be at the top of all pages on this website) shows black-and-white images from eugenics propaganda on each side. One on the left shows a man bearing the “burden” of disabled people on his back, and the one on the right shows assorted disabled people. The word “BALLASTEXISTENZ” is written across the middle in letters from a communication board overlay, with pictures on each key. A finger is pressing on the B. To one side, in color, is the face of the blogger. There is a tree in the background.
The eugenics image on the left, I had seen in several places a long time ago, while the images on the right I found this month. The photograph of myself was taken a few months ago, and the photograph of the tree in the background was taken a few years ago. I took and edited the photograph of the keyboard as I made the image.
The reason that I have chosen one of the offensive terms used in the German eugenics movement against disabled people — which, for reference, predated Nazism, was heavily influenced by American ideas, and survived after World War II — is to force people to look at the sentiments that drove that movement, that came before it, and that are still prevalent worldwide today.
Ballastexistenz means about what it looks like: Ballast-existence, ballast-life. Some of the other terms that were applied to disabled people at the same time included leeren Menschenhülsen (empty human-shaped shells/husks), and lebensunwertes Leben (lives unworthy of life).
In using these terms, I do not for one moment forget the gravity of them. The ideas that gave rise to that terms have existed a long time and continue to exist. These ideas threaten the lives and well-being of disabled people everywhere. Autistic people are frequently described in these hateful ways, as empty shells without souls, burdens on our families and society, contributing nothing, ballast that merely weighs everyone else down.
I put this name on my blog in witness to what can happen, has happened, and is happening when real human beings are thought of this way. I am a non-speaking physically disabled and autistic woman who’s lived in institutions, whose income comes from a disability check, and whose services are funded by the state. I am and have been exactly the sort of person who is meant when these awful concepts are used. I and the people I know and love are people, not burdens and ballast and wastes of space and money. All these ideas do is dehumanize us, and in contrasting these words with my real life I hope to show how wrong they are when applied to anyone.
This blog is about assorted ideas, but most will have something to do with human rights, autistic liberation, disability rights, and so forth.
If you want to see my official papers and such, they are there. If you even want to meet me and my case manager and/or staff at the place I receive services to verify I exist, I’d be happy to arrange it, provided you are not someone I’ve made explicit my total lack of desire for contact with. (Due to stalkers and death threats, that offer no longer stands, and nobody ever took me up on it anyway.) My Disclaimer on Assumptions should probably be required reading in addition to this page, as well.
I will no longer be accepting comments that attempt to divert discussion of the issues raised within this blog into an endless discussion of whether I exist or not, or whether I am autistic or not. I have proven myself on multiple occasions to the state of California, to the federal government of the USA, to the state of Vermont, to CNN, and to MIT, with the help of doctors who have known me since I was 13 and relatives who have known me since birth. I have better things to do than prove myself to strangers on the Internet, and such discussions only serve to divert energy from the real issues. I will also not be allowing debate over other autistic people’s existence or authenticity. This kind of gossip is a favorite pastime in the autism community, including among some autistic people, but it is a destructive one.
Additionally, regular readers of and commenters to this blog include, at the very least:
- Four people who have known me continuously since birth.
- One person who knew me starting around the age of six or seven.
- One person who has known me continuously since the age of twelve.
- Many people who have known me many years in adulthood, including in person and in a fair bit of depth.
- Many people who know people who have known me continuously since birth.
I am well aware there are people who have known me much less well and for much shorter periods of time, who appear to thrive on gossip. All I have to say on that is, consider that the people who have known me the best and the longest do not engage in or hold with such gossip. And then consider the source.
I will quote from Jim Sinclair’s article Autism Network International: The Development of a Community and Its Culture:
Only several years later, while researching the history of self-advocacy by disabled people (Sinclair, 1996), did I learn of the long history of similar opposition to attempts at self-advocacy and self-determination by people with a variety of disabilities (Kugelmass, 1951; Putnam, 1979; Williams & Shoultz, 1982; Van Cleve & Crouch, 1989; Lane, 1992; Shapiro, 1993; Christiansen & Barnartt, 1995; Dybwad & Bersani, 1996; Kennedy, 1996). Any attempt by a group of disempowered people to challenge the status quo–to dispute the presumption of their incompetence, to redefine themselves as equals of the empowered class, to assert independence and self-determination–has been met by remarkably similar efforts to discredit them. The discrediting tactics used most frequently are:
1) If at all possible, to deny that the persons mounting the challenge are really members of the group to which they claim membership. This tactic has been used against disability activists with learning disabilities and psychiatric disabilities as well as against autistic people. As people with these disabilities often look “normal” and the disabilities are all defined in terms of behavior rather than empirically measurable physical differences, many of us have been told that the very fact that we are able to express ourselves, object to the ways our freedom has been restricted or our rights violated, and demand change proves that we cannot truly be autistic, or learning disabled, or psychiatrically impaired.
2) If there is incontrovertible evidence that the activists are members of the affected group, to aver that they are rare exceptions who are so unlike typical members of the affected group that what they have to say is irrelevant to the group as a whole. […]
3) If it is not possible to deny that the activists are authentic representatives of the affected group, to appeal to the very prejudices and stereotypes the activists are seeking to overturn, and use those prejudices and stereotypes to claim that the activists are incapable of fully understanding their situations and knowing what is best for them. Often this approach incorporates the belief that disabled people need to have their freedom restricted for their own good, to protect them from coming to harm through their inability to act in their own best interests.
This is a blog by a self-advocate who has participated in several aspects of the disability rights movement including autistic liberation, psychiatric survivor, mainstream disability rights, and developmental disability self-advocacy. It is meant largely for discussion of these issues. As such, when I detect any of the above tactics, they will not be allowed, as all they do is hinder the purpose of discussion here, and they add nothing of value or substance. And if it’s not clear, I will not tolerate these or any tactics with similar ends in mind towards any group of people.
Comments from when this was a page not a post:
Note: There were too many comments here for me to edit out all the links to no-longer-existing pages. Please don’t click “reply” on any of these, it won’t get you what you’re looking for.