[Trigger Warning: history and images of restraint and restraint related abuse. If you would like to view this post with the images redacted, please see the image-less version.]
Wanderers- people with Mental Health or Developmental Disabilities who “wander” off. The most common image of a wanderer is an older adult with dementia. I know that- before her health failed- my great grandmother ended up in a locked ward at a nursing home- the “wanderer’s ward.”
A little more relevantly, a number of Autistics are or were wanderers, myself included.
One afternoon when I was in 1st grade, a teacher’s aide called my mother to let her know that she had some concerns. I wasn’t making it into the class room- I would get off the bus and wander around the school yard, looking at all the little things that exist in yards on a warm fall day. If I *did* make it into the class I would end up wandering the halls when the teacher would send me to the speech room. This was in addition to other in class things, too. At this point, my mother demanded that they have an aide escort me from the bus to the class, and my “services” began. This was a year before Asperger’s would be added to the DSM IV.
The reason I bring this up now is because the CDC put in their recommendations for the ICD-9-CM (International Classification of Diseases, Ninth Revision, Clinical Modification; the US government’s official system of assigning codes to medical diagnoses and procedures). In this, they included a recommendation for a diagnostic code for “wandering” behaviors. (Here is the Complete PDF of the CDC’s recommendations.)
Here’s the problem- having it listed as a diagnosis/diagnostic code doesn’t add anything to the situation to make the constructive steps they outline happen. What it does is create an excuse or justification for things like restraints. Wandering behavior sure has in the past.
The Utica Crib was developed at the New York State Lunatic Asylum in the 19th century. It was based on a French design, but the Utica Crib incorporated the slats. It was used to keep people who might get up and wander around at night in bed. This would allow a smaller staff, or even enable another problem- having other patients do a percentage of the care work. This issue was more prominent at Developmental Centers, where those deemed as “higher-functioning” were enlisted as unpaid care-laborers.
Bed Straps were Used in a similar fashion. The patient would be tied to the bed, to limit movement and prevent wandering. In some cases, the individual might be strapped down in the daytime hours as well as at night.
This is one of several images of individuals being tied to chairs or Benches from A Christmas In Purgatory, a famous Photo-essay/expose on the conditions of those with Developmental Disabilities in an institution from the early 70′s. (Here’s A child Bound to a bench with hands tied and a nude woman tied to a bench next to several other women.)
This was another method frequently used to restrict wandering behaviors. The patient was tied around the waist to a lead on a bench in a matter that would keep them from getting off the bench. in some cases, additional restraints were used. In the above photograph, the individual wears a restraining jacket, and propped up with a pillow- which would further restrict the amount of movement the lead would allow.
Restraints that further restrain movement can lead to a number of issues, including bed sores and staph (and in more recent times, MRSA) infections.
I researched the local Developmental center’s history when I was in high school, and it required firsthand sources. In interviewing several people who grew up in the surrounding community and spent time on the grounds (usually because a parent worked there), I heard a lot.
The more mild stories were of people with leads tied to outdoor benches, giving them a 5 foot range in which they could wander. Some of the more frightening ones involved peering in a door window as a small child, to see an individual tied to a chair, urine stains on their pants and pooling underneath. When my interviewee had asked what had happened, one of the staff members had replied that he kept “elopeing” and that he still had a couple of hours left in the chair. She remembered hearing him crying to be allowed to use the restroom. This would have been in the 1960s.
Reforms have happened in the recent past. But Abuses still happen, people are still restrained, and bed restraints of various sorts are still used on night time wanderers. Presenting a code for this behavior just adds one more thing to legitimize some very damaging approaches to people who have a long history of abuse.
It isn’t some distant fringe that advocates restraints. In researching this post, I cam across repeated examples of this. Modern versions of the Utica Bed, but now made with mesh and external zippers, marketed to parents of children who wander. In 2005, the FDA had to issue an alert on Vail Beds because of safety hazards.
Older Adults with dementia are put in “Gerichairs”- geriatric wheelchairs that bind the user to the chair, too often in a way that prevents the user from unbinding themselves. While they can be useful tools for those who need the physical support, when used as a restraint tool it can be dangerous. Bedsores and other infections are common remarks on the use of these chairs. (An FDA statement on improper use of geriatric equipment.)
These abuses are not only in our past. Pretending otherwise just endangers people. I strongly believe that the implementation of a wandering diagnostic code would only add a justification to a group of people who already invoke their own personal difficulties as reasons for abusive behavior.
(Please Sign ASAN’s petition against the Implementation of this abuse enabling code. You can read more about it at the above link.)
Trigger warning: discussion of trauma, both sudden and violent and prolonged and subtle. Also for Racism and Ableism.
This is what healing looks like. It doesn’t look like sitting under a tree on a clear day, or walking with your homogeneous looking family. It isn’t playing frisbee with grandkids and their dogs, and it isn’t lifting your hands in victory after climbing a mountain.
Healing isn’t pretty. It hurts sometimes. You have to dig around and realize exactly what has happened to you, what attitudes and perspectives you’ve been taught to frame your world in. It isn’t something that happens all at once, or in a short time.
I was sobbing because I was healing. I was realizing just how much my world and what I engage with was based on the abuse I faced and the things my abuser said. So I took a picture, a reminder that this feeling and this confrontation is a part of healing. Of undoing the damage that was done on me, that was continued through me.
I was watching the “Pretty Girl Rock” video. And it came to the part where the style of TLC was depicted. I remembered the day I heard Left Eye had died. I was sitting in a hotel room at a CASSP conference in PA. The world had gotten overwhelming, so I had retreated to the room to watch MTV. I cried as the alert scrolled across the bottom.
But when we got home, and I mentioned it to my abuser he scoffed. He said that she was crazy, that she was a druggy, that she was “bad” and that her death was due. He equated her race, too, to her inadequacies. I went to my room, and I played TLC’s Fanmail on repeat.
But from that time after, I didn’t listen to rap, hip hop, or R&B. There was something lost to me after that. A desperation to stop being “other” in order to avoid the abuse I faced, to stop being “crazy”, stop being a “Social Retard.” I told myself that it was because of the way that things have changed, because of misogyny, because of glorification of “Ghetto” culture in the main stream music.
But the reality is that I had turned those things that were said to me, that destroyed my faith in the world inwards. They were all connected, all tied to those things that were labeled undesirable to my abuser. That avoiding them somehow would make me safe.
Looking back, I can see how these things played into his racism, his ableism, his xenophobia. That they fit his words on people with mental health disabilities, how we aren’t fit or competent and how those of us with developmental issues would “never grow up.” How his deriding of non-white people, his saying that black people were sub species, interplayed with his ableism and his sexism.
“Lazy Nigger Bitch” he called me one day when I couldn’t get my brain to move fast enough, to disengage with what I was doing. This might have been the same day he threw my typewriter on the floor, shattering it, for the same reasons. In any case, he combined all the things he saw as “bad” into insults, into things that I would hope to avoid in order to make myself safe. That by avoiding association with certain “elements” I could somehow make myself safe.
That particular incident was 10+ years ago, but now I’m just starting to see how much it twisted me, and made me a victim of fear. How much it made me enable systems of power that would continue to oppress both my friends and myself. To realize how much these systems of oppression were twisted against me, and against those I love- and those I’ve never even met.
This, this disassembling of the systems he re-inforced in my brain? This, this determination to fight the injustices he made me think were universal and unchangeable?
This is healing.
(Post started in Dec 2010, finished march of 2011)