My name is Ande, and I’m a survivor of seclusion and restraint. I am sharing my story in hopes of protecting others from the sorts of harm I have experienced. I also hope my story may help people who have had experiences like mine to feel less alone.

When my caregivers harmed me, I felt like parts of me were dying. At the same time, something was growing inside of me, preparing to break down walls. I’m glad I have survived my exposure to the system despite the permanent damage it did to me. I am one of the lucky ones. I want to help break down the walls of silence around the continuing maltreatment of Disabled people.

A person lying on the floor of a seclusion room with a tree growing from their head and through the wall. Digital drawing by Ande Quercus, Pterion Tree, 2024.

I grew up with undiagnosed autism and unacknowledged trauma. Like many autistic people, I experienced a lot of sensory trauma. I was also abused by a member of my community, but my family didn’t believe me.

I felt a lot of fear, anxiety, and hopelessness, but the adults in my life said there was no reason for it.

When I was 12 years old, I was hospitalized in a psych ward for the first time for suicidal ideation. During my stay, there was an incident where I was placed in seclusion. That was when I did my first self-injurious behavior, which quickly developed into a habit. This type of behavior became one of my main ways of coping with daily stressors.

Starting high school was extremely overwhelming for me, and my self-injury escalated accordingly. I was in a near-constant state of crisis, and I had a number of short stays in psych wards. At age 14, in 1997, I was put on a cocktail of several psychotropic drugs and sent to a long-term behavioral program in Lino Lakes, Minnesota.

My mom agreed to send me there for help after being told that it was a mental health treatment program. However, it was housed at a correctional facility, it was staffed by correctional staff, and kids there were occasionally sent next door to the maximum security juvenile center for breaking the rules. The program required us kids to keep each other’s behavior in line, and we weren’t supposed to do it kindly. When staff had to intervene, they often shouted at us, called us names, threw furniture, and did other things to frighten and intimidate us. I had almost no interaction with trained healthcare professionals.

I hated my medications. They had the effect of chemically restraining me, sedating me so heavily that I drooled on myself and moved like I was wading through oatmeal.

I could hardly stay awake; my eyes wouldn’t focus, and I couldn’t concentrate on anything. Everyone dismissed my complaints about my side effects, though. I don’t think the staff even knew what to watch for. I constantly got in trouble for “being unaware” and failing to make progress on my reading assignments.

I was only supposed to be there for 4-6 months, but they kept me for eight months. The level of sedation I experienced made it very difficult for me to convince people I was making a genuine effort to meet the expectations placed on me. I remember different parts of my spirit breaking over my time there. When I was released, I was in much worse shape than when I went in.

I was still on the medication cocktail, and my trauma had been massively compounded while remaining unacknowledged.

I was only back home for a few months before I was sent away again for self-injury. That time, I was sent to the state hospital in Brainerd, Minnesota. That was one of my favorite placements.

Before even meeting me, my doctor could tell from how I walked that I was suffering from drug-induced Parkinsonism and other terrible side effects. He immediately took me off almost all of my meds. It was an incredible, freeing feeling, but it was also overwhelming. I was suddenly bursting with energy. I barely slept for days, maybe even weeks. I regained the ability to feel the full depth of my emotions. I felt pure joy again, but I also felt intense anger about everything I’d experienced during the previous year.

Unfortunately, despite all I’d been through, I was expected to behave like a person who was not traumatized and who was not experiencing acute withdrawals from the abrupt discontinuation of a powerful sedative.

This brings me to the worst thing about the state hospital, which was their liberal use of prone restraint. Legally, they were only supposed to restrain us to prevent us from harming ourselves or someone else. In practice, it was often used as a punishment for general non-compliance.

My scariest restraint experience happened when I didn’t want to go to bed one night. The staff told me to go to my room, but I wouldn’t. They said, “If you don’t go to your room now, we’re going to count this as a suicide attempt.” This was a threat to restrain me. When I still refused to go, one staff member pushed the button on their emergency pager, initiating the restraint procedure. I hurried into my room and shut the door before the team arrived to tackle me, but we were already past the point of no return.

Four or five adults flung open my bedroom door, threw me to the floor, and pinned me there. I struggled, and one staff member responded by kneeling on my head. As his knee dug into my temple, the pressure building inside my skull made me feel like my eyes were going to burst out of my head. I heard my skull creak like a tree branch about to break under the weight of wet snow. Phosphenes bloomed across my field of vision. I held my body very still and pleaded for my life. It was scary to know that they could easily kill me, probably without anyone even suspecting foul play. I felt disposable.

Getting restrained made me become more of a danger to myself than I had been before.

It taught me that people were more interested in controlling me than keeping me safe. I started to see hurting myself as a way of reclaiming slivers of my autonomy. Also, the idea of attempting suicide came to feel less serious each time a staff member threatened to fabricate an instance of this. Plus, I had been told that I would never be able to live independently, and I didn’t want to grow old under the type of care I’d received up to that point.

I tried to tell my mom how I’d been treated, but she didn’t believe me. She ended up placing me in foster care until I aged out at 19 years old. I’m 41 years old now. Our relationship hasn’t recovered, but we’re working on it in therapy.

When I left foster care, I was fortunate to be able to move out on my own. However, I entered early adulthood with the belief that nothing counted as abuse if it was only happening to me. I was also confused about consent since I had been punished so many times for attempting to deny or withdraw consent. This made me an easy target and led to bad situations.

I’m doing much better now, but my PTSD is disabling.

I am unable to work, and I have a very hard time trusting anyone, especially medical professionals and other authority figures. I’m starting to have age-related health problems, and I feel ill-equipped to advocate for myself in medical settings.

I think it’s important for me to share my story because I know I am very lucky to be able to do so. Some people don’t survive getting treated the way I did. Some are denied the communication tools that are necessary to talk about it. Some never recover from the trauma enough to be able to open up about it. I was convinced for a long time that what happened to me wasn’t a big deal. Realizing that similar things are still happening to other people has made me see it differently.

Getting restrained and secluded damaged my relationships with my family and myself. It played a huge role in the development of my habit of self-injury. For a long time, it drastically reduced my interest in staying alive. It led me to tolerate abuse during my early adulthood. It continues to make it hard for me to seek out medical care when I need it. I sometimes wonder what I might be doing with my life right now if my caregivers had supported me in recovering from my trauma instead of trying to force me to behave differently. Still, I have hope for the future.