This blog is the third in a four-part series in which our contributors tell their stories of being people with disabilities who are also victims of sexual abuse. At the bottom of this and each part in the series, you will find resources for assault survivors. In the interest of protecting individuals’ privacy, if you would like to contact any of the contributors, please feel free to use my e-mail address (email@example.com), and I will relay questions and messages on to the writers.
Part 3: Chiari
When the “Me Too” movement began on social media, I could not share my story. I am not ashamed or misplaced with guilt. I am not responsible for what happened. Considering that I met my abuser through Facebook, I do not feel social media is a safe place for direct sharing. As for blame, I do not entirely blame him. I blame the system that allowed it to happen.
I was abused by my caretaker. I became physically disabled and lost my independence at age 20. I had to have many surgeries, each one with their own complications, until I was left unable to do tasks that I needed to do in order to work or live on my own. At this point I could walk with a cane, climbing steps very carefully. I could not bend down and get back up or lift more than 5 lbs. I would get dizzy and fall with vertigo spells. Chronic fatigue and illness limited my activity. At this level, the state did not agree that I needed attendant care services. It was agreed by doctors I was unable to work, so I was given SSI and Medicaid. The amount of income was so limited, it took away most of my housing options ($710 per month). I applied for subsidized housing, but the wait list was many years long.
I could not live with my parents. Their household was unstable, already dealing with three different physical and developmental disabilities (not including mine) under one roof. Instead, I had been living with a boyfriend. I was 22 years old. Taking care of me was destroying our relationship. He worked a full-time job, during which I would stay in the room all day. He had never wanted to live with me or help with personal care aspects required of being with someone with a disability. He fell in love with me for who I was outside of the disability, which was how I fell in love with him back, really. I could never love someone just because they took care of me and provided a place to live. He broke down to me about wanting a space of his own. To save our relationship, I posted in online groups looking for a housing option that also would be willing to help with the situation.
The offer came from a middle-aged man in a group for people with chronic illness. He was extremely friendly, loved art, and had many other common interests. He had a medical condition that he was on disability for. Spending most of his time in his apartment, he practiced self-care, and enjoyed cooking/cleaning/almost all of the tasks I really needed assistance with. He wanted a friend to spend time with, so we thought it would be the perfect symbiosis. He charged me $300 a month for a room in his apartment, including utilities.
It was perfect at first. It was the first time I didn’t feel like a burden to someone. I could finally spend time during the day doing fun things, learning new skills, and not feeling alone with my struggles. Since I needed minimal mobility assistance and transportation, he took me to all sorts of places I had wanted to go and showed me beautiful places I had never even known about. We became close friends, but the closer you become to someone, the more they reveal to you.
He had had a very hard life and had been abandoned by his family. This caused deep fears of rejection, self-hatred, and loathing. When we argued, he began to threaten self-harm. A knife to his arm in the kitchen, a shotgun in the living room for which he handed me the bullets and told me I needed to hide them. I didn’t tell anyone, I just tried to handle the situation and help him stay stable. I tried to rationalize: “He’s helping me with my physical disability, so I can help him with his mental one.”
My bedroom was the only door without a lock on it. It was supposed to be for “my safety”, in case I had a fall or other issue and needed help. That became my greatest issue. He never wanted to harm me, but alcohol changes people. Some nights he would drink. Not just drink, but drink to the point of almost blacking out. He would come in my room while I was in bed sleeping. I would wake up to him intoxicated, breathing heavily, kissing me, touching me all over to the point of full-on molestation. I don’t know if he realized that I was completely awake and aware. My eyes were open, but I was too afraid to make a noise. Maybe he thought he was asleep? But it didn’t happen just once, it was almost every time he drank like that. So, it’s hard for me to believe he really had no idea. Each morning the next day he would talk to me like nothing had happened. Like a Jekyll and Hyde story. He was my best friend who loved and took care of me. He stood up for me. He protected me, but could not from himself.
I couldn’t tell my boyfriend, friends, or family what was happening. None of them ever questioned it either. My boyfriend was happy we weren’t “living on top of each other” anymore, and everyone was just doing their own thing. I finally broke off the relationship with my boyfriend out of grief of not being able to tell him. I stopped hanging out with my friends because my caretaker would get upset and feel “ignored” and then wouldn’t help me with the things I needed. He had control of my life because he was the only one really helping me. He took me to my doctors’ appointments, took care of laundry, groceries, cooking, cleaning, and all of the things I could not be independent with.
That summer, an old friend had just graduated college and moved home, which was a ten-minute drive from where I was living. I needed to break out of the situation, so I went against my caretaker and hung out with him. I didn’t tell my friend what was happening, he knew though. When he came over he questioned things.
“Why can’t you use your laptop in your room?”
I told him because there’s only one Ethernet cable so my laptop stays in the living room and my roommate has to help me down on the couch to use it.
I was not a technologically knowledgeable person. I had no idea we had Wi-Fi the whole time. I had been lied to so that there was a reason to “help me down” on the couch, and I could not get up from the couch by myself while he was next to me. There were other red flags that my friend could tell something was going on. I never told him why I needed him to spend the night sometimes. It was just “It’s a bad night, can you come over?” He would spend the night in my bed, not doing anything intimate. It kept the monsters away.
I had to have another major spine surgery that summer. I was supposed to be in bed for the first few weeks healing. My caretaker was with me in the hospital, holding my hand while I cried and vomited from the pain. Holding his hand was the most difficult part. That week was my friend’s birthday. He came over to the apartment to spend it with me. My caretaker left to go to a bar down the street. After only about an hour, he was flooding my phone with texts: “Soo drunk,” and many things I just ignored until:
“Help I crashed the car, I’m stuck in a ditch.”
My friend and I didn’t know what to do. I texted him to get his location and said we would call the police if he needed help. No response. We waited about a half hour, then decided to look for him. The apartment was on the second floor; there was a flight of steps to get to the front door. I was not supposed to be walking on steps yet, so my friend carried me down and out to the parking lot. As we got out there, we immediately found my caretaker’s car parked in a spot. We approached the car. My friend asked him,
“Are you ok? Do you need help?”
He responded angrily, “No, GO AWAY!”
So, we turned around and started back toward the apartment. My caretaker became more angry, “YOU! YOU COME BACK HERE!”
He wanted to talk to me alone. I went up to the car. At this point I was really frustrated. The words he said to me just made that worse.
“I can’t believe it took you FORTY minutes to come looking for me!”
I gave up. I didn’t want to give in to his insanity anymore. I went back in with my friend and tried to make a plan. I still needed help, at that point even more so because I couldn’t even use the bathroom myself. But there was nowhere to go. I couldn’t go to a Women’s’ shelter—they aren’t prepared to handle disability or medical issues. Medical facilities aren’t prepared to handle broken life situations or abuse. In fact, if you tell medical personnel that you’re being abused, they automatically will invalidate your pain and invisible physical symptoms because psychological trauma can manifest as psychogenic/conversion disorders. No one acknowledges that it can be the other way around. Physical illness can ALLOW abuse to happen easily.
I figured I’d have a few days to think it out, come up with a solution. My friend had to go home, getting no sleep on his birthday and having to go into work at 6 am. He waited up with me until we heard my caretaker come inside and shut the door of his room. I wasn’t safe, but I wasn’t alone. We figure he’d at least do the right thing and help me with the essentials. We were wrong.
To “spite” me for ignoring him, my caretaker went on protest. He locked his door and shut off his phone. It was degrading. I needed help to use the bathroom; he didn’t care. I tried to be self-resourceful, use a cup. It was a mess. I called my mother in desperation. I couldn’t tell her what was happening, but she knew she needed to come get me and take me somewhere because I told her I wasn’t safe.
Unfortunately, she did not have a key. She waited for me outside the apartment. I had to try to get down the steps on my own. I got down a few when I felt my legs give out. I knew I was falling; I had to protect what I could. With my left arm, I shielded my head where I am missing the back of my skull from brain surgery. With my right, I tried to grab on the rail as hard as I could with weakness and catch the fall. My body went sideways; I mostly slid down on my knees. During this, the incision in my lower spine was torn open, and spinal fluid leaked out around six of my lumbar vertebrae. I felt my legs go paralyzed.
I spent the next few months in a rehab center. The fluid absorbed and I regained some mobility of my legs. I can walk on flat ground, but am unable to walk on inclines or lift them. I’ve had ignorant neurologists not understand this mobility issue. Many see me standing/walking in a rollator and assume I don’t need a wheelchair for independent mobility until they realize I have reduced reflexes in my legs, sometimes none at all. One asked me if I was sexually abused as I explained my leg issues. I told him,
“Yes, and that’s how this happened, but it’s not why it’s happening.”
That was degrading as well.
It’s been six years since that fall. Afterwards I was declared “disabled enough” to receive attendant care services from the state. I lost a part of myself, but I got my freedom. My name came up on a waiting list for an affordable public housing apartment. It was in a rough area: fires, gangs, shootings. This happened not only around the building, but inside it as well. I was happy to be there and have a place of my own. It was so much better than being trapped in someone else’s nightmare.
I have not spoken to my former caretaker. He sent me a text a few years back something like:
“I don’t remember this, but please forgive me if sometime when I came in to check on you at night I may have accidentally touched your boobs.”
It didn’t even begin to cover the scope of that situation. It would have done more damage for me to talk to him about it than to just ignore him completely. But here’s what I would have said otherwise:
“You touched more than that, and your actions, while not direct or intended, resulted in the permanent injury of my spine. I hope you get the help you need for your mental illness and substance abuse. I don’t hate you. I am grateful for the help you gave me. I forgive you for all of the bad. I have hope for you. The situation between us was abusive. You needed help too, so neither of us had the control to make it any better. I’m in a good place now, goodbye.”
Abuse comes in many forms. In my case, the abuse was from being controlled. Dependency relationships: friendships, families, and even intimate partners, are abusive.
The purpose of writing this is not to “come out” for confession or relief. It’s to raise awareness not that sexual abuse for people with disabilities happens, but HOW it happens. Lack of support, lack of shelters to go to, lack of housing options, lack of attendant care, that plus the physical inability to defend oneself. We must work towards a future where we have the options.
General info on abuse with resources
NPR Series on Disability and Abuse: Abused and Betrayed Podcasts
National Domestic Violence Hotline
Information and resources
The End Abuse of People with Disabilities Webinar Series
Webinars and resources