Woven Threads: Where Care Meets Control and Disabled Abuse

Woven Threads is a series of blog posts where I compile and expand on tweets and threads I’ve posted on Twitter. They may cover a number of topics that I often ruminate on. 

Growing up as a multiply marginalized disabled person steeped in internalized ableism has given me a unique perspective on “care.” Even though care is something I need a lot of, I also have become hyper-independent. While there’s typically general consensus that help and care are positive things, my experience, unfortunately, has proven otherwise more often than not. 

I’ve started to notice that some people offer help but only on their terms. You can tell, because they act offended and unbearably hurt if you say it's not the help you actually need. It’s because underneath the “act of service” is an underlying logic meant to gain control of you and it's such a mindfuck. 

I read someone share an explanation that love-bombing isn’t about how excessive the gestures are, it’s about targeting the specific needs or lacks that a person has in an attempt to control them. Practically all of my abusers used “helping” me as their main way of controlling me and my boundaries.

It's now why I struggle to accept help, even when I desperately need it. I'm not hyper-independent because I want to be. But accepting help from the wrong people has come at such a cost for me that I'd rather figure shit out myself than have to go through the effort of finding someone I can trust to do it.

When I first met one of my abusive exes, before we were in a relationship, he would insist on trying to find ways to help me but I'd brush it off a lot. It began with little things he’d notice were piling up around my apartment when he’d visit. He helped clear out the remnant piles of garbage that my previous abuser had obsessively collected that I still felt too anxious to throw out. He set up the PS3 I was left with when my abuser returned to bully me into giving him our PS4. 

He’d started to offer to help with dishes and the piles of laundry that continually piled up around me or to pick up food or snacks or groceries I needed on his way over to visit. But he was supposed to be a rebound hook-up and I eventually explained to him that an ex had withheld care from me as a punishment any time I displeased him, so to me, helping me do my laundry was an exceedingly intimate act—much more than fucking. 

But once we were officially in a relationship, refusing to accept his help started to feel like it was a hurtful thing because it meant I didn’t trust him and I was closing myself off to him. It became something that we’d fight over. I’d try to explain that it wasn’t because of him, that I wasn’t ready to add someone new into my routines when I needed stability and consistency and it just felt too fast for me.

But eventually he convinced me to come around to his side: I was the one that was wrong for not accepting help. I thought he was helping me heal my hyper-independence. I was learning to receive care. I was learning to trust. For a while, it felt like a dream—I felt free and stable and like my life could be manageable. 

Then everything I feared about accepting that help came true.

Once we started to live together, that help was, once again, felt like they were being held over my head. Any time I did something to displease him, it was sharply withdrawn. At first he’d “forget” about help he promised and now his plate was too full to follow through. I’d be disappointed, but I always tried my best to be understanding. 

Then he’d begin to snap at me when I’d ask for his help and he was too busy. I initially thought he was being preemptively defensive against whatever reaction I’d have to him saying no. I knew he struggled with people-pleasing and he was still new to setting boundaries. The resulting routine would end with my coos of reassurance that I knew I would be okay without his help and it was okay for him to have limits too. 

But when I’d still need to ask for help, I started to feel like a giant burden. I began trying to overcompensate by trying to prove that I could be useful to the point of burning myself out and deprioritizing myself, while still trying to be extra forgiving and understanding. He’d been so helpful once before and I didn’t want him to feel like I’d taken it for granted. I’ve learned that this is what disability scholar Ellen Samuels calls access hostility.

But when I got hit with a major financial blow that threatened my ability to find new housing and his level of COVID exposure became too dangerous for my (mostly disabled) friends to come over to help, all the doting affection disappeared. Now helping me was ruining his life and keeping him from happiness. It wasn’t his responsibility to help me so he’d changed his mind about all the agreements he’d made to convince me to move in and if I didn’t like how he lived, I could leave. 

And then he gave me COVID. Which he shrugged off and refused to isolate, turning angry and violent when I tried to explain how dangerous exposing others could be—eventually screaming in my face that he didn’t care as I began to cry that if people didn’t know he was potentially exposing them to COVID, one of those people might be going home to someone high-risk who might not survive the consequences.

After I told him I didn’t care if it meant our relationship was over, I still needed a place to live and one where I didn’t have to worry about COVID, things devolved into what felt like a fight for survival. It ended as he left but with the promise of returning straight after his gig and checking on me. 

As the hours slipped by while I waited for him, statistics about long COVID, poverty, mortality and MAiD whirled around my brain while my lungs burned with every inhale and I felt like I was going insane. When the early morning hours arrived, I checked his Instagram story and watched videos of him, unmasked, grinding against strangers at a crowded indoor rave.

It was one thing to see him doing it knowing that he could be putting my life at risk, it was another when he was doing it knowing that he could be putting every single person he came into contact with at risk. I told him not to come home—initially for the rest of the weekend, refusing to give in even as things escalated to terrifying heights. Feeling powerless, I posted about the ordeal online and a few hours later he announced he told our landlord he was moving out.

In those last two months before I finally got on the lease, I tried to stay angry and mean since any sign of kindness was taken as a signal that we were still in a relationship. But my recovery post-COVID was slow, I struggled more, and my uncooperative body forced me to rely on him for help, which was then exacerbated when a second COVID infection resulted in an ER visit to monitor if the heart inflammation I had was progressing. 

I ended up back in a cycle of needing his help and having it withdrawn if I tried to enforce any boundaries, it would’ve continued long after he moved out until I began to share about his other patterns of abusive behaviour online. I haven’t seen him again since his reputation took that hit. 

But the most painful part happened when I shared the experience with community spaces—explaining how he levied disability activism to gain my trust before using my care as leverage—several organizers just shrugged their shoulders like, okay but he left eventually so why care?

I felt like I was back in that first abusive relationship, when I'd try to tell people about the ways I was being neglected or emotionally abused. I often got replies that at least I had someone willing to help me. Now I was being told not to dwell on whether he or his friends or even the rest of my community considered partying more important than my safety. 

Disabled people are really told to just accept that people will leave us and that expecting anything more is being ungrateful for whatever little support we do get.

I’ve been living alone for a year as of this weekend, and while there are times I do wish I had some help picking up the slack, my life feels easier and more peaceful. I also sometimes wish I never accepted his help at all now. It mentally and physically hurt me. Some help can end up does more harm than good.

And no matter how much I heal old wounds, I still have care needs that can be held over my head. It feels like an eternal tightrope-walk between neglecting my care or being at constant risk of abuse.

What’s worse is that I also still have to be careful relying on friends. A lot of budding friendships offering promises of support ended up being really toxic. Some of those friends also tried to hold support they gave me over my head after I tried to set boundaries with them.

So yeah, I have my peace, but I also still have bills to pay and prescriptions to keep track of and doctors appointments to make and travel to and keep myself fed and do my own injections and shower and keep my home from becoming a biohazard while simultaneously dealing with pain and fatigue. 

I wish care was something that could be freely given and received, but power requires a delicate balance and as long as we live within hierarchies that define our quality of life and chances of survival.