“When will your novel be ready to send to agents?”
Maddy asked this question as we lay on the beach. It was a hot August day and we were looking out at the water and eating cherries. I smiled and put a cherry in my mouth. After working on my book for six years, I was finally happy with a draft I’d finished. The plan was to send it to an editor for a readers’ report then do another round of edits before I sent it out.
“This fall,” I told her. “I can’t believe I’m so close.”
Maddy clutched my hand and smiled. “I know how hard you’ve worked for this,” she said.
And Maddy did know.
Over the last 6 months, she’d had helped me get my manuscript this far. Because of a head injury that has left me with a number of persistent symptoms, I struggled to edit my own work on a screen. I had to print out sections of the manuscript, make the edits in pen and have Maddy make the changes in the document later. We went through five rounds of edits – with Maddy sitting next to me drinking tea on my couch, asking me at various intervals to make sense of my terrible handwriting.
When I finished the most recent draft, I’d taken her out for a fancy dinner to thank her. We make it a habit to celebrate everything – because Maddy is also recovering from a brain injury and we both know how hard it is sometimes to just get through the day.
I remember dropping Maddy off at her house after a long day at the beach and going home and imagining what it would feel like to get back comments about my novel. I remember thinking about how excited I would be to do that final edit and finally send it out to agents.
I remember this feeling distinctly. Nothing compares with the lightness I felt believing that I was about to complete that stage of the writing process. But now it’s five months later and I’m no closer to that goal.
The trouble started a week after Maddy and I lay on the beach -- when I tried to change plans with a friend.
“I’m so sorry,” I said over the phone. “I’m too fatigued to go out tonight and I don’t feel safe to drive to your house. Want to come over?”
One of the things I’ve struggled with since my brain injury is intense fatigue. It’s not just that I get tired. It’s a feeling that can keep me from getting up from my sofa for hours – even if I’m hungry and desperately need something to eat. My body suddenly becomes too weak to move.
My friend sighed. “I really need to get out and do something exciting,” she said. “I work from home all day.”
“Like I said, you are absolutely welcome to come over,” I tell her quickly. “I’ll order in dinner. My treat. Whatever you want. I might be a little slow today, but I’m here for you.”
My friend sighed again and was quiet. I sat on the phone knowing what would come next. This wasn’t the first time she’d done this to me.
“I really need to get out of the house,” she said. “And that sounds boring. I don’t know why you can’t go out for dinner with me. I saw on Instagram that you were out last night with other friends.”
“I was,” I told her, “and I went home early because I felt terrible.”
“I don’t believe you,” she retorted. “I just feel like whenever I need you you’re unavailable. You don’t cancel or change plans with other friends.”
“We’ve had this argument before,” I tell her, trying to stay calm. “I’ve even sent you screenshots of me cancelling and changing plans with other friends. It’s really ableist of you to say these things. And I’ve told you that I won’t allow ableism in my life. That I can’t. That it’s too painful.”
Since my brain injury, I’ve had to cut out a number of close friends or family members who told me I was faking the symptoms of my injury when it was convenient. Who would yell at me that I was an inconsiderate or uncaring person when I told them I couldn’t talk on the phone because I was unable to process language or speak because my brain fog was severe and doing so was intensely painful or physically impossible.
In fact, over the last two and a half years, I have painfully cut out every single person I’d been close to before my injury because they’ve been routinely abusive in this way – except this friend. She had initially been very supportive but two years after my injury, her understanding was wearing thin – partly because I wasn’t able to be there to provide her emotional support on occasions when I wasn’t feeling well. She took it personally, thinking that I didn’t care enough about her. That if I truly cared for her I could push myself to do it. I’d tried many times to explain to her that my disability has meant my body has hard stops now. Sometimes there is no way I can push myself past my capacity even though I desperately want to. Meanwhile, the pressure to always show up for her even when I wasn’t feeling well meant that I did often push myself past my capacity when I could do so – and paid for it later. It often still wasn’t enough. There is nothing more painful than knowing someone is annoyed with you when you’re physically unwell and you’ve done everything you could to be there for them.
That day, when she angrily cancelled plans with me yet again, I realized that our long friendship was likely over. I couldn’t see a way around the impasse between us. She wanted our friendship to be like it was before I was injured. But I was physically unable to be that friend sometimes. Rather than understand that my body and capacities had changed, she made it clear that she didn’t like the person that I now was.
After we got off the phone, I called my friend Jacob, who also has a disability.
“It’s so painful,” I told him through tears. “Since my injury so many people have made it clear that the person I am now is not enough. My friendship is not enough. My love is not enough. What’s the point of even trying to build relationships when people just get frustrated with the ways in which my body isn’t like theirs?”
Jacob listened and reassured me. “I’m so sorry you’re dealing with this,” he said. “It happened to me too after becoming disabled. But we’re both fucking amazing friends and frankly the people who treat us like shit for things we can’t control can go to hell.”
I laughed at Jacob’s comments, but the rejection still stung. It followed me around for weeks. I would start crying suddenly in grief over the loss of my friendship -- which had deeply nourished me in the past.
And that was only the beginning of the ableism I experienced this past fall. In another version of this essay, I wrote in detail about two other experiences that affected me even more deeply than the one described above. Two other experiences that were horrifying and dehumanizing. Two experiences that left me in tears and wondering why I keep trying when the world makes having an invisible disabled so difficult and dispiriting. I decided to remove these two explanations to protect myself. Because it’s terrifying being the focus of that type of ableism and explicitly talking about it could make me the target of more ableist abuse.
“It’s just a lot of stress to be dealing with at the same time,” I told my friend Jacob on the phone after it all came out. “If it were just one thing I think I’d struggle but be fine. But these three things coming at once – it’s just reinforcing how precarious it feels to be disabled. How you can’t count on anything. How people always say the worst things when you’re struggling with your health the most and can’t emotionally handle it.”
Jacob agreed. “It’s so hard when it all hits at the same time,” he said and shared experiences when that happened to him too. “It makes life feel so impossible sometimes.”
I cried again talking to Jacob that night. I cried because of the three things that had recently happened – but also because of everything similar that had happened to me in the last two years. I cried remembering the people who responded with anger, spite, or disbelief when I told them I was in pain. I cried because of all the times I was made me feel like my disability was a personality flaw when it was beyond my control. Because of all the relationships that I lost. Because of how lonely I felt because of that. I cried too at my slow attempts to rebuild my community by making new friends. At how sometimes my attempts to speak about my disability – to try to get back a sense of dignity and community by posting about it and writing about it publicly – were being met with ableism.
What if no one ever believed me? What if all the people I met for the rest of my life really thought that I was lying and making it up? What if whenever I got close to anyone they would always treat me in this way – as inconvenient, unloving, or wrong -- for things I could not control? What if all the energy I put into trying to be a good friend or a good partner would never make up for my disability?
“I’m so sorry,” Jacob told me again and again as I tried to make peace with this over a number of late-night conversations. “You don’t deserve any of this. It makes me so angry that we get treated this way.” His comments helped, but they didn’t take away my pain.
And so, when I got the reader’s report from the editor I paid to read my manuscript, my cursor hovered over the message but I couldn’t click on it.
The peace I had felt around my novel draft in the summer had disappeared. So many people questioning me about one part of my life undermined my confidence in all areas of my life. What if my novel wasn’t good? What if the comments said I needed to rewrite the entire thing? What if on top of everyone thinking that I was a terrible person, the editor was about to tell me that I was also a terrible writer?
I knew that I couldn’t take another person saying something that would devastate my sense of self. So, I treated that e-mail like a weapon. It potentially held things that could undo me further. And I didn’t know how I would cope with more negative feedback. It was safer to put it aside and not read it.
I’ll read it next week, I told myself. After I’ve figured out how to deal with all of this.
Only I didn’t open it the following week. Or the week after. Instead, it sat in my inbox as the weeks went by.
The leaves turned colour. They fell off the trees.
I didn’t go out much all fall. I started to assume all my able-bodied friends felt like I was a burden or a liar and just didn’t say as much to my face. I also didn’t want to run into people who thought I was a terrible person because of my disability. The stress caused my health to suffer. I didn’t talk to the friend who had treated me badly but I missed her deeply. I spent a lot of time trying to figure out how to make her understand how I needed her to treat me. I barely slept. My mood suffered. I didn’t write. I didn’t edit.
“How are you?” friends asked when they hadn’t heard from me for a while.
“How is your novel going?”
“Are you still on schedule to send it out this fall?”
I avoided talking to anyone about my book.
“I’m working on it,” I sometimes lied if someone pushed. Or I would be honest. “I just can’t get to it,” I would tell them, tears filling my eyes. “I have so much on my plate. I’m trying to figure out how to live in a world that continues to treat me with contempt and ask me to do so much extra labour just because I’m not well.”
I still haven’t figured that out. I still don’t know how to bounce back from ableism. I wish I could just ignore it – but it often threatens me with real and material impacts on my life. It’s something I need to take seriously even if it’s something I can’t control or stop.
But I finally did open the reader’s report from my editor – months after it was sent. How did I manage to do that? I made a new friend. I found someone who knew I was disabled and chose to be friends with me anyways. Who was careful about how he talked about my disability. Who worked hard to let me know that it was okay to be disabled and made an effort to accommodate me. Who was excited about my writing and novel when I shared my ideas with him. Who helped me see a future where my friendship was wanted and I was enough.
“It’s hard for me to trust people,” I told my new friend. And he listened. And he earned my trust. And he encouraged me. And I began to realize that though it still mattered that I was experiencing ableism – experiencing the kind of radical acceptance that this friend gave me also had real and material effects on me that helped me combat some of that ableism. It made me stronger. It made it easier to withstand it.
And when I finally opened that report, I was shocked to realize that most of the comments were really positive. Yes, there were things I had to fix about the flow and structure of the novel – but the editor also said that it was “devilishly ambitious,” “a marvel,” and that it reached, “a transcendent place,” at the end.
“I can’t believe I waited so long to read it,” I told my new friend. “I wish all this ableist BS hadn’t arrested my progress so much.”
Ableism took away my voice for many months, but it’s coming back. Slowly. With difficulty. While I continue to experience various kinds of ableism that threaten to take it away again. There are physical challenges to writing for me, but more impactful than those are the challenges I’ve face because of how hopeless and powerless ableism makes me feel.
Ableism doesn’t just take away my drive to write, but the stress of it also affects my health and sometimes makes it impossible to write. People have told me to just ignore it and not let it affect me. I wish it were easy to ignore. Ableism doesn’t take away my voice because I’m not strong enough or because I don’t inherently know that I’m valuable. Ableism takes away my voice because it’s vicious and terrifying and continually threatens to have very real and very negative consequences on my life. Because it shows up from those who I barely know who make unfair and very damaging assumptions about me and because it shows up from those who are closest to me and who have the most power to wound.
When person after person says ableist things to you, you start believing everyone is thinking ableist things. No one, no matter how strong they are can ignore that. No one can be unaffected by it. It is deeply traumatic. It affects your ability to love and trust and build relationships. It affects your ability to feel safe.
I often say that when I was injured it felt like suddenly getting into multiple abusive relationships all at the same time. Relationships that used to nourish me suddenly became harmful to me. And I had to use my energy to advocate for myself and try to heal – not just from the physical issues I was experiencing – but also from the emotional harm. I’m still healing from that original harm – even as new forms of harm pile up every day.
I am writing and editing again now but I don’t know for how long. I don’t know the next time that ableism will take away my voice. And I don’t know how long I’ll go without writing then. I don’t know how I’ll get back to writing when that happens. I hope it gets easier to fight but I don’t know if it will. The more the world rejects you – the more you often feel like trying to connect is hopeless. Ableism is cumulative – just like other forms of trauma. You don’t learn how to deal with it better – it triggers past experiences of it instead.
It’s important that non-disabled people understand the extra work that disabled writers have to go through just to write. If you are a writer experiencing intersecting oppressions, you experience even more trauma that you might have to process before you can write or edit or get things done.
These experiences silence so many.
But what helps is people who do the work to accept and support and understand you. Who tell ableism and ableist people to fuck off for you. Who encourage your writing and voice. Who want to see your work finished and out in the world and do what they can to help you get it there.
Disabled people need these kind of cheerleaders. We need them to help counteract all the people who tell us we don’t matter. Please support disabled writers however you can – especially if they are experiencing intersecting oppressions.
The views expressed by Open Book columnists are those held by the authors and do not necessarily reflect the views of Open Book.
A.H. Reaume is a Vancouver-based fiction writer who reads too much and is currently in too many book clubs (four in total). Reaume has a background in feminist activism and an M.A. in Canadian Literature from UBC. She's been published in the Vancouver Sun, The Globe and Mail, USAToday.com, and Time.com and is currently trying to finish her first novel.