What Do You Do When Your Disability Keeps You from Writing? What I Learned When I Launched a Brute Force Hack on my Brain

What Do You Do When Your Disability Keeps You from Writing? What I Learned When I Launched a Brute Force Hack on my Brain [1]

A few years ago, I started hiking alone. I enjoyed escaping the city to one of its peaks every weekend and none of my friends wanted to hike that often.

The first time I went, I was afraid I would get bored from all that time alone moving through forests empty except for the occasional other hikers, so I loaded an audiobook on my phone.

I remember looking at the trailhead with a mix of excitement and dread. The hike would take 5 hours -- a long time to spend by myself. I switched on War and Peace and took the first step.[2]

One.

When I reached the peak two and a half hours later, I felt lighter. Hiking alone, I realized, helped me find a calm place inside myself. I started hiking alone every weekend. When I finished War and Peace, I turned to Anna Karenina and then to Moby Dick.  

"What I love about hiking," I told a friend, "is that it’s a metaphor in movement. It reminds me that while the peak is beautiful the bulk of life is the complicated and hard journey. The lesson, for me, is to stick to the trail and keep moving trusting that I will get where I need to go.” [3]

Two.

But that's a bad metaphor, isn’t it? The thing about hiking that’s different from life is that you usually know how long a hike will take. You can easily find out things like distance, estimated time and the elevation gain online. You can look at the weather and choose how much water and food you need to bring. You can pack things like rain gear or a first aid kit, just in case.

More importantly, there is usually a trail to follow with markers like breadcrumbs that lead you into the forest and back out again.

Three.

I couldn't hike for months after my injury.

For the first three weeks after I dropped a weight on my head, I couldn't even leave my bed. When I did, I had to hold onto the walls and furniture to not fall down. My vision swam. I wore sunglasses indoors even though the blinds in my apartment were all drawn.

I lay in bed listening to audiobook after audiobook until I got bored and antsy and sick of reading.[4]

At least I was getting research done for the novel I had started plotting out, I told myself.[5]

I decided to make a list of the books I needed to read and hikes I wanted to go on that summer. But I could only add one book or hike to the list at a time. I couldn't keep the page in focus. I forgot how to spell words. I forgot certain words entirely.

Everything that I wrote in the first few months after my injury confused ‘b’s and ‘d’s.[6]

Four.

"When do you think I'll be able to leave my bed," I asked my doctor, after two weeks with little improvement. "As soon as your symptoms decrease," he told me.[7]

Five.

My symptoms didn't decrease but when I got into a neuro-vestibular physiotherapist after three weeks[8] she told me that the recommended treatment protocol had changed and I needed to go on one 10 minute walk a day even if my symptoms stayed the same.[9]

I tried listening to an audiobook the first time I went for a walk and almost collapsed in exhaustion half-way through.

"You can't do two things at the same time yet," my physiotherapist told me gently the next time I saw her.[10]

I spent the next two weeks walking in silence.

Six.

A friend who was concerned about me walking by myself after I fell one day, came for a while to walk with me -- allowing me to hold onto his arm when I needed to.

At first, he talked and asked me questions like normal. Only I found I couldn't respond. My words were heavy and slurred. They came out slowly.

"One day, you will be a walkie talkie," he joked.

"You... can ... tell… I'm... b… brain... damaged... because... I'm... finally... laughing... at.... y... y... your... b... b... bad... p... p... puns," I very slowly quipped before stuttering out that we needed to be quiet the rest of the walk.

Seven.

In my bio now, I say that I am a ‘disabled writer.’

This is true in one way in that I’m a disabled person who happens to be a writer. But it is also true that my disability particularly affects my ability to write.

Eight.

"You just need to keep using your computer for as long as you can without symptoms and then take a break," my doctors repeatedly told me. And I listened to them.[11]

I would write and then shut my laptop down and rest my eyes. Right after my injury, I could do about five minutes at a time without symptoms.[12]

It took another month to get up to 20 minutes. I’d have to lie with my eyes closed for an hour afterwards. I still significantly struggled to read print books. After a page or two, the words would start moving and I’d close the book frustrated and turn on an audiobook.

I longed to zone out by watching a TV show or a movie but couldn’t process video.[13]  

Nine.

In the beginning, my eyes hated scrolling. When I told my neuro-vestibular physiotherapist this, she gave me an exercise to build up my eye’s capacity to track upward and downward movement better. It took two months before scrolling didn’t give me a headache.

Improvement would be slow, I thought, but it would come.

(As I waited for it though, I’d thought repeatedly, why isn’t there an option for your phone that allows you to read without having to scroll? Surely, there were other people who struggled with this? Why was there only one option for how to interact with such a critical device? Who designed this? And for whom did they design it?).[14] 

Ten.  

It took a while for my neuro vestibular therapist to start suggesting ways to make tech more accessible to me. Her focus had been primarily to heal me so that I could interact with the world like I had before. When that clearly wasn’t happening, she pivoted her approach.[15]

“Install the F.lux App,” she said, “and just leave it on all the time. It takes the blue light out of your screen and makes it easier on your eyes. Oh, and you should get an anti-glare screen protector!”[16]

She scribbled these things down on a piece of paper, knowing that I wouldn’t remember them when I left her office. She told me I should also go see a vision therapist.

Eleven.

It begins with me booting up my computer. I squint at the screen. Sometimes there is immediate discomfort. Sometimes there isn’t. Minutes pass. Sometimes just a few. Sometimes a whole hour. A pain slowly develops behind my eyes. My capacity to think decreases. Sometimes quickly. Sometimes slowly. The pain increases. Always. Then the words lose focus.

I slowly feel more and more tired.

(If I work for too long, I will struggle to move later because of fatigue).

And what was it I trying to write? Oh, yes, I remember. Or I don’t -- and realize I have to stop.[17] 

Twelve.

My vision therapist[18] once explained that the reason my brain struggles with screens is because when my brain was hit the connections it used to process visual stimuli were disrupted. As if healed, my brain rerouted the connections but it did this inefficiently. Which means that my brain is using all its resources just to see.

Looking at a screen is hard because of the light and glare and movement. It causes my brain’s resources to be used too quickly, causing me pain, cognitive issues and severe fatigue.

My brain is essentially a 1970s sedan guzzling gas. My body at the end of the day working on a screen is a stilled car on the side of the road – fuel indicator on empty.  

Thirteen.

As I was recovering, I kept researching the novel that I wanted to write. I’d read five pages before my eyesight gave out and then I would listen all day to an audiobook that was on my research list while lying incapacitated from fatigue for hours. I couldn’t take notes from the audiobook, but I bookmarked the sections I thought would be useful to return to.

One day, I will type them up, I told myself. When I am better.

Fourteen.

When I finally returned to hiking, four months had passed. I could only go on very short hikes and only if a friend drove because I still wasn’t allowed to drive that far. I still couldn't hike and talk at the same time. After tripping a number of times on my first hike because my balance was so off, I bought hiking poles – my first assistive device. [19]

Fifteen.

The next summer, I was able to start hiking on my own again. In fact, I now could only hike on my own. Hiking with someone else would cause my brain to meltdown halfway through the hike. I couldn’t process language and handle a strenuous hike at the same time. Even when I tried not to talk, trying to orient someone in space walking beside me was too much work for my brain and it quickly burned out.

Sixteen.

That summer, I was out of shape and kept needing to take breaks during my hikes. One of my favourite hikes has a big uphill stretch and the first time I did it that year I felt like I would never make it.

That was when I started counting. Just one more step, I told myself. Then ten more. Eventually, I broke it down to 50 step stretches. I could do 50 steps. And when I finished those 50 steps, I usually felt like I could do another 50 steps.

Breaking it down like that helped me focus on each individual step rather than the whole long hill.

Seventeen.

One day, I surprised myself by doing that whole hill without a break by counting. I moved slower than a lot of the other hikers but eventually I passed them. I thought this was a triumph.

But then I couldn't get out of bed for two days because I had pushed my brain too far.

Eighteen.

I realized that just because I could push my body to do things -- that didn't mean that was good for me. There was no escaping my body’s new terms. There was only finding ways to work with them.

I needed to accommodate the limits of my body.

Nineteen.

So, I would set myself a certain number of steps in the steep sections before I let myself take a break. First two hundred and fifty steps. Then five hundred. Even if I felt okay, I would rest. Check to see how I felt the next day.

Twenty.

I went into the mountains then mostly to escape the ableism I experienced during the week. I climbed the trails alone, loving the sound of my hiking poles clicking in the quiet forest. I listened to audiobooks. I threw my body into the movement – into a thing I could do.

I gave myself the gift of trees and rocks and sweat and exertion. I delighted in my Crip body. I celebrated it. And those quiet moments in the forest where I could move at my own pace and accommodate my body’s needs gave me the strength to face the ableism I experienced in my daily life -- to fight it, to not let it flatten me.

Twenty-one.

The vision therapist I saw recommended I get colour tinted glasses that would help me use screens for longer. I spent hundreds of dollars getting tested to be fitted for the right glasses then ordered them online.[20]

Because one of my issues is with my eyes overly fusing – I was told to put tape on the insides of lens near my nose.[21] Those rose coloured glasses were able to steal a few more minutes to a few more hours of relatively painless computer time for me each day.

Twenty-two.

But I still struggled to increase my cognitive capacity when using computers. The longer I spend on a screen, the less clearly I can usually think. But even when I first start using a screen, I can very rarely achieve the level of deep thought I can when not using a screen. The immediate cognitive effect is not significant enough to cause me to struggle when writing something simple, but enough to keep me from doing the type of complex edits I needed to do on my manuscript.  

Four months after my injury when I was finally able to read print for longer periods of time, I printed out my 125,000 word novel to edit thinking that would make it easier.[22] And it did. I was able to manage the complex work of synthesizing ideas and making important changes on the printed pages.

Twenty-three.

The process was slow since I could only edit it a bit at a time. The bigger problem was getting those changes back into my Word document. Another visual issue I have is switching my vision from looking at one area (like a piece of paper) to another (like a computer screen). That process of looking from an edited page to the screen in order to make an edit would quickly make me severely fatigued.

Twenty-four.

My manuscript sat for a year. Printed out. Edited. I was unable to get the changes back into the document so that I could print it out again and start another round of edits. I would look at it mournfully on the floor of my office.

Would I ever get to a place where I would be able to make the changes? Was I still a writer? Would I ever be again?

I couldn’t think too long about that before the grief set in. Writing was the purpose of my life. What would it mean if I couldn’t do it anymore? How could I continue to exist in a world in which I no longer had that purpose?  

Twenty-five.

I finally realized that I needed to think about how I could accommodate my writing like my employer had accommodated other computer tasks I needed to do – by hiring someone to help me.

So, I hired a friend to do it.[23] And it worked -- but it wasn’t perfect. It cost money, which meant I had to take on freelance work to afford it. Relying on someone else also meant I had to double check the work and that timelines weren’t in my control.

But it was just a temporary solution, I told myself.

Twenty-six.

Every morning I engage in a painful act of hope. I wake up. After getting out of bed, I do the vision exercises that are supposed to heal my brain and create the connections that will make me able to use computers normally again. That will mean I experience less fatigue in my life generally.

The exercises themselves also exhaust me. But I do them. Every day. For the last three years. As I do, I imagine my brain working again. I imagine my recovery.

I slowly improve. I slowly lose faith that I will ever fully ‘recover’ the capacities I had before.  

Twenty-seven.

Despite being presented as the solution by my doctors, the biggest improvement in my capacity to use computers didn’t come from visual exercises. It came from a technological design change. In September 2019, over two years after my injury, Apple implemented dark mode on their iPhone and suddenly, I was able to use my phone for longer periods of time. E-mailing physically hurt less.

It changed my life.[24]

Twenty-eight.

Seeing the impact this had on my phone use, during the next month, I researched and tested dark modes on browsers and word processors.

I realized that I liked using high contrast mode best on my computer. This completely changed how I used technology. It allowed me to work with few breaks during my day job with significantly less pain.[25]

Twenty-nine.

I realized then that one of the problems was that those in charge of rehabilitating me were directing me to ways to more effectively use technology as an able-bodied person would. Their clinical end goal was that I would someday be able to use tech like a non-disabled person again.

But what I needed from them was tech solutions to use as I recovered. And that I could use if I did not fully recover.

I needed tech that worked to accommodate my needs rather than just being told to work to accommodate my body to tech.

Thirty.

As soon as I realized that, I saw that I was looking at the problem of writing the wrong way. My problem wasn't necessarily how I could learn to use a word processor like I used to. My problem was how to write, get that writing into a word document, and then edit that document.

Framing it that way allowed me to see how it was tech that was disabling me.

Thirty-one.

Many people understand disability through the medical model that says that disability is a physical problem and medicine is the means to potentially fix and heal it. In this theory, the problem is in the body. However, there is also the social model of disability which says that bodies have impairments and what disables people is that society doesn’t design for a variety of bodies and so excludes people by denying them access.

I spent the first two years of my life after my injury in extreme pain and deep brain fog because no one thought to provide me with the appropriate assistive technology and because some of the appropriate assistive technology didn’t even exist yet. Technology was designed, and still is often designed, in ways that disable my body and cause it pain.[26] In ways that have had and continue to have tangible and deep impacts in my capacity to live a full, fulfilling, and active life.   

Once I realized this, I decided to launch an all out campaign to seek out any and all assistive tech that could help me.[27]

Thirty-two.

Recently, I went on a hike that I had been wanting to go on for a few years. It advertised itself as a loop and I thought, like most of the trails I usually hike, it would be easy to follow. But in the first half hour, I got lost twice.

I kept looking for trail markers but there were none. How do you know if you're headed in the right direction if you don't have that bright orange square affixed to a tree to reassure you?[28]

Thirty-three.

I had downloaded written directions for how to make it through the hike but they weren’t clear. Did I turn left here or after that steep uphill section? I walked uphill and then had to backtrack. This happened again. And again.

And then again.

Thirty-Four.

I had downloaded a PDF of Disability Visibility, an anthology by Alice Wong of first person essays about disability that I have an essay in, that morning to my text to voice reader, Voice Dream.[29] As I got lost and backtracked and got worried I would be forever lost in the forest, I listened to disabled people tell me how they had lost and found themselves amidst the ableism in society. And about the paths they had forged through the woods of disability.

Thirty-five.

I listened too to my own essay, which had been written at great pain.[30] It’s an essay about how my friend Maddy, who also had been disabled a head injury but didn’t struggle with screens, helped me write my first novel by transcribing my edits. I had just taken another wrong turn in the forest – the 10^th that day – and I cried in frustration as I listened to my own words. There was so much beauty in our interdependent bond – in the way that she helped me write and in the act of love and connection inherent in it – but I also wanted the freedom to write by myself.[31]

And I hated that the intersection of technology and my injury had taken that from me.

Thirty-six.

That text-to-voice app that I used was my first purchase of assistive tech in my attempt to hack my brain. It meant that I could finally read articles online again – something which has opened up my life.[32] I can easily download a copy of them and the app reads them back to me. I had missed reading the news so much for three years. And I finally could again. I was also able to listen to PDFs of books that didn’t have an audiobook.[33]

Thirty-seven.

When I asked for his impression of Voice Dream, a friend of mine who works with visually impaired kids pointed out to me that the visual processing aspects of my disability likely qualified me to access free libraries created for visually impaired people like CELA, Bookshare, and NNELS. I was finally able to read books that hadn’t been accessible to me for years because they didn’t have an audiobook and I still have to limit my print reading time.[34]

Thirty-eight.

As my life expanded again, I became hopeful. What if I could find a way to write that wasn’t painful? That wouldn’t exhaust my brain? I tweeted out of frustration that I was looking for an e-Ink tablet that I could type on. People sent me links to tiny word processors. To the Freewrite (which I already own)[35] and won’t help me edit a 100,000+ word novel in the future.

Then finally to the Remarkable tablet and the eInk monitor Onyx Boox. These looked promising.I felt like I was on the verge of a breakthrough!

Thirty-nine.

A friend on Twitter allowed me to borrow her Remarkable tablet to see if it would work for me. It allows me to handwrite with a stylus and then it transforms the writing into printed text. The Remarkable 2, which was recently released, allows you to also take pictures of your notebooks and get your notes transformed into text so you aren’t dependent on the tablet. I bought one. It is coming in October.[36]  

Forty.

While I like the Remarkable, the process of writing things out by hand and erasing is slow. It results in a lot of mistakes that I later need to edit. It is fine -- but it won’t allow me to edit a 100,000 word novel. [37]

Forty-one.

Voice-to-text apps aren’t perfect either. They too require that I edit them on a normal screen. They also require a different cognitive process of writing – one that it would take a while for my brain to get used to. I am practicing, hoping that it will get easier. I still prefer the act of typing on a screen.

Forty-two.

After getting lost for the 11^th time and almost slipping and falling on a log, I decided to download a GPS hiking app[38] to help me find my way out of the forest. I emerged half an hour later, exhausted. I just needed the right tech to find my way out.

The irony was that I had gone into the forest because assistive tech had failed me.

Forty-three.

When I had the idea for this essay, I thought it would be a story of triumph. I was sure that I would find the right hardware or software to fix my problem. I wanted to hack my brain to find the solution.

But I still don’t have a solution as I write this.[39]

Forty-two.

Instead, I have a bunch of very expensive imperfect workarounds that I’m usually too tired to use at the end of the day after my day job.

Forty-five.

“I think this could change my life,” I had texted a friend excitedly about the Onyx Boox Max 3 after paying over $1,000 for it. “If I can draft a novel and edit it without pain that will mean everything. Imagine if I could work whenever I wanted to rather than just on good days!”[40]

I sat with the hope of that for the week it took for it to be delivered then was so devastated to discover when it arrived that ghosting of e-Ink tablets triggers eye issues that are almost worse than a normal screen. Its need to refresh is also a big problem for my eyes.

After using it once, I was in so much pain that I put it aside and haven’t touched it since. I went on that hike to try to make peace with that disappointment. [41]

I have still not made peace with it.

Forty-six.

This essay isn’t a story of triumph. Instead, it’s a plea to the tech industry and those rehabilitating people disabled after an injury.

To the tech industry, I want to say this: In your rush to rapidly prototype. In your culture of shipping the minimum viable product. In your self-congratulatory hype about your great UX and UI design -- you have disabled me.

You have disabled millions of people like me. You have taken away jobs from us. Caused us pain. Made us collapse in fatigue. Kept us from living full lives. Excluded us. Silenced our voices. You have done this. Because you refused to think about us.

But we exist. And we deserve access. We deserve not to be harmed or excluded by the software and hardware you create.   

Forty-seven.

To the rehabilitation industry, I want to say this: Some of us don’t recover. Or we recover slowly. Or our recoveries are never complete. Our lives still matter. We deserve more than to sit and be unable to do the things we love or to work during the in-between.

We deserve to prepare ourselves for our potential futures by training ourselves on the tech we might need for them. We deserve to experience less pain. We deserve quality of life. We deserve that you prioritize this as much as you prioritize trying to make us ‘whole’ or non-disabled again. 

Forty-eight.

I want to write. And every day, I am researching and planning and hoping and working towards books I don’t even know if I’ll have the capacity to write.  

"I think I have been writing this piece in my head for years," my friend Erin told me about a phenomenal poem she wrote that later won an award. "It just came out of me so quickly. All in one night." When she said this, I hoped that would be what happened to me.

Maybe right now I am reading and seeding my future projects. Maybe someday they will all pour out of me when I have the physical and technical capacity to write them. I have to hope this is true.

I cannot keep moving through the forest if I don’t believe this.

Forty-nine.

I am not giving up. I am opening myself up into that uncertain future. I’m still lost in the wood but I am walking some days on a trail with no markers and others a trail with so many markers I have no clue which to follow. I am hoping that at some point on the graph my recovery or my brain’s neuroplasticity and the development of accessible tech meet. I dream of a day where I can work without pain. Where my disability doesn’t affect my writing. Where my writing doesn’t tire me out at the end of the night.

But I can’t get out of this forest alone. I need the tech industry to think about me. About the millions of people who are like me in that their bodies don’t fit the way tech has been designed but unlike me in why that is. There is no such thing as standard bodyminds. Human variation is broad. You need to design for that in your software and hardware.[42]  

Remember us the next time you design a product. Remember us before you ship it. Think about our pain. Think about how you have excluded us and shaped our lives. And next time -- don’t.

Fifty.

We are people just like you. We deserve access. We always did. It should have been in your original designs. It was not and that has harmed us. So, give it to us now. 

We will be here… waiting. Lost of in the forest. Trying to find our way out.   

One…

[1] The footnotes in this essay are an attempt to materialize the complicated, painful, and expensive journey of writing this essay as a person whose disability affects their capacity to use screens and therefore to write. As you read and the text is mediated by these footnotes, I want you to think about pain that I’ve experienced in getting these words to you and the works I haven’t been able to write since my injury because of the structural impediments I face. I also want you to think about all the other disabled people who struggle to use technology or write for different reasons. Finally, please think about how the only reason that I am able to write these words is because of the privileges that have allowed me to pay for the rehabilitation and technological interventions I mention in the footnotes that have gotten me to this point. A point still far short of my ‘ambitious’ goal of being able to write without… pain. 

[2] I have listened to and paid hundreds of dollars a year for audiobooks on Audible, Libro.fm, and Scribd in the last three years. I also have gotten free audiobooks from my library via Overdrive. 

[3] I wrote this section in a notebook that I took with me while hiking. I then transcribed it into text via Voice Dream’s Writer, an app I bought to do voice to text transcription which I no longer use because it insists on rereading the text back to you after you say it and, despite asking many friends for help turning this functionality off, none of us can figure out how to.

[4] In the first month after my head injury, I listened to 200 hours of audiobooks or the equivalent of over eight full days.

[5] I have still not written this book because I had to stop doing the research for it while recovering as I was unable to read print books for long periods of time for a couple years.  

[6] It took me four months and around $3,000 in physiotherapy until I stopped confusing these letters. Most of this I had to pay out of pocket since my medical plan only covered $750 in physiotherapy.

[7] Here was the marker that would help me find my way out of the forest, I thought.

[8] There was a two week wait to see her but a month an a half wait to see other neuro-vestibular therapists.

[9] It turns out that I had been told to look for the wrong marker. From the very beginning, I was lost in the forest.

[10] I saw my physiotherapist three times a week at the beginning. Then two times. Each half hour appointment was $80 and each hour-long appointment was $160. I stopped counting when I spent $6,000 on physio. I don’t want to know how much it has cost me in total.

[11] Here was another set of trail markers to follow.

[12] It would take me six months before I was ready to go back to my day job again. I lost an incalculable amount of freelance writing gigs during that time as well.

[13] I still can’t. I can count the number of movies I’ve seen in the last three years on one hand.

[14] These were different trail markers leading me on a different path.

[15] While they helped, these suggestions weren’t enough to allow me to quickly regain functionality. It took me years to realize that the philosophy of rehab, which focuses on healing and returning the body to a state of non-disabled intactness, often refuses to fully engage with accessible tech accommodations because it refuses to admit that injury might become a permanent or long-term disability. What might be different about the experience of recovery or disability if there was more integration between accessible tech and rehabilitation strategy?   

[16] The F.luxx app was free. The anti-glare screen protector cost $100.

[17] I wrote most of the sections up until here on the eInk Remarkable tablet borrowed from a friend. I handwrite on it and then it sends a e-mail to me that translates my writing into text. It is not always accurate and I spent about an hour correcting the typos in this essay on my laptop.

[18] I have seen two vision therapists. The first had a $300 initial exam fee and then charged $150 per session. The one I see now had a $500 initial exam fee and charges $185 per session. I stopped counting how much I spent on vision therapy when I had spent over $3,000.

[19] These cost around $50. Since I often lose things because of my brain injury, I had to replace them once at a cost of another $50.

[20] I bought three pairs of Theraspec glasses in the last three years at a cost of over $400. I lost one pair. I destroyed another in my washing machine. I will be ordering another pair soon to replace that one for a cost of $125. I also got a prescription pair of coloured glasses that cost over $200 but which was covered by my medical plan.

[21] The tape cost $5 and makes a huge difference. I would happily buy more. 

[22] I have probably spent well over $200 on paper and ink cartridges since I started doing this for my novel alone. I printed this essay out three times and made edits on it as well.

[23] I have paid friends $20 to $25 an hour to do this work. In total, this has cost me over $2,000. In order to afford this, I had to take on extra freelance work. The freelance articles I write are easy to write and don’t require as high a level of cognitive capacity as editing my manuscript. But writing them is still painful and the time that I do that work is time I am unable to work on my personal writing. This is how I have funded all of the expenses listed in these footnotes. I have sometimes had to write 10 to 20 articles a month to do this. I have had little social life during those months since I write primarily on the weekends. 

[24] Many apps still do not have a dark mode option -- including Facebook, which I no longer use for that reason. I cannot imagine how much my life and recovery would have been different if dark mode had been standard on phones and apps when I was injured and I had been made aware by those helping me with my recovery that this would be less painful for me. I wouldn’t have spent so many nights lying comatose on my couch because my brain was fried. I might have had a social life during those months. I might not have felt like my life was meaningless and wondered how I could go on so often. I might have published a novel by now. There are still apps I struggle with because they don’t have dark mode and aren’t set up with people who have visual impairments or visual processing issues in mind. Dating apps in particular stand out. Would I still be single? Would I have given up on dating again and again because dating apps were all so painful to use? The design of apps materialize as both pain in my body and the altered structure of my life.

[25] Dark mode and high contrast modes are not salves to all my problems. They still cause me pain, fatigue, and brain fog. But they cause me less of it. And it sometimes takes longer for them to set in.

[26] I do not completely know what tech solutions would end my body’s disablement. We might not yet be able to imagine them. I need those in the tech industry to dream about accessibility with me and other disabled people.

[27] My desire to look into assistive tech came out of frustration, of anger, of the pain at having not been directed towards it in the first place. At all the things that I had lost because no one told me I should be looking into the tech that did exist when I was injured and I could have started getting good at using it. My grandma is deaf. She lost her hearing as she aged but no one taught her how to sign or read lips so she struggles to communicate. I could have been learning how to use voice to text programs like the Dragon suite after my injury. It takes a while for your brain to shift how it composes complex things like novel drafts. You need to build up different parts of it. This is possible through neuroplasticity. I know this all too well. All those audiobooks I mentioned listening to when I was too fatigued? I went from being able to listen to them at 1.5x the normal speed when injured to listening to them at 3 to 3.5x the normal speed now.  I am just now starting to use voice-to-text to write but my brain isn’t able yet to compose complex things that way. If I had been practicing this for the last three years, who knows where I would be in my ability to do this now?

[28] Or what if there are so many markers and breadcrumbs you don’t know which to follow?

[29] This app cost me $30.

[30] It was written before I was using high contrast mode.

[31] I also am getting less freelance work these days and I’m not sure how sustainable it will be for me to pay people to help me edit my work over the long term. That could mean that I will once again find myself unable to write or finish projects in the future.

[32] At the end of 2017, the year I was injured, I watched a ‘highlights of 2017’ video on New Years Eve. I recognized so few things that had happened. It felt surreal how much I had missed and lost.

[33] I cannot tell you how excited this had made me and how much I delight in this ability. I wish someone had told me to buy this years ago. But I didn’t know it existed and people treated me like a temporary injured person rather than someone who would be struggling with these challenges for years and possibly the rest of her life.

[34] I have read 295 books this year – on track to potentially reading 500. My eyes can only read print for so long every day. Having access to audio versions of books that don’t have audiobooks available otherwise has been so liberating. I can read things that were not accessible to me before.

[35] This was a gift from a friend who wanted to support my writing, but Freewrites generally cost over $500.

[36] This cost me over $700 with accessories that will make it easier for me to use.

[37] It did allow me to write the sentence I am footnoting though. The Remarkable has made a huge difference. It is an imperfect tool but it has greatly helped me.

[38] This cost me $30 and was worth every penny. I was running out of energy and was afraid my brain would melt down in the forest and I wouldn’t have the energy to hike out.

[39] The only way I managed to write this essay through pain is by live tweeting writing it to keep me focused as I struggled. It is a process that my friend Megan tweeted in response to define as: “Co-working, but with the whole internet.”

[40] I had to take on a number of extra articles that month to afford it.

[41] When I relayed this to my friend, it was hard for me not to cry over the phone.  

[42] I have added up some of the costs of the tech and other assistive devices I’ve had to purchase in this essay. But some of these things I had to pay for could have been part of the products I had already bought. Why can’t I buy a laptop with an eInk screen? Why hasn’t eInk developed more to reduce ghosting? Why doesn’t the popular eInk e-reader I already own have the capacity to turn into a word processor? Why can’t the Remarkable be used easily with a keyboard and word processor? What is the environmental impact of having to buy multiple devices for accessibility? What is the human cost of mining for the minerals needed to make those devices and the labour to assemble them?  Why do disabled people have to pay extra for access when it should be designed into the products themselves as accessibility options. These are questions I ask frequently. These are questions the tech industry does not ask enough.