One of the foundational principles of Disabled Writers is connecting writers and editors with resources. That includes our database, but also mentoring and sponsorship (coming soon!) and our blog, in which experienced writers and editors talk about the challenges they’ve faced, dole out advice to help early-career writers and editors avoid their mistakes, and talk frankly about the media industry.
We’re pleased to host a variety of people on the blog from all walks of life and all stages of their media careers, and we hope that you find someone whose words resonate with yours or who offers useful insight into a frustrating process, whether it’s pitching or chasing down invoices. (Speaking of pitching, if you have a submission for the blog, email email@example.com — we pay $250 for 1000-1200 words.)
Check back once a month for updates (we’re a quality, not quantity joint), and follow us on Twitter (@disabledwriters) if you haven’t already.
Writing and illness have always been interlinked for me. I started my first (very bad) fashion blog in 2009 as an escape from depression and the constant sickness lupus brought. I’d recently had to quit my job as a nursery teacher due to my crap immune system and survived a suicide attempt so was rebuilding my life but at a loss with what to do. I knew I wanted to be a journalist, but I didn’t know how, so to paraphrase Hamilton, “I wrote my way out.”
As I grew both as a person and a writer and began to accept my illnesses, I no longer wanted to escape from them. But, whilst I’d accepted my illnesses, the one thing I still struggled with was my limitations; little did I know that would change.
I turned my blog it into a place where I could write about my experiences and in turn give others a voice. I gained a community and support from others in the same boat, which gave me the confidence to launch my career as a freelance writer and journalist focusing on health, chronic illness, disability rights and drawing attention to discrimination and injustice disabled people face.
I certainly had enough topics to write about: lupus, depression, dyspraxia, rheumatoid arthritis, celiac disease, asthma, osteoporosis, chronic migraines, anxiety. Add onto all of those two mini strokes, almost dying of sepsis, a hysterectomy at 28, and a still undiagnosed reproductive health problem that currently means I’m undergoing medical menopause.
My failing health gave me more to write about, but it also meant I struggled to write on my bad days. My arthritis and lupus would cause my hands and wrists to swell and seize up. My mental health could be so poor that I couldn’t get out of bed, never mind write. I can be overwhelmingly exhausted thanks to chronic fatigue and develop something known in the chronic illness community as “brain fog,” where you just can’t keep thoughts in your brain, it feels like your head is stuffed full of cotton wool.
As a freelance writer, I’ve had to learn when to take breaks and stop putting so much pressure on myself to always be pitching when my body is telling me otherwise. But I when I went fully freelance I learnt that this just wasn’t sustainable and would lead to more days off than days working as opposed to the other way round. I was used to be feeling ill because of my lupus, with a looming migraine and my hands in arthritis gloves and would still be at my computer because of the pressure I put on myself.
Not listening to my body only makes it worse. Headaches and brain fog develop into migraines, joint pain gets worse, and spreads throughout my body. The fatigue keeps battling with my stubborn nature until I’m sobbing with exhaustion and pain. If I battle through I make myself more ill and the work usually needs a lot of edits because of how ill I was when I wrote it. But, what can I say, I’m strong-willed.
I know the obvious solution for all of this is to rest, but as a freelance writer, if I don’t work I don’t get paid. Another consequence of me not writing means that my story doesn’t authentically get told. The main reason I push myself is that if I’m not working I feel guilty. In a world where your worth is based on how productive you are, it’s easy for a disabled person to feel useless and like a burden. So, I push myself.
But I’ve learned that instead of powering through all guns blazing, it pays to forward plan. As I know how forgetful I can be, I constantly make notes on my phone with article ideas. When I have a breakthrough on how a part of a piece should go, I add to it. On days when my hands hurt too much to write I use voice to text software and apps such as Dragon or Evernote. My single greatest investment has been a bamboo bed desk, which allows me to work from my bed with my laptop at an angle so I can lie down whilst writing. It even has a cup holder and little drawer for my snacks!
Because of my terrible memory, I rely on setting reminders on Alexa to be sent to my phone to email editors and add to articles I’m writing — though I sometimes forget I’ve set them and when she suddenly announces I need to do something I think she’s a mind reading witch. I’m also massively old school so forever scribbling notes to myself that only I can understand.
As freelancing is my sole source of income, some days I don’t have the luxury of just not working — but the nature of my career means that I can choose when to take it slow, something I’m always thankful for. It means that I never take a good health day for granted and do as much as I’m able to and when I begin to feel the tell-tale signs of a flare — depending on the condition this can be aching hands, sleepiness, pelvic pain or headaches — I’m quick to head it off with support bandages, splints, medication or my trusty TENs machine.
My working week isn’t structured the same as most, I typically work from 9-12, have an extended lunch break and take a nap, then work for a couple of more hours. On bad days I can work the absolute minimum, which will be maybe one or two hours, and on better days I can do an almost full day. But it’s important to never push myself too far.
The most important thing to do when I’m having a bad day is to be kind to my body. Yes it can be revolting against me, but fighting back will only make it worse. On painful days I cut myself some slack and take it easy. Sleep is not the enemy. After living in this body for over three decades I know that instead of hating it, I have to love and appreciate all that it gives me. My body may be falling apart but it’s also resilient. Despite the pain it allows me to take my beloved Dachshund puppy on walks every day. I have a creative mind and the determination to share my stories, no matter what.
It can be hard, thanks mainly to my stubbornness, but accepting and setting my own pace has been vital in my growth as a writer. If I hadn’t learned to slow down I don’t think I’d be where I am now. I’ve learned that you don’t have to stop writing when you’re disabled, but you do need to listen to your body.
Rachel Charlton-Dailey is a freelance journalist and writer who specialises in health and disability. Her bylines include HuffPost, Metro UK and The Independent. She is the founder and Editor-in-Chief of The Unwritten, a new publication for disabled people to tell their stories. In her spare time she can be found (slowly) chasing her dachshund Rusty around the North East English coast.
Coming to understand myself as disabled has been a far from linear journey, much like other realizations that have been particularly meaningful in my life. In some ways, that process occurred alongside the reckoning of my identity as an artist, during the height of the quarantine measures for COVID-19. While I have struggled with back pain for at least a decade, sleep issues following white supremacist workplace harassment in 2016, and migraines since my teens, it took the closure of my chiropractor’s office to flatten the curve last summer for me to do the much-needed work to unpack my own internalized ableism about being disabled. It forced me to realize that I deserved the same compassion I pride myself on providing for students with disabilities in my day job as a social worker in the scourge of academia.
All too often, health can be viewed as an achievable goal and moral obligation for all folx, but I know the reality of how chronic health concerns of migraines, back pain, and sleep issues make that impossible. Especially when I navigate the medical-industrial complex in my fat brown body, this is further complicated by xenophobia, white supremacy, misogyny, fatphobia, etc. and I understand the need to state these matters directly to those who fail to provide appropriate care. Years ago, that meant telling a doctor that seeking birth control was actually a valid reason to make use of his walk-in clinic when I was told that I should have gone to the public health unit, as I outlined how the pill had long regulated my menses to reduce heavy blood losses that had required iron shots, but folx deserve to have their contraceptive needs met, regardless of why.
Since a decade as a social worker has taught me that I have little control over getting those in power to address rampant oppression in the body I inhabit, I pour my efforts into unlearning ableism to give myself the respect that I have always deserved in these ever rigged systems. As a freelance writer, that means acknowledging the reality that I do not always feel well enough to write on a daily basis, which I must take into account when accepting writing assignments, but that can be especially challenging when these opportunities have not always been offered. Despite my attempts to secure paid gigs for nearly a decade, many publications finally expressed some semblance of interest in commissioning BIPOC writers following last summer’s shift towards more willingness to reckon with the longstanding gaps in racial justice, and the most oppressed of us know that little has changed despite this online appearance of progress.
Before that white supremacist workplace harassment stole my nightly slumber, I would not hesitate to work into the wee hours of the morning or watch something disturbing late into the evening, but now I know and do better. Given how poor sleep can easily fuel a migraine, especially when contending with hormones during my menstrual cycle, I have a selection of podcasts saved in my Stitcher app under the title, “Okay Before Bed” given how little this world caters to fat brown disabled women. While I still make every effort to think critically, including listening to perspectives from folx with lived experience of marginalization to continue to be the most anti-oppressive social worker I can, I do so at other times than when trying to sleep as heartbreaking stories make that difficult, and I no longer feel the need to harden myself in response to these harsh truths even if it means that I shed more tears than before.
In terms of the freelance work I accept, I try to be equally intentional, as I recall how quickly the triumph over my highest per-word rate yet vanished when an editor changed my reference to white supremacy to “cultural racism” which resonated with no BIPOC folx that I could find. Ideally, I would always get to explore gigs that truly nurture my soul, like when I got to facilitate Sustainable Resistance for BIPOC Folx therapeutic writing workshops for Scarborough Arts, which was a rare opportunity to combine my passion for Social Work and writing. Instead, I have lived the reality of white fragility’s violations of my personhood far too often as both a social worker and a writer to still be as naive as folx with epic privilege expect when they demand performative hope from those of us who are much more oppressed and well aware of it.
Beyond the labour that I get paid for, there is also unpaid but necessary work in looking ahead and reconciling that I am unlikely to sleep well when a perusal of my calendar app fills me with dread, like when I know that my late grandfather’s birthday approaches, as I am well aware of the benefits of navigating less assignments alongside the grief that lingers decades later. In those moments, I convince myself to negotiate deadlines that are further away with editors I can only hope will consider my needs, as I take note of those who have proven less than accommodating, and instead work at strategy by some means with that newfound knowledge. As much as I resist, that sometimes also means taking a step back from the unpaid labour I remain keen on doing to support oppressed folx, whether in a formal role, like serving on a committee for an ethnic agency, or my time informally disrupting the problematic status quo.
While I would be lying if I said that I never doubt my writing abilities, I am getting better at understanding how often those feelings of apprehension about my work stem from feedback from folx who are minimally invested in challenging their complicity in extremely oppressive power systems. At those times, I remind myself of wisdom from Audre Lorde that the master’s tools will never dismantle the master’s house, and reflect that part of continuing to write truth to power is accepting my humanity even when I cannot be as productive as capitalist structures demand.
To do this work, I must continue to unlearn the inherently ableist colonialist messages from my Trinidadian childhood that I need “to burn the midnight oil” to be “the cream of the crop” as those do not bode well for disabilities, much less those of us in BIPOC bodies often deemed highly disposable by white supremacy. While challenging taken-for-granted beliefs takes time and effort, it is much-needed labour and well worth the work as it allows me to give myself permission to take a break from writing continuously for hours or stop working and get rest when I feel tired. Especially when up against folx and structures that fail to see me as worthy of empathy, it becomes even more crucial to make that my priority or I may struggle further if back pain exacerbates, which often results in poor sleep, and dramatically increases the odds of contending with a migraine the following day. And sometimes it is spite that keeps me going the way others rely on hope because my art deserves as much space as the privileged writers whose work received praise long before more talented BIPOC folx ever received a chance.
Well, yeah, sometimes I can hardly move because my body feels too heavy from the depression.
Yeah, sometimes when I look at a screen for work I feel my brain click off, leaving me frustratingly frozen.
Yeah, sometimes a slight criticism from a coworker will leave me fuming and wanting to hurt myself.
But I can run and jump freely. I can usually express myself okay. I have all my limbs and all my senses. I have it better than most.
Steph, you’re doing the whole “at least you aren’t ____” thing. You hate it when people tell you that others have it worse, and you’re doing it to yourself.
Damn it, you’re right. Okay. Let’s try this again.
This fall, I worked an internship at CBC under their CAPE (CBC abiliCrew Placements for Excellence) program, designed for people with disabilities to gain meaningful work experience at Canada’s public broadcaster. I couldn’t help feeling like I didn’t belong, amongst a blind woman and an amputee.
This is common for people with severe mental illness, like me. I have borderline personality disorder and anxiety, along with symptoms of ADHD and bipolar disorder. How can people with mental illness move to accept the fact that although we may be different from people with physical disabilities, we are still disabled and face barriers in employment due to our mental illness?
During my tenure at CBC, I often felt like an undercover able-bodied person, and that if I said the wrong thing or acted too neurotypical I would be thrown from the station, shamed for taking a spot away from a real disabled person.
I felt ashamed, like I wasn’t disabled enough to be part of the program.
At the same time, this was my first full-time job out of college and I was a 22-year-old living alone for the first time in my life. I was just starting to see the debilitating effects that mental illness can really have on a person, and I began to understand that it should be considered a “real” disability.
There were days where I pushed filthy dishes and beer cans out of the background of my video calls. There were days I attended meetings with a smile but immediately crawled into bed once I signed off. I spent all night one Sunday on my local mental health crisis line, yet showed up to work bright and early Monday morning.
A cycle was created. The work itself wasn’t too challenging, but I knew if I took on more of a workload, I wouldn’t be able to sustain my habit of spending most of the day staring at the ceiling under my duvet. Hiding this fact, however, just made me double down on my feelings of worthlessness. And then, feeling this way made me need to spend even more time in bed.
My well-meaning coworkers told me that if I needed a break I could take one, and all of the other sentiments you hear when you are publicly mentally ill. Even though I was specifically working here because of my illness, I still felt as though I couldn’t be open about my struggles. After all, in an environment where you are being paid to be productive, how accepting can someone be if I need something to be repeated because I zoned out?
And with the introduction, especially since March, of numerous policies in place at the company aimed at bettering employees’ mental health, you’d think that this feeling wouldn’t be so strong. Well, I’m sorry, but a weekly yoga class over zoom isn’t going to cut it for my brain.
In one of my many breakdowns over the last few months, I was looking online for the CBC Employee Assistance hotline, but I found out that for some reason you were only able to access the hotline if you had been working at CBC for 13 or more weeks. Sorry, was my suicidal ideation supposed to wait until after my 12th week to show up?
All these experiences made me almost regret the fact that I was publicly mentally ill. Funny enough, sometimes I find it easier to struggle in silence than to be open about it.
And I’m definitely not trying to bash CBC, as there is only so much you can expect when we are just starting to even talk about complex mental health issues such as mine. These experiences are a result of a failure of society, not any one company.
However, I do see the benefits of being open about mental illness — it is about time we start tackling the stigma around it and recognizing it as a legitimate disability. I tried a couple strategies that put me on the path to embracing the label of “disabled”.
First, I tried to just speak in facts. I am disabled. The chemical imbalance in my brain results in difficulties. Sometimes I can’t work because of this chemical imbalance. My parasympathetic nervous system is dysregulated. Speaking in purely factual statements is helpful for me because they are indisputable facts. There isn’t room for judgement, emotion, or resistance.
I reminded myself that I could mourn if I needed to.
When you accept that you are disabled, you are accepting that your life is more difficult than someone who doesn’t suffer from mental illness. That sucks! You didn’t do anything to deserve your mental illness. So scream about it. Get pissed off. Cry and mourn and grieve the hand you were given.
Lastly, I realized my mental illness makes me unique; leverage that.
Even though there are a lot of cons that come with being mentally ill, I try to find my strengths. I can be extraordinarily empathetic and kind, because I know what it’s like to need someone to carry me. My ADHD symptoms make me a great worker because I think outside the box and bring brilliant energy to every room. By finding your unique strengths, you can start to see that although you are disabled, that doesn’t make you any less valuable and important to the world.
It’ll take time to accept that you are disabled. Remember that although it is mostly invisible, mental illness has very real effects on your life and it’s okay to label yourself as disabled. And realize that your mental illness brings something special and unique to your work as a writer.
Stephanie is an emerging journalist based out of Edmonton, Canada. When she isn’t writing passive-aggressive articles on the city’s transit system, she’s usually chilling with her cat Juno or playing video games. You can find her on Twitter @s_swensrude or at her website, stephanieswensrude.com.
My career as a freelance writer started purely by chance. A random invitation to a book club would introduce me to the possibility of writing, a career I had never really considered before. Though unexpected, the opportunity came during one of the most difficult times of my life and my ability to work as a disabled freelancer has given me a creative outlet, a source of income, and a cathartic form of therapy.
After leaving my job of 10 years due to major episodes of anxiety and depression, I was also diagnosed with fibromyalgia. The diagnosis came after years of being dismissed by doctors because of my weight. As relieved as I was to have a diagnosis, I was terrified that having yet another chronic condition would keep me from working again.
At that time, I put all my value into having a paying job. Not being able to make money, after being the major breadwinner for my family, destroyed my sense of self-worth. If I wasn’t working — if I wasn’t making money — I was nothing. Still, my mind and body couldn’t go at the pace I had set before. It took a good 18 months to get healthy enough to start exploring who I was as a newly disabled person.
That exploration led me to that life-changing book club meeting. I was invited to the small book club by someone I had recently met while exploring other new hobbies. At the first meeting, the two other members shared with me that they both worked as freelance writers. I was immediately intrigued. Seeing my interest, they explained how they got into freelance writing. They shared with me how I could pitch to publications and editors and offered advice about their experiences.
For the first time in years, I felt like this was something I really wanted to do. The anxiety I felt about exploring freelance writing was more of a giddy kind of excitement instead of the manic sort of energy I was used to feeling towards the unknown. This was something I had to try. I initially submitted three pitches and was rejected three times.
Still, the refusals didn’t hurt as badly as rejection usually did. Instead, I was proud that I had tried something new and was still excited to explore writing. That optimism was rewarded when one of the platforms that initially sent a rejection offered me a chance to ghostwrite as a freelancer. It didn’t pay well and it was a lot of listicles and fluff pieces, but it was just the start that I needed.
During the first year of my freelancing career, I stuck solely to ghostwriting. The editor I was working with offered me a ton of support as someone who was just starting out in the business. He had once been where I was so he was very helpful while I learned the job. During that year, I was able to ghostwrite on several websites belonging to minor media identities. It was fun, light work and the approval I felt when I saw an article perform well was just what I needed to get some of my lost confidence back. Eventually, I felt assured enough with my work experience to renegotiate my rates and received an offer from my editor for credited writing gigs.
Being a ghostwriter was great, but nothing compared to seeing my name printed under my words. I ended my ghostwriting career and used that new confidence it gave me to write about more personal issues. Through pitching to publications that I personally read and respect, I was finally able to work on more substantial topics. I finally had an outlet to explore themes like disability, fatphobia, reproductive rights, and gun control in my writing.
Finding professional self-fulfillment and a way to monetize my interests really felt like a dream come true. Still, more than that, I found a freedom through freelancing that I never had with my former job and I never needed it more than then. Disability doesn’t look the same each day. My mental illness and fibromyalgia can be impacted by any number of variables, from stress and sleep patterns to the weather and my menstrual cycle. So freelancing seemed absolutely perfect for the inconsistencies of my disabilities.
One of the biggest issues I had when working a job with a set schedule was the guilt I felt when I needed to take a day off for my health. However, as a freelance writer, I’m allowed to have bad days. If my muscles are aching or my anxiety is through the roof, I can take time to recover. I can plan work around doctor’s appointments and write whenever I like without worrying that I’ve inconvenienced someone. Building relationships with the editors I’ve worked with has also been a great benefit of freelancing. I can honestly share my needs and eliminate stress about accommodating my disability.
When pitching to other publications, I also discovered a wide community of freelance creatives — both disabled and not — on social media. As a tool, using social media sites like Twitter has helped me to self-promote and leave my comfort zone to find new opportunities. However, there’s the added bonus of connecting and communicating with those who share similar experiences, challenges, and aspirations. Since first interacting with Disabled Twitter and users who work freelance, these connections have become a never-ending source of information, humor, and support.
I’ve had so many meaningful interactions with freelancers that I’ve met via social media. Sometimes, it’s just reaching out to ask for an editor’s contact information, but it’s also those times we’ve re-blogged each other’s work to show our support of each other. If I need someone to proofread something or to bounce ideas off, I know help is just an app away. If I’m having a terrible pain day, I have a community of disabled friends who can commiserate and offer spoons.
Besides offering better flexibility and an ever-growing support system, working as a freelance writer has been a form of therapy for me. In being able to write about the things that matter to me, I’m more able to turn my focus inwards. Writing through experiences such as the death of my father or my time with postpartum depression helped me better understand these tragedies. Unpacking the facts and feelings by retelling these stories has made me a more mindful person. The catharsis I experience from writing about disability topics or COVID anxiety is just like the relief I get from a great therapy session. I can only hope that anyone who reads my words experiences that same feeling.
As a disabled person, I can’t fully express how grateful I am for the opportunities that freelancing has offered me. Being a freelance writer has enriched my professional life as much as it has my personal one. Though a career as a freelancer was unplanned, I can’t imagine what my life would be like without everything that work has allowed me to experience. The agency, the stability, the flexibility, the affirmation, and the community I have found through freelancing have made every struggle to get to this point completely worth it.
Samantha Chavarria is a disabled Latina freelance writer who lives and works in Houston. The life-long Texan writes about identity, wellness and disability advocacy, social justice, and pop culture, contributing words to platforms such as HelloGiggles, Bustle, Mitú, and Bitch Media. When she isn’t writing, she’s busy being a wife, mother of three, and spending too much time on Twitter. You can read more of her work and contact her @teoami on Twitter & Instagram.
My name is Michael Baginski. This will be my second year as a contract freelancer. I am a writer, journalist, and I do a little video editing on the side here or there. I am also autistic. I was originally diagnosed with Asperger’s syndrome when I was born, and then later changed to being on the spectrum after therapy, doctor’s appointments, etc. I also have ADHD, which makes for a great concoction.
Everyone’s experience in media is different. And that is especially the case for media workers with neurological disabilities. They can have difficulty communicating with editors, fellow media workers, and just about anyone in a job-oriented field. It can be extremely difficult, speaking as someone who is autistic and diagnosed with ADHD who had trouble with many tasks at first. I can only speak for myself about my experiences, but I want to share my guidance for those who are in the media and have similar difficulties communicating their thoughts and feelings. This can be especially helpful for individuals who do not have disabilities, but have trouble speaking up for themselves in general.
One of the things I learned right away about pitching and having said pitch accepted for publication is that I needed to have a lot of patience. I truly believe patience is one of the most difficult skills I had to learn while working and in my personal life too. There are no set rules for publications to follow with regards to freelancers. You want there to be, as they can help you. But there aren’t. There are still small things you can do to manage that time well without getting yourself or another person upset. Being kind and courteous to an editor who treats you the same way back helps tenfold. The editor you work with might not have any control over how long a piece is sitting on the wayside. But if you take your time, follow up when appropriate, and stay in communication with your editor, the experience can be less frustrating overall.
Last year, I pitched a piece for months and finally got it accepted. But due to budget constraints, I could not see my work finalized until four months later, in September. Yes, I was frustrated and relieved at the same time. Being told to be patient is something that can annoy a lot of struggling freelancers out there. Especially now during a pandemic. But as someone who is impatient and working on being less impatient, being patient has helped me overcome one of the obstacles I’ve stumbled getting past when I’m communicating with others.
Standing up for yourself is also important. Frustrations can get to you and you may start to withdraw because when you are distraught with sad emotions, you implode emotionally, and you have trouble concentrating on responding, rather than reacting. In addition to my autism, I have social anxiety and depression. I can respond very strongly with my emotions in a scenario that does not have a favorable outcome for me.
Being upfront, being confident, standing up for yourself, and not losing your professionalism during an exchange can help you clearly communicate your needs and what you need help with when working with an editor. Nothing is ever set in stone. The world of freelancing and contract work adds new factors into play every day. And sometimes, that can mean a date for a deadline you cannot meet or a late payment. So you ask if you can change a deadline date, for example, even though they never gave you that option. If they say no, ask why. If they won’t give you an answer, kindly decline moving further and thank them for giving you the opportunity to write for them. If you are waiting on payment, make sure to follow up when time has passed. I went from waiting 2 days to follow up, to a week when I wrote how-to guides for a site.
Depending on the size of the project, it is always a good idea to know your rights as a freelance contract worker. For example, NYC has an act known as The Freelance Isn’t Free Act. It allows a contract worker to take a client they were contracted to work under to small claims court after 30 days from the date of publication. Because it does not cover the whole state and only the city, you need to bring a publication that is based in NYC to court in order to utilize the law. Meaning, you can still utilize the law if you live in Texas and the piece you published was in New York City, like the New Yorker or Buzzfeed. You never want to get to this point, but if it is out of the hands of the editor you are working under, it’s best to know your rights in general.
And if you can, join a union. Navigating my first year as a freelance media worker would have been a lot more difficult had I not first joined a union (FSP) that allowed me to be more confident in negotiating rates, dictating the best deadline I can work around, and having the support of my friends and peers.
I absolutely believe you should join a union for freelancers in order to improve your communication skills. When I joined the Freelance Solidarity Project in March of last year, I was very nervous because I did not feel I belonged. I was scared and very withdrawn because it was a new challenge for me to be more social and feel like I belong when I hadn’t written as much beforehand.
Fast-forward a year later, and I am finishing my one-year term as Events chair for the first rendition of their organizing committee. I would never have gotten that far into being elected without learning about what it means to be a part of a union, what rights I have as a contract worker, and what can be done to help gain and protect the rights of this generation and future generations of media workers. I was elected on my guarantee of wanting spaces where we had events (back when we could meet in physical spaces safely) to be as accessible to everyone as possible, and to not make anyone feel alienated from coming.
That is especially how I felt when it came to my fellow people with autism and how sensory overload can be difficult to navigate in a setting with loud music or people being crowded up on one another. I can’t tell you the future of events, but I can tell you that finding solace with people you’ve never met before, and creating friendships out of that, will help you communicate better. Being part of a community makes you feel less alone in your thoughts, and that helps expressing what is needed for you more clearly in the workspace. You also just feel good at the end of the day too.
Michael Baginski is a writer, video editor, and streams on Twitch. You can find him on Twitter talking about pop culture, politics, and Tim Curry @bagmanman. You can also find him streaming at twitch.tv/bagmanmanman because the one man was taken.
The internet is a confusing place to be disabled. Disabled bodies are more visible than ever, and disabled voices are heard and amplified by social media. As a result, nearly everyone has a superficial understanding of disability, gleaned via progressive sportswear ads, public health campaigns, and tasteful, well-lit film portraits. But there is little understanding of what it is actually like to live in a body that requires special care and attention. The emphasis has been on normalization, which invalidates any meaningful discussion of difference.
I am an artist and I am disabled. I haven’t always been able to merge those identities. I used to emphasize the former at the expense of the latter. I shared my drawings and held my tongue. I got used to letting my work—and my internet presence—speak for itself. I got used to watching new acquaintances pull out their phones and look up my social media. In their eyes, I underwent a realtime transformation. My career rendered me valuable in a way that my personality couldn’t. I drew for hours every day, stubbornly ignoring the ache in my spine and numbness in my hands. My skills improved as my body fell apart. Pain infiltrated every aspect of my life, from my daily routine to my greatest ambitions. It was no longer something I could conceal, and so I began to tell the truth.
It took me a while to adjust to being publicly disabled. I learned through trial and error never to frame my disability as something that might prevent me from performing. My disability was to be an artistic theme, an impetus, not a barrier, to creativity. I began the work of transforming my personal struggle into neatly-packaged mass entertainment.
This new breed of public figure—the disabled influencer—is expected to tread a series of fine lines on the path to success. Her struggles are significant, but she inevitably triumphs over all of them. Her accomplishments are remarkable, but only in light of her disability, and not by able-bodied standards. She has her ups and downs, but she always ends her stories on a positive note. Ultimately, she is grateful for her disability, because it has taught her so much. It has given her access to a store of knowledge reserved for the wretched of this earth. Generously, she is willing to dole this knowledge out to you day by day, caption by caption, so that you can learn all the lessons without actually experiencing the adversity.
I too must maintain a careful balance in order to sustain my career. I must never appear too disabled, and conversely I must never appear so competent that my disability is called into question. Whenever I share a new drawing, my inbox fills with messages asking if I’m “better.” (I have an incurable and degenerative disease; there will never be a “better.”) Whenever I take time off, I must answer for that as well. “I miss seeing your art,” they say. “Where are you?” they implore. “Come back,” they demand. I see these messages and feel as though I’m seeing my own memorial from beyond the grave. And then I do what I will always do: I come back.
Making art for a large audience is a trade-off. In my case I traded anonymity and creative freedom for external validation and financial security. In the beginning, with only my friends and family for an audience, I explored all sorts of media—painting, collage, charcoal, or whatever I gravitated toward on a given day. I gradually narrowed it down to what performed best online. The dream of becoming a freelance artist was so appealing that there was nothing I wouldn’t sacrifice in pursuit of it. First I gave up my time, then my agency, then my self-esteem, and finally my health.
By the time the health problems began, I had already sanded down the edges of my life to fit within the influencer mold. I had been working from morning until night, posting religiously, promoting myself shamelessly, and drawing pictures that sold well but didn’t excite me—mostly baby animals. I was resigned to paying my dues.
My eyesight was the first to go. The ophthalmologist said I hadn’t been looking up from my work often enough to exercise my full range of vision. I received my first pair of glasses. Then my hands started giving me trouble. It felt like I was drawing underwater, like some invisible force was pushing back against my hands, resisting their movement. It became difficult to use my phone. Texts took ages to compose. My sleepy fingers failed to keep up with my inner monologue, and I watched them move in slow motion, the signal of my thoughts buffering like a film on bad wifi.
Then came the neck pain. At first, I attributed it to poor posture and overworking. But when I finally got a diagnosis, I learned that what I was dealing with was congenital. I’d been born with a spinal condition that would have emerged eventually, no matter my profession.
At the time of my diagnosis, I was new to “influencing.” My following had expanded from a few thousand to over 100,000 in a matter of months, following a series of viral drawings and features on high profile art accounts. My inbox was flooded with requests for portrait commissions, brand partnerships, and tattoo designs. It was impossible to conceptualize the fact that my thoughts would now be broadcast to complete strangers, people who wouldn’t recognize me if I passed them on the street. My audience was larger than the population of my home city, and yet I still treated Instagram like a group text, publicizing my emotional crises while still in the throes of them.
So when my doctor sent me a scan of my neck, I posted it online. It was the most intimate image of myself I’d ever shared—it showed the very shape of my brain within my skull. The response was immediate and overwhelming. As I scrolled through dozens of messages, I was confronted with a wealth of unsolicited and dubious medical advice. I had been hoping for emotional catharsis, but I was promised much more than that: I was promised a cure.
It took me hours to sort through the cures, which often contradicted one another. I was told to cut out dairy and also to drink raw milk, to take psychedelic drugs and to stay sober, to go vegan and eat only red meat, to get invasive surgery and avoid mainstream medicine altogether.
I tried more of these than I care to admit. I spent hundreds of dollars on supplements, books, diets, and exercise equipment. I made a chart to document my progress on a variety of scales—pain, energy, mobility—and taped the paper to my living room wall.
The results were far from conclusive. The chart looked more like an abstract artwork than the linear progression I’d been expecting. In the end, I felt about the same as I’d felt before trying all the miracle cures. The only significant change was that I was now spending much of my time coordinating my self-treatment. Just as I had done with my art, I had placed my disability in the hands of strangers on the internet and allowed their judgment to eclipse my own.
The title of “influencer” is misleading. I wield far less influence over my followers than vice versa. To them, I am a fleeting image on a screen, a few words skimmed and forgotten over the course of a day. But to me, my followers are everything. They determine my income, my outlook, and my creative choices. My career does not exist without them.
My followers encounter my writing as an impersonal announcement to the wider world, but their writing is personal and directed exclusively at me. I am a lone target, impossible to miss, a receptacle for the tastes and opinions of a hundred thousand people. I am tasked with digesting this noise to produce entertainment.
These days, I no longer feel caught between two incompatible selves. My disability informs my art and vice versa. But both remain private experiences. Sharing them does not render them shared. Sharing only creates a false sense of collaboration—art as democratic process, self-care as team sport. Like many disabled people, I have used social media to let the world in. The challenge is in determining when and how to shut it out.
August Lamm is an artist and writer from Connecticut. She illustrates for clients around the world in a pen and ink crosshatching style inspired by Old Master etchings. She is currently working on a memoir about her experience as a disabled artist.
When learning about a disability, there is an inevitable search for others who had or have it. Did you know Agatha Christie, William Faulkner, and F. Scott Fitzgerald are said to have had dyslexia? I sought these names in high school and college, when I needed to remind myself that I — like them — could find success in writing despite my learning disability.
When I was diagnosed in the third grade, though, I did not care who else had it. I simply wanted to rid myself of the hot panic that descended whenever teachers called on me to read. Sitting at my plastic desk, my heart would thump, palms sweat, and stomach ache. I attempted to pre-read and memorize the paragraph I would be called to read aloud, but I always tripped on multiple words within the first sentence. How could I read a whole paragraph? Both the teacher and I would become frustrated, and they would feed me words when I paused.
Help did not arrive until the seventh grade. Before then, I had never successfully read a book alone. By definition, dyslexia is a learning disorder that impacts areas of the brain used to process language. Dyslexia presents itself in a plethora of ways; for me, I inverted, added, and dropped words while reading aloud. Decoding (sounding out) and comprehending text proved even more of a challenge. When reading silently, I could retain more — but often even that task stood too steep.
Growing up in the mid-2000s, news was changing. Accessibility to information through YouTube, Facebook, and Twitter coincided with my eagerness to learn despite my disability. I changed my morning alarm to the voices of NPR news anchors and dove into the online archives of CBS’s 60 Minutes. Any ounce of information I could consume without text became my raft in the unsteady waters of a learning disability. At home, while my peers read books like Captain Underpants and Junie B. Jones, I watched stories about the Egyptian Revolution, Wall Street’s meltdown, and cyber security. Had I the privilege to choose at the time, though, I would have read the books.
After long, seven-hour school days in the seventh grade, my mom would drive me to Central Michigan University’s Learning Acceleration Clinic. Jealous of my siblings, who were eating snacks at home, I spent two hours four days a week undergoing intensive psychological intervention with a phycology PhD candidate. After grueling work, she gave me access to the elusive books read by my peers. For the first time, I could choose, comprehend, and retain information from written words. One of the first books I grabbed was titled Impossible Odds: The Kidnapping of Jessica Buchanan. The story had been featured on 60 Minutes. At the time, my enthusiasm for my newfound ability to comprehend text blinded me from noticing how slow I read; a single page took me several minutes to read and comprehend.
Neuroscientist and dyslexia scholar, Guinevere Eden, understands the brain is malleable:
I compensated with strong verbal skills to make-up for my slow and confused reading. While I never received a brain scan, psychological testing proved Professor Eden’s thesis to be true for me.
While my peers read, I developed the ability to communicate and retain information orally. This skill set led me to WCMU and WUOM (Michigan Radio) — NPR member stations — where I wrote and produced audio stories. I continued to feel profoundly self-conscious about my reading, spelling, and grammar, but this clashed with my drive and desire to tell stories. Luckily, I could avoid some of my dyslexia provocations in radio journalism, since audio stories are told at an elementary reading level to help listeners consume complex ideas over the airwaves.
Journalism values creativity, curiosity, and content, and my unique perspectives as a dyslexic individual have led to unexpected storytelling. In one story, I described how climate resilience is being taught in a southeast Michigan high school; I thought it would interesting to insert multiple perspectives on whether people learned about climate change in school, since I know everyone does not learn the same way. In another story I produced about criminal expungement reform, I interviewed a woman who would benefit personally from new legislation. Her voice broke and carried emotion like no book I had ever read could do. I know the value of a raw auditory story, and the interviews I conduced and stories I told would not have succeeded had I not developed skills to listen.
My plan to avoid my disability in newfound workspaces did not come without error, though. Stories cannot be developed only in one’s head; they need to be written, edited, and rewritten — often again and again. Only then could a story be told orally. I continue to struggle, primarily with time, since it still takes me twice as long as my peers to read materials. Punctuation and syntax also present salient challenges.
Like anyone with a disability, I have learned skills to continue to compete with other writers. When a story requires more than a single page of text, I bring my own computer — which contains text-to-speech technology — to the office. I also rely on the Voice Dream app on my iPhone, which can recite any PDF I upload. If I need a book, Bookshare likely has the text and can read it to me aloud. If those options do not work, I use the Read&Write literacy software. Strong editors you can trust — Vince Duffy and Rebecca William at Michigan Radio, my sister Katharine Janes, and mother Dr. Patricia Janes for any freelance pieces — make a world of difference.
Today, if I don’t know how to spell a word, I say it into my iPhone. This method is certainly not foolproof, though. This morning, I did not know how to spell the word corroborate — I kept typing coberate, to no avail. I verbally asked Siri “How do I spell corroborate?” to which she responded, “This is how you spell cooperate.” My alternative route was to Google the word “coberate” which spit back “showing results for corroborate.” Finally.
As Stella Cottrell suggests, and I have experienced, many people with dyslexia get more worn out from a day of reading and writing than non-dyslexic people. It makes sense — our brains are doing a lot more work. When working at Michigan Radio, to build in a break to my day and receive some emotional support, I brought my dog to work. I would leave my desk every few hours to take him out and give my eyes, brain, and emotions rest. There are resources other than dogs for people with dyslexia too — specific fonts, colored overlays, quiet workspaces, graphic organizers, and many books. And while we are our best advocates, sometimes we don’t know about resources, until we do.
I did not have access to text-to-speech technologies until my sophomore year of college at the University of Michigan. It was amazing; for the first time, I did not have to simply read online summaries of a book but could wear headphones and sit with my peers to follow along with the text. Thanks to text-to-speech technology, I could major in English. What’s more, I could become a journalist.
For a long time, I would not tell my peers I was dyslexic. Sitting in the first days of any class in college, when instructors had yet to receive my individualized educational plan (IEP), I still felt like my younger self—afraid to be called to read, questioning if I belonged in this space. These same anxieties arise with a new article pitch or job interview. I internally debate: How long until I share my disability?
As my voice has developed as a writer, so have I as a person with a disability. Dyslexia did not stop authors like Agatha Christie, William Faulkner, or F. Scott Fitzgerarld—it perhaps even contributed to their success. This reminds me that my voice, too, deserves space, and I can use my unique lens to tell my and other’s stories.
Lauren Janes is a freelance writer and audio producer based in Washington D.C. Previously, she worked for the NPR member station Michigan Radio reporting on education, politics, and climate change. Check out more from Lauren at laurenjanes.com. Find her on Twitter at @laurenejanes.
When I was a little girl, I knew I wanted to be a writer. There were always other careers sprinkled in there — surgeon, anthropologist, teacher — but I knew that whatever I did, I wanted writing to be part of my life forever.
But after being diagnosed with bipolar disorder during my freshman year of college, my relationship with writing started to shift. Writing became something I did poorly and prolifically during periods of mania and something I didn’t do at all during depressive episodes, which left a very small window of stability for actually creating things I was proud of.
When I started writing for a living as a freelancer, my relationship with writing changed even more dramatically. Now, writing wasn’t something I did to fulfill myself. It was something I did to feed myself, and that made a huge difference. Much of my time now had to be spent writing pieces that I honestly didn’t care much about. There are so many boring parts of freelance writing — listicles, shopping guides, quick news stories — that don’t make me feel creatively stimulated. There are also important pieces that I would love to spend more time on, but financial needs and the needs of my editors mean that I have to submit quickly, which can feel demoralizing for a creative who wants to spend more time with their work.
But as a bipolar writer, this path has served me well. For the most part. Sometimes, I feel I’ve found the career best suited to my perilous mental health. Other times, I’m aware that I’ve found a career with an entirely different set of stressors and triggers that have and could still send me spiraling into distress or crisis.
Writers and journalists often talk about the toll that this job takes on mental health. And it’s true. Being immersed in horrific new stories, receiving endless rejections, and often working alone from home are almost guaranteed to exacerbate symptoms of depression and anxiety. But for those who experience severe mental illness — including the oft-excluded obsessive-compulsive disorder, major unipolar depression, borderline personality disorder, and antisocial personality disorder — the ups and downs of freelance life can be more extreme, perhaps even life-threatening. At the same time, this lifestyle has the potential to offer people like me multiple avenues for autonomy and flexibility, two things that are necessary for severely mentally ill people.
For me, freelancing gives me the ability to honor my depressive and manic episodes when they come. I can acknowledge when I can’t “fight” off what my brain chemistry is determined to do, leaving more room for me to actually get better. I don’t have to come and sit at a desk every day. I can take off as much time as I need, and I can even cancel in-progress articles with little to no consequences. But this flexibility requires money, something which is hard for many freelancers to come by in an industry known for paying abysmally low rates, often extremely late.
After a suicide attempt in November of last year, I was fortunate enough — due to years of splitting rent with a partner or then not paying rent at all— to have enough money to take three months off work. I don’t know how I would have survived those months had I needed to work.
However, I also worked intensely in the months leading up to the suicide attempt, which brought in a great deal of money (sometimes $10,000 a month) which made me feel burnt out and depressed, especially when I’d write about heartbreaking stories or the anxiety-inducing fascism enveloping the country. I need the freedom to be able to take off work when I need to, but that freedom doesn’t come without its own sacrifices. This is why I firmly believe that all freelancers — but especially severely mentally ill writers — should work as hard as they can to get as much money for their work as possible. Always ask editors for more money, and set firm rates if you can. That extra $100 here and there can be critical for your mental health in times of crisis, especially if you’re able to have an emergency fund.
Even though freelance writing may suit severely mentally ill people much better than staff writing jobs or other traditional careers, I often resent it, because I feel a bit forced into it. Staff writing jobs often don’t pay as well as I could make freelancing — especially having gotten two book deals during my three-year long career — and they’re often inaccessible to disabled people. For a lot of us, freelancing is not so much a choice as it is a requirement in a deeply ableist, classist, and racist society.
Freelancing also doesn’t provide you with healthcare, something that every human needs, but especially those with mental health conditions. I dread turning 26 next year, because the expense of healthcare will be astronomical, I expect. I still haven’t figured out what I’m going to do. All I know is I can’t survive without the anti-epileptics and anti-anxiety medications that help me manage the worst of my symptoms.
And then there is also the discrimination that comes along with being an openly severely mentally ill person in media. Mental health de-stigmatization has done wonders for mild to moderate depression and anxiety, but disorders like schizophrenia, borderline personality disorder, antisocial personality disorder, and bipolar disorder are still on the margins — or completely outside — of what society finds acceptable. For example, a writer with antisocial disorder recently penned a Modern Love column for the New York Times, about how her condition impacted her marriage. She was widely and thoroughly mocked by so many people on social media, quite a few of them people who have been open about their own mental health struggles.
As for me, bipolar disorder is less stigmatized than antisocial personality disorder or schizophrenia, but I still get taunting messages from strangers in my DMs, trying to pour salt in the wounds I carry from a lifetime of dealing with mental health issues, and seven years of dealing with bipolar disorder.
Overall, I think this is the right career for me. I feel a degree of freedom that I didn’t have when I worked at a non-profit or when I worked as a waitress. I get to explore my creative passions and make money. I have the opportunity to write books about mental health. But I also deal with intense periods of loneliness because I don’t have traditional co-workers. I get anxiety sometimes because I don’t have a stable income; invoices come in scattered and sometimes extremely late. I feel an immense amount of pressure when I write about my mental health issues, and expose my vulnerabilities for the public eye.
Nylah Burton is a writer with bylines in New York Magazine, British Vogue, and ESSENCE. You can follow her on Instagram and Twitter.