Ableism in the writing community #AuthorToolboxBlogHop

Not many people in the writing community know this story, so deep breath and here goes. Twenty years ago, I was diagnosed with Graves’ disease. At the time, my GP and endocrinologist ignored the full-body rash I had. I’ve told every doctor I’ve had since that I’ve never felt right since the radioactive “cure” I was made to literally swallow. The last two and a half years of my life have been a kind of painful hell that doctors, physiotherapists, osteopaths, and chiropractors couldn’t figure out. I then learned that Graves’ is often a misdiagnosis for Lyme disease. Remember that rash that went ignored? I don’t have any pictures of it, but that’s okay, because all I have to do is Google “Lyme full body rash,” and plenty of photos of what I had come up. I’m told I’m being worked up for a chronic Lyme diagnosis, and I’m finally getting treatment as a result, but my path out of pain is non-linear and uncertain. Now you have context for why I wrote this non-exhaustive list of writing advice that has a ring of ableism to it:

  1. “Write everyday,” goes the flawed adage. With antibiotics, I average seven days a month where I can’t feel all my muscle dysfunction creeping back in. I have to be careful not to further injure myself, so, no, I cannot write everyday, and it makes me feel less than every time I read “write everyday” advice that doesn’t make allowance for people with disabilities, visible and invisible.
  2. “Write wherever you can.” A keynote at a writing conference I went to some years ago said this, and now it pings around in my head everyday. I’m still mourning the ability to to cozy up with my laptop in any old place. Fact is, I can’t allow myself imperfect posture anymore, because if I write wherever I can, I pay for it pain-wise in the days that follow.
  3. “Read everyday.” I have these masses of muscle in my shoulders that haven’t released in about two years. Holding books, print or e-, can land me in muscle spasm territory, so, no, I cannot read everyday right now, even with the device I half-found, half-built to hold books, print or e-. Every time I come across this advice, it makes me feel like I’m a slow reader and worse, that I can’t be a writer anymore.
  4. “Use voice programs.” This is great advice, and everyone is giving it to me. I’m not an audial learner or writer, though, so the transition doesn’t feel as easy as my advice-givers make it sound, and while I’m sure advice-givers just want me to once again have the enjoyment of being able to write everyday, I feel like there’s something wrong with me for not being ready to adapt to my disability.
  5. The ever popular, “Don’t use a thesaurus,” piece of advice is an ableist derivation of Mark Twain’s quote about never using a five-dollar word when a fifty cent one will do. When I was in my late teens, people could ask me what a word meant, and I would cite three synonyms. Most of my adulthood, however, I’ve had problems recalling a lot of words. So, yes, I absolutely always have multiple thesauri at hand whenever I’m composing anything, because even though I can’t recall some words, I can recall others and use those to find the ones just beyond the fog.

The title of this post, Ableism in the writing community, is superimposed over five spoons to represent the spoonies or spoonie metaphor.This post is part of the #AuthorToolboxBlogHop. So many great blogs to keep hopping through. Click here to join the hop and to see what other writing tips you can glean from this month’s edition.

Can you think of other examples of writing advice that might be ableist? Off the top of your head, what is one thing the publishing industry could do to be more inclusive of people with physical or sensory disabilities as well as people with chronic illness and those who are neurodivergent?

Additional Resource:
I learned a lot from New Zealand-based writer Elizabeth Heritage’s article about ableism in the literary community.

The image used in my graphic is by Matthias Böckel from Pixabay.

53 thoughts on “Ableism in the writing community #AuthorToolboxBlogHop

  1. I can only image how difficult this must be for you Raimey – and hope you are finally on the right path to recovery. I did my best to help a blind author publish his book, and was shocked to realise that even with the best screen reading technology, most blogs and social media were inaccessible to him due to the layout. I must say that despite these terrible problems you are an inspiration to us all. keep strong.

    Liked by 1 person

    1. Thanks, Tony. That’s my understanding of websites, too. I haven’t done enough to try to make my site accessible, that’s for sure. It’s a priority for when I get better or when a couple of things come off my plate, whichever gets first.

      Like

  2. Wow. I understand some of your pain. I actually have Grave’s Disease which went undiagnosed for over a year despite my telling the doctors something was wrong. I literally had a goiter the size of a softball (I have the stretch marks to prove it). Being misdiagnosed (I was told to see a psychiatrist because there was obviously nothing wrong with me) is terrible. I seriously feel your pain. I sincerely hope the correct diagnosis will lead to the proper treatment and alleviate your suffering. Good luck.

    Liked by 1 person

    1. Before my Graves’ diagnosis, whether or not it was accurate or the full story, I was told there was nothing wrong with me as well. I was down to 92 pounds, had a full body rash, my hair was falling out, and my heart wouldn’t stop racing, for starters.

      Liked by 1 person

  3. So sorry for what you have endured. I’m glad that you are finally getting diagnosed and treated for the right illness. My husband was chronically ill and this totally limited what he could do. I always let him just rest when he needed to, and it sounds like you need to write when you can and have the focus be on taking care of your health.

    And I love a thesaurus too!

    Liked by 1 person

  4. This is an amazing share! I’m so glad you wrote all of this — it feels as if so many of the points you made are just down right bad pieces of advice to give anyone! Artists — and I believe writers are artists — create differently and what should be encourage is finding your way. However that may be. I’ve always hated the “read a lot” mantra as if that had anything to do with being a writer. I’m sorry. I always equate things to being a dancer (that’s what I will always truly cop too) – but I didn’t need to learn all aspects of how to play an instrument in order to understand music and therefor be able to dance to it. No, dancing is it’s own specialty. I love music, I love to read, but neither of those make me a better dancer or writer. Thank you for this post. I will continue to keep you in my thoughts today and hope you’re feeling better.

    Liked by 1 person

  5. I am so happy the medical experts finally believed something else was the underlying cause. One of my good friends went through something similar with her young daughter and they found she had two strains of Lyme disease. It was a long road of antibiotics and other medications to stop the nervous system issues. You will definitely be in my thoughts and prayers and my only advice i have since I have my own health struggles, is to pay attention to your body and write when it feels good.

    Liked by 1 person

    1. Wow. I still have the nervous system issues. I’m hoping I’ll get off antibiotics someday. Happy to hear your friend’s daughter was able to stop the nervous system issues with antibiotics. Thank you for the excellent advice.

      Liked by 1 person

  6. Sorry to hear about the pain you have. People love to throw out advice, but you have to do what works for you and your needs. I hope your health continues to improve now that you’re getting the right treatment. Thanks for sharing!

    Liked by 1 person

  7. Sorry you’ve endured so much pain and I hope the treatment helps you! I agree with the post. Those write everyday, read everyday especially are annoying. I’m not a person that journals and I’m typically a mood writer so that wouldn’t work for me. Not to mention my scoliosis and carpal tunnel. People dole out that “advise” with such a dismissive attitude. Everyone doesn’t function the same and to make those claims and follow it up with “if you’re a real writer” is infuriating!
    Take care.

    Liked by 1 person

    1. You’ve got me thinking about how even within the community of people with visible and invisible disabilities, it’s not like there’s a one-size-fits-all how-to-be-a-disabled-writer list of rules.

      Like

  8. This is wonderful. (But I’m so sorry to hear you were misdiagnosed. That is incredibly frustrating, and I hope that they’re able to work out a treatment regimen that makes life more comfortable for you.) As someone who doesn’t have any physical ailments at the moment, I still completely agree with you about how ludicrous some of these adages are. (And don’t worry, you’re not alone in skipping things on the list.)

    The writing advice that has always made me the most frustrated is “write what you know.” But Ursula K. Le Guin has a great counter-quote, so that’s comforting. 😛

    Liked by 1 person

  9. Great post, Raimey, and I appreciate the reality check. I can’t come up with any other ableisms right now, but the one thing the publishing industry can and should do is hire people who have been through or are experiencing the challenges you described, and be more open and supportive to those facing obstacles and challenges to working part-time, or from home, or job sharing. Ideas can come from anyone, anywhere, at any time.

    Liked by 1 person

  10. This was an eye-opening post for me Raimey. I’ve never actually thought about having to write with a disability. I’m glad you’ve not let it stop you though, even though the frequency of writing is less than what you would like. Just keep writing and inspiring us all!

    Liked by 1 person

  11. Thank you for sharing this, Raimey. As a chronic pain sufferer, I can empathize completely and have thought more than once about throwing in the towel on writing. Where, how, and how much you write has to be modified to fit your condition.

    Liked by 1 person

  12. I must admit I never considered those who are writers but need to make adjustments in order to get their the story from their heart down on paper or screen. I complain when my tailbone hurts from sitting at the desk too long. I admire your courage and determination to write. You have widened my horizons with this post. Thank you for sharing. BTW–I definitely use the thesaurus AND I love the Emotional Thesaurus to help me get more ideas. Praying for the medical staff to find relief for you.

    Liked by 1 person

  13. Thank you so much for sharing. I am so sorry it took so long for you to get properly diagnosed. Lyme is one of the hardest things to diagnose and even harder to live with.

    I use a thesaurus. I don’t write every day (I try to do some form of it though, normally by typing something in the “notes” app on my phone, I do write whenever I can, but not wherever I am, and I do try to ready every day only because I love to read.

    Anyway, I hope you get the treatment you need and deserve!

    Liked by 1 person

  14. Don’t use a thesaurus? That is the dumbest advice! Even writing YA and Middle, I always see if there are better synonyms. And now, hopefully you will get the treatment you really need to have a more normal outcome.

    Like

  15. It’s amazing how hard writing can be on a body physically–something I never considered in my younger years. But sitting at a desk and typing on a keyboard and/or writing by hand can cause all sorts of strain on muscles we use pretty much all day long. I’m sorry that such strain is doubly challenging for you right now. I have a writer friend who has struggled with Lyme Disease for the past several years. It’s a beast. She’s just recently started feeling much better after a long road of treatments. (Get in touch if you’d like me to connect you with her; I’m sure all Lyme manifestations vary, but there’s a possibility some of her treatments might provide some relief.)

    Liked by 1 person

  16. Raimey,
    Thank you for sharing your story. The pain you’re dealing with sounds really overwhelming, and the advice you cite sure doesn’t help. Writing is a hugely individual endeavor, and the approaches that work for different people are always going to be different. I appreciate how you identify that these pieces of advice that are meant perhaps to inspire can actually end up having a shaming effect. As a teacher, this is something I need to be more conscious about–how to help people do what they can without creating an environment where they feel bad when something doesn’t work for them.
    Thinking of you, and wishing you well, and thank you for all you’re doing for the writing community.
    Jimmy

    Liked by 1 person

  17. I love your honesty here. It must be so tough to keep on doing what you love when you’re faced with such challenges! The inspiring thing is that you keep on doing it. That’s all we can do at the end of the day! I hope this nasty illness is defeated soon!

    Liked by 1 person

  18. Hi Raimey – I didn’t take part in the hop this month because I’m in the middle of relocating to Turkey, but wanted to comment. The one thing authors can do when formatting their books is taking the time to add Alt Descriptions to their images so that it makes their books accessible to the partially sighted and blind people, and they can know what the image based on the Alt Tag description and not the image itself. This goes for images on websites too.

    Liked by 1 person

    1. This is something I think a lot about lately. I know so very little and know my site isn’t as accessible as it could be, and I keep making plans to do something about it when I’m better. This is the reminder that I needed. I hope you blog about this at some point. Would love to learn more from you.

      Like

  19. Hear you loud and clear, Raimey. Having had leukaemia in 2002/2003, anxiety issues, Ross River, hamstring & knee injury – and rotten tonsils for over 50 years that were finally taken out 2 days ago, I fully understand that, some days, the writing just isn’t going to happen.

    Makes you appreciate the days that do happen though. Do your best when you can.

    Liked by 1 person

  20. From a different viewpoint of abelism, one of the things that bothers me is the ‘don’t use adverbs/adjectives’ advice. After 25 years of working with neurodivergent youth and adults, and 40+ years of living with family members with ASD diagnoses, I know that a reasonable use of both can help with reading comprehension and enjoyment for people who don’t recognize body language/facial expression or who don’t infer meaning. I’m not saying go overboard, but don’t remove them altogether.

    Liked by 1 person

  21. Excellent post, as always, Raimey. This open dialogue is sadly missing in our business (and culture) as any show of illness is perceived as weakness. All the advice in your article is something that doesn’t work for me either, and yet people who don’t suffer from chronic illness just don’t get it (especially if there aren’t physical symptoms that they can see and understand).
    Personally, I need to take time off from being online every couple of weeks and by the time that I can start replying to comments and visit back, some people have turned off commenting on their blogs (which feels like being shunned) or just ignore me henceforth because they believe that my (scheduled) posts means that I’ve ignored them first. Sigh. So I guess something else that is bad, ableist advice is “reply to comments/emails within three days of receiving it”. Not sure where I read that one, but it makes me feel inadequate when I cannot comply.

    Ronel catching up for August Author Toolbox day DIY Booktrailers

    Liked by 1 person

  22. YES. All the Yes’s and support for your words and determination to continue writing and reading on your own terms. I, too, hate this advice. I still remember reading a Writer’s Digest article some years back about making time to write. With three kids at home, I was hoping for some advice on time management; instead, I got suggestions like, “Use your coffee dates as time to write. Your friends can see you later!”

    WHO THE HELL HAS TIME FOR COFFEE DATES
    I even wrote to Writer’s Digest asking for them to pleeeeeeeeeeease interview an author who was also a parent. So much of the writing advice out there seems to be for people who don’t have to care for anyone under the age of 12.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s