Why I Started The Disabled Ginger and How Writing Saved my Life

A look at how writing helped me accept and process my disabilities, find my voice and learn to be an advocate.

For those who are new here - I’m a writer. It’s what I always wanted to be. As soon as I was old enough to read I began to write. I eventually turned it into a career in journalism. Writing has been one of the great pleasures and joys of my life and it has saved me from some of my darkest moments. When I became severely disabled - it helped me find my purpose again.

The fire that grows within me whenever I sit down to write is why I started The Disabled Ginger. It’s why I became a disability advocate. It’s how I remember that I’m a brave, strong person who’s full of gumption and redheaded stubbornness - and I can use those traits to help others.

I’ve always found writing to be an excellent way to process the world. Whether it be a diary, journal, letters to penpals or professional articles - when something bad would happen I found solace in writing about it. 

My heroes growing up were almost all writers or literary heroines - strong women with sass who bucked societal norms and refused to take crap from anyone. Refused to be told how to think, what to feel, who to love or what to do. They inspired me. 

I’ve done all kinds of writing - content copywriting, technical writing, SEO, theatre and book reviews, dating columns and now - disability advocacy. I’ve loved every minute of it - and continued writing privately whenever I faced grief or trying circumstances.

When I became too disabled to work - my mental health took a turn. I was lonely and felt I lacked a purpose in life. I missed writing - but I didn’t see how to continue as I didn’t think anyone would want to hear about my illnesses.

Then the pandemic hit and I realized we would be seeing an influx of disabled people. Covid was ripping through populations leaving a trail of devastating chronic illness behind it. Watching people lose their health and not know how to adapt to their new reality, how to work within the healthcare system, how to find an advocate and support system was incredibly challenging for me.

Photo by RetroSupply on Unsplash

Image Description: A teal coloured typewriter sits on a wood table with a pair of glasses, a pinecone, a green notebook, a blank notebook around it.

Finding My Voice Again

I finally saw a way to help. Having been chronically ill for decades - and on the severe end of the spectrum for approximately six years - I could share my stories and struggles in the hopes it would help those who were newly disabled. I could help educate them on the pitfalls that I encountered and help them have an easier transition into the world of chronic illness.

Thankfully most people in my life know that I’m a writer and supported my decision to begin writing more personal stories about what I’ve gone through. It’s never been something I’ve hidden from those closest to me. While I’m grateful that most people have been encouraging - there has also been some intense blowback.

I’ve lost more friends, I’ve alienated people who I thought cared about me. Being disabled - especially during a pandemic - is an isolating experience. It’s lonely and can be quite sad. Losing even more people because I decided to use my voice for good has been a tough pill to swallow. So why do I still do it? When it’s coming at a great personal cost?

I do it because words are my friends and writing about my experiences keeps me grounded to the outside world. It allows me to take back some power when bad things happen to me. Makes me feel as though I’m taking my hardest moments and turning them into something positive.

If my stories help even one person - then it was worth all the time, effort and potential negative feedback I receive. I’ve learned many things the hard way - especially where health issues are concerned. If I can make those experiences easier for people - that is what I want to spend my time doing.

I also want to challenge others to think differently about the world and those who aren’t like them. By being vulnerable about my worst experiences - my hope is that people read them and come away with a different perspective. A kinder, gentler way of looking at things.

When I Get Loud - They Get Angry

While my desire is to foster a kinder, gentler world that’s more accepting of disabled people - I’ve found that I receive more hate and vitriol the louder I get. Before becoming disabled - when I wrote some incredibly high profile pieces on other subjects - I never received this amount of pushback. Topics such as disability, chronic illness, privilege, womens and LGBTQ+ rights seem to make people irrationally angry.

On my more difficult days - I often find myself musing about WHY people are so angry when we advocate for these subjects. I can only assume the anger is an attempt to silence people like me….because the things I want changed benefit the less privileged. They upset the status quo and there are many people out there who want the status quo to remain unchanged.

Unfortunately the status quo isn’t working for the majority of the population and is dangerous for many of the most vulnerable among us. The ableism, racism, inequitable distribution of wealth and patriarchal nature of our society are only benefiting a privileged few while everyone else suffers.

So when I’m tempted to stop writing - I remember those literary heroines with gumption. They would never consider being silenced by angry voices who disliked the fact that they told the truth about the unfair nature of the world. 

For my Canadian readers - can you imagine Anne of Green Gables sitting quietly by while men teased her for her hair colour, intelligence and ambition? Of course not - she smashed a slate over someone’s head. 

Obviously I don’t condone violence - but words and language are my slate. I can’t sit quietly by while people are suffering. Not if my words might help someone. None of us should feel forced into silence - we should all share our stories to help lift each other up and ensure people feel less alone. 

Finally - if I had an easier life I wouldn’t have so many stories. That’s at the heart of the matter. I’m more privileged than many and I am grateful for all the good that is in my life… but I’ve also experienced tremendous suffering, violence, grief and loss. 

In many ways I would prefer to have had an easier existence where I didn’t have so many heartbreaking stories. But that’s not my reality. I suspect it’s not the reality of a great many disabled and marginalized people. 

In truth I’ve only shared a small percentage of the things that have happened to me - mainly because I’m still building my courage. I’m still finding my voice and embracing my gumption. It takes time and there have been setbacks. I’ve spent many nights tempted to walk away and give up.

That’s why I created The Disabled Ginger. I want this to be a safe place where people can come learn about the disabled experience - but also feel empowered to share stories of their own. I want them to get to know me, find community and feel a bit less alone.

Some things you can expect if you subscribe:

• Weekly articles (health permitting) about the experience of being disabled during a pandemic. These can and will include stories about how to safely access healthcare, how to deal with challenging family members, how to find an advocate, how to become an advocate yourself and much more.

• Infrequent news articles when there’s something that’s of particular importance to disabled people. For example I’ve written extensively on the North Carolina and Nassau County mask bans, as well as the World Health Organization’s decision to upgrade their indoor air quality while telling the world it was safe to go back to work/school.

• Spoons permitting (let’s be honest - when we’re chronically ill our energy levels can be wildly unpredictable) I hope to be able to do bonus articles on things that have helped me manage my conditions. Dietary and lifestyle changes, meditation, recipes to lower inflammation, minimalistic living… the list is endless! None of the things I’ve done have been a ‘cure’… but I believe every small step you take to improve your health and wellness is of vital importance when you’re chronically ill.

• Covid information. Let’s face it - the pandemic is far from over despite what governments and public health might be telling us. I want this to be a place where people can be empowered to learn how to better protect themselves and their families. You can expect to learn about masks, clean air, ventilation and more - as well as tips and tricks for coping with Long Covid. Want to learn more? You can start with this piece:

  How to Stay Covid Safe When in Hospital

• Compassion, kindness and support. A non-judgemental place to ask questions. Encouragement to help YOU find YOUR passion. Writing won’t be the answer for everyone - but I’m committed to helping people find the thing that can save their life. The thing that makes your heart sing, gives you a reason to get out of bed and comforts you in your darkest hours.

• A community. I genuinely want people to feel at home. Those who already follow me on social media platforms like Twitter/X know that I love writing threads about my experiences - and that I try to engage and respond to everyone who comments. I want people to feel safe asking tough questions, sharing stories and requesting help and support. I will encourage everyone to find their inner gumption and embrace their sass and strength - because we are ALL incredibly strong. Living with chronic illness is challenging - doing it during a global pandemic that the majority of the world have chosen to ignore? Makes you a warrior.

Get cozy, put your feet up (I do all my writing horizontal to accommodate my POTS) and make yourself at home. Introduce yourself on this post - I will keep the thread open and revisit it regularly to welcome people and respond to any questions or comments. I’m so very happy you’re here.

If you know me from another social media site and you want to drop your handle - I promise I will remember who you are! Every single person who’s supported my writing over the last year was an integral part of me launching this site - and you all have my heartfelt thanks.

If it wasn’t for people reading, sharing and commenting - sending me messages explaining how my writing helped them - I probably would have quit a long time ago. You make doing this worthwhile - never ever forget that.

Let’s all find our inner gumption together and tell our stories - the good, the bad and the heartbreaking. We should not and can not be silenced… and if we keep speaking out in unison we just might change the world.

Please leave a comment to introduce yourself! Say hi, ask questions and get support from other people struggling with chronic illness. You’re also welcome to leave your social media handle(s) below as well … I look forward to getting to know everyone.