I’ve been fortunate to have my work published on my fair share of websites. A few of them focused on my midlife journey, yet the bulk were health-related. The reason is simple: I’ve lived with Multiple Sclerosis for more than half of my life and that’s where my expertise lies.
I offer hope and inspiration to those living with a chronic illness to help them understand that they, too, can live a joyful and passionate life.
But I never want to be defined as a disabled woman. I want to be thought of as a woman who happens to have a disability. I’ll go one step further. I’d rather people see me as a resilient, intelligent, joyful, compassionate, kind, curious seeker-of-truth who happens to have a few misaligned lesions but continues to live a life of passion and purpose within her abilities.
When I began to blog in 2011 I had no intention of writing only about Multiple Sclerosis. Don’t get me wrong. I love the MS community and I dedicate my life toward helping that community. Ability despite disability. That’s my mantra.
But I’m multidimensional; there’s so much more to me than my disease.
Sometimes I don’t think people see the whole picture of who I am and what I have to offer. Maybe it’s because I’m a quiet person with a soft speaking voice. Or maybe it’s because I smile a lot whether or not I’m feeling well.
So if the loudest voice in the room seems to win then I better step up my game.
Lately I’ve been feeling the sting of rejection. Oh, sure, everyone gets rejected once in awhile, and writers must learn that rejection is part of the game. We’re not everyone’s flavor and when we’re not we pick up the pieces and move on.
But I’m talking about a different kind of rejection. Because when you write about disability or disease you’re always teetering on the precipice of having people wince at what you’re talking about or being sincerely interested in what you have to say.
We cannot publish your piece at this time. We are not interested in this subject. We are not planning on having speakers for your subject at this time. Perhaps you might find another publication, another event, another website that is more suitable for your story.
Disability is not a sexy subject. You’re not giving advice on fashion after 50, makeup tips on creating a youthful look or what to do after the kids leave the nest. You’re different and the audience knows it. And while all of these subjects are popular and add value to those in midlife they are not the complete picture of what we should be talking about.
Let’s talk facts:
According to data from the April 2014 Census Bureau there are 7.6 million baby boomers in the United States, people like me who were born between 1949 and 1964. In addition, according to the U.S. Census Bureau Survey of Income and Program Participation of 1992, an estimated 48.9 million people have a severe disability and 34.2 million have a functional limitation.
So I wonder what exactly is more suitable than talking about disability, ability and aging to a growing population that’s either disabled or aging or both? I’m asking you because I’d really like to know. Please educate me.
Talking about what it’s like to live with Multiple Sclerosis, and all the issues that follow it - diet, exercise, health insurance, support systems, financial aid, medications, medical support, a sense of community and complementary medicine - are all issues that are applicable to every disease and to the general population.
Take the word Multiple Sclerosis out of the last sentence and replace it with cancer, arthritis, heart disease or aging and every subject from diet through complementary medicine is necessary when discussing a wellness plan.
We can’t escape aging or illness. So let’s face up to it.
So please, again, tell me why disability isn’t sexy enough to matter?
I’ll tell you what I think. I think disability is largely misunderstood, and when people don’t understand something they shy away from it.
The bottom line is disability doesn’t sell copy. It doesn’t gather large audiences. It doesn’t get media attention and only garners the kind of sympathy we don’t want or need. Other than at health-related events, event planners shy away from speakers discussing disability.
But here’s what I can’t figure out. If this is all true then why are the most popular posts I’ve written for my blog and The Huffington Post about MS? One of my posts received 2.6K views in 3 days! Someone, somewhere, somehow is very interested in what I have to say about our MS community.
So what’s going on? Is disability sexy? I can only deduce the following:
I’ve seen great changes in the past 30 years, since my diagnosis, for the disability community such as The Americans with Disabilities Act, The Fair Housing Act, Air Carrier Access Act, The Voting Accessibility for the Elderly and Handicapped Act and the Individuals with Disabilities Education Act, to name a few.
I want to continue changing the stigma attached to disability. I want to crash through that imagined glass ceiling, smashing it into smithereens, the same ceiling that others began to break through. I want to add my unique voice to the conversation so I can fly high above the shattered pieces of glass. I don’t want to stand on the sidelines anymore. I want to be put into the game.
Just watch me.
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I love this post! I write about my experiences living with hearing loss and face similar challenges in getting my content placed and promoted. With 50 million Americans suffering from hearing loss, you would think this would also be a topic of interest. Good luck in keeping your voice and message out there! It is so important and I am glad to see you remain steadfast in your goal!
Cathy, you offer inspiration, education and a voice to those who need it. You are a light, a beacon of hope, so keep on doing what you are doing. It matters.
Cathy -- all I can say is, "Exactly!" There are SO many people who either have a health issue that they have to manage, or a spouse, child or friend who does . . . it's part of life. So saying that they don't want an article about managing MS -- or cancer -- or fill in the blank -- it's like saying that LIFE isn't sexy enough to write about. Screw them! I love reading your articles!
Ann
So much truth to this, Cathy! I think you've completely grasped what is going on (i.e., what sells copy is more likely to be accepted) but as you can tell by the viewership stats, what people NEED is the part that comes from your most candid place. I know it doesn't necessarily put food on the table or create understanding overnight, but I truly believe that if you continue writing what you are most passionate about, and what you are most resourceful for, good will come!
If anyone can crack that ceiling, you can!!
I LOVE the way you approached this subject...it made me think of the famous line from Dirty Dancing: "No one puts Baby in the corner!" And it's true...we must take ourselves out of the corner and create our own game!
I have a friend who has MS and her approach to dealing with it helped me immensely when I was dealing with Lyme disease.
First, I see you exactly as you wish to be seen--those words in your post so resonated with me! I never see you in only the disabled category. In fact, not even primarily in that category. You are a vibrant soul, that is soo evident. As a writer whose been around a very long time & had her own share of rejections, I would just say this: not every topic is going to be a fit for a particular publication. And there are many readers who go to certain sites for entertainment, not information. i wouldn't take any of this personally. Disability writing is a niche like any other, and you just have to find the right home for your piece. I am often in this position with some of the darker things I write that are just not for everyone, even if they are well done. Blessings, girl!
This is one of the most powerful posts you've ever written, Cath. Say it, woman! I hope your words inspire the powers that be to take a second look next time you pitch them. You ARE so much more than your disability! You have so much to offer and your writing is so honest and heartfelt! xoxo
Brava! I think the rejection note you received was from someone that may not have experience much difficulty in life. As we age, it becomes more than our disabilities, pain, and difficulties. It becomes everyone's reality. Keep going Cathy - there are thousands if not more, who need to understand, identify, and empathize. I am one who loves reading about MS, being over 50, making positive changes in the world, finding joy in our circumstances, and basically anything you write about.
I never see you as disabled; you are one of the most "able" women I know. And good for you-shatter that glass ceiling and stay in the game that you've already mastered. Your words matter and they'll continue to matter, despite the latest trend or hot topic. Keep at it!!
You go girl! I am very proud of you and the fact that you don't let your disability slow you down. I quit writing about RA because I just wasn't getting the page views to sustain it. I know you will bust through that ceiling and I can't wait to witness it. I'll be on the sidelines cheering loudly!
Our society doesn't really see disabilities as positives - they are always looking for the pretty and the perfect - and in doing so they overlook so much potential. Keep speaking out Cathy (even with your quiet voice) because the more you speak up, the more you are seen and the more the world will start taking notice of what all of us who are less than perfect have to offer 🙂
I love opening up your blog and seeing your beautiful photos. And I love this piece. I could feel your determination coursing through every word. I could relate, although it may seem in a strange way at first. As I first started to enter out in the blogging/writing world, people always ask you what your blog is about. And I would answer truthfully, death, child loss, life after child loss. Yeah, I was sort of the odd woman out! Child loss isn't one of the fun and sexy topics either and it can bring some awkward moments.
You have helped me so much to be comfortable in my new skin and to be bold, and you have taught me to be kind. You embody courage to me.
I love your unique in the conversation and it is an honor to be watching you!
Wishing you much peace and sunshine today,
Love, Terri
Yes, I completely get it. I face the same issues with migraine. Yet my chronic pain post on migraine (which wasn't even featured) had over 1,500 FB shares on HuffPo. We just have to keep on keeping on. By the way, I think your Baby Boomer numbers are way low? I think it's around 79 million. Love you!
Hi Cathy! Add me to your list of fans who do not see you only as a person with a health challenge--as you say, you are SO-O-O much more than that. I tend to believe that many of the people who are running organizations or magazines, or even conferences are of a younger generation and unfamiliar with what some of the challenges of life can be. If they can't relate they find little or no reason to publish it. But I do believe that is changing. YOU are helping it to change. Every one of us bloggers who write about some of the issues we face as we age, who are dealing with illness or challenge of any type, are helping to change the blogosphere. Don't discount that and try not to let it discourage you! You have something important to share and if just ONE person finds it and reads it you have done something amazing! You ARE in the game. ~Kathy
I've always believed that your audience will find you. Keep doing what you're doing and be true to your authentic self. The people who rejected you are not your people.Your people are out there as you could see from your page views. Keep doing what you are doing and opportunity will arrive.
Your words are very empowering. Without a doubt, you'll shatter that glass ceiling.
Great post, Cathy. The more you tell it like it is and live the life you are living the more people you will inspire and lift up. There's no excuse for insensitive ignorance. Maybe you could send out a list of stats in a thank you note. Facts beat stupid!
b
Cathy, I think there's s cycle to everything and I agree, disability isn't seen as the cool thing sometimes, but for those you inform, inspire, and give part of yourself to bring hope, it's amazing. Keep doing what you do, those who need you will find you.
What an empowered voice. You inspire me. Go for it Cathy!
What rules? There are no rules! You rock it, Cathy. I don't use the disability when talking about my health issues, I use the word "challenge". And it is a challenge! Pay no attention to rules, just get out there and do it. Hugs and smoochies to you.
Cathy, I never think of you as having a disability. You are one of the strongest, most able people I know! You continue to inspire, and your words and actions mean so much to so many. Don't let anyone stop you from reaching your goals. Your voice is important.
Cathy - several thoughts. When I first started reading you, I didn't know you had MS. You must have just written something profound and relatable that I connected to. The topics surrounding MS are relevant to all of us in midlife - if not now, soon. You are doing important work and your inspire many of us - both and out of the "MS/DIsability" community. Keep it up. You make some very good points.
For some reason I was thinking baby boomers numbered more than 7.6 million. Good to get my facts straight. And for what it's worth, I "knew" you months before I put it together that you had MS. I feel sorry for the people who reject your work. Their loss
I wish you continued success with your writing and advocating for MS! Your voice is the hope for many of us who have a loved one, a favorite sibling or cousin or Aunt impacted by this disease and want to learn and support and your blog helps.
Good for you Cathy! There is too much hiding away of things we don't know or understand. Aging is a fact of life and unfortunately, disability is also. We can't ignore them. I think it is great that you are getting the message out there so people can be helped or more informed. Have a lovely day!
When I was recently diagnosed with Menieres, the first place I turned to was the internet, both for medical information and, just as important, to find the empowered positive voices of people who were thriving with Menieres and could give me hope that I, too, could thrive. There is NOTHING more important than what you're doing, not just for people with MS but for anybody who is coping with an illness and needs to feel empowered rather than overwhelmed.
Cathy, you are one of the most engaging writers I know. Your thoughts resonate with the parts of me that are challenged and those that are whole. I don't see you as a writer only for the community that has ms or other disabilities. Your topics are universal.
Keep on doing exactly what you are doing.
That being said, some editors (right or wrong) may read a pitch of yours and view it as a niche topic. That's their problem.
Having a niche topic is what makes you unique and may more acceptance letters coming your way soon again.
Hell yeah....I agree. It's important. I needed this post today. Thank you. People forget before the challenges came we all were the same...what's changed? We are still here...just abit more wobbly, need to sit etc. I agree, those of us who are challenged are wiser and deserve the sexy stance or voice more...Pride is a messed up monster. High five sister!
Thanks for this post that says it all, Cathy. Your voice speaks to and for all of us.
I think as Americans we love to buy our heads in the sand and pretend that we won't get old or sick. I think that editors are wrong in believing that ALL americans over 50 share that sentiment.