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 2012 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:
- There must be some interest in what we have to say about living with adversity.
- There must be some interest in what it’s like for someone to live with a disability.
- Communication is the answer for a clearer understanding about disability.
- Aging and disability are two subjects that need to be openly discussed.
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.