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Illinois-based journalist Melissa Blake has battled with chronic illness her entire life. Before age 16, she had 26 separate surgeries to correct a rare genetic bone and muscular disorder called Freeman-Sheldon Syndrome in which the hands, face and feet are distorted. The condition has left her with deformities that make it impossible for her to walk more than short distances without a wheelchair.
Her parents brought her up with a focus on positivity and inner strength, so bullying did not play a large part in Blake’s life until recently. At the end of last year, however, an anti-Trump article she wrote for CNN went viral, and she was attacked for the way she looked. What did a woman deemed “too ugly” to be online by her attackers do in response? Post some selfies to commemorate the occasion, of course!
Blake has had bylines in the New York Times, Good Housekeeping, Cosmopolitan, Elle, Glamour, Marie Claire, and others. Upon graduating from Northern Illinois University in 2005 with a degree in journalism, she started writing about disability, relationships and pop-culture on her blog, So About What I Said.
I sat down with Blake to talk about resilience, bullying and living a full life with a chronic disability.
What was it like growing up like with Freeman-Sheldon Syndrome?
My parents, I really credit them because even though I had such an abnormal disability they gave me such a normal childhood. When I wasn’t in the hospital I was just Melissa. They really made sure that my disability didn’t define me more than it had to. Everything except my disability was normal which sounds really odd considering how abnormal my disability is, but I had a really good childhood.
Did you have to combat any bullying?
It’s funny because I wasn’t bullied. The kids accepted me and it’s funny because now with the internet and being a writer, I’m more bullied than I ever was growing up.
What kind of things did your parents instill in you to have such a great attitude and to be so well adjusted in school?
From a young age they really taught me not to let my disability stop me from doing what I want and from living my life. They always taught me to strive for what you want and I think that a lot of parents do this with their kids. I feel like it’s so important that my parents did that because it could have been so easy for me to kind of feel defeated and let my disability stop me but they always said, “You can do it,” and “Keep going”. I think that really helped me get to where I am today.
How is your life different than a non-chronically disabled person, if at all?
I do struggle with some activities and daily living. I need help showering and dressing and with food preparation because I can’t reach the oven and microwave. I can’t drive so I take the bus. So, in that aspect I need help but other than that, I am independent. Once I’m dressed and ready for the day I can do things myself. It takes a little extra planning to be independent but I’m so glad I know that that’s not impossible.
Can you give me an example of a time when you were growing up that was more challenging than you wanted it to be and how your family dealt with it?
I think high school that was the main time I really felt different. It was the first time I really felt different from my peers and I kind of mentally realized oh my disability does make me different. There was a big moment where I chose how I was going to view this difference in my life going forward. Am I going to use it as something that makes me different? And this difference doesn’t mean that I’m not capable. Or am I going to completely let it serve as an obstacle? And I am still like that. I still think yeah it makes me different but it doesn’t mean that different is bad.
There was a big moment where I chose how I was going to view this difference in my life going forward… Am I going to completely let it serve as an obstacle?
Let’s fast forward to today, a few months ago when your Instagram post went viral.
I’ve gotten bullies and trolls so much on the internet, just from being on the internet and I think being a writer doesn’t help because I’m on the internet a lot and I publish a lot and people have a lot of opinions about what I write. So, I’ve gotten a lot of bullies like that. That wasn’t the first time I had been bullied online, which is sad. I feel like people get behind a computer and they feel like they can say anything they want.
What was your initial reaction to being told you were too ugly to post selfies?
My disability does make me an easy target because I do look different. I mean that’s just a fact. I look different. So, when I first saw all of those comments it did make me angry and frustrated that in 2019 we’re still at this place where we have people acting like this. And then I thought well wouldn’t a selfie be a perfect response to that. It would be the perfect way to address it. And in a way that was empowering, it was taking back my power and saying you can say these horrible things but I’m going to keep living my life and I’m not going to hide. So, it was something so positive that came out of something that could have been extremely defeating.
Is individual personal empowerment like the one you displayed an increasing trend in the chronic health landscape?
There are so many people with disabilities on Twitter. I do feel like people especially with disabilities are speaking out and they are refusing to be silent and that is really empowering. We need that to combat so much of this hate and also to combat misunderstanding disability because there are so many stereotypes and misconceptions about what it’s like to be disabled and live with a disability. I think having so many disabled people vocal, present and existing and refusing to be silent is really important.
What kind of power and purpose does that serve to the average citizen when everyone with a chronic illness or health condition is banding together?
I hope that in the long run it will cut down bullying and those attacks. I think if I changed one person’s mind about disabilities then they could do the same with someone else and it could be kind of a ripple effect.
What advice or words would you give to someone that’s also dealing with chronic illness?
That it’s ok to be different. Society has taught us so much that we have to conform and be normal and that there is only one way to be and if you’re not that way, there’s something wrong with you. It is easy to get down on yourself when you’re looking around and seeing you’re not like other people. And I get down too sometimes. I’m not immune to those feelings. I just tell myself it’s ok to be different. Being different doesn’t mean you can’t live a full and happy life.
