DeKALB – Melissa Blake of DeKalb was born with Freeman-Sheldon Syndrome, a genetic bone and muscular disorder. Since birth, she has had more than 26 surgeries, including surgeries on her knees, hands, hips and spine.
Instead of letting her disability define her, Blake, a freelance writer and blogger, uses her words to show others what living with a disability is like: she is a self-acclaimed lover of pop music, polo shirts and Pez dispensers, an avid reader and she has two cats.
She also is a 2005 Northern Illinois University graduate with a degree in journalism.
Blake started her daily blog, So About What I Said, in 2008. It covers disabilities, relationships, lifestyle and pop culture. Her blog has nearly 3,000 subscribers and had more than 2 million page views last year.
Her articles have appeared in multiple magazines, including Good Housekeeping, Glamour, Cosmopolitan, Marie Claire, Woman’s Day and Redbook.
On Feb. 15, her article “Disabled, Shunned and Silenced in Trump’s America” appeared online in the New York Times’ weekly disability column.
Blake met with MidWeek reporter Katrina Milton to discuss the New York Times article, why being a champion for disability rights is important for everybody and how living with a disability changed her life.
Milton: When did you decide to write the New York Times article?
Blake: I was thinking about writing something since way before the election. I was angered and disappointed with how everything was going. In November, after Donald Trump was elected, I read an article about the disability section being taken off of the White House website. I know that it was because the administration was in transition, but that really upset me because I am disabled.
Milton: What other actions did you notice?
Blake: During President Trump’s speech during his inauguration, he mentioned giving power back to the people. I think that he’s doing the antithesis of that when he’s excluding a whole group of people. There’s also the instance when he mocked the New York Times reporter’s disability, but he still claims he didn’t. That hurt me as well.
Milton: Why did you write the article?
Blake: I am very passionate about disability rights and about being a voice for others. I wrote the article because of how I felt. As cliché as it sounds, it broke my heart. It felt horrible to feel like you’re being excluded from an important part of the conversation and from politics. … I spent a month writing the article. I spent time thinking about it and taking time to write it. I first sent the article to the Washington Post, but it was rejected some time later. I sent the article to the New York Times, and they got back to me the same day to tell me they accepted it.
Milton: How did President Trump’s actions make you feel?
Blake: To feel like you don’t have a say is very upsetting. I wanted to dispel some stereotypes of disabled people, stereotypes that portray us as not being active members of society. That is definitely not the case. I have noticed that there is a bigger push to highlight people with disabilities. We are no longer in the shadows. We are not shut-ins that can’t take care of ourselves. We are active participants in society, and I want to remove those negative stigmas.
Milton: Why do you think President Trump’s actions are important?
Blake: When you see someone like Donald Trump, the president, in a position of leadership mocking and putting people with disabilities down, that makes a big impact. People may think that that’s how everyone feels. … The president sets the tone for the country. He sets the precedent for how things are perceived. Like I mentioned in my article, he has a big responsibility. These are no longer just his own issues. About 20 percent of the population in the U.S. is disabled. That’s not a small segment of the population by any means. You can’t push that aside and hope people won’t notice.
Milton: How do you think the media portrays people with disabilities?
Blake: Growing up, I never saw people on TV that looked like me. I had role models, of course, but the people on TV did not have disabilities. Now, there are movies made about people like Stephen Hawking, people who are defying the odds and living their life. Typically, characters with disabilities are used as stereotypes or to teach some type of lesson. Some are in accidents, they heal or use a cane. They are usually not the main character. I think that it has a lot to do with image. Hollywood needs that perfect image, the right look that sells, which is unfortunate. People are much more than their looks, whether they’re able-bodied or disabled.
Milton: How do we change that?
Blake: Talking about it will help. You should not be afraid to tell your story or talk about important issues. The more other people see people with disabilities living their lives, the more mainstream it will become. In a perfect world, disabled people would be on a TV show and everyone would think nothing of it. My goal is to one day get to that point. Speaking up is a big reason why I wrote the article to the New York Times. We have to be a part of the change, we have to speak up.
Milton: What are your goals for the future?
Blake: I have found my niche in my career with blogging and writing articles and personal essays. Those really resonate with me. Once I find the right pitch, I hope and plan on being featured in print again. Someday in the distant future, I would like to write a book, a memoir or a biography.
Milton: How has living with a disability changed your life?
Blake: Living with my disability has taught me my own self-worth and how to be confident in my own skin. I am happy with myself, no matter what other people say or think. You have to be your own advocate and fight for what you want. Never give up. Nobody ever got anywhere staying on the sidelines.