Disability Archives - Page 2 of 96 - So About What I Said

Thursday, September 20, 2018

On Writing About My Disability

Whew!! I’ve been going full-speed ahead on the writing front these last couple weeks! I know, hello, it’s my career and I write every single day, but the pieces I’ve worked on lately have been some of the most personal I’ve ever written. It’s made me think about a lot of things, especially about why writing about my disability has meant so much to me over the years…

The year was 2007. The hot, sticky summer, to be exact. This was in the old days before my blog, which in itself feels like ancient history. I had an essay published in Redbook — like, the actual glossy, shiny print magazine. This was the first time I really remember writing about my disability. I had graduated college a couple years earlier and was getting into freelance writing. I was still learning about the writing business and it was so exciting to see my name in a national magazine! It was thrilling to go to the store and see something I wrote on the newsstands. I got good feedback on it, which is probably part of the reason why I kept going with writing. That feedback encouraged me to keep going.

I remember being unafraid to share my story — something I had always been a bit self-conscious about doing up until that point. Looking back, maybe I did it because, although I loved reading magazines, I never really saw anyone like me in the pages. Sadly, there aren’t many publications focused solely on disabilities — maybe I’ll create one someday?? Something I’d really like to see is people with disabilities being featured more in mainstream publications. Of course it’s amazing that there are publications geared toward the disability community, but it’s time publications were more inclusive.

I’ve heard from other people with Freeman-Sheldon Syndrome because of my blog. I’ve gotten emails from people who said they Googled FSS and found my blog, so that’s always a humbling experience. I often wish the internet had been around when I was growing up because it would have been such a comfort to be able to connect with others who also have FSS!

And, honestly, that’s been my #1 goal with every piece I’ve written since: To try and make the world a more inclusive place for people with disabilities. In writing about my disability, I want to shout to the world that we’re people who live full and fulfilling lives. I hope my writings have shown that people with disabilities have a voice and we’re not afraid to use our voice to speak up and be heard! xoxo

Thursday, September 6, 2018

My Essay on Yahoo: “As a Woman With a Disability, I Felt Validated By the New Aerie Ads”

You all know I’ve got a passion for fashion, but it’s always been a challenge to find clothes and styles that accommodate my disability. It can be frustrating, especially when I see something I like and then realize, “Oh, that will never work on me!” And, unfortunately, my experience is all too common. The fact is, fashion is just not disability-friendly. So you can imagine how happy I was to hear about the Aerie ads featuring women with disabilities and illnesses modeling the clothing brand’s lingerie — so happy, actually, that I wrote my first essay for Yahoo about how meaningful this is to women like me!

Although we’ve been seeing more and more companies taking steps to be more inclusive in 2018 (thank goodness; it’s about time, isn’t it?!?), it’s still pretty rare, especially when it comes to people with disabilities. We’re typically an after-thought, if we’re given any thought at all. Needless to say, I had a lot to say in this essay and, honestly, the words just seemed to flow from my fingertips to the keyboard — words about how women with disabilities are typically seen and how these Aerie ads help squash long-help (and false!) misconceptions about what it’s like living with a disability.

Here’s an excerpt of the piece, in which I try to find a very respectful way to tell the world that I’m not here for any of its blatant ableism…

There’s an underlying assumption that people with disabilities shouldn’t be comfortable in their bodies because disabilities aren’t “normal.” A disability can’t be normalized or seen as mainstream. A disability can’t be sexy. Women with disabilities are often not even seen as women. Our sexuality and femininity takes a back seat to our disability. A part of ourselves, a part of our identity is erased in the process.
I’ve struggled to belong, to live my life as a disabled woman in an able-bodied world. Seeing women like me in national ads makes me smile at myself in the mirror and makes me hold my head a little higher. Instead of feeling like I need to hide the disabled parts of myself, I now want to show them — real and unafraid.

You can read the full piece here and I’d love to hear your thoughts. Feel free to email me anytime at mellow1422@aol.com and let’s chat! And of course, feel free to share my essay on Facebook, Twitter or even your local refrigerator. If you share on Twitter, be sure to tag me @melissablake so we can connect! I can’t wait to hear from you! Love you all… xoxo

Wednesday, August 22, 2018

In Which I Become a Cartoon Illustration

Yes, friends!!! You read that right! It’s always been my dream to see myself in cartoon illustration form and, well, thanks to illustrator Melissa Hiebert, that dream is now a full-color reality!! I’m so excited to share this with you today, as well as an interview with the illustrator herself tomorrow — be on the lookout for that!

So! Here’s the backstory: We all know that Twitter can be a very unfriendly and cruel place. As much as I love Twitter, it can feel like a wild jungle sometimes with all the trolls on the loose! I’ve even written about said trolls, both in a blog post and for CNN Opinion, and it was that CNN op-ed that brought all sorts of trolls out of the woodwork. All. The. Trolls.

Oh, trust me, I had some dizzying days after that piece was published. Who knew people could feel so threatened by a strong woman standing up for herself and other women? You’d think I’d just committed a major crime, like, oh, I don’t know, influenced a certain presidential election, because all the nasty comments were “Look at that monster!” “Who does she think she is?” “Eww, you’re really ugly!” “Go away and shut up…”

And then? Well, I found this gem from a lovely little troll, who bestowed a very interesting title on me. I saw the tweet, seethed with rage for a bit and then had a revelation of sorts…

PURVEYOR OF THE MATRIARCHY IS THE BEST TITLE EVER.

It’s not an insult at all and, well, that’s exactly how I’ve viewed it ever since. I mean, think about it! It’s a veritable gold mine for my brand, obviously. I can see it now — shirts, cups, pencils, hats. A whole line of products emblazoned with the words Purveyor of the Matriarchy. It would be such an empowering and reaffirming message, especially in this disgusting time of toxic masculinity. After all, women are strong. Women are powerful. Women are brave. Women ARE the true Purveyor of the Matriarchy. And that is truly something to be proud of! Heck, I want to shout it from the rooftops!

Honestly, I don’t think this troll knew at the time that he was actually giving me an incredible gift. A truly incredible gift. In fact, it was actually one of the highlights of 2017 for me and I highly doubt that troll was planning on that. And I’m positive that he wasn’t expecting that I’d turn his little “insult” into a vibrant cartoon illustration!

As I wrote in that CNN op-ed: “In that tangled web of hateful tweets, someone called me the Purveyor of the Matriarchy. It was meant to be an insult, but I couldn’t help but see it as a compliment — a call to duty, even. I’m never going to be quiet, especially not on Twitter and social media. I’m not going away. And I’ll always stand up — and speak out — for women everywhere.”

I’m about to make my cartoon illustration my cover photo on social media and I can barely contain my excitement!!!! AHHHHHH!!!! I’m so grateful to illustrator Melissa and can’t wait to share my interview with her tomorrow!!!

Oh, and don’t you love how she worked my blog title into the cartoon illustration?? I love how it’s on my shirt — sort of like how I tend to wear my heart and emotions on my sleeve for the entire world to see!

What do you think, friends?? Do you think this perfectly captures my purveyor-ness?? I totally need to get those Purveyor of the Matriarchy shirts made!! Or at least get a hashtag going!!! Let’s tweet #PurveyorOfTheMatriarchy and get it trending!!

P.S. Think I should put that job title on my business cards??

Monday, July 30, 2018

Thoughts on Person-First Language and Disabilities

I admit that I never used to give much thought to person-first language when it came to my disability. Honestly, I didn’t really care if people referred to me as “person with a disability” or “disabled person” because to some degree, I didn’t see a clear distinction between the two. They both seemed to convey the same thing to me.

Is that bad??

I wonder about that sometimes, like, am I being a “bad” disability advocate if I don’t have a preference? Am I somehow not standing up for the disability community? Over the years, I’ve learned that the disability language people use is a very personal choice. Some prefer person-first language while others use disability-first. At one point, I was very pro person-first language. I definitely preferred saying “I am a person with a disability.”

I never wanted to be defined by my disability and I felt like saying I was a “disabled person” sort of dehumanized me. It was like saying that my disability came before my personhood. It was like saying that my disability was the most important thing about me.

As I’ve gotten older, though, I’m growing more and more comfortable with either option. I’m sure some of this shift has to do with the fact that I’m more comfortable and confident when it comes to my disability. I know that my disability is just one aspect of who I am.

Especially in my career as a writer, I’ve dealt with this question a lot since I explore my disability so much in my essays. For me, my disability is definitely a part of me, and there’s no getting around that. But the word “part” is very important — my disability is just one part of who I am. Just like I have red hair and am right-handed. Those are parts of me, just like my disability is. Saying this doesn’t mean I’m ashamed of my disability or that I hate it; I’ve actually come to embrace my disability and am proud of the person it’s helped me become. But in the end, it doesn’t define me or overrides the other “parts” of myself.

The bottom line? How people with disabilities (or disabled people…) refer to themselves is completely their choice and what makes them feel the most comfortable. Autonomy is so important when it comes to all aspects of disability life, and even something as seemingly insignificant like a moniker is actually a pretty significant thing. It’s not small by any means. Definitely take your cue from the person you’re talking about or talking to. People who have disabilities are the best advocates and the ones who are the experts.

Remember, an honest and open conversation when it comes to disabilities is never wasted! xoxo

[Photos via We Heart It]

Monday, July 16, 2018

My Essay on CNN Opinion: “How Starbucks’ Straw Decision Lets Me Down”

Last week, I experienced a freelance writing first: One of my editors at CNN Opinion emailed me to see if I’d be interested in writing about Starbucks’ straw ban. Yes! THIS is why I’ve worked so hard to cultivate my beats as a writer! So honored to advocate for the disability community again!!

My plastic straws op-ed was published last Thursday!!! This marks my 10th one with CNN. Some of the negative responses and ableist comments I’ve received just proved how important this conversation is! It’s disappointing that, again, the disability community was left out of a conversation/decision that directly affects us. As I said in my essay, it’s just another example of our autonomy being taken away.

Here’s an excerpt of the piece, in which I emphasize the fact that even straw replacement options pose problems for some people with disabilities…

These types of unilateral decisions simply don’t take into account the needs of those who will be most impacted. Sure, not everyone will need plastic straws, but people with disabilities should be given the option to use them if they need to.
In an email response, Starbucks told me, “We will work with the disability community to ensure we continue to meet their needs going forward.”
And while that’s at least an acknowledgment of the issue, it doesn’t immediately address the difficulty that disabled people have grasping or holding a cup, or even drinking directly from a cup. Take me, for example. My hands are deformed as a result of my disability, and this makes it hard for me to pick up some cups. My neck is also fully fused, which makes using straws ideal, because I can’t bend my neck back to sip from a lid.

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