Buying your first piece of IKEA furniture. Backpacking around Europe. One-night stands. Splurging on dinner Friday night and spending the rest of the week eating ramen. These are just a few of the things most of us expect of our 20s.
Something that isn’t on anyone’s list? Slowing going blind from a degenerative eye disease.
It wasn’t on Nicole Kear’s list, either. And the Yale and Columbia graduate intended to live her life like it wasn’t. She moved to Los Angeles to pursue an acting career, fell in love, got married and even attended clown school. Yet through it all, Kear knew a degenerative eye disease she had been diagnosed with at 19 was slowing taking her vision away. She was told she had one good decade before she would be entirely blind. Her family and husband knew about the disease (retinitis pigmentosa), but Kear was embarrassed and hardly told any friends — she had lots of excuses for why her eye makeup looked messy or she wouldn’t drive at night. However, Kear and her husband settled into new parenthood, and she had to come to terms with the realities of her disabilities, including learning how to walk with a cane.
I read Nicole Kear’s funny, fascinating memoir Now I See You in almost one sitting and came away from it thinking, I could be friends with this person. She’s smart, spunky, and makes it easy to put yourself in her (unfortunately, no longer high-heeled) shoes. I gave her a call at home in Brooklyn to chat about blindness, how she managed to write a book with three young kids, and giving strangers the benefit of the doubt.
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I’ve always prided myself on being a pretty fearless person. I was born with Freeman-Sheldon Syndrome, a genetic bone and muscular disorder, and spent much of my childhood in and out of doctors’ offices and hospitals. I’ve survived some 26 surgeries. I’ve worked through the dark days following my father’s suicide. Oh, and let’s not forget about the time I went on the Jaws ride at Universal Studios and managed not to have a heart attack, despite my unnatural fear of sharks. Totally fearless, right?
But still, even though I’m in my early 30s and have it together (mostly), I’ve never really been able to shake those love and relationship hangups that most people seem to leave in adolescence. In some ways, I’m still that awkward 16-year-old girl, trying to muddle through all those confusing questions. (Full disclosure: I don’t have any dating experience yet, but enjoy living vicariously through sappy romantic comedies…) I know that my disability will help me weed out a lot of dud dudes, but I also know that it will raise a few questions. Questions about the role my disability will play in my life and in my future relationships. Questions that, honestly, I’ve been too afraid to ask, even of myself. Maybe I’m too scared of the answers. Maybe, deep down, I already know the answers. So many possibilities are swirling in this little head of mine, so I suppose I might as well just ask them… Keep reading »
This is 10-year-old Melissa Shang. In addition to being completely adorable and obsessed with American Girl dolls, Melissa also suffers from muscular dystrophy. She has Charchot-Marie-Tooth disease, which means she cannot feel sensation in her arms, legs, hands and feet and to get around in a wheelchair. Along with her sister YingYing, Melissa is petitioning American Girl (owned by Mattel) for a doll like her: a girl who is disabled. Keep reading »
There is one nightmare that every New Yorker is terrified of experiencing: falling (or getting pushed) onto the subway tracks. For Cecil Williams, 61, that nightmare became a reality on Tuesday when he fainted while standing on the 125th street platform and fell down onto the tracks.
But, see, Cecil Williams is blind. So right after he fell, his service dog, Orlando, jumped right down on the tracks with him. A bystander told The New York Post, ”[Orlando] was kissing him, trying to get him to move.” Keep reading »
Today’s most adorable child in the world award goes to this little girl who signed all the holiday songs during her school’s concert for her deaf parents in the audience. One of my best friends is a CODA (child of deaf adults) and said watching this brought tears to her eyes because it harkened back to when she had to do all the interpreting at school. This girl is really impressive! Most of her classmates are struggling with the basic hand gestures for the carols, while she’s signing all the lyrics in ASL — and hamming it up with goofy faces while she does it (likely because she knows she’s being filmed). I hope Santa brings her something really good in her stocking. [Gawker]
Carly Fleischmann has co-authored a book with her father, starred in a film, has 97,000 followers on Facebook, and will attend the University of Toronto in the fall.
She also has autism and is nonverbal. But what she can do is use technology to communicate; she’s been communicating using computers since she was 10 years old. “Carly was diagnosed at age two with severe autism and cognitive delay and oral motor apraxia, which is a neurological disorder preventing speech,” her father explained in an interview with Simon & Schuster. “We can’t speak to her because we don’t know what she understands, and she can’t speak to us because she’s unable to speak. … Technology has really been the key to unlocking Carly’s voice.” Keep reading »
Yesterday afternoon, two Democratic politicians introduced the Ruth Moore Act, a bill to support former service members who survived sexual assault in the military. Veterans Affairs has long rejected disability claims of military sexual trauma (MST) for troops who were raped by colleagues and now need assistance. According to the Service Women’s Action Network, only one in three claims of PTSD from MST were approved by the VA between 2008 to 2010, presumably because the threshold was too high for these survivors to been seen as eligible. Keep reading »
Last week in Today’s Lady News, I posted about a man in Connecticut who had his sexual assault conviction overturned by a court. Richard Fourtin, Jr. had raped a woman with severe cerebral palsy; she cannot speak and has little body movement. The sexual assault conviction was overturned on the grounds that it could not be proven she refused consent. You can read more about the specifics of the case here and here.
After the post ran, I received an email from a reader, who asked to go by the name Les, regarding the language I used in reference to people with disabilities. For example, I wrote “mental disability” instead of “intellectual disability,” which Les explained in the preferred phrasing. I was unaware of the language disability rights advocates suggest us journalists/bloggers use, so I found the email to be really educational. I asked her permission to print her email as a “Letter To The Editor.” You can read it after the jump! Keep reading »
Meet Alexis Wineman, 2012′s Miss Montana who is headed to the Miss America pageant this January. This year, Alexis will truly be unlike all the other pageant competitors: she was diagnosed with autism at age 11.
Alexis spent her childhood learning to cope with with the effects of autism, including having difficulty socializing with her classmates and taking “everything so literally,” she explained to DisabilityScoop. Performing — like the comedic monologue she’ll perform at Miss America — helped her gain confidence and socialize other people. Now Alexis is now 18 and travels across Montana as the state’s beauty queen teaching kids about developmental disabilities like her own. Keep reading »
When I think about Mother’s Day, I usually picture a dad in plaid pajama pants destroying the kitchen with his kids in a clumsy effort to make his wife breakfast in bed. There is flour everywhere, kids are enthusiastically beating something in a bowl and Dad is putting a single red rose in a vase. The entourage brings breakfast to Mom, who is leisurely reclining on a mountain of pillows. Soon her kids are nibbling at the pancakes on her tray and her husband tells her she has an appointment for a massage/manicure/facial in a few hours. “Until then,” he says proudly, “you’re off duty.”
Mother’s Day looks a little different in our house. Because our four-year old son has two moms, it’s not always clear who gets special treatment that day. We both work hard all year and could both use a whole day “off.” Keep reading »