LA Times writer Michelle Maltais has created a public celebration of Loving Day stories on the LA Times Medium page. Several of the stories may be chosen for publication in the paper or on LATimes.com. Click below for mine, and contribute your own! If you do, let me know and I’ll be sure to check it out!
Haley Arcuri is in many ways just an average 31 year old. She’s married, has held a steady job for almost five years, and she loves her family. But Haley has had to overcome obstacles throughout life that most of us will never face. Born with brittle bone disease, or osteogenesis imperfecta, Haley refers to herself as a “little person.” Brittle bone disease is often characterized by short stature, permanent deformities, weak bones and frequent fractures, and respiratory issues. About one in 20,000 people have this congenital disorder, and some die from it, but Haley’s mother Deborah wouldn’t let it stop her daughter from leading a full life.
I first met Haley in 2004 when we were both attending Southern Oregon University in Ashland, Oregon. My mom, who was born with a cleft lip and palate, always taught me not to stare at people with disabilities, and like many, I took that advice a little too far. I was so afraid of not staring that I would often go out of my way not to make any eye contact with people who were different, unless I was speaking with them directly.
Haley broke me of that habit by saying hello whenever we passed each other on campus, even though it would be a few more months before we’d officially meet. “My friendliness on campus came from my personality and maybe subconsciously a desire to break away from a stereotype about people in wheelchairs and even disabled people as a whole,” Haley says. “It also could be that I’ve only really been surrounded by people of average height and no apparent physical disability. I tend to forget a lot of times that I’m ‘different.’ This body, this life is all I know.”
Haley’s mother Deborah has been in her corner since day one. A yoga instructor who lives back in Haley’s hometown of Tahoe City, California, Deborah has been active in supporting her daughter as much as she can. “I don’t know what I would do without her,” Haley says. “It’s kind of scary to think about, because there are so many things that I rely on her for. But she also has taught me to learn how to take care of things on my own, and teaches me about asserting myself and saying my needs.”
During her senior year of college, Haley sustained fractures to both her legs and had to be intubated due to developing respiratory acidosis from medication. Despite this major health setback, Haley finished her degree on time, with a major in communications and a media studies focus. Her initial goal was to become an event planner, and she organized bringing motivational speaker Sean Stephenson, who also has brittle bone disease, to campus for a series of talks in fulfillment of her senior capstone. However, after this successful but stressful experience, she decided event planning wasn’t something she wanted to pursue as a career. After graduation she got a job as a telephone services representative, renewing memberships for nonprofits such as public TV, public radio, zoos and museums. Haley worked that position for five years, took some time off, and then was promoted to quality assurance monitor.
For Haley, going to college and working was all part of the plan. She says of her mom and dad, “They’re my backbone. Without them I wouldn’t be here and I wouldn’t maybe have the courage to try to live on my own. They really pushed that for me. When I was in high school, they kept saying, ‘You need to get ready for graduating and thinking about where you want to go after this. You don’t want to live at home with your mom and dad for the rest of your life, do you?’ And I didn’t want that, but I was afraid too, to take that step and do something I’ve never done. I’m glad that I did it, but it is challenging.”
In addition to the injury she sustained her senior year, the next year Haley fell off her toilet seat while visiting her girlfriend, now wife, Angie Arcuri. After sustaining a concussion and breaking both her legs and one of her arms, Haley began to get a bit jaded about traveling. “I think it changed me a little bit. I’m more cautious now, and I don’t want to say that I’m more closed off, but it changed me, not in a good way. I’m happy to be alive and I’m happy, but I have more fear now.”
Haley hardly lets that fear stop her from pursuing her goals, however. She and Angie, who is currently a communications and film major at Southern Oregon University, plan to create a docu-series to share their lives with others. Haley, inspired by her friend Briana Rene’e on Little Women: L.A., sees a docu-series as a way to have an impact on others while still being able to honor her body. “It’s kind of like being a motivational speaker, but in a different way. Because I don’t want to travel to different places. That’s not for me. I like to travel, I do, but it’s risky for me. I’d rather just try to stay put.” Haley’s life with brittle bone disease and a 24-hour caretaker, Angie’s life with high functioning autism, and their life together as a lesbian couple are things that both would like to share with the world in order to increase understanding.
Haley knows that being in the public eye won’t be all positive. Recently, she and Angie were trolled on Facebook by a stranger, Haley thinks through her connection to Little Women: L.A.: “I know why you two are together. It’s because you couldn’t find anyone else, because of the way you both look.” Haley says indignantly about the comments, “Not only cutting me down but also my wife. My wife is a really beautiful person.”
Haley and Angie met in 2009 on Match.com. Though each was recovering from a breakup, they formed a quick bond that has remained strong. “We’ve definitely had our ups and downs, that’s for sure,” Haley says. “But mostly ups. We’re pretty tight. I’m very blessed to have her in my life.” Deborah was supportive of Haley’s relationship with Angie from the very beginning, and the couple had an intimate wedding in 2011 with friends and family in attendance.
Growing up, Deborah was proactive about supporting her daughter and helping her connect with others. She had Haley’s friends over for tea parties and home cooked meals, and frequently took them out to dinner and the movies. Deborah likes to treat Haley to facials, and most recently came to Ashland to be with Haley while Angie was in New Orleans with her family. Due to her difficulties with traveling, Haley had decided to sit that trip out, but she is able to take things as they come, largely due to her mother.
Haley recounts the frequency that her mother would have to miss out on things because of needing to take care of her growing up. “I think that’s something she had to overcome, just living in the moment. That’s why she’s taught me not to plan so much, because she’s had to learn that things change, they come up.” Haley is ever aware of the sacrifice Deborah made for her, though it’s doubtful that Deborah would have had it any other way. Both women possess a warm spirit that is infectious to those around them. Deborah and Haley have forged a life both together and apart that is built on kindness and thankfulness for each day. Haley says, “You don’t have tomorrow. You only have today.”
When I first watched Beyoncé’s “Formation” video, I felt like I could breathe again, after the almost daily deluges of police brutality. In one fell swoop, Beyoncé had turned the narrative to a place of power, as she reminded America that a slow and steady slay leads to a voice that cannot be silenced.
My euphoria lasted only about a day.
Soon after the video went live, women began to bicker about Beyoncé’s rights to personal agency. Some argued that a light-skinned woman with a self-proclaimed admixture of “Negro and creole” couldn’t accurately speak for black women. Others felt her lyrics flaunted a mixed race identity while denigrating blackness. I expected the backlash she received from some of the white community, which largely focused on her “militant” leanings, but I didn’t expect backlash from inside our own ranks.
As I watched Beyoncé’s visual album Lemonade, which dropped just two days ago, I felt myself questioning everything. I replayed comments in my head about whether Beyoncé was trying to appropriate whiteness with her blonde extensions. I feared black viewers would see her Victorian dress as proof of the same. When I noticed her similarities to Sarah Jessica Parker à la Carrie Bradshaw, I felt ashamed by my white frame of reference. I worried her use of black men in the visual album would lead people to believe that she considered the men’s blackness to be the problem.
At the 42-minute mark, actress Amandla Stenberg’s face filled the screen, and my internal dialogue stopped. In 2014, I met Amandla at the Mixed Remixed Festival in Los Angeles. Born of a white father and black mother, Amandla speaks unapologetically about black issues without stifling her mixed race identity. Beyoncé chose other black women for cameo roles who have also been criticized for their identity, including America’s Next Top Model actress Winnie Harlow, who has vitiligo, and tennis pro Serena Williams whose body was considered by many as too muscular to be beautiful. Through those she chose for the cameo appearances, Beyoncé clearly doesn’t care how others think she should identify. Instead, she celebrates a connection between black women that goes beyond skin tone.
Of course, Lemonade isn’t just about race or about black girl magic. It’s also a tragic and heart wrenching love story between Beyoncé and long time husband Jay Z. Beyoncé sings of comparisons between Jay Z’s infidelity and her father’s, trying to reconcile her conflicting emotions for both male figures. That black women have experienced high rates of abuse from partners of any race is fairly common knowledge, due to the history of slavery and the beliefs about the black female body. For this reason, intertwined within Beyoncé’s love story is an ode to black women that transcends heartbreak, or perhaps is made stronger because of it.
During the album’s climax, appropriately named “Freedom,” Beyoncé and her cameo clan form the epitome of girl power. Beyoncé sings, “I break chains all by myself /
Won’t let my freedom rot in hell / Hey! I’ma keep running / Cause a winner don’t quit on themselves.” The climax mirrors the rising conflict at the beginning of the album, with mesmerizing stills of the young women as they inhabit what appears to be an old plantation. Back to the climax, the women again play homage to the South, this time through conversation, communion, song and dance, and a sense of resolution. It’s no coincidence that the women around the table are of varying hues. Beyoncé knows who she is, and she appears to understand the petty divisiveness that can infiltrate black power when we fail to look at the bigger picture of generational oppression.
Black women experience different levels of discrimination, largely based on skin color and physical features. But when we limit our discussions to how a dark-skinned or light-skinned person should identify, we’re missing the monumental connections that should bring us together, as well as failing to acknowledge the discrimination that all black women face. Beyoncé’s album is at once a lamentation and an ode to female solidarity. “Formation” is largely about solidarity against police brutality, while Lemonade as a whole explores gender conflicts and limitations unique to women, including the real women who have lost their sons at the hands of the police. In both cases, we are made strongest when we lean on one another, and Beyoncé’s hour-long visual masterpiece brings us that much closer to social and political empowerment.
Even though I’ve been making steady progress with my writing for a number of years, it wasn’t until April 19th that I felt like I writer with a capital “W.” That’s the day I landed my first article on Essence.com.
Gabrielle Gorman was easy to write about… with the only difficulty being how to summarize this amazing young woman in just 300 words. Her film Dear America has won awards over the past few months, and I had the privilege of sitting down with her for an interview. What makes Gabrielle so special is her desire to be vulnerable, and to use that vulnerability to bring people together. I hope you like the article as much as I enjoyed writing it.
When I was a little girl, I looked up to my dad the way most little girls look up to their fathers. I liked watching the way he’d cross his legs while he smoked his pipe in contemplation. I liked lifting my dumbbell while he lifted his barbell. I liked telling people that my ex-prison father could beat them up at a moment’s notice.
My parents split up when I was three, but I still saw my dad fairly regularly—until he moved three hours away when I was seven. It was when my dad moved back to our area at the start of middle school that he started to fall from his pedestal.
Last Friday I did a reading for Camp Real Pants at Astroetic Studios in Downtown L.A. The event was an offshoot of the AWP (Association for Writers & Writing Programs), and as I could afford to attend the conference itself, it was nice to be somewhat near the action, and right in the thick of a related event.
In honor of the reading, my friend Mike put together lovely chapbooks, which are currently for sale. “(not) Mixed (up) Messages: On Dads, Death and Mixed Race Daughterhood” is a combination of excerpts from my memoir and a couple of my published articles. All blend together to poignantly wrestle with the three Ds mentioned above. I’m still at work on the memoir but am excited to share some of the finished pages with anyone who’s been following my journey, and with those who haven’t!
“Shannon is a fearlessly vulnerable, beautiful, and brave voice. Her stories and experiences inspire me to accept myself for who I am—to be myself and not who others tell me to be.”
In two days, I board a plane to visit my 86-year-old grandma in Washington State. She’ll be 87 two days after I land. My grandma is slowly succumbing to dementia, which, thanks to the fate of her older sisters, she knew would be her fate as well. Everyone lives long in my family, at least on that side, but they begin to lose their ability to reason, remember and be fully present in the world long before they take their last breaths.
While much of me is excited to visit my grandma, I’m also scared. I’m visiting her in part because she’s slowly drifting away from us. She’s as healthy as a lion, but her mind is becoming frail.
My grandma was my mother for much of my life. Her home was my home for more years than it wasn’t. I watched her run a business, chat up strangers with ease, and manage a household all by herself. She taught me how to parallel park, how to downshift and upshift on windy roads, and how to value my writing just as she valued hers.
In my late teens and early 20s, I devoured her bookshelves of hard cover classics, many of which I’ve since inherited. It was she who taught me the beauty of the written word, and she who made discussing dictionary definitions part of a frequent ritual at the dinner table. Not as a way to flaunt our knowledge, but as a way to continually revel in the beauty of the English language.
My grandma always wanted to write her life story. I remember her writing group gathering around the dining room table and sharing pages from their latest works. The women around the table took their writing seriously, and I knew it was my destiny to follow suit. My grandma, through her own lived reality, presented me with a reality I could visualize. I grew up, became the head of my (single person) household, and use words to convey my deepest thoughts and emotions, and even to pay my bills.
My grandma will never get to write her life story. Her mind is too far gone now to string together memories of a long gone past. While I mourn for her inability to realize her dream, the mourning adds momentum to my own literary projects. My grandma sacrificed a lot to care for those she loved. She raised a handful of children–some her own and some who needed a structured place to stay. By the time she was through raising others, she was too far separated from her own past to put it to paper.
A year ago my grandma and I shared a hotel room at my cousin’s wedding, and we giggled like little girls as we talked into the night. That memory is so sweet that I don’t want to lose it — I don’t want it to be replaced by something more complicated and upsetting. I watched my father slowly lose control over his faculties, and I don’t want to watch my grandma lose control of hers. True, my dad was much farther gone by the time I saw him, and he only had about two weeks left, while my grandma might still have many years. But the grandma I know, the one who raised me, is hidden behind a wall of confusion and anxiety. Grandma can’t read anymore, partly due to the dementia and partly due to her macular degeneration. She needs 24-hour care and often can’t plan five minutes into the future or remember 5 hours into the past.
About ten years ago when I was living in Washington myself, my aunt called to let me know my grandma’s heart had suddenly began fluttering out of control. I sped to her retirement home and arrived as paramedics circled her bed. One gave her a shot of something to restore her heart back to a normal rhythm. As the medicine coursed its way through her, she let out what can only be described as a flutter of sensation–a verbal “whooo” at the strange feeling that had overcome her. I hardly ever cry when things happen, but instead usually remain stoic until I can process it at a later time. However, in that moment, tears suddenly welled in my eyes as my rock appeared helpless and vulnerable. It was a moment I don’t care to relive, but I know such moments are inevitable with the continued passing of time.
My aunt finds little scraps of paper with scribbles of my grandma’s thoughts about the past. All tangible evidences of her still strong desire to get her life down before it’s too late. This is all she has left of her dream… Solitary snippets that will probably never be read by anyone.
I’ll continue to pour my heart out onto the page, and to live the life my grandma created for me through her never ending passion for truth in storytelling. And on Monday I’ll give my rock a gigantic hug and revel in her presence for a full seven days. I’ll do my best to capture those moments and hold onto them for the rest of my life.
I just tried out Medium.com for the first time. Here’s the beginning of my essay with a link to the rest below:
Like most of Black America, I watched Beyonce’s “Formation” video yesterday in wonder. And like most of America (not just Black America) I’ve had dozens of opinions flash across my newsfeed. As a fellow “yellow bone,” I’d like to weigh in and suggest that Beyoncé’s lyrics are revolutionary not because they express a unique viewpoint, but because this viewpoint was expressed by one of the most salient Black women in America. I also argue that Beyoncé uses the sometimes “-shallow” lyricism of traditional Pop and R&B songs to dismantle, or at least disrupt, the very genre itself…