First published in Guerrilla Feminism.
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.”