Brachial plexus injury of the dominant right arm and now using a robotic exoskeleton for paralysis to assist in life tasks, from playing the guitar to physical therapy, robotics are changing the way life is lived post a traumatic injury.
After the loss of my mother to suicide and my nephew to SIDS, I struggled with PTSD (post traumatic stress disorder) experiencing flashbacks, obsessive negative thoughts, feelings of guild, anxiety and nightmares. However, I also experienced a greater feeling of closeness to others, I began to be more forgiving and compassionate towards others and my world view changed from generally pessimistic to cheerfully optimistic. I'd like to share my experiences with resilience and being a trauma survivor with you.
Award-winning author and educator, Valerie Foster, shares her family’s experience in fighting to save her teen-aged daughter’s life as she faced death from an eating disorder. Valerie’s internationally-recognized book on the subject, Dancing with a Demon, details what she learned about navigating through the labyrinth of the mental health industry, the misconceptions about eating disorders, and how parents and families can best help loved ones in this battle.
Jacqueline, growing up Jacque; so many parts and pieces that you don't always talk about. Get to know Jacque's parts and pieces in an interactive storybook that allows you to dictate the beginning, the middle, and the end.
We either grow up loving our childhood or recovering from it. I grew up in a dysfunctional family with abuse and neglect. This positioned me well for a lifetime of unhealthy relationships. Come learn about how I healed and stopped the cycle.
It's more than cramps and irritability. It's a buzzing in my head that tells me I'm ugly, that my loved ones hate me, and that my body is trash. It's driven me to find answers on reddit, at the library, ANYWHERE THERE ISN'T SOME JUDGY MD who thinks I'm overreacting. It's cost me relationships, and sometimes I wonder if it will keep me from ever finding a partner.
When a parent ages and is unable to care for themselves, the role of caregiver is one of life’s unexpected or planned responsibilities. Caregiving is demanding and carers are often faced with managing not only their loved one's challenges but, the impact caregiving has on one's own life.
I navigate the world as an autistic nonbinary transmasculine human whilst in chronic pain. I have a connective-tissue disorder called hypermobile ehlers danlos syndrome and am under evaluation for other chronic disabling conditions. I am also a medical librarian- inspired by my experience as a chronically ill person in doctor's offices.
As the single mother/primary caregiver of a 23-year-old with nonverbal Autism, a seizure disorder, and intellectual disabilities, I’ve had to educate myself in everything from disability law to biomedical and behavioral interventions, all while completing my PhD in American Literature and eventually becoming the Poet Laureate of Phoenix. Now, a Medical Humanist and founder/director of a therapeutic poetry nonprofit (Revisionary Arts), I teach others how to use poetry to process, cope, and heal.
Her daughter is terminally ill (born with a rare brain abnormality for which half of her brain was removed when she was less than a day old). She suffers from an intractable seizure condition. After 1500+ appointments, 17 surgeries and a cocktail of up to 15 meds daily, she found some relief for her daughter’s seizures: medical cannabis. She has met some supportive folks and some that weren’t. Ask any question: she’s an open book.
With multiple hidden disabilities, I spend hours each week managing health insurance claims, calling pharmacy prescription processing centers, hospital billing offices, and schedulers, while tending office visits with physicians. I'd rather be working or playing outside. A doctor’s waiting room is symbolic of health care's misplaced priorities. They feel oppressive; inhumane. When a doc makes me wait too long, I often send them a bill in protest.
One month after giving birth the world crashed into a pandemic, 5 months after that I figured out my "pandemic anxiety" was full blown post-partum depression. Getting help from my OBGYN's office was easy, seeking out that help on my own was hard. Treating it with medication was, eventually, easy. Getting treatment from a mental health professional ultimately failed.
Who gets to be a reader?
Anybody! For the most part, our readers are students at the Phoenix Biomedical Campus; however, faculty, staff, and community members are also welcome to join.
BTW: if you're unsure what a reader is, or does, here's a brief explanation...readers are curious, human-centered persons who want to meet and learn from our books, all of whom have experienced difficulties with healthcare due in part to how they identify. Readers might want to get to know someone who belongs to community of people that the reader hasn't been around. Readers might also want to meet with books who have had experiences that they also share. Really, it's up to our readers who they choose to "check out". That said, this event is designed as an opportunity to challenge our own biases and privilege, and really come to terms with the many ways that discrimination can lead to harm for our patients and our communities.
How does reading a book work?
First, many of our readers will want to reserve a book beforehand. Our books all have titles and short "book covers" that explain to us how they want to be identified. Starting approximately 1 month before the Living Library program, all of the book info will go live in Eventbrite. At that point, we'll post a link on this page, where people can go to make selections.
What if I don't register beforehand?
That's okay! Anybody can show up to check out a book on the day of the Living Library. Once you arrive, we will have a fancy event booth set up with book titles, covers, and info about availability. Most book interactions will be approximately 20 minutes, and in some cases, more than one reader at a time can visit with a book. Remember though, if a book is "checked out", then you'll need to wait for them to become available, or choose from one of the many other amazing people who have given up their time to come and talk with us.
What should I talk about with a book?
There are a few rules to keep in mind when you sit down with a book.
Remember that, just like a real book, our human books will set the narrative; let them go at their own pace
It's okay to ask tough questions! Our books are aware that you will have questions, and are prepared to discuss them
However! Please keep in mind that we are not here to discriminate, harass, or question the truth of someone's narrative. We are here to learn, and to bravely question our own biases through our conversations with the human books
Here are a few questions you might ask a book:
When (or how old were you) did you become aware of the stereotypes/prejudice towards you?
What resources have you used to take control over your own health?
What has made discrimination in medicine and healthcare worse for you? (legislations, mass media, etc.)
How has your community been there for you when medical providers have not? Vice versa?
What kind of words and actions can healthcare providers use to show you dignity?
Call to action: what can we do after we leave today to help reduce discrimination for persons in situations similar to your own?
Finally, check out this video from Human Library Vancouver to get some insight into the typical exchange between a book and a reader:
So...how does this work?
For the most part, the Living Library works very similarly to a traditional library; however,our living books are just that: living!
Other than that, this is how it works:
On the day of the Living Library, our books will be situated in online Zoom rooms waiting to tell their stories:
We will have a "congregation area" or major zoom room set up as a shared event space, where we will begin each session, explain the rules, and usher readers to their Zoom rooms. Readers will also check in here. In fact, if they are attending for a class, this is where they will sign in for class! Readers will have already selected a book online, or if they haven't, they can select an "available" book from our book display at the circulation desk. Displays will have book titles and covers for readers to peruse before making a decision.
Once a book has been selected, the reader or group of readers will be ushered to that book's zoom room, where they can engage in conversation, listening to the book's story, asking questions, and maybe sharing stories of their own. Many of our readers may have assignments that they need to complete for class. If this is the case, they will likely be writing down notes as they talk. Additionally, if at anytime someone would like to speak with a counselor, there will be people available at-hand to help.