|
I was born prematurely because my mother was pushed into a jewelry counter during a store robbery, and doctors thought that’s the reason why I have cerebral palsy. When I was a baby, we moved to California. At 18 months I started school and haven’t stopped since.
I went to Roosevelt School in Pasadena for the first nine years of my life. It was a school just for kids with disabilities. We had kids from age 18 months to age 21. While schools like this are often criticized for being segregated, this was honestly the most mixed and varied group of people you could ever hope to meet, and it gave me a deep commitment to the idea that people are just people together.
We had students from all over the world who came for the medical care and services California had to offer even then, and they would visit my classroom. We had fun.
There were also some abusive experiences and by the time I was 6 or 7, I was standing up to teachers and aides about their treatment of the other kids. This was my first experience of advocacy, and I know that my deep caring about disability and human rights started there.
From there, I went on to a regular education school starting in the fourth grade, with special education services for math. I enjoyed school, though I was deeply quiet and shy. As a teenager, I struggled with selective mutism, an anxiety issue that makes it hard to say words out loud except in situations and settings where you are extremely comfortable. This strained my friendships in high school, and I requested to go to college. I began at 16 and was enrolled in high school and college at the same time.
My mom, Elaine, was a teacher who taught second grade through high school at various points in her career and deeply supported my education. She believed in my ability to succeed and encouraged me to grow and it is because of her that I earned my bachelor’s in social work from California State University Los Angeles in 2004.
I then started doing some consulting on disability issues, speaking in classrooms and hospitals. I was happy and fulfilled. I thought it would last, and then in 2011, I got a pressure injury from a large barrette that my attendants either did not see or did not care about and laid me down on. They then left to come back in the morning. I had thought I was just having nerve pain, which I already had at that time, and I didn’t call my attendant to come back and check because she had seemed irritated the last time I had. By the following day, it was worse and the next day it had turned black and I was taken to the emergency room where I was told they had to operate on me as soon as possible. I had arrived late at night around 1:00 a.m. in the morning and by 6:00 a.m. the surgery was complete.
I was diagnosed with MRSA, a bad infection that could have killed me. From there, I started having low blood pressure, vomiting, dizziness, digestive issues and other symptoms. I was eventually diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and I spent years recovering to the point I could work again. Right before this pressure injury happened, I applied to graduate school in social work to continue my social work education. I finished four classes and couldn’t continue due to my symptoms.
When I left, I didn’t know it would be for 6 years. Six years after leaving, I reapplied. I was accepted and restarted and graduated with my master’s in social work in 2019. A week before my graduation, my mother died of biliary cancer, so it was difficult to celebrate, and then my life drastically changed.
I focused on supporting myself through POTS and improved, though I still have it. I threw myself into certifications to deal with grief, becoming a licensed early childhood music and movement teacher, a functional nutrition counselor, a body image coach, and a senior group facilitation leader, and now I am studying to be an infant and early childhood mental health specialist. I use these now in my work as a consultant outside of PASC, and I hope to grow in them.
Shortly after this, I met Wonder, a young refugee, first in Kenya and now South Sudan that l care about and through mutual sharing of the difficulties in our lives, began to support each other emotionally. We have even written a song together. We have now been spending time together online daily for 3 and a half years as she and I hope, work and pray for her resettlement and for us to meet.
When asked what I should say in this newsletter about Wonder and me, she replied “Tell them you’re an icon. Tell them you can bring hope to anyone.” I laughed and said no one has ever before called me an icon, and she said, “But you are!”
So, there it is, everyone. Though I think she is biased, I am touched, and I do believe in hope and solutions.
And so, I am here at PASC now. PASC has allowed me to use my skills well. It is a good fit for my focus on program support, policy, research and other things I care about as a social worker. I can do this in both English and Spanish, and love to write and research, so you can ask me questions. Also, I am looking to help grow our Consumer Corps.
My goal is to help others on IHSS to feel strong in themselves and their power to direct and support their IHSS workers. I want to fill in the gaps I see.
I have an IHSS worker named Nora and have been working with her for three years.
| 
