My name is Jan Taylor Garrett, and I serve as an at-large member of the U.S. Thalidomide Survivors Board of Directors.
I love my husband Dan, kitties, all things purple, and my friends and family.
I was born in February of 1962 in Oklahoma City, OK. My disability is that both arms are missing at the shoulders and I have 2 short leg stumps (femurs) above the knee. Medically, that is called upper bilateral amelia and lower bilateral hemimelia. Before her death in 2019 at age 93, my Mom told me that she believes her doctor gave her an unlabeled pill early in her pregnancy to help her morning sickness.
Soon after I was born, that same doctor put my Mom in a hospital room with another woman whose baby was stillborn. You see, the doctor assumed my parents would place me in an institution so they wanted my Mom to get used to the idea that I was gone. Fortunately for me, that doctor clearly underestimated my parents, particularly my “kickass” Mom Ann – a smart, lovely, determined woman ahead of her time. My Mom told the doctor they had lots of family support and they planned to take me home and love me. And love me they did.
Along with my parents, my older siblings (I was the baby) cared for me and taught me many things, like how to sit up and go up and down stairs independently. My parents and grandparents on both sides took me out in public frequently – they were never ashamed of my disability. My beloved maternal Grandad Everett also made me many “low tech” gadgets and little tables so I could play more independently. A former teacher, he also taught me to read and write before I entered kindergarten.
In my younger years, I used both arm and leg prostheses (artificial limbs). Neither really helped me at all and they made me feel so hot. So at age 13, I began to use my neck and left shoulder for writing, eating, etc. Unfortunately, that has now led to arthritis and chronic pain in my neck and back.
I developed significant scoliosis (spinal curvature) and had Harrington Rod surgery to correct it at age 15. I had to be in a body cast and later a body brace for a year afterward.
Because my family knew that truck driving and ballet dancing were likely “out” as career choices for me, they always encouraged me to do well in my studies. I received a Bachelor’s Degree from Scripps College and a law degree from the University of Oklahoma College of Law.
After law school, I met my wonderful husband Dan. We have been married for 29 years now. He is truly my prince! In the next year, we plan to add 2 new kitties to our household in Berkeley, California.
I have always worked for either the federal government or non-profit organizations that serve people with disabilities. Currently, I provide technical assistance and training on the Americans with Disabilities Act (ADA) for the Pacific ADA Center.
Having a significant disability is expensive, and I never earned the type of salary I could have earned in private business. Yet, (fortunately or unfortunately) my salary was always too high to qualify for disability benefits. Thus, I have to pay out-of-pocket for everything – attendant care, accessible vans, home modifications, etc. Also, people who have lifelong disabilities do not qualify for long-term care benefits, and I obviously cannot become the caregiver for Dan he so deserves. All of this makes me worry that Dan and I don’t have the retirement future we really need.
My hope for me and all the other USA Thalidomide survivors is that we will receive funding that helps us move into our retirement years and care for our family members with dignity and sufficient funds to meet all our needs. After all the years of misinformation about the use of thalidomide in the United States, we deserve that.
