NeuroVoices: Sarah Todd Hammer on Changing the Perceptions and Conversations on Neurologic Disability

Sarah Todd Hammer

Acute flaccid myelitis (AFM) is a type of rare neuroimmune disorder characterized by inflammation in the spinal cord that has distinct clinical and MRI features. The predominant presentation of AFM is a rapid onset of weakness within hours to a few days that may affect the limbs, face, and muscles that control breathing and/or swallowing. Until the recent characterization of AFM in 2014, several individuals with initial presentation of flaccid limb weakness and/or paralysis with predominantly grey matter lesions of the spinal cord were diagnosed with transverse myelitis or Guillain Barre syndrome in recent years.

Sarah Todd Hammer, a 21-year-old college student, was diagnosed with AFM when she was 8 years old and has become an advocate for disabled persons since then. A 3-time published author, Hammer released her first memoir describing her disability journey when she was 11 years old, and is currently writing her 4th book, an educational disability justice manifesto. In addition to pursuing a Bachelor of Science in psychology and communication studies, Hammer also serves as the president and cofounder of the Davidson Disability Alliance.

Since her diagnosis, Hammer has dedicated efforts to uplifting others who have experienced life-altering events, while educating the general public on disability justice topics. As part of a new iteration of NeuroVoices, NeurologyLive® sat down with Hammer to discuss her disability journey and the ways in which disability should be viewed and discoursed.

NeurologyLive®: Could you please start by discussing your condition and your journey so far?

Sarah Todd Hammer: I'm 21 years old now, but I've had AFM (acute flaccid myelitis) since I was eight years old, so it's been more than 13 years. When I first experienced AFM, I was at a ballet class. Dancing had been a significant part of my life since I was three years old. I was attending my regular ballet class when I suddenly developed a severe headache and neck ache. It was so painful that I began to cry, which was unusual for me as I never wanted to miss ballet class. However, the pain became excruciating, and my mom decided to take me home to rest. As we were leaving the dance studio, I sat down to adjust my tights, and that's when my arms and hands suddenly stopped moving. I informed my mom that I couldn't move them, and at that point, we knew we couldn't go home. Urgent care was the closest option since the hospital was quite far away.

We reached the urgent care facility in about 10 minutes, but by then, I couldn't even walk, even though my legs were still functioning. My mom had to carry me inside, and from there, I was airlifted to a hospital. I spent six hours in the emergency room, but unfortunately, I received no treatment, and no tests were conducted because they didn't think anything was wrong. All they did was give me Motrin for the head and neck ache. I was sent home and told to return if I wasn't feeling better the next morning. My mom slept with me that night, planning to take me to my trusted pediatrician the following day, suspecting I might have a brain tumor or something similar. However, when I woke up the next morning, I couldn't move my legs either. Within about 16 hours, I had become completely paralyzed from the neck down. It was a rapid and startling transformation. I returned to the hospital, where I was fortunate to see a knowledgeable doctor in the ER. I initially received a diagnosis of transverse myelitis, which was later changed to acute flaccid myelitis. I spent two months at that hospital and thankfully regained the ability to walk. However, to this day, I still have paralysis in my arms and hands. That's where my journey began and where I am today.

You mentioned that disability is an integral part of your identity. Can you elaborate on what that means to you and why it's such a significant part of who you are?

Yes, my disability is a fundamental part of who I am. It has shaped my identity because I have lived with it since I was eight years old. It's not something I can change, nor do I want to change it at this point. While I do have some memories of what my life was like before acquiring my disability, most of my life has been as a disabled person. I've grown accustomed to it and have become comfortable with this aspect of myself, although it did take some time, which is entirely understandable. I can't view the world without considering disability and access because it influences every moment of my life. Not only am I conscious of how it impacts me, but I also think about the experiences of my friends with disabilities, many of whom I've met through my own disability journey. As I navigate the world and engage in various activities, disability is always at the forefront of my mind. Many of my interests and pursuits, such as disability advocacy work, are directly tied to my disability. I recognize that I wouldn't be pursuing certain careers or participating in social activities like my college disability club without my disability. It's an integral part of who I am, and I can't separate myself from it. It has brought me opportunities and perspectives that I wouldn't have had otherwise.

For individuals with disabilities, what message do you have for them, given that you've lived with this condition for more than half of your life?

My primary message is to always advocate for yourself and never be afraid to do so. I find self-advocacy to be empowering, and it has helped me build confidence and assertiveness in other aspects of my life. It's a valuable skill that you learn because, as a disabled person, you are often forced to advocate for yourself in various situations. While it can be intimidating initially, I encourage people to embrace it when they can because it can be challenging, frustrating, and exhausting. I don't always want to embrace it, but I try to see it as a way to become a stronger person. I'm grateful for the self-advocacy skills I've developed because they've been instrumental in my personal growth.

When discussing disability, what should we consider and how should we speak about it?

There isn't a single correct way to discuss disability, but there are generally accepted practices. Speaking from my perspective and not as a spokesperson for the entire disability community, I've noticed that using the term "disabled" is becoming more acceptable and powerful. I personally prefer "disabled" for myself and for the community as a whole because it emphasizes that being disabled is not a negative or bad thing; it's a natural part of the human experience, and I proudly embrace it. Many individuals of my generation and around my age group are comfortable using the term "disabled" as well, and it's becoming more progressive. On the other hand, there are terms like "differently abled" or "Handi capable" that are generally disliked as they can come across as condescending and patronizing. While some people with disabilities may have different preferences, I recommend avoiding these terms if you don't know a person's preference. "Disabled" or "person with a disability" are safe and common alternatives. Personally, I prefer "disabled" because, as I mentioned, I embrace the term proudly. It's also crucial to avoid offensive terms like the "R word" or "cripple." Additionally, the term "handicapped" is outdated and carries negative connotations. Instead, use terms like "accessible parking spots" to describe parking spaces designed for individuals with disabilities.

What impact can community groups and advocacy organizations like SRNA have on patients with neurological disabilities and disabled individuals in general?

Community groups and advocacy organizations like SRNA provide a sense of belonging and community that is invaluable. Many individuals with disabilities, whether acquired or congenital, may not have anyone in their immediate circle who shares their experiences. Connecting with others who understand, even if they don't have identical experiences, can be incredibly meaningful. It's not only about finding people to ask questions or share challenges with, but it's also about building friendships and creating a sense of camaraderie. The disability experience can be isolating if you don't have anyone in your life who has gone through something similar. Personally, my involvement with my college's disability club and SRNA has introduced me to many people who have become close friends. In fact, my best friend and I met through SRNA camps, and our bond is like that of sisters. These organizations provide a vital support system and a positive impact on individuals with disabilities. I'm incredibly grateful for the connections I've made through these organizations and the sense of community they offer.

Transcript edited by artificial intelligence.