Living With Multiple Disabilities
Women twirling/juggling five hula hoops.
By Arielle Dance
Living with one disability is often life-changing, but living with multiple disabilities can have an even deeper impact. It comes with high levels of complexity and daily considerations that often cause intense stress. For some, these considerations mean deciding which medication fits into their budget or deciding which disability to disclose first. Alternatively, living with multiple disabilities can strengthen identity and encourage self-advocacy.
As someone who lives with multiple disabilities, I have learned how and when a diagnosis needs to take priority and when multiple conditions need to be cared for simultaneously. For example, since my second pulmonary embolism, I have to take an oral anticoagulant medication. When I had surgery for endometriosis and adenomyosis, I had to switch to injectable anticoagulants to avoid blood clots during surgical care. The surgery was necessary to remove disease and improve my quality of life and the medication was necessary to keep me alive during surgery. Balancing the care for both conditions at once reminded me to think of my body holistically and not in parts.
I don’t believe that any of my conditions matters more than the other but there are moments that one takes priority. I constantly have to choose between them and often the “winner” is whichever condition has the most prevalent symptoms or could put my life at greater risk. I have to ask myself “Does my back pain hurt more than my migraine?”, “Is my fatigue more relevant than my shortness of breath”, or “Which medication do I absolutely need and can it fit in my budget?”. In all this, I remain grateful for the body I was given and will continue to share my story to help encourage someone else.
I asked members of the Diversability Leadership Collective to share how they prioritize and experience multiple disabilities. Meet Dennis Tran, Jennifer Gasner, and Saran Tugsjargal.
Dennis Tran (he/him)
“These diagnoses haven’t defined me, but they’ve given me the tools to understand myself more fully. Ultimately, it’s not about ranking one over the other but recognizing how they interact and impact my life as a whole”
Dennis is a self-proclaimed nature lover and home chef of Vietnamese cuisine with low vision (partially blind and glaucoma), autism, ADHD, and CPTSD. Living with multiple disabilities for years, Dennis has learned to be a self-advocate and knows that sharing his experiences with others can be empowering. However, this comfort took time and initially it was challenging for him to find the language and confidence to share. Even when advocating, balancing his disabilities is difficult. “My neurodivergence often takes center stage in my advocacy... It’s not that my glaucoma isn’t equally significant… but neurodivergence has been the lens through which I’ve learned to openly discuss my experiences and advocate for myself and others.” Dennis acknowledges that he’s still learning how to balance his identities.
In his daily life, priorities are adjusted based on what needs his attention most. His low vision and glaucoma take priority when physical accommodations are needed but because his neurodivergence impacts his mental health and sensory sensitivities, those needs sometimes dominate his day to day.
Jennifer Gasner (she/her)
“My two disabilities don't come with clear solutions, and that's fine with me.
I don't need to be fixed.”
Jennifer is a writer who lives with Friedreich’s Ataxia (FA) and Multiple Sclerosis (MS). She was diagnosed with FA as a teenager, MS two decades later, and is a power wheelchair user. Receiving a clear MS diagnosis took time because few doctors considered the possibility since she already had FA. Prioritizing a disability is almost impossible for Jennifer since the diseases are so closely related. At times, symptoms from one disease can mimic the other. “Some [symptoms] have more to do with MS than FA. For example, speech is affected by both as well as muscle strength. But chronic pain is one thing I have never experienced because of FA—that’s generally MS.” There are times when Jennifer has to choose between each disability specifically related to treatment. “I am on a couple of treatments that are just for one disability—nothing for both. When I was first diagnosed with MS, I did start medication that was thought to also help FA, but it did not work out for me.” To her benefit, her providers coordinate a care plan for her FA and MS.
Throughout her journey with these disabilities, Jennifer has learned to have great pride in her disabilities. She’s grateful for how her life has worked out because she’s been able to connect with the disability community and wrote a book about her experiences. Her memoir, My Unexpected Life: Finding Balance Beyond My Diagnosis, addresses her journey moving through life with these conditions.
Saran Tugsjargal (she/her)
“I remember coming home nearly every day in tears, asking myself, 'What is wrong with me?' 'Why do I have these disabilities?'”
Saran is a community leader living with Autism spectrum disorder and developmental delay since childhood. Because her disabilities are so closely related, she rarely feels like she has to choose between them. She’s noticed that the interconnection makes it difficult to prioritize even though the disorders present in different ways – one impacting her social skills and the other her learning abilities. In her youth, Saran noticed that her difficulties were not necessarily caused by her disabilities but by other people’s perceptions of her disabilities. Educators would make her feel less-than and would implement barriers that hindered her learning. Her peers were not sure how to communicate with her or befriend her. She felt isolated and invisible when she was removed from mainstream classrooms.
As an adult, Saran’s goal is to serve in the United States House of Representative. She has made great strides in this area by becoming the first Mongolian American to serve on the California Department of Education Advisory Commission on Special Education. In this role she represents over 850,000 students with disabilities across California. She is also a National Youth Fellow for the CAPE YOUTH under U.S. Department of Labor where she shares her lived experiences to help improve transitions from education to employment in five states. Despite her hardships learning to live with her disabilities, Saran shared that “I realized that if I stayed silent, my communities would continue to be stuck in these cycles of oppression.”
Each person’s experience living with multiple disabilities varies but one theme is true — each person found gratitude, advocacy, and the motivation to share their story with others.
Diversability would like to thank DLC Members Dennis Tran, Jennifer Gasner, and Saran Tugsjargal for sharing their experiences.