12 Things I Wish People Knew About Navigating Life With Multiple Disabilities
I live and interact in a society and communities where ableism is implicitly and explicitly present almost everywhere. Often I find myself spending a lot of time navigating life, particularly with multiple disabilities and intersectionalities of race, sexuality, gender identity, socioeconomic status and more. Who I am as an individual is made up of and expressed through all these integrated intersectionalities.
I am autistic and live with a rare genetic neurodegenerative disease, rheumatoid arthritis, depression, anxiety and PTSD. Each of these conditions brings traits and challenges. When navigating my day, I have to consider the impact of all aspects of my disabilities to best figure out what will work best for me. This navigation takes up a lot of energy for me and is often hard to explain to others.
I continuously experience various problems across different settings trying to myself and access what is best for me due to societal inequality of the subscribed notion stereotype of “fitting into a box” that creates further systemic barriers. As I still hope and advocate for changes and a more equitable future, my experiences led me to 12 things I wish people knew about navigating life with multiple disabilities.
1. “I am a person first, and who I am as a person is not fully defined by any single or multiple diagnoses or perceptions.”
2. “Don’t limit me because of systemic societal assumptions and stereotypes.”
3. “For me, accommodations are often not a one-stop-shop checklist that I can just check off what is needed.”
4. “I have found my day requires a lot of flexibility and checking in with myself and if a need to change or alter plans at any time due to needs related to my multiple disabilities. Please stop asking me for proof of my disability or details for me to prove I am not lying.”
5. “Using my mobility and other assistive devices doesn’t mean what I am doing counts less.”
6. “I have disabilities that are visible and invisible; all of them impact me.”
7. “Include me in conversations — and not just because it is disability awareness week or month.”
8. “Fully include me when I am using augmentative and alternative communication, like my notepad or iPad.”
9. “I am creative and resourceful.”
10. “Be aware of and stop using me as inspiration porn explicitly and implicitly.”
11. “Navigating resources and support is exhausting and can feel like a full-time job at times.”
12. “I wish I saw myself, in all of the intersections of who I am, represented in the society I live in.”
Getty image by RossHelen.