Learning to Embrace My “Secondary” DisabilitiesLeave a Comment
This year has afforded me the chance to reflect on what being an advocate means to me, especially with the incredible connections and friendships I have been able to forge.
Being an advocate has also allowed me to fully embrace the two “secondary” disability identities I possess: being of shorter stature and learning about little people culture, and being hard of hearing (HoH) and learning about d/Deaf & HoH culture.
Due to the fact that I have Osteogenesis Imperfecta (OI), better known as brittle bones disorder (or “disease”; no personal preference on which “d” word is used), I am under 4 feet tall and have been hard of hearing since I was 13 years old. If I did not have OI, I most likely would be of average height and not have hearing loss.
OI has always been the “dominant” or “primary” disability because it has defined who I am medically. I was born with a broken arm, and have scars on my legs and back from rodding surgeries to curb fractures and scoliosis. (I proudly show off my legs and back, by the way – scars be damned). OI has dominated the medical decisions made about my body and my quality of life as a disabled person. Having OI has shaped me in ways that I am still learning about and have grown to love, particularly when it comes to accepting people for who and what they are.
Being short and hard of hearing has always come in second for me. Though I am under 4 feet tall, people comment on the wheels before they comment on the shortness. I never knew other little/short people growing up, so that culture and identity were foreign to me. I grew up and was surrounded by average height individuals, and the few disabled people I knew were not little/short. Even with the type of OI I have, the height characteristic is typically described as “short(er) stature,” which has become the phrasing I prefer. As I have gotten more acquainted with members of the OI community through social media, there is friction (and have witnessed very heated debates) about whether to claim the LP label, and emerge oneself into LP culture. To embrace or resist the LP identity is considered a personal choice in our community.
Having acquired my hearing loss later in life was quite an identity struggle as well. My hearing loss is structural than traditional loss (usually due to nerve damage). The bones in the middle ear do not vibrate/function as they should because of OI. My hearing loss is mild/moderate, and I rely on my hearing aids primarily when I am out and about or on calls/video chats/meetings (I do not wear them when I am home). Just as I did not know anyone who was little/short, I did not know individuals who had hearing loss, much less someone my age when I was diagnosed. That lack of visibility and connection to the hard of hearing community made me feel distant – did I really belong in a community when I did not become HoH until later?
Being an advocate, you will be exposed to individuals from across the disability spectrum, and I have had the opportunity to befriend members of both communities and learn more about the cultures of each one. As I learn and connect, I realize that I do belong within both identities as fully as I do my physically disabled one. My later in life acceptance of these identities shows how imperative visibility is to understanding the various disabilities one may have, and to be able to connect with members of those subgroups. I strongly believe that if I had had the exposure back then as I do now, accepting these “secondary” identities would have impacted how I viewed my disabled body as a whole, and not just certain parts.
Do I consider being little/short or hard of hearing secondary? No – they are just as prominent to my disabled experience as having brittle bones is. I grasp that I am a part of the visible (physically disabled and little/short) and invisible (hard of hearing) disabilities realms, as well as the congenital and acquired disabilities worlds. Possessing diverse disability cultural memberships have profoundly made my disability identity unique.
I use a wheelchair, have brittle bones, am little/short, and hard of hearing – what a beautiful combination to be.