Awesome Humans 01 Nov
Visible vs. Invisible Disabilities
By Sarah Wise
Sarah talks about what her life is like with a disability that is both visible and invisible. To read more about the beginnings of her journey, click here.
You always want what you can’t have. If you have curly hair, you want straight hair. If you have brown eyes, you want blue eyes. If you have a physical disability, you want it to be invisible, and if you have an invisible disability, sometimes you wish it was visible. I fit between the two, visible and invisible. Sometimes I get the choice. And I make this choice based on what I want to favour - my health or my mood.
I refer to myself as a “walking quadriplegic”. People scoff, “oh, you’re not a quadriplegic!” Quadriplegics can’t walk, right? Many have a presumption about what a quadriplegic looks like -but they don’t understand that a quadriplegic can also look like me.
Friends have often congratulated me for making a full recovery, which can be deflating. I know I’ll never be the person I was before my accident, no matter how hard I try or how many hours I put into therapy. Full recoveries from spinal cord injuries are rare, and for me, it is not a possibility, and I will always have some loss of function.
Quadriplegia refers to a spinal cord injury at the cervical level (neck), where paralysis affects all four limbs, from the level of injury and below. It can cause bladder and bowel dysfunction, loss of or changed sensation, chronic pain, neuropathic [nerve] pain, spasms, a weakened breathing system, pressure sores, and more. No two spinal cord injuries are the same.
It is now just shy of two years past my accident, and to the untrained eye, on a good day, an onlooker is unlikely to notice a difference in my walking compared with the person next to me (if they aren’t in a hurry!). I look able-bodied. But I am disabled. On good days my disability is invisible. By the end of the day, fatigue has set in, my feet aren’t picking up as well as they did in the morning, so I start to trip every fourth step, my balance isn’t as good as it was earlier, my pain is increasing, and energy is escaping me. This is the point where I think, “I should have bought my walking stick”, as I feel awkward asking for a seat.
I avoid using mobility aids and devices which help me with my recovery. But when my disability is more visible, strangers make assumptions and have no hesitations in asking, “broken foot?” or “carpal tunnel?” No one has ever been correct. “No, broken neck”, I reply. I used to be more willing to give my time to educate people, but when you’re constantly asked by strangers, “what’s wrong with you?”, your patience wears thin over time. Questions like this can come across as rude, intrusive and, for me, bring up traumatic personal experiences as I’m trying to navigate and come to terms with my new life.
It is common knowledge that asking wheelchairs users “what happened?” is inappropriate. Why isn’t this the same for people using other mobility devices? As a young person with a mobility aid or when I use my hand splint, people don’t seem to consider this. Strangers are compelled to hear my story, which puts me in an uncomfortable position. Just like anyone else, I just want to go about my day without having to explain myself, answer personal medical questions or recount the worst day of my life. I often choose against showing my disability visibility to avoid these moments, as it seems to be a magnet for questions and assumptions. Other days, I need something visual to show or ‘prove’ my needs, or I simply can’t go without it.
EveryHuman allows me to choose clothing that fits in with me - both functionally and fashionably. Its adaptability is discreet; I don’t have to compromise my style. It fits my needs and makes my life easier. It’s a win-win.
Disability affects 1 in 6 Australians. Disability doesn’t have one ‘look. With more representation, I believe disability will become less ‘foreign’ to those not exposed to this demographic within their circles.
All Pictures from Sarah Wise 2021 (@sarahjwise)