‘What’s wrong with you? You’re walking funny!’ A man, obviously very drunk, shouts at me.
I am walking down the street to pick up some food. I throw a disgusted look back at him and my funny walk takes me further down the street.
I can afford to throw him a disgusted look because it is the middle of the afternoon and there are other people around. He is not a threat to my physical well-being, my mental well-being on the other hand – maybe. His words conjure a hot feeling of anger within me.
Today, my left foot is feeling especially floppy and weak. I’ve twisted it a little, its susceptible to injury. All memory of my physiotherapist telling me to put my heel down first has dissipated. My left foot still functions. It gets me where I need to go: on me-time, not able-disabled time. And my sturdy right foot drags it along like a tired parent carrying a sleepy child.
‘What? I’m just worried about you!’ He protests.
‘Thank you,’ I mutter, dry and deadpan. He does not hear me.
My funny walk carries me further down the street.
He loses interest and wanders off in the opposite direction.
Most people do not know that I am disabled when they see me. The exception here would be doctors and physiotherapists – people who I am going to see about my disability, people who have an eye for picking up on how my body does not align with that of an able-bodied person. On first glance, people assume that I am non-disabled. I tend not to correct this assumption straightaway. Partially because, ‘I have brain damage’ is not how I want to open any conversation, as the rest of the conversation will likely fall away from your memory. And you’ll just think: Scarlett: Brain Damage. Sometimes, I do not correct this assumption straightaway simply because it does not come up. ‘I have brain damage’ is not permanently at the forefront of my mind. You learn to get on with these things.
My disability is not invisible or hidden. It is visible and it is on show, always. Simultaneously, it is not always obvious to see or clear how it impacts me. It is a slightly to mildly visible disability.[1] I, for want of a better word, can “pass” as non-disabled. This means that I do not automatically face the stigma or the bigotry that people with a more visually obvious impairment are often at the receiving end of. No date is going to walk out on me at the sight of a wheelchair. My walk is rendered “funny” but no one calls me “spastic”, even though I am, technically spastic (we’ll get to that). No one prays for my healing.
Yet, whilst it may “pass” as able, my body is disabled. Often, I have relished in my ability to “pass” as non-disabled and have gone to lengths to avoid being honest about my disability. As a child, because I wore splints on my left limbs, I had to endure the prejudice that those with more visually obvious impairments are on the receiving end of. As a teenager, I felt that in not wearing my splints, I was taking off what marked me out as disabled, and could pretend to be non-disabled. But this able-bodied act has become tiring.
Because my disability inevitability reveals itself. There are things that my body cannot do that able-bodies can do. There are things that my body can do to its own standard, which will be deemed as subpar to the standard of an able-body. There are things my body has adapted to do, employing its own methods, but the result is indistinguishable from that of an non-disabled person (I am typing this one-handed, fast). I will bump into things because of my poor coordination. I will nearly fall over, bad balance. I will not be able to open that fiddly door, too two-handed. This creates a tension between my disability announcing itself visually and physically and my own desire to articulate it before it’s too late. Before you’re asking why I can’t do an apparently very basic thing like open a jar. Or you laugh and joke when I bump into things or nearly fall over. (Laughing and joking by well-intentioned people who understand you and your humour is perfectly fine). Words are my currency and my body often runs (limps) away from me and forces me to speak for it. I have stood awkwardly at the back of a classroom whilst tables are rearranged, knowing that my left side would never have the physical strength to lift or manoeuvre them. My classmates, seeing all four of my limbs, have regarded me as lazy. I have withdrawn my left hand from an expectant lover’s body, ‘good luck, that hand has no grip’.[2] I have carried food bit by bit on a tray, knowing that I would never be able to balance them all at the same time. My body with all of its limbs apparently there, makes this practice seem unwarranted. But unless you want everything to end up on the floor, it is very much warranted.
There is nothing “wrong” with me. Well, there’s something permanently “wrong” with me in that my body deviates from the constructed norm, so I deal with it. I redefine “health” for me and don’t consider limping, bumping into tables, not gripping on to things as a sign of ill-health. It’s just me. Drunk men don’t need to worry for me.[3] I was annoyed at the drunk man for being seemingly hyper-observant, for not letting me “pass” as non-disabled. I was confronted by how he pointed my limp out to me, like I didn’t know, when politer (sober) people internally ponder on what is “wrong” with me, or “why” I can’t do certain things. He noticed. He questioned. And the burden of articulating my body fell on to me again. In that case, it was the better call to give a disgusted look and walk my funny walk away. But, sometimes - I just want people to know.
I have a mild form of cerebral palsy, called hemiplegia, on the left side of my body. I have the spastic kind of cerebral palsy – and yes, there are kinds of cerebral palsy. My version results in poor coordination, balance, physical strength, and limits my mobility. I walk with a limp. My right side is longer than my left so I stand with one knee popped out to compensate for the difference. Often, my clothes fall off my shoulder and I hold myself at an angle: sheer straightness being too challenging for my body to do. I struggle to do two-handed tasks. My left limbs have a bent appearance. My left fingers are especially crooked. They are a little mindless and uncooperative, hanging around whilst my right side works a double-shift. My cerebral palsy (we think) was caused by a loss of oxygen for a short period of time during the third trimester of pregnancy. It was not the fault of my mother. It is not hereditary. It cannot be cured. It was my luck. This is not the first or last time I will say this. But it is a chance to articulate my body before we go for a walk and I limp along beside you. And that’s relieving.
Hi Scarlett. I think you have done a really important thing by writing this, because it has taught me a lot, and I hope many people read it. Keep it up, and many thanks. Ned.
Beautifully written and heart felt. Thank you for sharing. My wheelchair bound brother has had cerebral palsy from birth which severely affects his speech and movement. It is unmistakeable, a very visible disability as you say. This meant he was nor permitted (back in the 80s’s) to attend the same school as his other siblings despite the fact that he clearly has the highest IQ of all of us.
Having known people including family members and close friends who have lived with visible and invisible illness, I’m so happy people are genuinely more curious, want to learn and are having impactful conversations about both. It was a real eye opener learning how especially difficult life can be for those…
Thank you for writing this. I am sharing it with my 10 year old daughter who also has left hemiplegia.
Heartfelt and illuminating. Thank you for sharing.