Hemiplegia: Being "Half Disabled"

Hemiplegia: paralysis of one side of the body.

“Hemi” – Greek for half.

My hemiplegia is a form of cerebral palsy. I have left-sided hemiplegia, meaning that my left limbs are affected by the symptoms of cerebral palsy, whereas my right side is not.

Split me down the middle. One side of me, my right side, is, for lack of a better word, non-disabled. The other side, my left side, is disabled. My left has cerebral palsy; my right side does not have cerebral palsy. My left leg drags along; my left arm and hand want to scrunch up, all tense; my left fingers struggle to pick up coins, tie shoelaces, and count. And yet, my whole body is impacted by my cerebral palsy. My whole self is too. My left limbs are dependent on my right.

My left leg is dependent on my right leg to drag it along. If I’m swimming, then guess who is kicking in a way that makes my body move? My right leg. My right leg takes on a lot more of my weight than my left, my right heel embedding itself into the ground, whilst my left leg whistles away. My right hand types, my left hand sometimes unhelpfully clicks random buttons on the keyboard (work has been deleted before). My right hand ties my hair, my left hand scrunches it up, stiff and tense. When I briefly played the drums, my right hand would strike hard, my left would follow with a softer pat. Bizarrely, I have only ever had eczema on the right side of my body. Probably because it has had to touch and do more. My left hand has remained the clean hand, its distinct bend like a pose, its nails always longer than those on my right.

When I was little, people used to refer to my left side as my “bad” side. My disabled side was my bad side. Sometimes, it would be followed by a ‘whoops’, as if they’d just recognised the implications of saying that. Their ‘whoops’ translated as: I didn’t mean it like that. They never apologised or spoke to me about it, because they did not want me to notice the full implications of what they were saying. Most of the time, it was said and moved on from without any thought. At least on their part. I think that many people called it my “bad” side because it seemed easier than saying the word disability. The word “disability” can make people so uncomfortable. A “good” and a “bad” side of the body is childishly simple.

I don’t know if it was because I had a non-disabled side, a “good” side, that people would say this. My right side serving as an example of what could have been, creating an image of a girl whose body was all good, and no bad. My left side, my disabled side, was what marked me out as different. And it was what people referred to as “bad”.

Even as a child, I thought this was unkind. I never really thought of my left side as bad. I saw the relationship between my right side and my left as one of teaching. My right hand, a weary tutor (crinkled by eczema), my left hand, keen to engage, but not always successful. On my left hand, I can count up to (sort of) three (the final two/three fingers are the best of friends and must come up together or not at all). But I only achieved this by my right hand teaching my left hand how to do it. If my right hand does not simultaneously count, it is actually much more difficult for my left hand to count. My disabled side and my non-disabled side have an endearing, enduring union.

Can you be half disabled? Only half of my body has cerebral palsy. Yet, I would not be surprised if my right side coped out young because it was tired of dragging around the other half. My right side often has to work a double shift.

All of me is impacted by my disability. Because half of me isn’t too helpful when it comes to tying shoelaces, I am a pull-on boots and slip-ons kind of girl. Because half of me limps, I have a funny walk. Not to mention the social aspect of being disabled, when I was bullied for my disability, all of me felt it, not half of me. The right side didn’t laugh and say, ‘This isn’t one isn’t about me.’

But what is the point of this question of half disabled, not disabled, three quarters disabled?

There are distinct moments in my memory where I have either told people that I have cerebral palsy for the first time, or have brought it up in conversation, and people have disputed me. People have literally told me that I do not have cerebral palsy. I don’t entirely begrudge people for this: most people are unaware of just how varied cerebral palsy can be in its presentation.

One memory stands out, like a thorn, a pivotal point in which I was forced to analyse my identity. A family friend, who knew me intimately, told me that I was ‘not really disabled’.

She had framed it as a compliment. I could do so many things. I could walk. Speak without an impediment. Dress myself. I felt this compulsion to agree with her. Because I could do all those things. Although, even then, I do not have the walk of a non-disabled person. And you won’t find any clothes in my wardrobe containing too many buttons or zips or buckles (you won’t even find many clothes on hangers because they can be tricky pests).

My mind created a montage of every cruel comment, every physical pain, every struggle to do something. It felt like saying that I was not really disabled ignored my body and my life experience. It felt too simple to say that I just belonged to the non-disabled community. It felt belittling. And something deep inside rejected it.

I do not have solutions for what I have raised here. Even after I started writing about cerebral palsy, I still wrestled with this notion of being half disabled, or of not feeling disabled enough. Sometimes, I have stopped writing because of this feeling. Am I more defined by my bad arm or by my physical capabilities, which make me, ‘not really disabled’? When UP – The Adult Cerebral Palsy Movement asked me to be an ambassador, my first thought was of my status as a half disabled person. I felt like I could not attempt to represent people with cerebral palsy at all. And the truth is, I cannot represent everyone. I am limited by my body and the experiences that I have had in it. There are so many experiences that I have no clue about, or perhaps, will have a clue about later on down the line, when my disabled body is tired out by years of me treating it like it isn’t. But representation is important, even if it is limited. And although I have been specific about my experience of having hemiplegia here, I am sure that many disabled people have felt confusing emotions when it comes to how they and others perceive their disability.

I can absolutely be here for and try to represent every kid who has been told that their arm is “bad”. Your arm is not “bad”. Hemi arms are not bad; they are just hemi arms.