Hemiplegia: Being Half Disabled

Richard_Scope

Scarlett Murray talks about her experiences of living with hemiplegic CP in her most recent blog post.



[A woman with brunette hair sitting with her knees tucked in towards her chest]

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.

Annie39

Hello,  I have Hemiplegic CP which like you affects my left side but as I am getting older I am experiencing more pain/spasms and cramps. What you have written I can completely relate to, Thank you.

ShirleyW

I have just read two of Scarlet's blogs and found them really good.

She has a wonderful way with words.

L_Volunteer

Thanks @Richard_Scope for sharing this resource with us. I can hear how many of our community members it has touched, and maybe even helped. 

If anyone wishes to share any other feedback, please feel free. Also, please don't hesitate to reach out to us if you have any questions or concerns or want further support 

Poppy_

Thanks @Richard_Scope for sharing this. 

I also resonated with this, even though my cerebral palsy mainly affects both my legs, although I do have issues with fine motor skills with my hands, as while both my legs are affected, it is in similar, yet not in the same way. For example, my right knee locks more then my left and my left spasms more then my right. 

2cats25

I have left -sided Hemiplegia CP and understand the feeling of not being disabled enough for some people. I particularly remember being at a Xmas party held by The Spastic Society (as was) when I was about 8 years old. I overheard some mothers saying that I wasn't disabled enough to be there, and I'd taken the place of someone more deserving. That remark stayed with me for decades and stopped me discussing my health issues and convinced me I had a foot in both camps (pardon the pun) and might never be fully accepted. I'm 63 now and don't know where to go for practical help...I'm trying to streamline my house as it's full of trip hazards. The NHS appears to have nothing to offer me regarding treatment (been referred to Rheumatology and NeuroSciences Depts and the pain clinic and been told there's nothing to offer me, only stronger pills) It makes me fear for the future.

Alex_Alumni

Thanks for sharing @2cats25 I can resonate with your feelings about having a foot in both camps, it's a feeling I struggled with while growing up with CP myself. 

I wonder if UP: The Adult CP Movement might have some useful resources or contacts you could look into?

Feeling unsure about the future can be worrying, especially when it's not clear if any support is available. Do you have an occupational therapist you can speak to about trip hazards in your home? What sorts of things are causing the biggest issues at the moment?

Richard_Scope

Hi @2cats25
I can absolutely understand your feelings about the future and I would recommend an Adult CP Review. Scope has partnered with the Bobath Centre and I have had a review myself. We have also created a leaflet that you can take to your G.P. that explains everything.
Find out more: The Bobath Centre - Annual review
Patient Annual Review Infomation Leaflet: https://bit.ly/3G8rCP8

JudithL

Thank you for posting this Scarlett. I have right sided hemiplegia, but the only noticeable effect is in my arm. I recognise lots of what's in your blog. I've sometimes felt I fall between two stools...Not disabled enough to be disabled, or abled bodied enough to be able bodied. For a long time I simply acted as if my disability didn't exist, it's been slight enough to do that. With age I've had to learn to acknowledge it and embrace it both physically and mentally, that's been quite a journey. It means I've had to adjust and so have my friends. I'd say most of the work has been inner work, about me coming to feel more comfortable with it within my self...It's an ongoing work to accept the body I have as a whole entity...It's important to me to be the one defining what that means rather than accepting other peoples' definitions...I think when I feel comfortable with it I'm not bothered by other peoples' perceptions of me... That has become easier with age...

Cplife

@Annie39
this is me too I have hemiplegia cerebral palsy of left hand side and now I’m 53 I am really feeling the effects on both left and right I have osteoarthritis now and have just been diagnosed with ADHD the pain and muscle spasms are harder to deal with now I’m older I also find if I do to much walking I feel like my whole body is shaking. 😊