wlmvoices-blog

[wlmvoices-blog]

I hear you call. You’re in the bath. “Would you rub my back Lux?” One of our trips back home we were on a beach and you found this rock, perfectly oval and porous like pumice, we brought it home and whenever you had the opportunity to bathe you’d ask me to use it to rub your back. It took a certain amount of care, the right pressure, your skin so soft and smooth, always so. Whenever someone wants to feel your skin they always go for the elbows, true test of beautifully soft skin. You have medium sized brown moles on your back, that I trace with my eyes, I’d trace them again years later with my fingers in some of the final moments. I enjoy the sound of the water. My hand on your shoulder, the touch of your skin has this power in it and has bonded us since we’ve been together. I squeeze you as I leave. “Thanks Lux!” Little do I know this will one day be one of the final things I do for you, perhaps it was just as much for me as it was for you.

The thing about grief is, is it's just like that, a memory which seeps into your mind at any given moment. In the very beginning it was cataclysmic, a bank of daisies on the side of a road, always find yourself under an oak tree, a certain smell, remembering you walked down a particular stretch of road, taking your dad to coffee one morning and realising you had both sat in the exact same places in a particular cafe you'd sat with mum previously, these fragments of a life once lived that send your body crashing. When they describe it as waves crashing over you, it is exactly that, you seek fragments to keep you close to the person you've lost but the danger is any small fragment can lead to a great big wave.

The hardest thing about grieving is its isolation, having just passed the 1 year mark I can say this part hasn't changed. So many people just don't want to talk about it and there is this unspoken pressure to just move on. Some days I don't want to see anyone. Some days I don't want to be happy. Some days I just can't control the fact that my body feels exhausted and I just want to curl up into a ball and barely leave my bed. Some days I don't want to explain this. Some days I do, but it feels like I'd upset the person listening, not because I haven't tried, but experience has taught me this is so. Some days I just wish I could hug her. Some days I lose friends. Some days I just cry, a lot. Some days I just enjoy the ones who remember I lost my mum. Some days I have to remind myself to be kinder to my body and mind because it needs to go through this process. After all, a year really isn't that long.

Some days I will get up and be happy. I'll remember my mum's beauty and be reminded that lives on in me. Some days I talk about her a lot. Laugh a lot. Smile a lot. Speak to mum a lot. It's just each day is different, and it takes time, to trust and comprehend a world without someone you love. We've been bonded since I existed, after all, a year really isn't that long.

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Words by Laxmi Hussain

[wlmvoices-blog]

Growing up, I always felt my body and brain were just a bit off. A bit wobbly, like a tooth. Nothing quite fit into place, and sometimes my body hurt. Sometimes my brain hurt too. I was diagnosed with depression and a sub-type of OCD when I was 8 years old. Not long after, crippling anxiety arrived too. And then with the dawn of weird armpit hair and widened hips, my ankle started dislocating. I used to dance, it was the one thing that took my mind off my mind. And then I couldn’t dance, either. And then everything amplified, and I got more sick. More bits of my body fell out of place. More bits of my brain followed, too. I was too scared to go to the doctor about my brain, because they never believed me when I told them about my body. So I quietly sat through a sea of dislocations and ideations, misuse and abuse, until I was 20 years old and begun to understand who I was.

At 21, I was finally diagnosed with a condition called Ehlers-Danlos syndrome. It means my body doesn’t make collagen properly, the most abundant protein in the body. It took me beginning a degree in genetics, seeing five different doctors at three different hospitals to get diagnosed. Sometimes I still refuse to believe I’m sick. When you’re told you’re lying for so long by so many different people, you begin to believe them. I tell people about the pain I’m in and expect them to laugh in my face. Right now I’m on 7 different types of medication.

I moved to Scotland after finishing my undergraduate degree. I started a Master’s. Both my knees fell out of place and I learned to walk again, whilst writing my thesis. Bits of the 2016 Olympic games commentary is still hidden away in it, I was so high on pain medication. A mentor at work told me I was making everything up. My mental health problems reared their head, and I was eventually diagnosed with complex post-traumatic stress disorder. This took four years. I was having flashbacks everywhere, the supermarket, in my lab, in my living room. I stopped doing my PhD and sat catatonic in the disabled toilet for 6 hours a day. I re-developed an eating disorder and body dysmorphia, and shrank to nothing, hoping to disappear completely. But that changed.

I’m a new person now, maybe. Or I’m the same person I always was, but now the dust’s been washed off and I can finally objectively understand who I am. I’m finishing my PhD, I am a photographer, a science journalist, a (failed) skateboarder, a (terrible) comedian, a (mediocre) vegan cook, an (angry) activist. I’m greater than the sum of my parts. I finally found some medication which lets me do my life as I want to. I’m still disabled, still neurodivergent, but it’s different now. I have an incredible support network and the kindest friends. I have a good workplace environment, and a beautiful place to call home. I am privileged in my comfortability, my support, my world-view. I never thought I would be able to feel how I do now. I have struggled, but as a white woman I have ridden this journey with ease, compared to so many other people.

My body has been a battlefield. But you couldn’t tell by looking at me. My body has carried me through unbelievable loss and soaring gains. My brain hasn’t always let me see my body for how useful it is. I haven’t always seen the incredible things my brain is capable of. I don’t love my body by any stretch. But I finally don’t hate it. The scars, stretch marks, snaking split-veins and birthmarks, the fact my toes make a perfectly diagonal line and the lumpiness of my legs and the freckles on my nose and the permanent tan lines on my middle fingers. My weird little fingers that don’t work properly, but somehow still let me play the guitar. My lips that I inherited from my grandad, my wonky ears and my pointy head and my clicky wrist and my crunchy spine and my silly brain. Capitalism and patriarchy profit from my socialised insecurities, and always will do. It’s up to us to try and change that with miniature acts of radical self-indifference. Our bodies and brain will often betray us. But I don’t feel like mine will again. Even if it’s just for a little while.

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Words by Emily May Armstrong

[wlmvoices-blog]

I became a wheelchair user when I was nine years old.  Born with cerebral palsy, and unable to walk before the age of four, I’ve never experienced how it feels to be non-disabled and have therefore found it relatively easy to take ownership of my impairment and be proud of it; it’s all I’ve ever known.  Our family home videos from twenty-odd years ago include the usual birthday parties and holidays, but are also full of evening living room recordings of me and my twin sister, who also has cerebral palsy, cheering each other on as we slowly made it from one side of the room to the other in our specially made medical boots, before flopping down in happy exhaustion to clapping and praise.

During the last couple of years in primary school, just before the turn of the millennium, my parents (now separated) and I had a decision to make.  Following an exciting medical breakthrough, a new operation was on offer for children with cerebral palsy.  By breaking thigh bones and lengthening hamstrings before pinning and plating everything back together, certain young people would eventually be able to walk like their peers, and I was viewed as the perfect potential candidate.  It was quite a moral dilemma for a nine year old; I knew full-well that, without the operation, I’d end up using a wheelchair sooner rather than later.  My knees were starting to knock together as I walked, I was losing height rather than gaining it as my weak leg muscles were struggling and straining to keep me upright, and I had fallen backwards and cracked my head open so many times that a meeting had been held between my parents and the school to discuss whether I should be walking around wearing a bike helmet, just in case…

I had the operation on the 2nd January 2001 at Sheffield Children’s Hospital.  My mum and I arrived on New Year’s Day and spent most of it running up and down the ward.  I knew that, regardless of how well the operation went, it would be the last time I was on my feet for a good few months.  We were both nervous of the unknown, the dynamics that would change and the parameters that would be shifted.  The consultant told me that it was a very big operation and I could die, but there were all these lovely people giving me loads of attention, and well as the promise of numerous cuddly toys and my turn on the ward’s playstation if I survived (this I was particularly excited about as we’d never been allowed video games at home.  I knew that if mum was going to be lenient, a five hour operation and two broken legs in cast were probably going to do the trick!)

Operation day is a bit of a blur.  I remember an emerald green minty liquid that made me so woozy I had to be lifted onto the bed to take me to theatre.  I remember total relief when I woke up, and mum rushing in to cuddle me with the same relief on her face.  I was paralysed from the waist down with an epidural, but the numbness didn’t quieten the fluorescent-green casts that ran from my groin to my toes, with a broomstick in-between them to give the lower half of my body a distinct starfish vibe.

A year later, after a second operation, sleeping in the living room, being home-schooled by a woman who always complained about the temperature of our home and realising that my stepdad must really love my mum as he was willing to haul me on and off a commode numerous times a day, we went back to the consultant at Sheffield.  He was disappointed.  I wasn’t as strong as I should have been and my leg muscles had started to permanently waste away, even though we’d done everything he’d asked of us (including regular painful walks around the block once the casts had been removed).  Mum and I got back into the car and sobbed.  From sadness, anger, frustration and a feeling of total helplessness.  Limitation was to be part of our lives now, and a wheelchair would take centre stage.

...

The first real instance of discrimination I experienced as a wheelchair user was in my first year of secondary school. I was twelve years old, well-liked by my peers, but seen as much more of a tom-boy than a love interest.  I hung around with the boys at break time, but none of them ever wanted to kiss me. I remember one telling me that he thought I had an ‘awesome personality’ and rapidly following that with ‘of course I don’t fancy you, though’.  I didn’t even take offence; of course no-one would, I understood that explicitly.

At the end of the school year, there was to be a trip to Germany.  Everyone was encouraged to apply and, should there be too many applicants, names would be picked out of a hat one lunchtime to make things fair.  We all eagerly awaited the results.  That afternoon, every student that had applied had been accepted onto the trip…apart from me.  Naïve and thinking very little of it, I went home to tell my mum and stepdad the news, who immediately wrote and sent an angrily eloquent letter to our local council, explaining that they would not accept or allow this prejudice.  The next day, we received a call from the headmaster ensuring us that I would be travelling to Germany with everyone else (apparently the school had decided that paying for a support worker for me would be too expensive, and they quietly left me out of proceedings, hoping that no-one would notice).  It was then that I realised I would have to fight a little harder for fairness and equality in all aspects of my life, but I knew I would never be fighting alone.

Years later, a significant event truly solidified my identity and confidence as a disabled person.  At the age of sixteen, I was nominated by the head of Special Educational Needs at school to go to southern Africa with a charity aptly named the Journey of a Lifetime Trust (JoLt).  With twenty three other young people from the UK who had experienced emotional or physical disadvantage in some way, I climbed sand dunes in Namibia, taught school children in Lesotho and cage dived with sharks off the coast of Cape Town.  I made close friends with a fourteen year old boy who had spent a good chunk of his life living in and out of women’s refuges with his mum and brother.  He’d seen horrors I couldn’t even imagine, and we formed a bond on our ability to help one another.  He was physically very able, and dragged me over sand and rocks.  I returned the favour by listening to him recount his childhood and working through his troubles with him on our numerous eight hour bus journeys through red sandy scapes.  It was then I realised my capabilities as well as my limitations.  I was unable to hike our mountainous surroundings once we got to Lesotho, and ten years on, that’s still the case.  But I did have strength in other areas: communication, comfort and showing resilience when it was most needed.  The summer of 2008 with the JoLt charity taught me to focus on those strengths and not on my physical limitations and, in turn, encouraged me to take pride in my disabled identity, regardless of how it was valued by society.

...

Difficult, internal thoughts I’ve had throughout the years have often focused on my sexual identity as a disabled woman.  I vividly remember lying in bed in my mid-teens and feeling sick with worry that I’d never have a boyfriend or lose my virginity.  Before meeting me, a boyfriend I had in my early twenties googled ‘how to kiss a wheelchair user’ and finished the relationship three years later whilst we were travelling in Bali, by telling me he felt more like my carer than my boyfriend and that I’d been weak on the trip due to a lack of access.  After he called me to say he wanted to try again, a close relative advised me to ‘really think about it before you make a decision; you might not find another able-bodied boyfriend’.  Not only was the whole experience heart-breaking, more importantly it shattered my confident internal identity as a disabled woman that I had worked so hard and for so many years to build.  I’d always felt pretty, but never sexy or particularly womanly.  People would meet me in bars and comment on my hair or style, before asking me whether or not I was able to have sex.  Having a disability sadly appeared to make others think that I was public property.  I was infantilised or fetishized, a ‘tick’ on a sexual bucket list, but rarely normalised or appreciated as such.

...

If I had a magic pill, there are many things that I’d change about myself and the world before I reversed the fact that I am a wheelchair user.  Having a disability undoubtedly affects every single aspect of my life: where I live, the work I’m involved in, the car I drive, the people I meet and have relationships with, the places I can travel to independently and whether or not I will be able to become pregnant and parent a child one day.  But my impairment also affects every part of my outlook and has allowed me to self-reflect and be unapologetically proud of who I am.  I am positive, strong, driven, passionate, warm and loving.  I just so happen to not be able to walk, and that’s totally fine with me.

...

Words by Emily Rose Yates

Photos by Lydia Petersen

[wlmvoices-blog]

I wrote most of this in my head when I was staring at a hinge.

I was a size 14 when I was 13 years old, I was 6 foot tall at 13 years old. I walk 4 miles a day, I eat 2000 calories a day. I drink more than that at the weekend. I go to the gym, I swim, I do yoga. I lift weights. I am strong. I lose and gain about 2.5 stone over a year. If you want to use my body like a sundial it is usually at its smallest around September. I was brought up in a world where thinness directly equated to success.

I was offered the opportunity to do this work above and it’s something that goes very against my own tide. I thought that maybe I would find the empowerment people talk about, I would be shocked and find my body beautiful but I didn't, and I still don't. But I know now this doesn't come from me, it is built in with the bricks, the architecture of the patriarchy. To be honest the whole process made me feel sick and the thought of it still does, that sickness actually translates to fear and shame if unpacked. I shouldn't have to profile all these emotions before posting a picture of myself on the internet. Lydia gave me the opportunity to address these things and through the process I have realised that it has been the longest time coming. I will be eternally grateful for that.  I have had the privilege of doing this supported by the people I adore and who I have the complete luxury of being kept alive by their love and tenderness. I also have the privilege of experiencing these things as a white woman, that reduces the severity of this situation immensely.  

My partner says when I am thinking about things I have the conversations with my face. I silently move my eyebrows up and down while I argue the for and against. And I know I am doing it now, as I lie on the floor staring at a hinge in the centre of a life drawing class.

I know my forehead is creasing up and down as I wrangle with how aggressive this all sounds.  I am angry that it has to be this way. Like I am drowning the positivity in body positivity. And that we all have to justify our acceptance of our bodies by parading the shame out that has come before. But I think about the shit people say and it's time to walk over it.

I was told by a partner of 6 years that I could never meet their friends and family back home because I was too fat, it would be embarrassing. I was told by an old friend that they thought it was really impressive that the amount I had managed to achieve because of my weight. I was told frequently that the reason why people didn't like me at work was because I was fat. I will never sit on a stool because one time a guy came up to me in a bar and told me I was going to break the one I was sitting on and hurt the ‘fit’ girl next to me. I was a size 14. Most arguments I have had with other women have ended with, you’re just jealous because you are fat. People have tried to kiss me as a dare.

I don't want sympathy for this. If I see you I don't want you to discuss it with me, as with all power imbalances I would just like us to all work together to eradicate this from the day to day.

My body, is my body, is my body, is my body. It is the body that gets me up in the morning. It is the body that takes me to the places full of the people that I love, it is the body that takes me away from the people I don’t. It is the body the makes my work, it is the body that sits with others, it is the body that fucks others.

It is the body that is being drawn by 8 strangers as I write this in my head.

If you haven't heard these words from womxn before, do your research. If you haven't heard these emotions from a person of colour before, do your research. If you haven't heard these emotions before from the queer community, do your research. If you haven't heard these emotions from marginalised communities, do your research. These conversations exist everywhere. I am not the first person to face this oppression - there have been endless words and endless fury generated and internalised due to this systematic pressure around body size. Misogyny. Patriarchy. Take notice. By not noticing you are oppressing. Inaction is equal to oppressive action. We don't have time to fuck about anymore. We never did, but given our ability to share information now - the excuses are gone.

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Words by Elizabeth Murphy

Photographs by Sean Patrick Campbell