Friday, 3 May 2019

I'm A Wheelchair User And I Can Walk

Last month I attended Naidex for the first time, a disability exhibition for professionals and the public to see what's new in the industry and get a chance to see products in person. It brings in a wide range of disabled people from all across the UK and I couldn't move 10 metres without bumping into someone I knew from social media, it was just as much about networking as it was about doing some shopping.

There were an incredible amount of wheelchair users there across both days and whilst I was aware that there are a lot of ambulatory wheelchair users out there (wheelchair users who can walk) I was surprised by the sheer amount of people I talked to in both manual and electric wheelchairs who could walk, whether it be a a few steps, just inside their homes or out and about switching between a wheelchair and other mobility aids.

Photo by Maciek Tomiczek

My wheelchair gives me the ability to conserve energy from walking and standing for long periods of time, meaning I have energy to do other things, like having a coffee or shopping. I call it my yes chair, yes I can go shopping, yes I can go out for a coffee. Without my chair I would be unable to do these things. Using a wheelchair has opened my world back up. - Amanda, 46, Fibromyalgia & Chronic Fatigue Syndrome 

I think the main difference having a wheelchair has made to my life is that I can do things! I could exist without my chair but I wouldn’t be living. I travel the country for Mixed Martial Arts events and concerts that I know I wouldn’t be able to without my chair. And I guess that leads me onto the other thing. What I want people to know about wheelchair users who can walk, is it’s not some kind of miracle if we stand/move out of our chairs! Wheelchairs aren’t just about being able to get from A to B, it’s about being able to live a life full of adventures, and that’s what being in a wheelchair does for me. - Emma, 22, Cerebral Palsy Spastic Diplegia

Through social media I've connected with so many people like me but being presented with it in person was a completely different experience and across those 2 days I wasn't scared to move my legs or stretch if I needed to, something I avoid doing in public due to fear of people's reactions. Naidex was a safe space and it was incredible to be in that bubble, but as I left I soon remembered that the rest of the world hasn't caught up with how varied each wheelchair user's condition is yet and how diverse disability is. And so, it was back to being fearful of 'exposing' myself as being able to walk. That's definitely not how I want life to be though, so I did what I know best and I started writing.

The main issues I have are explaining to new doctors that using a chair creates such a difference in my quality of life over painful and dangerous shuffling a few metres at a time, why wouldn’t you? I was really lucky to raise enough through friends, family and a million hours overtime to buy a super lightweight active user chair that has been built just for me. That keeps me working, albeit in an adapted capacity. - Holly, 39, EDS & Dysautonomia 

This is a topic I've wanted to explore deeper on my blog for a while and when I went to Naidex I realised what it was missing. I wanted to show people what I saw there, a wide range of wheelchair users who can walk and who are in fact the majority, not the minority like much of society has been led to believe. So many people think of wheelchair users and think spinal cord injuries and being paralysed, they think of something binary. You can either walk or you can't walk. But this couldn't be further from the truth.

It took a really (really) long time to come to terms with the idea of being a wheelchair user. I spent years forcing myself to walk, causing so much unnecessary pain and fatigue because I thought that if I 'ended up' in a chair it was my own fault for not working hard enough at keeping my body strong (something physio had pretty much told me when I first got diagnosed). This mentality stayed with me as my body did decline, and it was only through small experiences using a wheelchair at an airport, or my mum forcing me in one to get me out of bed and look around shops, that I realised it could make a huge difference to my life. From the moment I got my chair, I was annoyed with myself that I'd held out for so long. To me, my chair gives me the freedom to go out for 5 minutes without ruining my entire day. It allows me to be in the office at work without it knocking me out for 3 full days afterwards. Using a chair isn't about being lazy or not trying hard enough. At the end of the day, to me, it's about reducing suffering and increasing how much I'm able to participate in not only outside life, but my own. - Natasha, 30, EDS with multiple co-morbidities

I started using a wheelchair when I was about 17, it was for things like shopping and supermarket trips at first, places which involved a lot of walking and not many places to sit along the way. It was a transit wheelchair donated by a friend of my Mum's and it really opened doors for me. I was between surgeries and I'd been forced to leave school so my once weekly trips on the weekend were the one thing I often had to look forward to during the week. After my hip replacement we expected me to be walking without any mobility aids but that's when my current chronic back pain started. I pushed through on crutches for a while but ended up being stuck inside all week again and so when I received my ESA backpayment, I used it to purchase a manual wheelchair I believed I could push myself. I could manage to on smooth services but I couldn't use it independently and so the cycle began again. Each time I got more and more freedom but nothing really changed my life in the way my current powerchair has.

I have only had a wheelchair around nine months but the difference it has made already is amazing.  People assume my condition must have got a lot worse as I am now using a wheelchair. It hasn't, the wheelchair if anything makes me better. When use it I have less pain, less fatigue and most importantly more freedom. I wish more people realised that wheelchairs can be preventative, they aren't just for the end of the line. They can stop you getting there so quickly. - Kate, 35, Pigmented Villonodular Synovitis

At first I used crutches when going out but found it all too tiring and would be bed ridden for a couple of days after.  My life became so much easier when I got my power wheelchair as I’m able to take it on the bus and days out cause me a lot less pain and exhaustion.  However I am often scared to stand in shops to reach shelves as people tend to look disapproving like I’m faking. - Debbie, Spinal Disc Compression & Fibromyalgia

I use my powerchair all the time outside my home and inside my home I walk. I live in a largely inaccessible home with stairs, far from ideal with my condition and pain but I make it work because I have no choice. I don't tend to use mobility aids inside my home, we have a lot of grab bars and rails and I lean on walls and furniture. I could use my crutches but I find the pain it relieves in my back is not worth the pain it causes in my shoulders, arms and hands. You could come into my home and quite easily decide that I'm not disabled, that I shouldn't be a wheelchair user because I don't need my wheelchair inside my home. But without my powerchair I wouldn't get further than where the grab rails stop at the end of our path.

I began presenting with symptoms at age 20 in 2010. I fought the inevitable changes as long as I could. Even pushing past tears to appear “normal" because I wasn’t ready to be different. My mother had to force me to use a manual wheelchair. To my surprise once I got past the embarrassment I realised it gave me back my freedom. The only downside were the unkind comments and the scepticism. Many suggested I was faking and would express their disgust.  This had a detrimental effect on my self esteem and I stopped going out because I feared being judged. I want people to know that using a wheelchair allows me to get around easily without excessive pain. Please when you see a wheelchair user walking please don’t immediately assume they are faking. There are many disabilities that are invisible or present with intermittent weakness. We are simply trying to live life so I really want everyone to be mindful of your words and if curious please kindly ask. - Emerald, 29, Mitochondrial Myopathy 

I feel like I'm most empowered I've ever felt right now and I'm certainly the most comfortable with my disability that I have ever been. I love my powerchair and think it's so badass but it feels like being comfortable with being a powerchair user who can walk is one of the last hurdles for me to tackle and I'm definitely not alone in struggling with this as you'll read from everyone who has shared their experiences and stories for this post. I still almost feel like a fraud, I question my disability all the time and question whether I really need my powerchair, despite knowing deep down that without it I'd be housebound. But that's what happens when you live in a society that is so quick to brand something they don't understand a lie, you start to buy into that too.

My wheelchair is my lifeline to the outside world; without it I would be completely isolated and unable to participate in society. I have been using a powerchair for about four years and had manual chairs before then that I required somebody else to push. I have a long list of chronic illnesses that cause chronic pain. I’m in pain every single day. Some days it’s worse than others but every day I need mobility aids to get around. And whenever I go outside, I use my powerchair. I can walk but not unaided and not for long. Using crutches causes my shoulders to dislocate, puts pressure on my wrists, back, hips and knees, and leaves me in agony. My powerchair doesn’t do any of that; my days out in my chair are longer, more comfortable and much more enjoyable. I use a powerchair but I can walk and I can move my legs. People use wheelchairs for a variety of reasons, mine are pain and fatigue. - Sarah, 32

I waited a long time before I went into the chair almost full time. It took me 3 years of huffing and puffing. Pain, dislocations and fainting before I decided that maybe using my wheelchair might actually be good for me. And you know what the second I used it more I felt like I had more energy. I could do more, go further and when I wanted to I could stand and walk a little pushing my chair. It opened up the world. Yes I get funny looks when I walk pushing my chair. But those people do not know what my body is doing or the pain I am in. I don't care about those people anymore because now I am living my best life and I am able to do more. I have travelled the world and now I am getting back into work because I am not living a lie trying to walk everywhere and breaking my body. - Fuchsia Aurelius, 34, Vascular EDS & Spinal Damage

I can almost understand why those who walk with no trouble could find it confusing to see someone supposedly 'give up' walking when so many couldn't see their life without that ability but, when walking is painful, difficult or fatiguing, you start to view it in a different way. It starts to become something you fear and avoid. And rightly so, if you were in pain you would take painkillers to manage it so why is using a wheelchair to manage things like pain and fatigue any different?

Thursday, 28 February 2019

Going Back To Education With The Open University

It was during my GCSE year at school that my body first decided to start being a pest, I was diagnosed with scoliosis (curvature of the spine) a couple of years previous but it was during my most important school year to date that the chronic pain began. Surgery was booked for the Summer holidays so I could miss as little school as possible, and then cancelled hours before, and I finally had the corrective spinal fusion surgery in December, a few months into my A Levels. The recovery was meant to be 6-8 weeks, I should have returned to school after that time but I never did go back thanks to a slow to be diagnosed complication and the need to have a second surgery to correct it. Ever since then I've been aiming to return, additional surgeries and chronic pain have made that challenging up until now though.

Anyone who knows me well knows just how much I thrive in education, I absolutely love learning and have always enjoyed school as a result. Ever since I had to leave I've been soaking up knowledge wherever I can, with free online courses and plenty of reading, but it's never the same as being tested and challenged in an educational environment. I truly started to believe I would never return to education, but after 5 years of waiting I finally think I'm ready.

Studying with The Open University is something I'd been considering for several years and last month I don't know what triggered it but I found myself on the website looking at my options. When I saw that the deadline for applying for the next starting date in February (and that I wouldn't be able to apply until October after that) was just a few days away I decided to be a little spontaneous, and perhaps a little reckless, and I applied. It was an Access module I had applied for, a module I describe as me dipping my toes in instead of diving straight into the deep end with a degree. Deciding what to study might be the difficult part for some people, and it certainly had me thinking whether I'd made my decision too quickly, but Psychology and Sociology were 2 of the A Levels I started for several months and are subjects that have intrigued me for years and I've spent a lot of my own time reading up on them over the past few years. So, when I saw they did an access module centred around these topics, it was a no brainer.

The access module is a 30 week course made up of around 9 hours of studying each week, so it's a more gentle introduction into education for those of us who are lacking confidence, have been out of education for a while or didn't complete A Levels. It's a free course if you meet the criteria and are signed up to a full qualification, in my case I'm signed up to start a Psychology degree in October so far. Whilst I don't have to start the Psychology degree, of course the aim is that I will but it all depends on how I manage with the access module!

Right now I'm absolutely loving it, it's not challenging me as much as I'd like but that was to be expected since it's designed for people who have been out of education a lot longer than my 5 years. For me it's about building confidence though, just reminding myself that I am capable. The module is mostly about learning skills, things that I would have picked up during A Levels had I completed them, like essay writing, referencing and keeping to a deadline. I think all the writing I've done for my blog and other publications will really come in handy but I'm definitely ready to build upon it!

My first assignment is due next week so I'm working on that right now and I'll maybe pop back in a few months to let you all know how it's going but of course, the best way to stay updated is to follow my social media (@shonalouiseblog for Twitter and Instagram).

I can't tell you how excited I am to be in education again, let's see how these next 6 months go!

Learn more about The Open University on their website.

Thursday, 14 February 2019

The American Clock at The Old Vic | Review

These tickets were kindly gifted to me by The Old Vic, however I am under no obligation to review the show or discuss it.

I think it's clear from looking at my blog and social media that I'm more of a musicals person when it comes to theatre but my wonderful experience of seeing A Christmas Carol at The Old Vic last month had me intrigued as to whether I would enjoy plays more than I had imagined I would. So, when the theatre kindly invited me back recently to see their latest production, The American Clock, I couldn't say yes fast enough, especially once I'd done a little reading and found out it centres around the great depression, something that fascinated me during history lessons at school.

'For them the clock would never strike midnight, the dance and the music could never stop...'

The American Clock turns, fortunes are made and lives are broken. In New York City in 1929, the stock market crashed and everything changed.

In an American society governed by race and class, we meet the Baum family as they navigate the aftermath of an unprecedented financial crisis. The world pulses with a soundtrack fusing 1920s swing and jazz with a fiercely contemporary sound, creating a backdrop that spans a vast horizon from choking high rises to rural heartlands. 

Visionary director Rachel Chavkin (Natasha, Pierre & the Great Comet of 1812, Hadestown) presents Arthur Miller's ground-breaking play about hope, idealism and a nation's unwavering faith in capitalism. - The Old Vic 

I have to applaud the triple casting of the family that this play centres around, the Baum family made up of Rose, Moe and Lee. It was a clever way of adding something extra to what is a fairly lengthy show, with a running time of 2 hours and 45 minutes. I was particularly impressed by Clarke Peters performance, he had the audience glued to him whenever he spoke. It was Francesca Mills who has stuck in my mind though, her performance in all 8 roles she played within the show truly blew me away as she demonstrated how versatile an actress she is, each character was distinguishable from the previous. As it was with A Christmas Carol it meant a great deal to see a disabled actor on stage, I truly applaud The Old Vic who seem to be far more committed to diversity on stage than most theatres.

As for the set, the revolve truly stole the show. It's been a year since I last saw Les Mis and appreciated the beauty of a revolve so it was a treat to see it being used so creatively within this production, and so smoothly too. There wasn't any sign of a wobble as they danced on the revolve as it spun around, mimicking a clock.

I'm not sure whether this is down to me favouring musicals or an issue with the play itself but I really struggled with concentration throughout, it felt a little never ending at times. 2 hours 45 minutes is a long running time, even for some musicals, so I was predicting that I'd perhaps struggle with the length and it was definitely a problem. I felt as though there was a lot of script that could have been cut, there were long scenes that seemed to serve no purpose and led to nowhere. Whilst I appreciated how much I learnt about this era I was hoping for a little more of a structured plot, it began to feel like just a history lesson at times.

This is such an important piece of history though, something that should never be forgotten and therefore it belongs on stage. If you have an interest in the era and can handle a lengthy piece of theatre, then this might be the show for you. Unfortunately I just struggled to grasp what others have seen in the show, but I was truly blown away by the quality of acting within it. 

The access at The Old Vic is largely the same since I last visited. I was in the same wheelchair space (N6) with a brilliant, up close and clear view of the stage. The work to improve the access at the theatre, as well as increasing the number of ladies toilets, has well and truly begun and many parts of the theatre are currently shut off. Access for wheelchair users has not changed though, it is the experience of everyone else that is a little different whilst the work is taking place. There are temporary toilets just outside the theatre and the bar has been moved into the auditorium, everything has been so well organised and you'd never know the extent of the work going on behind the scenes. I really applaud how well The Old Vic are handling the situation. 

The American Clock is playing at The Old Vic until March 30th. Find out more about the audio described and captioned performances on their dedicated access page.
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