Friday, 15 June 2018

Pants Down 4 Equality | The Changing Places Looathon

When it comes to disability rights my campaigning has been based largely online throughout the past few years: signing petitions, writing blog posts and articles, tweeting and generally using my voice online. That changed last month though as I was finally able to attend a disability rights campaign in person, which was largely down to the delivery of my new powerchair in February! As soon as I heard about Sarah Brisdion's latest idea for raising awareness of Changing Places I knew I had to attend. I had the pleasure of inteviewing her a couple of months ago after the success of Loo Advent, where she took photos of herself sitting on a toilet everyday throughout Decemeber, she even had a few famous faces get involved! All of it was to raise awareness of Changing Places, a type of accessible toilet with a hoist and height adjustable changing bench, that allow her son Hadley and thousands of other disabled people to live the life they want to. The problem is though, there's nowhere near enough of these facilities. So, we took to the streets to raise awareness in a way that was guaranteed to get heads turning.

I've talked about Changing Places on my blog ever since I came across the campaign about a year ago, which is mainly led by a group of parents who have disabled children. You see, without Changing Places parents are having to meet their children's toileting needs on the floors of dirty toilets, and some disabled adults are even having unnecessary surgery to have permanent catheters placed because the lack of Changing Places limits them so severely in day to day life. We live in a world that is getting better with pushing for equality but as I have said before, disabled people are being left behind and this is just one example of that.

A blog post I read recently on this topic really broke my heart, and I think everyone should read it to understand how important this issue is. Rachel, Mum to Adam who is a wheelchair user, has a blog called Ordinary Hopes and in February she wrote a post titled 'The worst loo...'  in which she talks about the worse experiences Adam and herself have experienced when it comes to toilets, with the worse experience being a heartbreaking one. I think it really sums up why this fight is so important and why Sarah chose a form of campaigning that put herself and others in an uncomfortable position, because if people think sitting on a toilet in public is undignified then they should listen to the children, adults and parents who have to go through far worse every time they need the toilet.

Thanks to Dominic from Review My Wheelchair for taking the 4 photos above

We managed to make quite a bit of noise and it made on to the news on the day itself, as well as being covered online. It's difficult sometimes to know whether these campaigns make a difference but I think it's clear to see that since I first covered this issue a year ago progress has sped up a lot and new Changing Places are being installed all the time now. The fight is far from over but I think we're finally starting to see the results of a lot of passionate campaigning.

You can learn more about getting involved on the Changing Places website, you can do everything from signing petitions to contacting businesses and MPs to help get more Changing Places installed!

Wednesday, 6 June 2018

Behind The Scars

Back in April 2018 I took part in quite possibly one of the most terrifying things I've ever done.

Anyone who has been around throughout my surgeries will know that my scars don't bother me, I love them and have wanted them photographed ever since that first surgery nearly 5 years ago. So, when I came across Sophie Mayanne's Behind The Scars project I jumped at the chance to take part and finally document my scars and my journey. As the actual day approached though the nerves kept on building and the only thing that stopped me from cancelling was the fact that I knew months down the line, I would regret it if I didn't take part. So, that's how I found myself sitting in my underwear, in a studio, in front of people that I'd only met half an hour prior.

It was a turning point for me though.

Revealing my scars didn't scare me at all, but having the rest of my body on show did. I thought I would feel so exposed, so far away from my comfortable and safe skinny jeans and baggy top. I took a deep breath and before I knew it, I was actually enjoying myself. My insecurities disappeared as Sophie started taking photos and giving me direction, all of my worries just melted away. For years I've insisted that I'm a shy person that lacks confidence but throughout these past few months, with the help of the photoshoot and the people around me, I've been able to see that this isn't true.

When the photos came through I was scared to look at them, scared that I would just see every part of my body that I don't like. I looked at others photos and remarked at how beautiful they all looked but when it came to myself I just couldn't believe that this would be true for me also.

When I finally flicked through them it almost felt like I was looking at a different person, I saw power and a confidence that I'd never been able to recognise in myself. For me this was not only a journey in loving my scars, but also a journey in loving my whole body and believing in what others see in me. It hasn't all been an overnight process but slowly I'm finding myself believing others when they say I'm a confident person, because confidence is exactly what I see in those photos.

I've wanted to share these photos since the day I got them, as I'm proud of what they represent for me, but I've also enjoyed keeping them to myself for a few weeks, sharing with only family and close friends. For me Behind The Scars hasn't been about the medical and physical side of my story, it's been about the emotional side, acceptance and moving forward in my life.

My scars tell a story of the surgeries and pain that I've endured but these photos represent so much more, they mark a change in my life and the beginning of a different mindset.

These photos were taken by Sophie Mayanne as part of her Behind The Scars series, follow her Instagram and the Behind The Scars instagram to see more of the stunning photos. You can also find more of her work on her website.

Tuesday, 1 May 2018

Powerchair Update | 3 Months On

3 months of freedom. 3 months of independence. 3 months of living again.

I can't quite believe that I'm already writing this update, that 3 months have already flown by. And yet, at the same time it feels like I've had my new powerchair for years. I look back and wonder how I lived the way I did for so long, how I coped with leaving my home once a week, how I coped with missing out on opportunity after opportunity and precious family moments. I couldn't imagine going back to that life. 

To me my new powerchair has been more than just increased independence, increased comfort and decreased pain, it's marked a change in my life. I left behind a lot in 2017 but for a while I still couldn't shake off the old me, but ever since my new powerchair arrived I've had this new confidence within me. I feel like I'm finally becoming the person I'm meant to be. Sounds ridiculous right? Even I recoil a little when I hear myself say that because how could my new powerchair change so much in my life? But, I truly feel like I entered a new chapter on that day though, a whole new world opened up to me, one that I'd been denied access to for years, and I felt like a new person. 

Metaphors aside, what has actually changed in these 3 months? What have I done? I'd get comfy because this is going to be a long post.

Shona is sitting in her powerchair, wearing a black midi dress with 3 white stripes and black and white flatform shoes, a leopard print bag rests on her lap. Shop fronts and tables and chairs can be seen to the left of her and behind her.
Photography by Kaye Ford

One of the first big things that I did with my new powerchair was something that I'd promised I would do years ago; I took my Mum to see Les Misérables in London. For as long as I can remember my Mum has wanted to go and see Les Mis and finally last year everything seemed to come together at the right time and it was possible to fulfil that promise. I booked the tickets spontaneously, not something I do often, and I also booked them before my new powerchair had arrived so it was a tad risky but thankfully my powerchair was delivered 2 weeks before we were due to go.

With my old powerchair we would have had to go into London, see the show and then rush back so I could lay down at home. I'd likely struggle to enjoy the second half of the show due to pain and we wouldn't have time to properly enjoy the experience as a whole day. But, with my new powerchair we were able to make a day of it, starting off with showing my Mum the street where they film a lot of the BBC series Sherlock, and then heading to Shaftesbury Avenue, stopping by to see the Chinese New Year decorations on the way. We then had something to eat in a little pub and my Mum was already close to tears after having walked past the theatre. Beforehand I would have been in unbearable pain by then but the tilt function on my new powerchair meant that my pain hadn't built up as quickly or as badly as it usually would.

Seeing my Mum's face as we entered the theatre was something that I will never forget, and a memory that likely would not have happened if I was still stuck with my unsuitable old powerchair. My Mum cried the whole way through the show, and I really do mean through the whole show! We had to walk back to the station in the rain after, we got absolutely soaked, but none of that seemed to matter as we were both still on a high. It's fair to say that we are both theatre fans but I think what was equally as exciting was that I'd been out the house for hours and there were no signs of pain induced tears. Neither of us could quite believe that I'd been able to do it.

This is a collage of photos. Image one shows Shona, smiling, with her Mum seen smiling behind her, the photo is a selfie. The other 2 photos show the interior of a theatre, with a programme for Les Miserables in one of the photos.
Photo of a street, the angle of the camera is pointing upwards. Chinese New Year laterns can be seen, with blue skiers in the background. The street is full of people.

Months before my powerchair arrived I'd planned to shoot with Kaye to celebrate a new beginning and to show everyone what they had donated their money towards. The way I'd describe the photos that came out of that shoot is that they are powerful. I think I look badass and it represents my journey of self empowerment over these past 6 months, having left behind a lot of damaging people in my life. I also took part in the Behind The Scars photoshoot by Sophie Mayanne recently, this was something that had been planned for months and I was so glad to have my new powerchair for it. I felt so confident, so empowered and nowhere near as nervous as I thought I would be as I undressed in front of complete strangers! I should get the photos soon so keep an eye out on my Twitter and Instagram to see them.

Up close image of Shona with a small smile on her face. Her hair is down and straight, she is wearing a black dress, leather look jacket and a leopard print bag.
Shona is sitting in her powerchair smiling, her powerchair is raised up 10 inches using the elevate function. Shona is wearing a black dress, black and white flatform shoes, a leather look jacket and a loepard print bag. She is smiling.
Photography by Kaye Ford

Something else that I was able to do thanks to my new powerchair was accept a very last minute invitation to speak on the Channel 5 News about how the movement to ban plastic straws affects disabled people. I got the call and within a few hours I was on a train heading into London, I never would have been able to do something that last minute with my old powerchair. It was my first time doing live TV, after having done recorded TV for Channel 4 months prior, so I was pretty terrified and you could see it on my face but I survived it and I think I got across my point well within the few short minutes I had. It was a terrifying but exciting experience!

Kings Cross station can be seen, the sky is blue and a red double decker bus is visible.

Well timed as well was a British Heart Foundation meeting that I attended last month, a nearly all day meeting that I'd attended twice before, both of which were extremely difficult to attend previously. I would often leave early or have to find a sofa (even putting chairs together to make one) so I could lay down, so I was excited to attend the meeting, the whole meeting, without unbearable pain. In the breaks I fully reclined, getting some comments from my fellow group members about how cool my new powerchair was, and I tilted back during the whole meeting also. I no longer fear these meetings now and I'm able to participate fully and enjoy my role more!

Spending more time with my family, especially my nephew, was something that I'd been looking forward to as well. I've missed out on so much over these past 2 years so being able to do things like take my nephew to the park, or go out for dinner with my family, means the world. My nephew is loving my new powerchair just as much as me as well, he loves sitting on my lap and whizzing about with me! He even knows what buttons turn on the lights and sound the horn, but he isn't sure about the rise function yet. I'm looking forward to this Summer, we've already got some fun plans including my 21st birthday, my first birthday in years in which I will not be limited by my pain!

Image is taken from behind, Shona is sitting in her powerchair next to her 1 year old nephew in a green and blue trike.
Shona is sitting in her powerchair wear a yellow top, grey checked leggings and white converse style shoes, she is smiling. Her 1 year old nephew is sitting on her lap with his hand rested on hers.
A small 1 year old boy is sitting on an adult sized chair, with a big open grin on his face, holding a bag of crisps. He wears a red top with a tractor on.
A small 1 year old boy wearing a red top and blue sunhat is holding up a plant pot as water pours out of it.
A small 1 year old boy wearing a red top and blue sunhat is peeking out of a red tent.

My new powerchair might not solve everything, I still get exhausted after leaving the house and I can't do big trips every week but my quality of life is the best it's ever been. I no longer have to limit myself so much now, if I want to go to the supermarket and town in the same week then I can. If I want to get 2 buses to the shopping centre then I can. If I want to go out just because I can then I'm free to. I do so much more now just for fun, I leave my home just because I can. So many doors seem open to me now, I'm accepting more and more invitations and I've even got a little city break planned for a few weeks time.

Someone asked me recently about whether I'm able to work now, the simple answer is no. Maybe one day in the future, whether that be soon or far, I might be able to work but right now I'm just happy to be living again, to be involved in society rather than restricted and so often trapped inside my home. I have hope now for the first time in a long while and let me tell you, that makes such a difference to a persons life.

All that's left to say now is thank you. This would never have happened without the support of all of you. Whether you donated or simple just retweeted, everyone made this happen and I can't tell you how much of a gift this has been. Life changing is an understatement.

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