Saturday, 17 March 2018

My Wheelchair is My Freedom

Very recently the world lost a genius, Professor Stephen Hawking. He was an incredible man, he did groundbreaking work in science as well as important activism work, most recently seen in the work he did to try and save the NHS. He was also funny and inspired many people to follow their dreams of a career in science. He was also disabled, a huge part of his identity. His wheelchair and communication technology allowed him to achieve everything he did, sure he had to find different ways to do things but different is not bad, it is just different. So, why in the days after his death are illustrations circulating that show an empty wheelchair or Hawking walking away from an empty wheelchair, why are we painting the picture that wheelchairs are restrictive and Hawking is free now? These are toxic ideas that represent disabled people as being free once they die, the start of eugenics. Wheelchairs can be life changing, they give people independence and freedom, they don't restrict people. Inaccessible buildings and public transport restrict people but wheelchairs? Wheelchairs are freedom and I should know.

I started using a wheelchair several years ago now, at first it was a huge, heavy manual wheelchair that was pushed by family but it allowed me to do more and I was so grateful for my ESA backpayment that allowed me to buy it. I was struggling to even walk around the supermarket at that stage but once I had the wheelchair I could go back to shopping in town, spending time with my family and generally living life again. At that stage we didn't think the wheelchair use would last for long but when my mobility continued to decline I began to wonder about other options that could give me more independence. I was 18 when I fundraised for my first powerchair, after having been turned down for one on the NHS on the account of my ability to walk inside my home. 

The day I received my first powerchair was the day I got my life back. No more being pushed in a manual wheelchair by my family on the weekends, I couldn't go out at all from Monday to Friday as my family weren't around to assist me. My life was led by other people's schedules. But, from that day forward I was able to decide when I went out and where I went, my life on my terms. 

'Wheelchairs don't restrict people, inaccessible buildings, public transport and ableism does.'

My needs outgrew my first powerchair quickly and as many of you will know at the end of last year I had to fundraise again and I received my new powerchair just over a month ago. I've referred to it as life changing several times now but that doesn't even cover it. I'm now able to do things that I'd accepted I would never do, I'm considering paths in life that I thought were blocked off. That's what the right wheelchair does for a person. It enabled Hawking to continue his work and it's enabling me to begin my life again and start living like the 20 year old I want to be. So many things seem possible for the first time in years.

I don't need to be freed from my wheelchair and I am certainly not restricted by my wheelchair, society is what restricts me and Hawking's death has highlighted just how ingrained ableism is within people. 

My wheelchair is freedom. It's hope. It's independence. It's a fresh start.

Wednesday, 7 March 2018

In Conversation With Changing Places Campaigner Sarah Brisdion

Just over a year ago I wrote a post titled 'The Importance Of Changing Places' in which I introduced changing places, a different kind of disabled toilet, to you all. Since then I've watched the campaign to install them in more public places take off enormously, with it being fronted mainly by parents of disabled children. Sarah Brisdion is one of those campaigners who has worked tirelessly to raise awareness of this issue and instigate change, in the form of the introduction of more of these facilities. I recently got the chance to have a chat with Sarah about her recent Loo Advent campaign, and her upcoming plans to get this issue into the public eye once again.

Boy lies on toilet floor with wheelchair next to him. Text read's 'nobody should have to lie on a toilet floor' and '11 May, Bathstore, 95-97 Baker Street, London, W1U 6RN '.

Sarah is Mum to seven year old twins, Erica and Hadley, who were born severely premature at just 27 weeks. As a result of the premature birth, Hadley has Cerebral Palsy that affects his entire body, but particularly his lower limbs. He is unable to stand unaided as a result and so is a full time wheelchair user, with his continence (the ability to control your bladder and bowel) also being affected. Sarah told me about what led to her campaigning.

"I was so fed up of having to lie Hadley on the floor of public toilets to change his nappy or undress him to lift him onto the toilet. I remember being in a local store with my mum, lying him on a toilet floor to change him, and just thinking 'I've had enough of this. This isn't right! How is this fair?"

Woman sitting on a toilet smiling. Text reads 'Would you sit on the loo in public?'

Sarah has been campaigning for Changing Places facilities locally, and across the whole UK, ever since then. She set up Hadley's Heroes, her website, as a point of reference for businesses that she was encouraging to install these facilities but also to praise businesses that had already done so and to ensure people and families like hers knew they existed and could be used. But, what exactly are Changing Places?

"Changing Places toilets are larger accessible loos with extra bits of kit: a changing bench (adult size) and a tracking hoist. Without them, children and adults like Hadley are put at risk of injury and illness as they have to lie on the toilet floor to have their continence needs met and be dangerously lifted manually. I can barely lift my son anymore, he's seven years old. It gets harder by the day. I can't even imagine how parents and carers of older children and adults are managing.

The truth is, they invariably aren't able to manage away from home at all and so are limited to staying in or only visiting those places with suitable facilities, which are still few and far between. There are just over 1000 Changing Places toilets in the whole of the UK, which sounds like a lot until you compare that to the fact there are 2618 toilets in Wembley Stadium alone!"

It's estimated that over 250,000 people in the UK need Changing Places, so 1000 being available to use doesn't come close to fitting the need of the people who require them, which is why campaigners like Sarah are working so hard to increase the numbers.

Boy sitting in a wheelchair, wearing a red top and orange hoodie, smiling with his thumbs up.Woman visible in the background is smiling.
Photos courtesy of Sarah Brisdion

As part of her campaigning during December of last year Sarah came up with an idea to shine a light on this issue. She posted a photo of herself on the toilet everyday throughout advent, calling it Loo Advent, even having some celebrity contributions throughout the month. I talked about her about it and whether she expected the reaction it received.

"I was not expecting the attention it got at all! Although clearly I hoped it would cause a stir and raise awareness, I honestly thought that nobody would really pay any attention - after all, it was just photos of me having a wee. Something that we all have to do around eight times per day! But to have the guys from Channel 4's The Last Leg take their own loo selfie and then feature it on the show, and to have Hannah Cockcroft, one of our amazing Paralympic wheelchair racers take a photo too - was just incredible! I'll be framing those and popping them in my downstairs loo!

I am so pleased that it has helped to break down a little of the stigma that we associate with going to the loo. It is nothing to be ashamed of. And in turn, I hope that has got more people talking about the need for Changing Places and encouraged more people to speak out about their needs and their loved one's needs. The more we talk about this issue the more likely we are to see businesses naturally being inclusive and catering for everyone."

Changing Places logo, showing a wheelchair user, ceiling hoist, standing person and bench.

When you do such a big campaign it can often be difficult to know where to go next, I was overwhelmed after my involvement in the single use plastic debate and wasn't sure where to take the issue next but Sarah already has plans to continue her campaigning!

"This year I'm planning another toilet selfie campaign to raise more awareness, but taking it to the next level! The amazing people at the Bathstore have agreed to let myself and some other campaigners, sit on the loo in their store window on Baker Street, for an entire day! Pants down, on the throne, in public!

I really hope that this will get lots more media attention and we will see some big businesses announce that they are going to roll out Changing Places toilets. We will also be raising funds during this time - I'd love to help build another loo somewhere that needs one urgently. Perhaps helping a project providing leisure activities for disabled people."

I cannot wait to see how Sarah's next campaign goes and I'm hoping to head to Baker Street myself to show support! No one, child or adult, should have to lay on the floor of a toilet to have their needs met, especially when there is an avaliable solution that can be put in place. We know that Changing Places make a difference, a big difference, so I urge people to support the campaign in whatever way they can.

Head to the Changing Places website to learn more and follow Sarah on Twitter to keep up to date with her campaign! Sarah's campaign at Bathstore, Baker Street in London is taking place on 11th May.

Saturday, 3 March 2018

Learning To Love My Body

Body confidence and body positivity is a movement that has grown enormously in recent years and is a topic that is discussed again and again. It's lost its way quite a lot, it's a movement that was meant to celebrate diverse bodies that do not fit traditional beauty standards but time and time again I see brands attempting to cash in on this but using the same kind of models that fit into those standards. Rarely do I see disabled people included in these sorts of campaigns. It's improving, sure, but when you're disabled and struggling with body confidence, where can you turn? For me, disabled and diverse individuals on Instagram and Twitter have been pivotal in building up my confidence, but only once I found the empowering disabled people who have taught me to love and embrace my body as it changes.

Image of Shona, sitting in her powerchair, in front of a cathedral with metal fencing directly behind her.

For years I looked to abled people who fit traditional beauty standards to empower me and teach me to love my body, and whilst some people who fit that description have helped me on my journey to loving my body it's mainly disabled and diverse people who have taught me the most. Queer disabled people. POC (people of colour) disabled people. Trans and non-binary disabled people. Diverse disabled people are the ones who have helped me get to the point where I feel like a confident and empowered disabled woman.

During the past 6 months I've been the most confident that I've been in my whole life. I walked away from a relationship last year that was doing me more harm than good and since then I've fallen in love with myself. Given myself the time I deserve. My body has changed a lot in these past few years and that was more clear than ever last year. I've put on weight, my body looks different when I'm sat down and I've still got Marfan Syndrome caused stretch marks appearing all over my body. Seeing other disabled people embrace their disability, embrace their changing body has really sparked something inside me though. I trace the stretch marks on my body, no longer hating them, but looking at them like a piece of art. I treasure the scars across my back, hip and face, a reminder of the strength inside me. There are still things I struggle with of course, my tummy spilling over my jeans and my crooked teeth, but I can see days ahead where I embrace it all and stop putting so much value on the opinions of others.

Top: Joanie Clothing | Jeans: ASOS Tall | Jacket: New Look | Shoes: Primark | Bag: Monki    

I wanted to use this post today to share and celebrate the people who have helped me get to this point in my body confidence journey. The people who have taught me to embrace my disability and my body. The people who have empowered me, without removing their disability from the equation or reaching for abled standards. I've found it tough in the past year to find disabled people who fit that, who don't use problematic language that they believe is empowering but is in fact, marginalising them more. As a disabled person I'm careful how I use the word 'inspiring' but I can honestly say that every one of these people have inspired me to be more confident.

Photo credit: Sophie Bradbury-Cox

fashionbellee - Sophie Bradbury-Cox

I've talked about Sophie on my blog before because I just adore her Instagram page! She was one of the first disabled fashion instagrammers that I followed and she is constantly inspiring me to be braver and bolder in my fashion choices. I still so often hide behind my usual skinny jeans and jumper combo that feels so familiar and safe but more and more I'm choosing to wear things like over the knee boots, something that just a year ago I felt were off limits for a disabled person like me. She shows me that my options are unlimited when it comes to enjoying fashion as a powerchair user. Tess Daly is also someone who has also inspired me to be more adventurous in my fashion choices too.

Photo credit: Imogen (the feeding of the fox)

the_feeding_of_the_fox - Imogen

You can't talk about body positivity and confidence without mentioning Imogen. I found her through other's recommending her Instagram page and I'm passing on that recommendation. She embraces her disability, isn't afraid of showing it and she isn't afraid to use her voice either. For so long I felt it was impossible to build a following online when you speak out about disability, ableism and accessibility but Imogen has shown me that there are people out there who will listen. I'm constantly learning from her and she's taught me to connect with my body on a level that I didn't think possible.

Instagram feed - rvbyallegra

rvbyallegra - Ruby Allegra

Ruby is an all round badass human. They are one of my favourite people on Instagram because they empower me in so many ways as a disabled person. Like Imogen, they aren't afraid to use their voice and point out ableism and inaccessibility, something so many seem to be scared of doing because they fear it may scare off their abled audience. They radiate confidence and they are a talented makeup artist and powerful activist too.

All bodies are good bodies. There is no right or wrong way for a body to look and these people, and many more, have taught me this invaluable thought. We must see more representation of every kind of body, especially diverse bodes, because it really can make a huge difference knowing that you aren't alone in this world. For now though, I'm going to be the person that I needed just a few years ago.

More people to follow:

Megan Jayne Crabbe - bodyposipanda
Harnaam Kaur - harnaamkaur
Milly - selfloveclubb
Mama Cax - mamacaxx

Who empowers and inspires you to embrace your body?
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