Monday, 10 December 2018

Powerchair Update | 9 Months On

This update is about a month over due now but I have the perfect excuse, I've been so busy enjoying life that I just haven't had time to blog! I've been finding myself being in London several times a week, visiting other cities and doing some exciting interviews during these past 3 months. Now, there has been another update on my blog since my 6 Month update, and that would be because the Quantum UK team very kindly upgraded my Edge 2.0 powerchair to their Edge 3.0, just a simple case of switching the base and getting some fancy new matte black shrouds! This update covers August, September and October and get ready for another long blog post because they felt like the busiest 3 months of my year!


We should probably start with the musicals I saw because that's where the majority of my time has been spent over these past 3 months, I saw 4 shows an undisclosed number of times and I truly feel like I'm living my best life! I said that when I got my powerchair I was going to make up for the lost years and the lost experiences and I really have delivered on that promise, perhaps a little too much! As well as seeing the actual shows I was also kindly invited along to the Eugenius Acoustic Press Evening at The Other Palace where we were treated to acoustic performances of several songs, as well as a Q&A from the creative team. This was my first theatre press event and it was incredible, The Other Palace is potentially the most accessible theatre in London so it was the perfect setting and for once I didn't feel separated from everyone else, like I usually am for theatre performances. I saw Eugenius 3 times during it's run, twice with my Mum, as we just had so much fun that first time! Getting to spend more time with my Mum outside of our home has been one of my favourite things about getting my new powerchair, we've always been really close but over the past few years we've done less and less together as my condition has worsened, so to be able to go and see shows with her just about every month has been incredible!

Six is another show that I saw multiple times over those 3 months, made even more exciting by getting to finally meet Pippa during one of the trips! We've known each other through social media for a long while now, and she was one of the people who really inspired me to start reviewing shows from the perspective of being a wheelchair user so it was so lovely to put a face to the name. I also saw Heathers twice during these 3 months and as you'll probably gather from my review, me and Heathers never really clicked, it just wasn't the show for me!

The biggest musical related thing that happened during these 3 months, that will stay with me for the rest of my life and was honestly one of the best nights of my life, was the Halloween Bat Out Of Hell Singalong. This was a true fan night. We dressed up as characters from the show, I went as my favourite, Blake, and we sang our hearts out alongside the cast. I have never heard a noise like it, the theatre wasn't even full but we were so loud, it was like an out of body experience! The atmosphere truly was like nothing I'd ever experienced before. I also got complimented on the detail in my costume from the head of wardrobe and Ryan Anderson who plays Blake loved my costume too, which truly made my night. I wish I could bottle up that night and experience it all over again, it's certainly going to be a difficult night to top! Let's not talk about how many times I actually saw Bat during those 3 months though...


It was my 21st birthday in August and as a little birthday present to myself I headed to one of my favourite cities, Leeds, to spend a few days there seeing friends, shopping and generally just relaxing! It was so lovely to have a proper catch up with Chloe, someone I could and have talked to for hours, if you're not already following her then you definitely should be as she's absolutely smashing everything she's been doing recently! I also met Ella for the first time whilst I was there, these past 3 months have definitely been the ones of meeting Twitter friends in real life.

Superhero Triathlon

August also saw me doing something that I never believed I would do, I took part in a triathlon! I teamed up with Lyndsay and Barry from Craven Complete Fitness to take part in the Superhero Series, raising money for InvisiYouth, a charity that supports teens and young adults living with chronic illness and disability. It was incredible to be in such an inclusive environment where the non-disabled people were the odd ones out for once! I was kindly lent a lightweight manual wheelchair from RGK  to use to wheel myself the 1km, after Lyndsay and Barry had completed the swimming and cycling sections. It was one of the most difficult, but rewarding, things I've ever done and I'm really hoping to take part again next year but this time, I want to do all 3 sections!

Filming with Quantum

Obviously one of the biggest things that happened throughout these 3 months which you already know about is that my powerchair got a bit of an upgrade! I had the base of my powerchair kindly changed over to the newest model, the Edge 3.0, by the wonderful Quantum team. The suspension is better, I can drive faster at iLevel, I've got new lights and even a second USB charging port now! My powerchair is also now matte black (after being matte blue for a little while), which is the colour I'd imagined my powerchair being from the very beginning, it just looks so sleek now. The changeover happened the day before we headed to Oxford to do some filming for the launch of the Edge 3.0, I was the first person in the UK to have the powerchair, which was a little exciting! It was so fascinating filming for the video, seeing how much work goes into something that's only a few minutes long. We did an interview and then headed all around Oxford to get different shots, it was basically a lot of repeating myself and different movements but it was a lot of fun! You can read more about it and see photos from the day in my previous powerchair update.

Shaw Trust

October marked the launch of the Shaw Trust Disability Power 100 list, a list of 100 of the most influential disabled people in the UK and somehow I managed to find my way on to it! It was truly an honour to be listed amongst so many people who have achieved so much, people who have shown me that my goals in life are attainable. It was so lovely to see bloggers being well represented on the list too, blogging has given me a voice that I don't think I'd otherwise have so it was nice to see people appreciating the work that disabled bloggers, youtubers etc do. It will definitely go down as one of my proudest achievements!

Sky Garden

I have this list in my head of things that I've spent years saying I'd love to do and I'm slowly making my way through it, ticking off one of them at the end of October! On the same day of the Bat Out Of Hell Halloween Singalong Mum and I finally visited the Sky Garden. Now, neither of us are quite the best with heights but it was something we really wanted to do and actually, it didn't feel anywhere near as high as I thought it would! You get the most beautiful views of London, and for free as well. The inside is stunning too, I can certainly see why a lot of bloggers have taken photos up there and I took advantage myself as well! We definitely want to return again, perhaps when the weather is a little better.

So, that was August, September and October! I really thought that when October came to an end I'd have some time to relax, actually do some blogging and start planning for Christmas but from then on things only got busier, but you'll hear all about that in my 1 year update post! I can't quite believe that it's nearly been a year, just yesterday my timehop reminded me that it had been a year since we raised the full amount needed for my powerchair, £11,500 in 3 months. I am truly grateful every single day to everyone who made it possible, I think it's clear to see how different my life is now and as a person I'm unrecognisable compared to who I was last year. I feel so confident and I am so excited to see what 2019 brings!

Monday, 19 November 2018

The Plastic Straw Ban & How It Harms Disabled People

It was back in February of this year that the conversation about plastic straws started to gain momentum, and I found myself writing about it in the media, talking about it on the Channel 5 News and spending nearly every waking minute explaining disabled people's side of the debate on Twitter. It felt like we made a lot of noise and despite some places having already removed plastic straws from their businesses and large companies like Starbucks announcing the eventual removal of plastic straws, it felt like maybe people were listening. I received so many messages along the lines of 'I had no idea so many disabled people relied on them' which I think is so representative, many people are unintentionally ignorant to the needs of disabled people but what matters is how you respond when you're enlightened.

Last month the subject came alive again as we found out where the government and evidently a large proportion of the general public sit on the issue, plastic straws are pointless is the line that keeps coming out again and again. The government announced a plan to ban plastic straws. Meanwhile, thousands of disabled people in the UK are staring at news articles with confused faces as we think, 'hang on, without plastic straws I can't drink', I don't know about you but that strikes me as quite the opposite of the word 'pointless'. Let's take things back a little first though and talk about the history of the bendy plastic straw.

The history of the straw is a long one but it's the bendy plastic straw in particular I'm focusing on because this is the one that many disabled people use. The bendy plastic straw was invented by Joseph Friedman in 1937 after he observed a child struggling to drink out of a straight straw. His invention didn't really take off until the 1940s though, but when it did his flexible straw was first marketed to hospitals. For me, this is a really important fact. Friedman's flexible straw is cited as an early example of a universal design, in other words it's an example of something being made accessible to all people. It made drinking a lot easier and safer for disabled people, elderly people and those in hospital. After all of my surgeries I spent a lot of time laying in bed, recovering, and bendy plastic straws made drinking possible and easy. When I'm in a flare up or I'm ill I can be stuck in my bed for days sometimes and again, bendy plastic straws mean I can safely, easily and independently drink. Basically, these straws were first used in hospitals for a good reason. They revolutionised things for disabled people.

Some people keep asking questions like, 'what did disabled people do before plastic straws?' as though to prove we don't need them. The truth is, we struggled, suffered from medical complications, weren't independent and as Jessica said, we died. It's like asking what disabled people did before wheelchairs, we were quite simply bed bound. No one wants to go back to either of those times, and so we're fighting this proposed ban.

It was in April of this year that the government's plan to ban plastic straws, alongside plastic drinks stirrers and cotton buds, first started to look serious. A consultation was announced for the end of the year and we were told that these items could be banned from as soon as next year. Now, at this point I have to say I didn't really believe it simply because I couldn't believe how ignored disabled people had been. We'd shouted as loud as we could to get the message out that we needed plastic straws, that we relied on plastic straws, but yet there we were being forgotten and ignored. Fast forward to last month though and things started getting even more serious.

In October 2018 the UK government officially set out it's plan to ban the distribution and sale of plastic straws, subject to a consultation that is open for anyone to respond to. When this was first talked about in April I think one of the reasons why I didn't believe it was because it felt fast, and now this feels even faster. We could see plastic straws disappear within a year, and in fact we are already seeing them disappear from shops, cafes and restaurants. This is a worrying situation if you're a disabled person who relies on plastic straws. Each and every time I bring up this subject, whether it be in person or online, the same response comes up again and again; why can't you just use an alternative? Why does it have to be plastic? Thankfully Sarah, a student and activist, came up with a handy chart which breaks down why the different alternatives available are not suitable for many disabled people.

As explained before, bendy plastic straws were first used in hospitals for a very good reason and whilst there are many other different straws options available, such as paper and metal, plastic is still the best option for a lot of disabled people. If you can use an alternative, great, but some of us can't and we should be believed when we say that. I don't 100% rely on plastic straws, but for me it's a case of things are a lot easier and safer and I'm far more independent when using a plastic straw. I can't tell you how many glasses I've smashed over the years. However, I would struggle to clean a reusable straw and don't have a carer who could do so for me, and I also would struggle to remember to bring them out with me. As it stands I'm taking my own plastic straws with me when I'm out and about but most of the time I forget. Now for me that isn't always the difference between drinking and not drinking, but for many disabled people it is. If you rely on plastic straws and arrive somewhere to find they aren't offered that could easily mean you aren't able to have a drink. I'm not just talking about an after work cocktail either, not having a plastic straw is a barrier to drinking water for some.

As soon as I found a link to the government's consultation on this issue I began to fill it out, not expecting it would take 45 minutes of my time, and that was with skipping questions that didn't apply. They say anyone can fill it out and have their say, but as a disabled person with minimal energy to spare, it didn't feel like this consultation had been designed with the general public, and specifically disabled people, in mind. This is what the government have to say about those who require plastic straws:

'We recognise there are instances where using plastic straws is necessary for medical reasons and our consultation seeks views on how to ensure those who need straws for medical and accessibility reasons can still use them. For example, pharmacies will still be able to sell plastic straws and restaurants, pubs and bars will be able to stock some straws for use on request. The Government will work closely with stakeholders to ensure these exemptions are crafted exactly right.' - Department for Environment, Food & Rural Affairs

Firstly, I've seen the mention of pharmacies in connection with this issue come up a few times now and my worry with going down that road is we will get to the point where plastic straws will be on prescription. Someone else will get to decide whether you're entitled to a plastic straw, and for those who have to pay for their prescriptions that won't be cheap. Equally, even if pharmacies simply just sell them to the general public, it will be an extra expense for disabled people who on average already have £570 of extra costs each month. We are already struggling, by putting the responsibility on us to buy and then remember to take straws with us you will be putting unnecessary stress and strain on our lives. 

The second part of that statement states that restaurants, pubs and bars will still be able to stock some straws for use on request. What we are already seeing is that this is the case, but it's not plastic straws they are stocking for use on request, it's paper. As outlined in the chart above, that won't work for some disabled people. There will undoubtedly be places that will just refuse to stock plastic straws, even for disabled people. And then the other problem with this is you'll have someone else deciding whether someone is disabled enough to need the straw they are asking for. We know how poorly those with invisible disabilities are treated in general and this has the ability to only make that worse. We already have unqualified people within the DWP making decisions about their lives, don't hand that over to the public as well. 

Now, I'm not saying that I have the solution to this problem. We all know that collectively our actions aren't doing good things for the planet but to me the logical way to tackle this problem would be to target the biggest polluters. I came across an article on Eco-Business a little while ago, whilst doing some research for this post, that looked at this issue from the angle of targeting big businesses. It covered how Greenpeace, an environmental group, had launched a campaign ahead of 2018s Earth Day to put pressure on corporations. This was backed up by a plastic waste study that was conducted in September 2017 in coastal areas of the Philippines, Taiwan, Indonesia and the US. This revealed that brands Nestle, Unilever, Coca Cola, Pepsico and Proctor & Gamble were some of the biggest offenders when it came to plastic pollution. If we put the responsibility onto the big names then we'll force a shift towards investing money into finding viable alternatives, rather than the responsibility falling on the general public with our act now, ask questions later ideology. Sure, there are things individuals can do like properly recycling, using a reusable coffee cup and where able, a reusable straw but if this is to be sustainable then it's up to the big corporations to cut their pollution, pour resources into finding alternatives and taking responsibility for their own actions. 

The current trend of targeting straws to me is also just that, a trend. Starbucks exhibited this better than anyone else by announcing that it would remove plastic straws from it's stores by 2020, and in replace of the plastic straw they would offer... a plastic sippy cup lid. If you've seen photos then you might know why I'm rolling my eyes right now, these new lids appear to use much more plastic than a single straw and with no guarantee that they will all be recycled, how much impact will this really make? I spent a solid 5 minutes wheeling up and down streets in London recently trying to find a rubbish bin with a recycling section, with no luck. These plastic lids will simple be contributing to the same problem that they were trying to solve. 

Something that I've found quite entertaining since this conversation began is that single use coffee and drinks cups use far more plastic compared to single use plastic straws and yet our efforts to cut down on their use has been next to none if you compare it to the plastic straw movement. Sure, places offer money off if you bring your own cup but how many people actually do that? It's laughable to me that people still buy their iced coffee in a plastic cup, which they don't recycle, whilst at the same time being happy to remove plastic straws from disabled people, who require them. Don't take my word for it though, the statistics speak for themselves when it comes to recognising that we've got our priorities wrong. Estimates show that plastic straws only accounts for about 0.03% of our global plastic waste by mass. Another study found that an estimated 46% of debris in the ocean is abandoned fishing equipment. So, if straws are only a tiny part of this problem, what are we doing to tackle the big offenders? 

If you combine this with the targeting of pre-cut fruit and vegetables, wrapped in plastic, then it really feels like disabled people are taking the brunt of this social movement. We want to save our planet as much as the next person, but we simply recognise that we don't need to give up our right to be independent to do that. This isn't an either or situation, we don't need to sacrifice disabled people. So, the next time someone tells you how pointless plastic straws are, just remind them that for some people they are the difference between having access to liquids or not. 

Tuesday, 23 October 2018

Circus Starr | The circus with a purpose

This year has been the year of firsts for me since I got my new powerchair in February and 2 weeks ago I added another to my ever-growing list as I went to the circus for the first time! Circus' aren't something that have necessarily always interested me but I love gymnastics and acrobatics so on paper it seemed ideal for me. Circus Starr aren't like other circus performances though, they are inclusive, accessible and offer free tickets to allow disabled, disadvantaged and vulnerable children to experience something that typically they might not get the chance to. I was kindly invited along to one of their Luton shows, part of their UK tour, to experience the show and what they do.

Circus Starr is a touring circus boasting world-class, professional artists from across the globe. It was first founded in 1987 and provides free seats for thousands of disadvantaged, disabled or vulnerable children, whilst helping to raise much needed funds for local charities - Circus Starr

Circus Starr are a not-for-profit organisation which supports local businesses and children's charities whilst operating a donated ticket programme that gives thousands of children the chance to experience the circus, thanks to the support of local businesses. The big thing for me is that Circus Starr's performances are relaxed performances, which are aimed at opening up live performance and theatre experiences for people with autism and other learning disabilities, we're seeing more and more theatres put on relaxed performances but I hadn't heard of a circus doing so before this. At Circus Starr children are actively encouraged to interact with the acts, cheer, applaud, move about and can leave and come back at any time to get some space.

Photo via Circus Starr

Another big thing is that on this tour they are bringing a Mobiloo along with them to every date, this is a portable Changing Places which allows disabled children and adults to use the bathroom. These unfortunately are still not commonplace, and I've covered this issue for nearly 2 years now, but having a Mobiloo along on this tour is a big step forward, and a very encouraging one too. It allows families who would typically not be able to attend, or would struggle and have to change their children in their car or elsewhere, to enjoy the experience knowing there are suitable and accessible facilities metres away.

Photo via Circus Starr

Circus Starr are wheelchair accessible too and the wheelchair spaces are front row which I love because in a theatre or at a performance the wheelchair spaces are rarely so close to the action. I had to attend in my manual wheelchair as we could only reach the venue by car and I will say that my Mum struggled to push me across the grass, it would have been nice to see some kind of mat put down leading up to the entrance to make wheelchair access a little easier.

As for the show and the acts, obviously it's been designed for people quite a bit younger than myself and my Mum but we really enjoyed it and felt some of the acts were exciting and daring enough to be entertaining to both the adults and children, I particularly enjoyed the audience participation and the parallel bars act. All of performers were incredibly talented and were really good at interacting with the children.

I do have a little bit of constructive feedback though! There were 2 things that surprised me during the show. Firstly, a balloon was popped during one act, which really shocked me as it's not something I'd expect at a relaxed performance, avoiding loud and sudden noises seems like something pretty key to keeping it relaxed. Secondly, on the flyer and in the show they said how they were deaf friendly but I couldn't spot a BSL or Makaton interpreter anywhere, perhaps I just didn't spot them though! The final act was a song that was partially signed though, and it was nice to see the audience giving the signing a go.

Overall though I really enjoyed the experience and it was great to see so many children having fun and being able to openly show their excitement! Organisations like Circus Starr are so important to allow all children to experience live performances. You can find out more about them, donate to keep them going and find information about applying for tickets on their website. They are touring the UK until 25th January.
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