Tale of the 'Miraculous' Standing Wheelchair user!

Honestly this blog post is just to educate those who wish to drag us down! Unfortunately there are people in this world who do not and will not understand, but I hope this somewhat helps 😊

Image of me in my Pizza Planet wheelchair costume at Birmingham Comic Con, inspired by the Toy Story Pizza Planet Truck. On my sides are my close friends Laura (left) and Ethan (right) and behind me is Callum.

Things are getting 'wheely' serious...

Image of me at Birmingham Comic Con in my Pizza Planet Costume. This costume is a yellow truck, with Pizza Planet written in red on a white square on the side. There are working headlights and the characters Hamm, Rex, Mr Potato Head, Buzz Lightyear and Slinky from Toy Story are on the black windscreen at the front. I am also wearing a yellow yumper and white hat to match.

(I just needed to put that pun in somewhere... sorry not sorry!)

On Saturday I went to Birmingham Comic Con and I dressed my wheelchair as the Pizza Planet Truck. In my mind, I looked darn cool! The costume took probably well over 60 hours of hard work to make and I will add a blog post about how I did it soon! 😊

However, I posted a photo of me in this costume on social media… It was the first time I’ve posted a photo of me in my wheelchair (despite having been using it for months now!) and unfortunately I got some comments that were not very nice!

An image of an iceberg captioned "Understanding invisible illness." The top half on top of the water says things such as "attending class, doing homework, smiling" and has "This is what you see..." written to the side. And the bottom half under the water says things such as "acid reflux, abdominal pain, vomiting, can't eat or drink anything, migranes, nausea, random lightheadedness and fainting" and says "But this is what you don't see", to the side.

These included questions, which I am totally 100% okay answering and will always be open to! (feel free to ask anything!) But also some people who just sought to be judgmental with comments such as “but you can clearly stand in your photos”, and others that were simply not open to understanding my struggles ☹

I totally get that it is confusing for many of you, and even me sometimes! When an invisible disability suddenly becomes visible, and then invisible again within a matter of hours, it must look odd! But I promise you this is a lot more common than you might think 😊 It may surprise you to learn that many wheelchair users can stand/walk (even if just for short distances!) and there are many of us who do only use chairs part time 😊 That is the reason why hire wheelchairs are even a possibility in the first place!

Please don’t worry if you don’t understand yet! It is one of those things that we don’t think about until it affects us or someone we know. But please, on behalf of all wheelchair users…. don’t judge us!

So why do I need my wheelchair?

An image of a person stood by the sea on the beach, captioned "Living with Hereditary Neuropathy with Liability to Pressure Palsies HNPP"

I use my wheelchair to prevent future pain or to get around when I am already in pain. I have a rather serious genetic nerve disorder which means my myelin sheath (the protection around my nerves) does not function properly due to me missing part of a gene. This in turn can be flared by anything prolonged, including walking and sitting! (You see why this gets complicated!)

If I am sat down for too long, I NEED to stand, but if I am stood too long I NEED to sit. It is a bit of a nightmare situation really. Therefore on days where I know I am going to be on my feet, such as Comic con, I’d rather take the precaution of being in a wheelchair 😊 If I didn’t do this, it is highly likely I would cause myself extreme pain at the very minimum, or worse case scenario…. permanent nerve damage! And this damage could not only leave me in severe pain for months, years or even indefinitely, it could also paralyze me! ☹ And considering there are currently no treatments or cure, it isn't a risk i'd like to take!

Whilst most flare ups in HNPP last anywhere from a matter of minutes to 12/18 months, personal flare ups have resulted in paralysis of my ring and pinky fingers on both hands, for over 2 years. And this is something I just don’t want to risk happening to my legs ☹

However when I do stand up from my chair, I get some very mixed responses! Some people think they have witnessed a miracle, some think I am lying, and some just couldn’t care less. (because in reality what is going on with my legs isn’t really that important to anyone else haha!)

But what is important, is raising the awareness of part-time wheelchair users and reducing the stigma that comes with both invisible disabilities and also invisible disabilities that sometimes present as visible! It happens more often than you think :)

So why haven’t I been posting in my Wheelchair?

To tell you the truth… because the world is cruel. To have an invisible disability is tough, and then to make it visible with a wheelchair and then invisible again when you stand up means people often don’t believe you are disabled at all.

You get the standard comments of 'fraud' or those assuming you are in it for either benefits or attention. Every single one of these comments can be so hurtful to people who are already going through a lot :(

Again, I do totally understand the confusion and when I was younger (before my diagnosis) I’d have also questioned a wheelchair user that could ‘simply’ stand up. But now I see and feel things so differently!

The comments I’ve received just since posting my first image in my wheelchair yesterday haven’t all been very kind. I obviously will not be naming names, as these comments come from a place of ignorance not malice, but I would like to share one of them with you!

This person (one of many!) went out of their way to message me initially with a question (which is 100% justifiable!) and asked “Why are you using a wheelchair?”, I explained with my usual story and they responded with “but you are clearly standing in your pictures and can walk”. Again this seemed just simple curiosity and misunderstanding!

However, these weren’t the only comments I was receiving. With others such as “you don’t need a wheelchair”, or “I know you can walk”. It did somewhat hurt, because I just wanted people to appreciate my costume and hard work. But I did understand it, so I posted a question thing on my Instagram, to answer everyone’s queries!

On this, my partner asked me an inside joke about elephants (it is a joke we have about bad wheelchair accessibility in museums!) and this person responded with a rather nasty comment that I had made an 'irrelevant question all about myself'. This was clearly another misunderstanding, after all to the outside world I’d just answered a question on elephants with a rant about accessibility in museums haha, but it was the hostile tone they took towards me that really upset me. I do somewhat believe that this was as a result of them seeming to not believe I was disabled and was ‘looking for attention’ and the underlying tone of their question definitely implied this.

Now this story is probably somewhat irrelevant and is not even close to one of the worst examples of nasty comments I’ve received for appearing able bodied but sharing the fact I am disabled. But it is that idea of ‘attention’ that I wanted to highlight.

So why this story?

Well because, in my experience at least, wheelchairs are awful. I hate pretty much every minute I spend in my wheelchair for an abundance of reasons, and would never wish it upon my worst enemy! (Not that I have any!)

Some of the issues include...

- The lack of independence as I cannot easily propel myself. It means I must have someone else direct me and need to tell others where I want to go. I can’t just simply go anywhere my heart desires.

- The awful accessibility issues, such as the inability to get into many shops and climb stairs. (I will do a blog post about this)

- The inability to see things from my chair, for example things on shelves, or anything at all when people are stood in front of me.

- The lack of ability to communicate with whoever is pushing me. You have to physically shout for them to be able to hear you easily.

- The frustration of feeling ‘out of control’.

- Being treated as invisible. Which happens more often than you’d expect ☹

- The need to plan everything in advance! For example I cannot travel by train with my wheelchair, unless I prebook access 24 hours in advance. I can’t just show up and want to go somewhere like a non-wheelchair user could!

- The judgement and staring. You can feel this on you constantly ☹

- And honestly so much more…

But the positive is, it prevents my pain from becoming unmanageable and means that I don’t have to stop doing the things that I want to do! For me, living my life instead of staying at home in pain, somewhat makes the cons worth it. This wasn’t an easy decision, but it improves my quality of life and enables me to go and do things I’d have otherwise really struggled with, like Comic Con! So when someone does bring up this 'attention' thing, I find it so confusing. Why would anyone want that life? To have those limits? Unless they genuinely had to :(

Again it is so irrelevant haha, but just something for everyone to think about before being judgemental of others. Their struggles are not ever invalidated by your opinions, and sometimes those opinions are best left unsaid if you don't want to cause unnecessary hurt :(

That being said, do ALWAYS feel free to ask me any questions, I have no problem at all with genuine curiosity and confusion! :)

I think I am going to leave this blog post here, before it gets too ridiculously long!

Just remember, that when you are about to judge someone, you probably barely know the first line of their story, and what you 'know' of them may not be what it seems!

Thank you for reading guys! Speak soon 😊

Tasha!

P.S: If you are reading this as someone who made a comment/passed a judgement without knowing, please don't worry, feel bad, apologize or do anything at all really! I am thicker skinned now than I used to be, haha, and whilst I was hurt by it a little, I will be okay! I just see this as a good opportunity to educate others and totally understand you most likely didn't mean harm by any of this! :)