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Disabled Expectations Among Other Things

Image description; Rebecca a white woman with brown har, wears a pink jumper khaki green jeans , a purple scarf and rainbow shoes . She sits in her wheelchair that has peach spoke guards with multicoloured butterflies dotted around on it.. Rebecca is on a bank by a lake.

Dear Reader,

I started writing this post early in September and it strangely took me a while to form my thoughts. Whilst I speak about the changing of seasons-summer to autumn-, I think some of the reflections I make can be applied, somewhat, to any time, to one’s own personal seasons too. This is why I have left the wording as it is. I have truly enjoyed losing myself and discovering as I wrote this piece. And so I hope you are able to go with me on this and also enjoy this read.

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September sees the last utterings of summer. The shortening of length of light by a minute each day, as September ages. indicated that this warm season is coming to a close. Some of us grow back down into routines, after a period of perhaps adventure or a simple pause from the daily workings, if only a while.  Maybe the sun, radiating the last of its warmer rays, is soothing us back into our everyday, or maybe trying to echo an element of hope, if it didn’t have that sparkle that you thought it would have- that everyone says it has.

For some of us summer is the season where life seem the most vivid and has an abundance of colour and everything feels that bit more possible…rose-tinted glasses much? I think so. How many times have you heard recently the phrase ‘holding on to summer’? I know I’ve heard this quite a few times in recent weeks. Don’t get me wrong we all want to spend times in the warmth of the sun, but I think that something about fixating and trying to anchor ourselves on something that is fleeting will always leave us defeated; the passage of time will always win. This is a message that has rippled through out the U.K and beyond, with what’s been in the news recently- that, for a lot of us, draws on parts of our own lives, somewhat, making us reflect.

Wow! That got deep so quick! I don’t know but it’s something that I’ve thinking a lot about recently- that the volume of life left to pass in the timer is constantly shrinking. I say the above like I’ve aced and surrendered to the unknown, but that could not be any further from the truth. If we are going full on confessional mode-the unknown is my biggest fear.

I know the unknown has its sparingly exciting charms about it, like discovering a new dish(linguine is a recent for me and is all kinds of delicious) or exploring a new place (especially if disabled access guaranteed) and not knowing what you might find, or how a piece of work might take shape, like writing this, or the anticipation of what will happen next in Virgin River (new-to me swoonworthy series I have found on Netflix) that kind of thing. But the bigger stuff that plays on your heart strings and have unsettling tones is something that has me reach for the duvet.

For me summer as an air of nostalgia to it and gets me in a reflective mood. I toy with all of the unanswerable questions like ‘what ifs’ and ‘what could have beens’. I am also increasingly aware that in just a couple months’ time will be entering my last year of my twenties-I mean it would be a worry if I didn’t know my own age, good lord I would be more infantized than I am now, by others, as a disabled person- but that’s a whole other story. What I mean is the heart pounding thoughts of not having my ducks in a row, or not and being the person that my eighteen-year-old self thought I would be ten years on.

My teenage self-romanticized what young age adulthood would be like, I think most of us do at when we’re young. We want independence, we want to be seen in our own right and taken seriously. More personally- I thought that I would stop being infantilized but spoiler alert, I haven’t. I was naive to think disabled adults would be treated the same as non-disabled people.

As a disabled woman, the expectations which I am held to are different. You think I would be slightly relieved to be released the from expectations, but in fact I am annoyed at this. Why the hell should I get off lightly?

Do you remember egg and spoon races at school? Well my ball never fell off my spoon… confused? You would be right to. No it’s not that this activity that magically calmed my tremors, in a strange contradictory technique, it actually made them more aggravated. The truth was that the ball was stuck to my spoon as on its own the ball would fall of within two seconds. I did feel bad for cheating- if it’s any consolation I would always come in one of the last places-, but I guess my teachers just wanted me to feel involved somehow and that was their way of doing this.

My adult self is spilt in two about this scene on the one hand it allowed that kid who was the only physically disabled kid in her primary school not to be left out and feeling the odd one out. However, the other part of me looks at the message this sends out for the bigger things- that disabled people goes through life, and must be treated differently. Yes in some respects we do navigate the world that deviates from non-disabled people i.e some of us need an extra pair of hands for certain activities, or accessing a building via a ramp and not a staircase. This is only seen as different because society views it like this, not incorporating this into the mainstream. Another message from this says that disabled people cannot be seen to drop their ball. Because society views disabled people with a fragile lens, and so to everything they can not to ‘let’ us break, no matter the cost, cushioning us from the world. And also because ‘dropping the ball’, so to speak, would go against that other bizarre narrative that holds disabled people on a pedestal (goody- two-shoes type thing ) and says that disabled people couldn’t possibly fail and oversee our humanness and need to fail-and not being over or under berated for this- not that one should ever be judged for their failures.

So if we use the analogy of the egg and spoon- us, disabled people, being the egg, the spoon being the rest of the world, we need the glue, being the stereotypes or ideas about disabled people, that holds the egg (or us) in one fixed position to be eroded and let us be trusted and encouraged to just be . We need to be seen as humans, that can fail.

I digress. As I have written soo many times before it took me years to speak openly about my disability, unlike now whereby I could write about disability till the cows come home! I wonder if I was more willing to embrace my disability sooner where would I be? Would it have led me to taking different pathways? Of course, I will never know the answers to these questions and this pattern of thought isn’t helpful either. It’s an exercise though I’m sure pretty much everyone knows the mechanisms of, which may include pondering over what another life led could have looked like, missed opportunities, saying no rather than yes or vice-versa perhaps even mulling over past regrets. Still, this reflective practice will be unique to everyone who does this.

I don’t think there is any definitive resolution to these woes, as I think it is something that is naturally reoccurring and is a part of what it is to be human But I think in these moments of thinking back, growing quite and almost yearning for time gone by, we can’t let these times be all consuming and keep us fixated on the past.

So as we approach the end of September, the end of summer and the start of autumn, instead of trying to keep a hold of what is moving away from us, to try and release the grip around this. As I said above time will always win, and as much as we can feel defeated we can’t always perceive this character as an enemy. The time we have at this very moment can be used in any way we like-how cool is that. How we use it, is up to us!

I hope this has provide food for thought for you as we transition to the next season.

All my love XX

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A New Year Ramble

Rebecca sitting forward in her wheelchair
Image Description: Rebecca, a white woman with long brown hair, wears a green, blue and yellow velvet long-sleeve top and yellow trousers and shoes. She is sitting forward in her power chair, resting her head on her left arm. Behind her is a white wall.

Dear Reader,,

Last week I wrote something on Instagram about not living up one’s expectations put your own. This time of year there is such an emphasis on starting a fresh and ‘bringing the best version of you’, but what if you don’t want to do that? Or feel fine as you are? Or just think that whole thing is just a bit anxiety provoking?  There is so much hype around a ‘New Year, new you’ and comes with an intense pressure for self-improvement, but if we’re honest this whole fascination with newness is just temporary-so why do we do it to ourselves? We are already are dealing with a lot navigating this human experience, so why burden ourselves with these unnecessary thoughts?

When I returned to writing after a few weeks off, I felt a bit distant in relation to this. I’m unsure why. It felt like the weather reflected my mood. It was grey and wet. I felt grey and a little like Ms Misery Guts. I did the exact opposite of what I wrote in this post and I thought about how I ‘needed’ to just to be a lot more than what I am, to do more-what? I don’t know but there was a hovering question mark that I just couldn’t bat away.

I then did something which I never do, what all the creative greats say never to do: sat and waited. Literally. I waited for an idea to come to me. I don’t even know why on earth I did this. I know this is not how this process works. In a speech that Elizabeth Gilbert gave years back, the way that she described the act of making art translated to me as a union between the person and creativity-defining creativity as separate to the person-. The person and creativity both playing a part, both working together to produce something. So by me sitting in front of my laptop not really trying, the ceremony of creativity was never really going to commence, not putting myself in service mode and doing my part. I was holding myself hostage, not allowing myself to dance with creativity. I was looking in from the outside about the fascinating wonder and vibrancy of this activity and just yearning to be part of it. All the while forgetting and overlooking that I am a part of this process and so in order to feel the buzz of creativity, I need to work for it- more accurately work with it!

This hard focus on creativity, throwing an internal tantrum hears a voice full of doubt and kidding oneself out of what it is that there doing, and it makes it feels like the cogs are stubbornly stationary- the solution?  I don’t know if there’s one big solution. I think it’s more about trial and error, being gentle and keep going-something that perhaps at that moment feels a bit difficult to do. 

This perspective could perhaps be extended to other aspects of life. Most of us have this incessant need to get things right and it can prevent us from enjoying what we’re doing too. Again there’s no quick fix. Though I do think that it again by just doing little bits and not getting hung up on the idea of perfection and go with our gut perhaps we can breakthrough this.

I guess the point of this post is to say just take your time and try not to be pressured or think that you need to live up to some sort of expectation. Do things your way and not in the way that you think how things should be done. And finally don’t let sense of New Year trick you in to thinking that you have to change something, because you really don’t.

All my love XX

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Social Media: Can It Be a Force for Good?

Social media. Social media can often be seen in a dark light and as something that can hinder one’s wellbeing. It can be a source of comparison and a play a role in the décor of one’s rabbit hole if they let themselves be consumed by the tiny squares or life updates from others who pick and choose what they share. But there is also another side to this platform, which can be so positive if used in the right way.

The way that we engage and use the online world has changed dramatically from years ago when Facebook was mainly used, with people just sharing updates on their life. However, now there are many outlets and are often used to start conversations and express stories. So given that now social media can be used to shed light on things that may be left in the dark, can at least some of it be seen as a force for good?

I use social media as a tool to express my voice, my thoughts and views about my disabled experience.  My disability is something that I used to keep under wraps when I could, not really talking about it voluntarily. However after sometime, writing on this blog and by gentle encouragement from those around me I started to introduce my Cerebral Palsy. I found sharing my ideas in this way to be something that was so freeing, discussing my disability wasn’t something to be afraid of. Expressing this part of myself also allowed for connection with other disabled people and I learnt soo much in turn.

I wanted to know if others felt the same about social media-if others felt that good could come from social media, or if it was me just having rose-tinted glasses on. The responses I got reflected my thoughts that online can be used for good. First and foremost, sharing experiences an having a space to do this was something that I picked up from in one’s person response, saying how it “Gives a personal story of those whose voice might not be heard.” This was something that really resonated with me. Sometimes people may only be in touch with those who look like them, share similar interests and values and be part of the same community.  This was also reflected in one response who said how friends of theirs who have “Difficulty [in] communication verbally” “Feel like they have a voice that is paid attention to on here [Instagram], as opposed to in-person interactions where others may avoid communicating with them, or have difficulty understanding them.”  This is something that I could identify with, having a speech impediment myself.

It seems that by logging on to the online world, you are logging on to find lives away from your immediate one. One that could be informed and shaped in a way that otherwise wouldn’t be.

The freedom of expression was also something one person said to be a positive about using the online world, saying “Talking about the ups and downs and my ‘normal’ has not only helped me but also helped complete strangers who message that they feel the same way and even created new friendships.”   In some regard then, this outlet could be considered an educational tool too. It definitely has for me.  Reading/hearing perspectives from other disabled people allows me to better understand and reflect upon how I think about my disability.

The sense of gaining insight is not limited to a disabled person to another disabled person, non-disabled people can learn about disability too. One person replied saying how by listening to disabled people has “helped” them “destigmatize disability and tackle my own ableism”. Isn’t this what the platform should be for? To educate and shake up perspective ….and maybe the odd cute cat photo dump just to please the eyes?

Sharing experiences can be daunting, especially when you are unsure whether anyone will understand and/ or respect what is being said. Even now I still sometimes second guess myself when sharing some perspectives. And so, it is such a lovely feeling when people respond saying that they feel heard or understood. When I went to social media to find out what people thought social media was good for, the sense of community was something that a lot of people touched upon.  Someone said how it allows for “Making genuine friendships and being part of a community that understands”, followed by someone else who said how this platform “Provides community and understanding.” The feeling of support is something that I also deeply feel. Whenever I post something online about disability I receive such supportive feedback, in terms of people saying how something resonated with them or sharing their experiences. I feel held. I feel understood. I feel less alone when experiencing such thoughts. 

Even though social media can be a trying place at times and I do think it is important to step away from time to time- at weekends no screen time (or more limited screen time) is something I like to often do- it can also be used to bring about positivity. One person echoed how parts of this world can be a good thing, when they said “I have gained so much confidence especially in my body after seeing so many beautiful disabled women on here proudly posing in their wheelchairs, showing off their gorgeous selves and building up other women.”

I think we need to focus on using social media to create change and be a space that keeps starting helpful and useful conversations having even more reasons to celebrate the online world and work to minimize the harm created these platforms.

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A Call to Change How Disability is Seen

Dear Reader,

It is funny (not the haha kind, more the stop and think kind) how the world is sooo pent up and focusing on fixing things, solving this by pretending they are not there instead working around them. I guess that would require too much ground work. This idea becomes dangerous when these things are not just things but are people and the outlook remains the same- the focus being ‘how can this be fixed’ or ‘made better’. Well, spoiler alert, this can’t be fixed, made better or be shunned away through any other ableist ideologies-how about…they you know…turn that frown upside down and realised that it’s more about people working with what they’ve got.
Sometimes disability is seen as some sort of disadvantage, and something that instantly categorises people with disabilities as ‘the disabled’ as if they’re a faulty model. As a person with a disability, it is all too familiar and expected that I will see someone’s eyes widening and their voice reach a new octave as I share a little about who I am, flabbergasted that I am just as human as them. However something in their behaviour says that this stereotype of disability is still being brought into.

Though I write and do my part to raise awareness of disability I do not know quite how to tackle one’s perception of this. Dating back to long ago people with disabilities were…let’s just say there was no voice that represented this community so I guess this stereotype was the only reference point. But this stereotype was only formed because there was no voice, still the only voice that was heard were men in power(sometimes I do wonder if times have changed). Even though the community of people with disabilities has come a long way, with campaigns around inclusions being had, it still feels like we haven’t reached our peak! When I ask myself how I can go about furthering my message, the only possible solution is to keep saying how things are for me, keep speaking out, keep writing stuff like this, call out when people show discriminative behaviour and do not let other people’s words and actions have an influence on how I view myself.

It is not only how people with disabilities are approached and talked to that needs to be addressed, but what is also needed is for society to be accessible and all round inclusive-some may call it ambitious, I call it essential! As I said above, the world can go around fixing things by pretending that they are not there, by this I mean by places STILL not accessible. Checking if somewhere is, for me, wheelchair friendly should not be a part of my ‘check before you travel’ routine. On this note: London underground! Now I know it is at the height of hustle and bustle but it is also the most inaccessible and my question is why? We’ve got technologies for the more unnecessary such as being able to see on your phone who is at your door, so why can’t some investment go into technology to engineer public transport to be just that transport for PUBLIC use, transport for EVERYbody?
I’d love to say that the physical form of accessibility that the only an area of that needs stark improvement but this is just the start: how institutions relate to people with disabilities, be it in education or in, or accessing, work need to undergo a major change in order for the same opportunities to be given to everyone. Therefore this means people with disabilities receive equal treatment to everyone else without having to go to extra measures to prove themselves, that extra thing that if disability was taken out of the equation these measures wouldn’t have to be taken. I do wonder if people without disabilities were questioned, were put through tests and were observed in the same way, what would be the response of these people? Would they understand the implications of ignorance? Would they finally see people and not what people have or haven’t got?

I am writing this as I no longer want to be silent and pretend that I am not moved by the inequality that is blandly obvious in society, a society that is fractured and unable stand in solidarity with those with differences. I am one of many with these thoughts and I hope that others who resonate with these words are able to feel empowered to share theirs. But not only do I hope these voices come forward, I also hope people who are on the other side of the coin, who don’t have a disability, that these words play a role in their understanding in how such judgement feels. Perhaps this understanding will also go towards changing their perspective and actions towards disability!

All my love XX

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This will pass

✨ I hope you can find magic this Monday however small ?✨

Illustration by @emilycoxhead

Image description: words in black handwriting that reads: “It’s okay to feel flat you can’t ALWAYS bounce back CONVERSATIONS can be TOUGH doing the RIGHT thing isn’t always enough . We can’t have HAPPINESS without a little pain hard times will pass again & again- emily coxhead.” These words are on a illustrated lined piece of paper. This paper is on a blue background with a illustration of a rainbow in the center. Illustration is by @emilycoxhead

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Honey I’m Home!!

Dear Reader,

It has been a real long while since I have posted anything on here and I have missed blogging, I really have. I guess it that good ol’ excuse of life getting in the way. But when thinking of it, it’s actually me getting in the way of myself…I mean it’s me who make plans and then break than again. So on behalf of me, that part of me that is the putter offer, that part of me that has made a big, brighter, endless list for tomorrow, I am sorry.

While I have be absent in here I must confess, I have cheated on you with other social media, namely Instagram. I have ever more ripped off the seal that was keeping shut tight the lid on my disability and my thoughts around this, as well as going a bit ninja (as my bestie would say) and have started to speak about things that do not sit right with me- the stereotype around disability and how stigma NEEDS to end. Now.

Now, don’t worry I am still full of rainbow fluffiness happiness and that will not change, but in order for this rainbow fluffiness happiness to continue things need to be aired, views need to be discussed and challenged and we need to stop being so darn polite and just say if something is bothering us- like can people just treat me as another human being and not treating me as if I am the disability? I still think in today’s society a lot needs to be done for it to be a place that is fully inclusive and rather than, or only, accepting differences but embracing differences too.

On here, on this blog was were my love affair with writing begin, and without sounding like Joe Goldberg from You (a Netflix series, surrounding a guy obsessed with, and a therefore “would do anything for” love-and this really does mean ANYTHING!), where I found you. It was through writing I found a way to express what I found difficult to say aloud. Reader this felt utterly freeing and found that the Queen of vulnerability, Brene Brown was right, vulnerability does pave the pathway for connection. Sharing parts of my story, expressing my thoughts on my disability, only allowed me to get to know others that have gone through similar things.

I guess I wanted to remind you that letting people see who you are is important. Why? Because it means that you don’t have to continue to hide and make up this idea of someone who is not you. Because you can start to see who you are and feel your power. Because by doing so you will feel less lonely; in this world of social media and by sharing your experiences there will be people reading/hearing your words and will resonate with them and maybe reach out. At the back of this they will also feel less alone in the world, finally finding someone with a similar story to them.

I want to ask you not to be afraid to using your voice-your voice is your power. It is your weapon that no one can destroy. Use it well dear Reader. I am right behind you.

I intent to show my face on here a little more this year. I hope I will see you here too, hoping we can thrive together.

Until next time

All my love XX

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It’s a double whammy!

? It’s a Happy double whammy today?? Happy Magic Monday and also Happy Sticker Day ?

I love me some fun stickers to spruce up my calendar… it’s adds a inspiration for the month (as any rainbow unicorn hearts or little positive words would ?)? Sooo get fun when your organising it might takes the edge of things that feel a little weighty, especially at the start of the year!

Also my writing is a little different than most but that’s ok. I can understand what I have wrote and that what matters, right? If you have a similar writing character, don’t let it stop you from creating your writing artwork ???

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Reframing Disability

✨? And don’t be made to think differently.

Happy Magic Monday My Fabulous Ones?✨

Image description: words on a yellow-green cut out piece of paper that reads “A disability is something that you have, it is not you.” The paper is placed on a pink and green background

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Stop Hiding!!

? Happy Magic Monday my Fabulous Ones?

There’s a saying never be afraid who you are. I for one am a huge advocate of this. There was a time when I would ask “ Can you not get my wheelchair in the photo?” But really what is there to hide? Why should I hide apart of myself? Why should I fear the behaviours of others?

Ignoring apart of myself will only lead to misery, to fixate on a unhealthy desire to be someone that I’m not destined to be and really who I don’t want to be. The thing is this hiding thing came really from a place of wanting rather the needing ??‍♀️ and who honestly wants to hide?-unless you eat the last sweet in the packet and you feel all eyes glare at you ??

So for the last few years I have dropped this want to hide and have allowed my wheels to be seen …and they do also say give credit whet credit is due and my chariot really does need this after all where she have taken me!

Let us not be afraid of who we are, let’s try to acknowledge all parts of ourselves . If we just try and not let those naysayers pollute our perception and force us to believe that we “should” be a certain way. Would we really want to be around these people?

Show of them beautiful peacock feathers and don’t be afraid in doing this … and just a heads up make sure no one is around as you devour the last sweet ??????

[Image description: Rebecca is sitting in her wheelchair. Rebecca is smiling at the camera. Behind her is a grass area ]

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Self-belief

?✨ Happy Magic Monday My Fabulous Ones ✨?

This is your Monday reminder, via the wonderful @stacieswift, to always try and go after what you believe✨✨ It is not a easy thing to do at times, but it is always worth it! Believe in your lovely self ???

[Image description: the word ‘HAVE’ is printed in white in the centre of the image. Underneath is the word ‘COURAGE ‘ written more bigger and bolder. Underneath reads italic words in brackets ‘EVEN IF YOU FEEL A BIT WOBBLY AT FIRST’. The background of this illustration is pink. This illustration is by @stacieswift]