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Disability Pride Month

Image description: Rebecca, a white woman with brown hair, wear a colourful dress with a with polo, red shoes and a colourful beaded necklace. She sits in her wheelchair, with rainbow spoke guards,. with her arms raised above her head. Rebecca is in the garden surrounded by flowers.

July is Disability Pride Month.  At first glance, Disability Pride, can be considered as unwavering confidence, however this is one small part and may not always necessarily mean fierce confidence.

When I first think about Disability Pride I think about what my disability means to me. I think about my Cerebral Palsy and how it is a part of me. A big part of me that shapes my every day. From varying ways of my tremors, to the amount of energy I have, to the level of speed at which I work at, my CP looks different everyday too.  By getting to know and acknowledging the different parts of my CP, I know myself better.

Getting to know and understanding different aspects of my disability, I am able to communicate my disability with others. Though this may sound like a basic thing, it can also require courage to say such things, especially to people who may not be familiar with your disability. I first wrote on this blog about my CP—likening my CP to a lifelong teacher-. Though some of my thoughts may have matured from a few years back, learning about disability from different perspectives in the community.

Image description: Rebecca wears the same outfit. Her legs hangs over the right armrest of her wheelchair.

I’d like to think that through clear, honest and insightful conversations about disability, stigma can be reduced, challenging views about disabled people. It is a way to really see disabled people. It is a way to hear disabled people’s voice. By inviting such conversations change can start to be implemented.

Access can be put in place, in one vain in terms of physical access, i.e. lifts, ramps, hearing loops, audio descriptions, but also in terms of institutional access, i.e. work, education. Yes, a lot of places do have such facilities in place, but it’s not everywhere, and society cannot be branded as fully accessible and inclusive if not all of society is accessible and inclusive.

We have seen over the last year just how much disabled access have been but to the bottom of the pile. For example, it has been observed just how quickly things were put in place for people to work from home when in lockdown, even though this has been it requested by disabled people time and time again for such adjustments to be in place. Other clear indicators that have demonstrated that disabled access have been seen as unimportant is when, in another example, some restrictions were eased and cafes and restaurants were allowed to offer outside dining and tables and chairs were placed on pavements, which meant that this made it impossible for people with mobility aids to navigates streets that had tables and chairs on them. Or even more shocking when these tables and chairs have been set up in disabled bays! Need I say more!

Though I have given a few examples of inaccessibility, this must not overshadow our pride and celebrations in how far we have come. We can take stock of these achievements and can act as a reminder that access can improve. This pride and the celebrations of the disability community can also inform and trigger thinking points in others about how they can help accessibility for disabled people be better.

Image description: Rebecca still wearing the same outfit is siting in her wheelchair.

Events such as Disability Pride Month is an opportunity to highlight identity or what you have (depending on whether you prefer identity-first or person first language) is not shameful or dirty or something to keep under wraps. It is to highlight a part of who you are. It is to highlight the beautiful community that disabled people have built and the milestones we have crossed together. It is to highlight how we can continue to move forward and keep campaigning for change. This is what Disability Pride Month means to me.

I hope you have a lovely Disability Pride Month, however you are celebrating.

All my love XX

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Come in and sit down…

Image description: Lots Bluebells in a wood and tall trees in the background

Dear Reader,

It’s way over a month now into spring now, with a whole season having past with my beloved angel in the sky.  The feel and the sense of loss hasn’t grown old, it still feels fresh.  I’m not sure if its rawness will ever fade. I don’t think it can. I would like to think that it is how we remember and keep alive those who have gone before us, that can give a sense of comfort and that they are in a some way still around. This is a note that I left on last time I wrote on here.

If you have read my blogs before, you may have noticed a slight emphasis I have on time. Time is something that I think a lot about. Whether it’s thinking about what time give or steals, how we occupy  time, how we wished time was like, the longing to speed time up or down, the memories that time has given us, the imaginations  which we experience if time had gone in a different direction and thinking about how we want the future time to look. I started this blog post saying how we have entered the next season in the year and what this have meant for me, with a huge absence being felt, that has come with it lots of reflection and trips down memory lane.

A few weeks ago I shared on Instagram the tongue twister that Dad used to say “Come in and sit down and don’t be outside looking in at the people inside sitting down looking out.” This was one of the things that kept coming back to me. It was one of his favorite things to say when I was a child. I remember laughing as Dad would say this phrase at such speed, trying to keep up with what was being said as I framed this in my mind. I always knew what was coming when he would start this tongue twister, “Come in and sit down,” taking a slight pause before he would  say the rest, though I would always be captivated as to what was to come next. I think this is why this memory is soo vivid because of how joyous such times were.

I have recently given more thought on what this tongue twister could actually mean, looking more closely at this phrase. For me it asked for division to end, or to start to close this gap. To stop looking on. To stop judging others. To join others. To sit with others.

When people see others who are different from themselves, they can cast them as outsiders and treat them unfavorably. They stand on the outside passing judgement, without getting to know them yet simultaneously thinking that they know everything about them.  They have listened to the stereotypes and words that have been associated with this difference and run with it, without ever getting to know the person and challenging their views. Here, I am talking about disability and the way that disabled people are seen-because that is what I have experienced and is something that is close to my heart.

It has been considered okay that disabled people have been viewed in this way. On the back of this, disabled people have had to fight to be seen, protest for their rights and, in one way or another, prove their humanness (even though we really shouldn’t have to). Sometimes though this is still not enough, as people have a hard focus on what they have been taught.  They are maintaining their distance, unwilling to let go of out of date/never in date ideas, looking through a metaphorical window from another room. Meanwhile we are over here pent up with fury and frustration at such judgment, wanting  to smash down that window and whatever is reflecting back at them and ask them just to dump the prejudged ideas that they have and to get to know us.

Now more than ever, this idea of disability needs to be removed that sees disabled people as less than, which could prevent adverse behavior from taking place.

Keeping the momentum going on spreading disability awareness, however hard it can get, is crucial in order for change to happen. On them not so easy days and going under a shell feels more comfortable, this is when we need to resist from hiding and say what is on our minds.  The reminder of Dad’s tongue twisters has been a massive pull for me, especially on them wobbly days.  It made me stronger and awake to do what I can to raise the rights and equality disabled people however big or small-to make passing judgement less of a thing. To encourage others to listen to what is being said. To create thinking points for others that makes them ask ‘What if it was me?’.

So, as Dad would say, come in and sit down and don’t be outside looking at the people inside looking out.

All my love XX

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Untitled

Sunset in a field, with the sky shades of blues, pinks, oranges and yellows
Photo taken by @mairead.may
Image description: Sunset in a field, with the sky shades of blues, pinks, oranges and yellows

What am I thinking? I don’t know what to write. My thoughts are even obscure to me. Am I being to personal? Too impersonal? Finding words too distance to capture my mind.

Since the passing of Dad in November, it’s has been an incredible challenge to write any thoughts. It’s as if the craft I known that gives me a sense of solace and releasing nature has somehow faded, as I find it ever harder to form sentences and orchestrate the right words. All feels too out of reach. Too foreign. But here I try to piece together some reflections, some which may be a little disjointed in places.

People say so casually, ‘Life is too short.’ ‘Life is too short’ to self-persuade to make that purchase on them beautifully decorated jeans that you keep day dreaming about. ‘Life is short’ as a bid to talk yourself in to a day off from the daily hustle and just retreat in something that gives pleasure, rather than just doing it anyway. ‘Life is short’ to banish the guilt spindle that your mind plays when you reach the end of a crisp packet. ‘Life is too short’ when you try to put out the fire over the woes you have as you try to look at the bigger picture, or try to convince someone else too to worm your way out of something. ‘Life is too short’ is said in response to just about anything to reduce ambivalence or fear over something.

But life is too short. A snap shot of time that we experience. A period of time that we forget to cherish. A time that its fragility is only made known when we have witnessed the gut-wrenching truth of this once fleeting statement.

As I write this, I wonder what Dad thought of time, how he perceived it, what he would have done differently and what he wished to do. Life and time did not play a kind hand to Dad. From a young man Dad had Multiple Sclerosis, in which consumed more and more of him over time, time that became not his own.
Dad was a proud strong Irish man, a man of the hour: whether that was in his young days and pulling tug of war (I was told that team players were always excited when Dad was in their team as a win was likely a guarantee), or rounding sheep, or, a little late, making our house a home with his initiative mind, or just feeling safe in his arms when I would crawl excitedly over to him, as a child, when he came in from work. It is fair to say that when I went to him panicked that the cover of a favourite book had become detached from its spine, it was a doddle for him fix. A strand of cello tape later and he would say with a proud smile, that he could alleviate that panic I had, “As good as new” as he handed me back my book.

This strong character is something Dad will always be known for by myself, my family and just about everyone who knew him. Time took away a lot of things from Dad, but strength was not one. He would put up the toughest fight no matter what came his way. This is one of things that truly want to honour and keep alive- the sense of focus and determination he had- as I go about my days.

The aftershocks of Dad’s passing will be forever felt, as myself and the rest of my family try to navigate this huge space that has been left. There are so many things I want to say to Dad and will want to in the time before me. Finding comfort in little things has been something so soothing. Comfort in thinking what Dad might I have said. Comfort in thinking about his laugh. Comfort in signs to tell me that he’s nearby , like the sight of white feathers or seeing robins (his favourite birds) or a blue sky or a rainbow or the moon (when I was a child I would always ask him to take me out to see the moon before bed). Comfort in memories and sharing these with others, keeping him forever alive in some way.

Loss is an inconceivable thing and something that will always feel in this vein. It is so very hard to think that I am here writing this post. I guess the thing that I can only say here is that if you are experiencing something similar, of a loss, I hope you can find comfort however small it may be.

XX

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Seeing Yourself As Enough

Dear Reader,

Ever get that feeling that you’re not enough? That you’re not doing enough? That what you are right now and who you are is not enough? Well this is something that can honestly feel quite lonely and depletes one’s energy and when in such a mind-set….the hope of this turning round does not seem like a move that can be made. However it’s me who is writing this post and even though I can annoy the crap out of myself being a positive Polly and sometimes just wanting to see the volume of water that is in the glass in whatever damn way (without a psychological explanation being attached to this), it is true that this is not a feeling that is felt by a singular person- it is experienced by many.

It feels like I’ve gone off into the deep end, I didn’t mean to here but fear of not doing enough are thoughts that I have been experiencing of late. Back in May I shared on my social media that I had been experiencing pain as a result of my Cerebral Palsy, which meant I couldn’t do very much at all for a while, and for someone like me who always wants to be a busy bee this was kinda hard. Since then these aches have been on and off depending on how much I’ve been doing. It’s that knowing that I’m not doing, not continually moving forwards, which at these times are my more prominent thoughts, the insistent chatter of what I could be doing clogs up the ol’ mind. Somehow this has more of an importance than it did before. I guess it’s a classic case of when you can’t do something, you want to do things even more with the imagination running wild with ideas. Ohhh how the mind chatters!

Sitting there with all these thoughts was kind of like toying with someone else’s story-it wasn’t I who was living out that day, it was a character I created in my brain. A character with no flaws who navigated a flawless day-ironically, this whole idea is flawed! The thing is by participating in such creativity and building a picture of a person of who you think you should be kind of puts one into self-destruction mode, picking out parts of oneself that aren’t enough, that they should be more focussed- basically berating anything that makes one human-the mistakes, the getting things wrong, the going at a different pace to everyone else, the not living up to expectations people or even you had of yourself … the list is endless. All this obsession over what you think you don’t measure up to will only make you feel worse.

I do think now more than ever we need to be kind to ourselves as well as each other. This year has thrown everyone sideways in one way or another, yet we can find ways to tear ourselves down and tell ourselves that we should be doing more or that we’re not doing what we should be. There is no ‘right’ way to think, but if we just found a way not to be too harsh or expect too much of ourselves and be a bit more gentle maybe we would start to feel a little lighter in a world that already seems so heavy. I guess what I want to say is that it’s okay if you are not where you thought you would be, focus on where you are and the pathways that could lead from there. It goes without saying that everyone will experience peaks and trots and just because you find yourself at a low, up against a challenge, facing a flare up, it does not mean you can’t get back or that it will be like this forever. I am saying this to you as well as myself, do not let these not so great days define who you are.

There’s that saying ride the wave. Although this can seem like a fleeting statement, it actually does have some merit-stay with me here. Instead of fighting what you are experiencing and burying yourself down some dark rabbit hole, I started to realise, when I had to take a break from things that rather than focusing on whether or not I was measuring up to being enough or trying to justify to myself as to why I was not doing thing, I started think about how just resting and being more present could just help the future me: if I rest now, I’ll be able to do more later.

All my love XX

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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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One Step at a Time

?Everything takes time. Focus this moment ?

I hope you find a little bit of magic in your Monday ?✨?

Illustration by @stacieswift

Image description: An illustration of rainbow is in the centre. With white writing underneath that says “ONE STEP AT A TIME” with a white line drawn below this sentence. The background is bright pink. This illustration is by @stacieswift

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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