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Disability Pride: It’s More Than Inhaling The Good Stuff

Rebecca, a white woman with long brown hair, sits in her wheelchair
Image description: Rebecca, a white woman with brown hair, wears a rainbow coloured strap dress-above the knee , rainbow plimsolls and sunglasses with a rainbow rim and a pink crochet hat with daisies dotted around on it. She is sitting in her wheelchair that has peach spoke guards with multicoloured butterflies dotted around on it. A lake is behind her 

Dear Readers,

I rest confidently in my disabled identity, it’s a part of me. It’s at the core of who I am.  I love the community- how we can relate to each other, the similar threads that holds us together that tells us that we’re not alone-. I love the creative innovation within disabled individuals, which enables them and then the rest of us to access, enjoy and explore the world, I love the disabled joy that comes with and from this. This all equals my Disability Pride. Though there’s another part that doesn’t always seem that to fit this description, on the surface, yet I know that it is a key part.

 I tend sometimes to have an all or nothing approach to certain things-when something good is happening and something occurs that throws me off track, my mind, my energy, my mood is redirected and I can’t seem to find my groove and a balance (though with my Cerebral Palsy and coordination being my number one difficulty, it’s not that much of a puzzle as to why I find this hard!). So, when my disability is showing an unwelcoming face, I feel like a fraud when I’ve said I’m disabled and proud.

Feeling like I’ve failed as a proud disabled person can look like when my body is a few steps behind where I think I should be, going slower than I would like, or when I wish I could to seemingly simple tasks like putting in my own earrings or when something is inaccessible, wanting my access needs to evaporate. I talk myself out of identifying as the person who claimed that she was disabled and proud.  How can I be when I have such thoughts? I think.

To be disabled is often thought to be awful, tragic, a life sentence. It’s in those passing comments, it’s in the swarm of accolades others think you deserve just for existing. It’s in people’s inability to understand that you go about your day in a not-so different way to a non-disabled person, just with a few adaptations. It’s in how the media portrays disabled people using those demeaning expressions such as “In spite of their disability” or “Beating the odds” or “Their disabled but” and how we are represented in films.  The associations that are made with the word disabled then, to non-disabled people and to some disabled people can make it seem illogical as to why someone would have pride with their disabledness. Surely with my above feelings of being woeful about certain parts of my disability, I am playing into this narrative?

This is another thing that can be thrown into the mix of Disability Pride. This term can feel so radical and for those who believes that disability is still a taboo subject (though it never was), this is perhaps too radical. This opinion can get trickled down to those of us who are disabled and proud, making us question our identity and we feed on naysayers’ words. When I have done this, I hear the familiar knock of the sound of failure at my door, telling me that I am again falling short when I have said what I’m disabled and proud.   It feels like I have wriggled out of this proud skin, no longer feeling the person sitting confidently in her wheelchair, with her arms outstretched or demonstrating a sassy pose that screams “This is me.”

Though I am beginning to learn that rather than disability pride being a fixed state, it is fluid and covers a spectrum. And when thinking of it isn’t this term all about recognizing and taking stock of all of the complexities that are in our lives as well as reveling in all the blissful moments?

So, when I’m in a reflective mood and I feel myself wondering down a path that doesn’t spark joy, instead of thinking that I’m a disabled and proud fraudster, I will try to think right now I am at a different stage of my pride and that’s okay.

If you have had, or are having a hard time with your disability pride, please know that this isn’t you failing. Disability Pride is so much more than just inhaling all what’s good

All my love XX

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Getting comfortable with being uncomfortable: I’m not sure I can.

Rebecca, a white woman with brown hair is sitting on a step in the garden.
Image description: Rebecca, a white woman with brown hair, wears a chiffon summer dress that is mainly with black and mint green squares and flowers dotted around on it. Rebecca is sitting on a step in the garden surrounded by plants.

Dear Reader,

I am writing this, after needing a bit of rest for neck/shoulder pain that left me looking some kind of frightened hen when they are uncertain of their next move or something, every time I turned my neck. I’m doing lots better, taking things slow and getting back writing is making my heart sing.

This is the thing, as unbearable as actual pain can be, so too is the less physical pain. By this I mean, having to pause from the daily and resting, whilst wrestling with thoughts of wanting to get on with the things that are buzzing around in your mind. This is before we get into the guilt tied to this- switching on an episode of Good Witch (total feel good, magic vibes), rather than sitting at my desk working on pitches and other writing bits and bobs-. It’s the whole thinking the we’re human doers rather than human beings thing, that I think mentioned before on here. No matter how many times we remind ourselves of this, all the thoughts of the things that we think we should be doing keeps prodding us.

I guess one benefit of this time of rest was that I could read a few books that was in my ‘to read’ pile. One of these books was Speak Your Truth by Fearne Cotton . A fantastically insightful book about finding your voice and say what is true for you. I think this is a hard one for most of us and like Cotton says, especially for British people the tendency to be polite overtakes and our we end up holding in our chest all those unspoken words, perhaps putting other people first and not honoring ourselves. This is something that felt like a huge theme for me personally this year, so it goes without saying it triggered a lot of thoughts.

There was one point especially in the book that had me do a spot of self-reflection. Cotton asks her Readers “When have you been silent?”. Obviously, as with all big questions, it sparked a pattern of thought. I reflected on times when I haven’t spoken up when I know I should have. Moments when fear has taken charge and have dictated socially appropriate responses abandoning my own thoughts and feelings. Situations where it felt like I’ve lost access to the library words, which on the one hand can set us free but on the other can be so trapping. There have been a few moments this year where I felt like I’ve stepped up to the plate and voiced my thoughts, but there have also been others when expressing myself felt too much, experiencing unease.

There’s been occasions when passing comments were made or I felt unfairly questioned, and it felt as if I retreated in to myself for that moment, frozen on the spot, unsure which way to turn only knowing that I wanted an escape route. Like stumbling on a thorn, instinct is to go into protective mode and perhaps cover the injured area with your hand. Similarly, when in situations where I feel judged, dismissed or unseen my protective mode has me growing quiet. It’s a strange thing when we think we are so in tune with ourselves, but then a situation or rumination of words can leave you unsure, or, as Cotton explained, it can reveal dissonance within yourself. It’s only on reflection I, like many others, think of all the coulds that should have been said on my part, mind again on over drive.

Though I mustn’t forget those moments, where I have spoken up and voiced my thoughts. Written word has always been like a best friend to me, especially when trying to express more of the harder stuff. So this companion was a tremendous help in a couple of different situations this year. It gives me time and space to work out what I want to say, respecting other people’s thoughts as well as my own. Articulating myself in this way in occasions where saying what is true for me allows me to get around the instant thought of this is uncomfortable and work out ways to move through it. I’m not saying it’s easy. The delete key get its fair use. The flash of the cursor occupies the same space again and again. Every word seems to have this inability to convey my thoughts and when I do finally manage to put together some words, I am still hesitant. Here I must put a side this learnt behaviour of keeping quiet because how is anyone going to know how I feel if I do and I know that no one else can say how I feel or think but me. Now more them ever the word needs us to speak up.

I titled this post “Getting comfortable with being uncomfortable” and as I write, trying to get closer to my answer to this, I think about what is comfort to me-what do this look like? My immediate thoughts go to that feeling in the evening when I get into my PJs and taking of my make-up if I’ve worn any that day, having a cup of tea (preferably with cake), round people that makes me happy, our cat Queen T and her sensationally soft fur coat and her soothing purr, Robins, Mum’s apple crumble, my Sister and I belting out 90’s tunes (nostalgia central), with my bestie and playing googly eyes (don’t ask-for another time), writing this post (doing my prescribed exercises every few sentences), taking time off social media the last couple of weeks (I love connecting, listening to others and sharing my voice, but sometimes it’s just good to catch some distance), more tea (cake only required if it hasn’t been granted with the first mention of tea 😉 ), watching clouds form and reform in unique shapes as they pass in the deep blue sky, days when barriers towards disability aren’t existent (but this leads to a whole other topic), being by the sea, being in the mountains (please don’t ask me to pick between them). The list is endless.

All these things that I listed are things that are filled (mostly) with peaceful moments both externally, with little to no sound, and internally, really feeling held and experiencing a sense of weightlessness and captures my introverted heart somewhat. I guess my comfort is synonyms with the feeling safety and without worry and so I think sometimes when voicing those things that are perhaps hard to say causes my insides to do a summersault, bringing with this a feeling of ambivalence. It seems to me that sometimes remedies for emotional unease are more difficult to locate than for a physical ailment. For example, the warmth of a shower or lathering on Deep Heat as I’ve been doing for muscle soreness lately is almost instantaneous, if only a while, but there is no quick, easy or painless aid, if you like, for things that play on your emotional strings. It requires you to go against your automatic response of shutting down.

I’m not sure if I will ever be completely comfortable with speaking my truths, especially when it requires all of my might. I’m not if I can even completely own some of them.  I don’t think I’m alone I in this. Maybe learning to be comfortable in discomfort isn’t the goal. Maybe we just need to get through these times…though we might not feel a total breeziness when speaking about the tricky things, it’s important that we do. Perhaps in time it will then get easier through move through discomfort, the more we do this. I think this thought could be a comfort in itself.

I hope some of my thoughts that I’ve shared have resonated with you and have helped in some way. I also hope that these writing have alleviated, somewhat, the urgency and view that you need to get comfortable with being uncomfortable-if you can’t get on board with this. Just do what you can, that more than enough

All my love XX

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Feeling Top Trumped

Rebecca a white woman with long brown hair. is sitting on a sofa holding a box of The Simpsons Top Trump cards
Image description: Rebecca, a white woman with long brown hair, wears a red blouse, under a green tank top with little red flower heads and red hearts on it. She also wears khaki green jeans and pink socks. Rebecca is sitting on the sofa holding a box of The Simpsons Top Trump cards

Dear Reader,

TW: Internalized Ableism

I’ve lost count of the number of times that I have been put in to an ill-fitted box, metaphorically, that is covered in tape with red writing that spells out the word ‘fragile.’ ‘Unable,’ ‘unequipped,’ ‘incompetent’ would also be words associated with this fixed, rigid, cubed space.  A space that does not mirror, in the slightest, a disabled life. A space that has been orchestrated around a skewed idea of disability. It feels that when you are disabled you have to work twice as hard to be seen, to have some kind of value. Though I am also aware that I am part of one marginalised group that feels misunderstood, to say the least, and can play a huge factor in how we are ranked in society.

I loved a board or card game as a child (I still do now). It sparked a moment of shared fun and joy and, to exercise that competitive muscle. One of my favourite games was Top Trumps. That card game for two or more players, where cards have rankings against a set of qualities and whoever has the highest ranking on the quality in question wins.

I had a pack of Top Trumps based on The Simpsons and my most loved character card was Maggie Simpson, the youngest of the Simpson family, who appears as a yellow cartoon character wearing a sky blue long- sleeved dress with a matching bow in her spikey blonde hair and, as ever, sucking on a tangerine-coloured babies’ dummy. Coincidently she also got the highest ranking for ‘Most loveable’ with a 10.

Image description: a collection of Top Trump cards faced down on a table, with card of Maggie Simpson faced up. She is a yellow cartoon character wearing a sky blue long- sleeved dress with a matching bow in her spikey blonde hair and is sucking on a tangerine-coloured babies’ dummy. Beneath this picture is a set of qualities and values ‘MOST LOVEABLE 10’  ‘SMARTEST 25 ‘FATTEST 25’ ‘BIGGEST NERD 174’ ‘GREATEST ANARCIST 3’ ‘WALK OF FAME RATING 18’.

As kids, Top Trumps was just about getting that higher number and winning that card, playing with innocent, untarnished and pure acts-generally speaking. Though such a focus on winning a game seems so trivial now, Top Trumps is a game played every day with more intensity and stakes that are far much higher .

Rebecca, a white woman with long brown hair, is holding a bunch of cards to her face
Image description: Rebecca is holding a bunch of Top Trump cards up to her face.

We might not be sat in a circle, looking into the eyes of others trying to anticipate the numerical values that are before them, but we are still eager whilst also anxious to find out about what we’ll win or lose. Numerical values are swapped for our demographics or status. The reward of a piece of A6 sized card is swapped for opportunities, entitlements and ultimately our place in society.

I know that as disabled person, the immediate utterance of the word disabled automatically means that, in one way or another, my wants and needs will get judged on importance and worthiness and perhaps pitted against someone that perhaps doesn’t have such things.. For example. when it comes to getting my voice heard and having a seat at the table or having responsibility distributed or accessing education or employment, I know that as a disabled person I may not be the desired candidate. This means that I know I may lose out to those who are non-disabled, as it may feel “more convenient” or “less trouble” or “may require too much work” in terms of putting access and support in place for someone like me. I am left there wondering what is wrong with me? Why am I not good enough?

In this real-life depiction of Top Trumps, the quantity of cards that are in my hand therefore shrinks. This is before I hand over cards based on my identity as a woman, because society, as much as it has progressed, is still very much a man’s world. Yet I am privileged to be holding the cards that I have due to my white skin, my heterosexuality, and being cisgendered.

As a disabled individual there are those cards that I might win back, cards that I would rather loose. These ‘victories’ are funded by that ever-nauseating inspiration porn. Yes, I mean when cards are thrown my way just because I got out of bed this morning, or am seen going down the street, or have a smile on my face “Even though life must be oh so hard.”. These wins feels like I am also losing. Funnily enough though for those who have lost this card, they perhaps feel like they have won because they have done a good deed. It’s like being a kid again when adults let you win a board/card game just because. These wins therefore have no substance yet, I like, many in my position, am made to feel that I should be grateful for the cards or more accurately this type of praise given.

The term of worth and value needs to be deconstructed. We need stop being surface driven, ranking each other based on who we are or what we have or have not got and stop making others feel unworthy and that they need to escape and abandon who they are. We need to stop being guided by the myths and legends that were formed long ago about certain demographics. Let’s put our cards down and not be governed by the topsy turvy societal structure and start seeing and hearing each other. Let’s stop pitting ourselves against each other. Let’s leave competitive streaks only to rise around actual board and card game tables.

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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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

Posted on

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

Posted on

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