Image description: An old photo of a ten year old Rebecca, a white girl with brown hair that is in a plat (out of view). She is wearing her school uniform-a brown jumper and a knee length skirt. She is also wearing with Piedro boot with knee high white socks. She is sitting in her wheelchair across the road from her primary school
Piedro boots. Memories of embarrassment and wishing for their non-existence comes with hearing or thinking of these shoes. Shoes that I’m wearing in the photo above- I think I am about ten here. The nature of my disability means that when I do walk, my shoes have to have ankle support-so not every pair of shoes that I set my eyes on I can wear-. This term ‘ankle support’ was so pronounced when I was younger. I felt so othered by it, when I was told about the type of shoes that I should be wearing.
Receiving yet another box of specially made shoes I hoped that they would somehow be more of a vibe, more of a pair of shoes that I would in every way feel comfortable to wear, even though I knew what I was getting. I thought they didn’t match my identity, but, really, I was trying to chase somebody else’s. This was especially true when I grew into my teenage years.
Most of us growing up wanting to do whatever we can to fit in, no matter how comfortable or uncomfortable it feels. We might pretend to like particular music or style our hair in a certain way or perhaps we try to suspend an aspect of our personality, or, like I did, want to wear a pair of shoes like the rest of my peers had. I was a Noughties teen and at that time Dolly shoes were all the trend, and so I wanted to get in on this too.
After some tough persuasion, I had my own cute little black pair with a bow at the front. I felt soo cool! I also thought this a small way to claim that I was a teenager. However there were only so many times that the back of the shoes would come away from my heel, when I would take a few steps, making me even more unbalanced, before I realised that these shoes weren’t making me comfortable like I thought they would. This was hard to admit.
As I write now, I think about those who dress their feet in plasters to save their feet from getting sores and compromising squashed toes for stunning outfit details- we’ve all got that t-shirt, in one way, and shoes to match!
The thing is though it is never just about shoes or music or hair styles or whatever else we are trying to mold ourselves into. It’s about who we feel we are when we are seen sporting these fashion trends or bopping to popular tunes and, more importantly, how we feel when we are without these things.
Secretly, I was hoping that if I was seen wearing these Dolly shoes it would somehow gloss over my disability. That (and I do apologies for the wording of the rest of this sentence-it just captures my thoughts back then) even though I was in a wheelchair, these shoes would allow me to pass as a Noughties teen, with disability not being part of the equation. How silly was I? Of course these shoes wouldn’t mean that suddenly my disability would be hidden from view like some kind of magic or something This… magic dust, if you like, would come years later, unpicking ablism and finding my identity as a disabled woman, beginning to feel comfortable with my disability.
When I started to settle into my disability, I started to recognize the shoes my feet actually needed. The term ‘ankle support’ no longer set shivers down my spine. It actually sets me free as it communicates my needs, and enable me to feel comfortable in the shoes I wear. Now I know what will make my feet happy.
I must admit though, it would be a whole lot easier if more accessible footwear was available.
Do I still feel my heart pang when I see shoes in the shop window that I can’t wear? Absolutely! Am I picturing an entire outfit based around those shoes? Absolutely! But when I think how I might feel in those shoes… that giddy excited feeling slowly evaporates. I know if I wore those shoes, I would be uncomfortable….and so those shoes that a few minutes ago (sometimes times this take a lot longer) receives a head turn. As I go in search for shoes that makes me feel giddy, excited and comfortable!
This is a reminder to anyone with a complicated relationship with shoes: Stop stealing everyone else’s shoes, dance in your own!
Image description: Rebecca, a white women with long brown hair, sits on a garden step surrounded by plant. She is wearing a knee length dress with green , red , pink and orange flowers on it and a colourful beaded necklace.
Dear Reader
Lately, I’ve been thinking about the way thoughts, ideas, views can change and oppose perspectives and reflections and/or how perspectives can swing between the two.
I used to think that was a bad thing. That how could we be deemed unreliable if we changed our mind like the weather? That it made whatever we said invalid. As someone who has a track record for changing my mind and feeling guilty to have this trait, to say that this is actually okay is actually quite liberating and proud moment for me. There are thousands out there with a similar mentality to me and we often get branded as wishy-washy, uncertain and sometimes, as my family cat Queen T is literally and it’s one of the many things I love about her, a sit on the fencer (though with my balancing being one of my tricker skills, it’s not as quite a mundane task as one might assume). I would like others like me know that hey! You, me, we are completely fine, we don’t need to change.
I’ve played with these thoughts for a while now, with various observations and experiences leading to these reflections. I first shared my ponderings on uncertainty on my Instagram after a trip to Florence in April.
I was between two extremes. The first between fury and frustration at the inaccessibility and the constant excuse being given that it was an old city. It’s not about eradicating history, but it’s about making accommodations and edging towards inclusion and not maintaining historic believes that disabled people aren’t active members of society.
Yet on the other hand, I was struck by the superb detail of the old around- can I really say that I want a fairer world for disabled people but still marvel at the things that disables us? Or is this me with my learnt thinking that you can either be one or the other, not both. That things are either black or white, not grey. That like marmite, you either love it or hate it, there is no in between. But perhaps you can be both. Perhaps things can lie in a grey area. Perhaps you can like marmite. Perhaps. Perhaps. Perhaps.
These reflections extended further when I saw the first ramp on the second day. The joy, the relief, the unheard welcome. It had me feel that sense of gratefulness that I know I shouldn’t feel. Grateful to access a public building, grateful that simple rights are being met? Does this reading this sit well with you? How often to you hear non-disabled have thankfulness for entry in to such places? Reader, it’s more likely that the number of steps will get criticized. Yet in this moment, I felt so happy that I could explore with ease and go about my day.
In recent weeks, my thoughts have become more stretched. I want to thread carefully about the wording of this because I still don’t know where I sit with it but as some of you may know writing for me is my way to try and makes sense of things somehow. And it revolves thoughts around independence.
For the past few weeks, I’ve experience quite debilitating back muscle spasms which meant I needed even more help than usual. Like many, I have learnt through the years that it’s okay to receive help. It certainly does not make you lesser- everyone has different ways of doing things and personally I love working as part of a team. Obviously, though it was a little frustrating as I just couldn’t get on with things. As I’m slowly starting to get back to some kind of routine and relieved to get some of my independence back.
I sometimes feel like when we celebrate independence, it can feel like we’re advocating for being as non-disabled as possible, writing disability off as something bad. But it’s not about that- it’s about feeling and doing what is comfortable for you, and simply doing what you need to do for you. As I can now take a few steps with a bit of ease, my mind springs to What would Inspiration Porn say? A thought that tries to suppress my joy. Something that says I’m doing something ‘in spite of my disability’, with the toe curling saying if a disabled person can do something, you certainly can. But it’s more about… getting back to my normal, what’s in my scope. So I want to reject this thought. I want and need to celebrate about feeling good again. No one should take that away from you, so don’t let them
The point of this post is to say it’s okay to be on both sides of the coin. You don’t have to have a fixed idea on something, it can change, it can be fluid. You don’t have to grip firmly to one idea
Image description: Rebecca, a white woman with brown hair, is wearing a pink and orange closed buttoned cardigan and pink trousers and shoes. She is sitting in her wheelchair that has peach spoke guards with multicolored butterflies dotted around on it. She is on a bridge with a lake running underneath
Dear Readers,
Woooo! It’s been a very long while since I wrote on here! In fact the last time I wrote on here we were transitioning from summer to autumn and now a whole other season has passed.
The reason. Well really, I have no excuse only to say that I’m not a very good juggler! But for a while now I have been itching to get back to blogging things and today is that day!
I want to write here, a few little notes for both you, and also I, to keep moving forwards or even to how we might go about being at ease with where we are- an underestimated thing and something I find personally hard to do. I tend to overly self-access looking for things I’ve missed or not executed as well as I should have or what’s next (attempting to ensure that the next thing leaves no room for errors). I know sometimes we can get ourselves in to a slump in one way or another and the other day I thought about what are those things that help me, and I wanted to write them here.
So, here goes (btw these.. ‘tips’ are just me thinking out loud- so use, don’t use, add remove or even ignore.)
Do more of what you love and reframe from internalizing ableism
A lot of us have a guilt thing around pleasure and feel like we need to ‘earn’ enjoyment. The contents of, and how much, enjoyment we ‘allow’ ourselves to have will be measured by how much we’ve ‘worked for it.’ We have become our own unnerving headteacher that everyone dreads (Matilda’s Mrs. Trunchball type).
As a disabled person who needs more time to do things day-to-day, I feel sometimes I should be doing twice as much in order to seek reward. Though we know this thinking is nonsense, playing into that ableist view, and that everyone goes at their own pace. So for those of us that identify as disabled or chronically ill this is a reminder to not chew on ableist words. You deserve, we deserve, just as many ‘nice’ moments as non-disabled people
It could be spending time with family and friends, exploring new places, reading a good book without thinking of what we could be doing or anything else that puts a smile on our hearts.
Comparison’s a thief
We don’t have to look far before we find that we are pitting ourselves against someone or something else doing something better, or leaves us, in whatever way, feeling less. I mean we all like to push ourselves and make improvements if we want. But it can also make us overly self-criticize, which can stop us on our tracks.
So how can we stop this? I don’t think there’s a definitive answer. But I do think a part of this is about being more aware when we are comparing ourselves and that the thing that we are comparing ourselves to something that is bigger and complex than what we are perceiving. Social media is a great example of comparing ourselves to someone else’s photos, status updates and snippets of their lives. But the same people also have parts that they choose not to share and are more than likely doing the same- comparing themselves to another person.
So we need to try to prevent ourselves from going down the rabbit hole and just remember that what we think is not the complete story and that everyone is just trying their best, including ourselves.
Connection is key
Humans are social beings. The amount of which will vary though, with each individual having their own unique social battery. Some peoples’ runs flat quickly if they socialize too much and need time away to charge, while other social batteries can be sustained and even be fueled by socializing.
I don’t want to sound greedy here, but I think I’m a bit of both. Sometimes i just need space and other times being with others is more than a want, but a need. I believe that perhaps our social battery is dependent on how and who we are spending it with.
No matter which way we flip I think that when we are not feeling our best a lot of us will turn to a trusted person or people in our lives and also when things are going well.
Loved ones can always energize me just by being with them…. I hope this can be the same for you too and if not let this be a reminder that it’s okay to step away and reconnect with yourself.
Get out of your own way!
Okay, this is another cliché but it true. We spend so much time thing about What ifs and worrying and talking ourselves out of things that in the time which we are doing all that, we could have done the things that we are putting off. This is a whole lot easier saying than actually doing, but by trying to be more of a doer we can break the habit of sabotaging ourselves. So before you completely talk yourself out of doing something-just go for it!
These are a few things that help me get out of my own head sometimes. I hope these can help you too.
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.
________________________
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.
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
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
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 .
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.
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.
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.
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.
