Disability Pride

Disability Pride Month can mean various things to each individual in the disabled community.

Some people may see the month as a time to celebrate their individual success and accomplishments, whereas others may celebrate the feeling of pride about being disabled.

https://www.inclusiveemployers.co.uk

Have you heard about Disability Pride? Honestly, it wasn’t until a few years into my diagnosis that I first heard of it myself. Though I think that’s because I wasn’t referring to myself as disabled back then, despite spending weeks at a time in bed, wracked with pain and requiring months and months off from work. Unable to function without help, everyday activities became once in a blue moon activities. There have been many times over the last six or so years that I’ve been too unwell to dress myself or shower. Not as a one off, but consistently for long periods of time. At times I’ve been too disabled to work and to walk. My own disability pride has arrived, but only after battling years of internalised ableism.

I was once a person that believed disabilities were -for the majority at least- visible. I believed you had to have a permanent wheelchair or an aid, a prosthetic or an obvious disfigurement to be considered disabled.

I believed if you were depressed you had to look depressed (whatever that looks like) Despite myself suffering from mental ill health since childhood, I still had this idea that mental illness meant being obviously and outwardly ‘crazy.’ (I use this term to poke fun at my own misconceptions and it is not intended to cause offence.)

I’m here today to say, I was wrong. Not only was this way of thinking disrespectful to minority groups including those with disabilities, it was wholly inaccurate, and it was disrespectful to myself. I spent a lifetime playing down my own experiences, symptoms and health issues, because there was no way I was possibly suffering as much as someone else. But there’s an issue with the notion that other people have it worse and therefore we must ‘suck it up’ and the issue is that it’s harmful. It’s harmful because it attempts to invalidate a person’s suffering. Someone will always have it worse, we know this without a doubt, but to apply that to a person’s suffering (including your own) leaves us open to discrimination, feelings of shame and guilty whilst also furthering to escalate mental health issues.

Disability pride means celebrating all disabled persons regardless of the severity of their disability or it’s visibility. Not everyone who becomes disabled will remain so forever, though many people with chronic and ongoing illnesses will be impacted enough by their conditions to be considered disabled.

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

https://www.gov.uk/definition-of-disability-under-equality-act-2010

My battle with internalised ableism is an ongoing one. Despite feeling more comfortable, open and able to discuss my health and it’s effects on my life, I still feel some guilt around doing so. I feel as if I am seen to be attention seeking if I tell the truth about how my illnesses affect me. There’s a real crossover between being positive and not focusing on all of the things you can’t do, and downplaying symptoms to appear more positive to the outside world.

In 2020 around 20% of the working population reported disabilities. This number, though higher than previous years, is still disproportionately low, considering more than 1 in 5 of us are affected by disabilities in the UK. It is unfortunately more likely that disabled people don’t feel able or comfortable disclosing their disability to their employers. Disability pride is a great way to celebrate disabled people for whom we are. As well as raise awareness, and shine a spotlight on discriminations such as the disability pay gap and lack of world wide accessibility in the work place.

The purpose of DP is to highlight that a disability can have a significant impact on a person’s life, whatever the cause and regardless of its visibility. It also encourages more people to be proud of their disabilities. Perhaps you’re like me, and find it hard to pride yourself on things that have felt traumatic, debilitating and painful. Or perhaps you are proud of how far you’ve come, in spite of, or alongside your disabilities. Perhaps, you’re just proud you’ve managed to stay alive. And that’s ok too.

Disabled people are almost twice as likely to be unemployed as non-disabled people, and 3 times as likely to be economically inactive

https://www.scope.org.uk/media/disability-facts-figures/
Disability Pride Flag
The charcoal background – to represent those in the community who have been subjected to ableist violence, as well as representing protest in the community.
The “band/road” shape – represents how disabled people face barriers and have to navigate their life according to them. The different colours in the shape represent the creativity in navigating life, and how the community is breaking free from stigmatisation.
The colours – represent the various experiences and needs (mental illness, developmental disability, invisible disabilities, physical disabilities and sensory disabilities) in the disabled community.

There are many ways you can still get involved in disability pride month. Sharing on social media, writing your story, and talking to your employer about supporting disability pride, are all great places to start.

Sometimes mummy forgets.

‘When you say you’re going to do something it takes a really long time sometimes, and sometimes you just forget all together.’

My six year old said to me tonight as we thought up new ways for her to learn her spellings. I spent ages cutting up letters so she could arrange them correctly. The traditional practising aloud was becoming tiresome for her and I could see her frustration. ‘Mummy doesn’t ever mind you getting something wrong, it’s how we learn’ I said to her, face screwed up in confusion at why she’s so upset. I want to prod but not too hard. I want to ask her why her emotional reaction is so major to something so minor. My brain working overtime, wondering whether someone has ever made her feel inferior for making a mistake, hoping that someone has never been me.

‘We still haven’t done my homework, you said we’d do it last night’

I did say that, but last night I was in bed, a migraine attack had me so sick, I couldn’t see, mid-cycle bleeding, cramps, along with feelings of anxiety and guilt all throbbing at my temples. I’d discussed with her how we were going to do her homework, we’d talked it through and even thought of different mediums to use for a collage. Then, like she said, I forgot. I had to work today, her brother up every two hours in the night, I can’t remember the last time I managed to watch a tv show all the way through with my husband without being interrupted by ‘I need a drink’ or ‘Waaah waaah waaaah, cough, cough, cough’ from the baby. The car was in for MOT today. I forgot to check out my online food shop too, and when it didn’t arrive as I expected today at 12 noon, I had a few choice words for the Asda customer service lady. That was until, I realised my error, apologised profusely and cried into a cold cup of tea.

‘You said we were going to put my picture in a frame’

I have no idea which out of the twenty seven pictures she’s drawn this week she’s referring to. I’ve forgotten. I love her artwork, but they’re not always memorable and some of them are awfully samey. I still love them, but not enough to frame each and every one. My hormone addled brain cannot hold on to another memory of felt tip hearts and swirls, or colouring pencil sketches of trees and mermaids.

‘You said I could have a balloon at the food festival, but we didn’t get one’

She’s right, I did say that, not wanting to get it on arrival in case she let go and the six pound foil dolphin flew up into the sky, never to be seen again. I had meant to get it for her before we left, but it was busy, the throng of bodies distracting me, exacerbating the heat from the sun. All of us tired from being amongst so many people. Her brother on his fifth suncream application. A desperate bid to get us all to the car before he woke up and terrorised us with post danger nap screams, on the ride home. I forgot. I just forgot.

And you know what? I feel bad. Of course I do. Every time I forget and she remembers, I feel terrible. But she forgets too. She’s forgotten that mummy took her to Little pink café on Saturday and the food festival Sunday. She’s forgotten that I tuck her in every single night and make sure she has clean clothes and her spellings are done, her books read, her PE kit ready, clothes for forest school too. I make sure she has money for whatever mufty day is occurring this week. That breakfast club is booked, and nanny’s picking her up. I’m also pretty good at whipping up a costume or two for the seemingly constant dress up days and Easter bonnet parades. She forgets to brush her teeth but I remind her. I clean her eyeglasses every night before she goes to sleep, and when she’s finally spent, I creep into her room and make sure she’s tucked in. I stroke her hair back from her face and tell her again (because I’ve already told her 100 times that day) how much I love her. She doesn’t know the impact of a mother’s load. To her it’s promises broken and forgotten moments.

Sometimes I forget things, but I remember a lot too. I remember without fail to remind her just how adored she and her brother are. Every day, of every week, of every year and I’ll continue to do that until it embarrasses her in front of her first crush, I’ll do it when they’re thirty and maybe have their own children to love. I’ll never stop. Because every word I say and every promise I make, is true, and yes I might forget, but when I’m reminded, I try my best to follow through. And our best is all we’ve got, right!?

If you’re a mummy that sometimes forgets and feels bad. Know this, it’s not just you. You’re not doing it wrong, it’s just hard. And if you’re worrying about being a good mum, the chances are, you already are one.

Confessions of a chronically ill mum #5

The difference two weeks make when you’re living your life around hormones, pain, kids and food…

Ok so some context, last week I was so irrational and some days inconsolable. I cried relentlessly and burst into a tearful rage when my husband told me roofers were coming to do some work on our roof.

I’ll go as far as confessing my embarrassment when I attended group therapy Friday and had to partake in an exercise. It went like this.. 
Group facilitator: Name a situation this week whereby you haven’t been able to contain your emotions. 
Me: My husband told me the roofers were coming and I don’t want them there, making noise, antagonising the dog, leaving their shit all over my driveway, waking the baby up with their clanking, etc etc etc. 
Group facilitator: Ok now strip away your interpretation and just give us the facts. What was the situation?
Me: My husband told me the roofers were coming. 

I can laugh about it now, because I realise how pathetic it is to get so emotional and behave so irrationally over something rather minor. However, to me and my perception, all I could think of was them invading my safe space and my peace, and my feelings felt really valid at the time. I know my hormones and the way I am living my life around them at the moment isn’t sustainable. My daily tracker consists of days feeling angry/anxious/flat/tearful to severe itchy skin/insomnia/nightsweats/cramps/bloating and more. But even with these hellish symptoms, likely as a result of taking progesterone, I’ll still take them over feeling suicidal every month and having migraine attacks that last a week at a time. Weighing it up with pros and cons isn’t the right thing for me to do, because in all honesty I have to accept that I will live with moderate to severe symptoms probably indefinitely, whilst praying that their severity is less.

In the last two weeks Ciara has been poorly, emotional and generally not herself. In the last few days she has perked up again and this brings me joy, I really struggle to regulate my own emotions when the kids are ill and I know they need me to master this better. For some reason I just seem to retain so much anxiety when one of them is not their usual selves. Kaiser has started flying around on his knees faster than our old Seat Leon, and climbing the walls quite literally, but still rarely sleeping. I’ve also spent a night alone in the house with Kaiser that I was petrified of doing, eradicated lots of foods from my diet and lost 6lbs despite the cravings those hazardous hormones bring! So it’s not been all bad.

It’s also noteworthy that whilst some symptoms have been tolerable, fibro fatigue and brain fog has been much worse, though physical pain in the more manageable stakes. We’ve gotten out and seen friends we’ve not seen for ages. I’ve all but organised everything for Ciara’s birthday party, and…life goes on. It’s up and down and yoyo’s persistently but some of it, is ‘just life’ I guess, and not everything is a catastrophe, as much as my brain would like to convince me otherwise!

Next week I have my first appointment with the diabetes team postpartum, and also an appointment with cardiology. Alongside these I have to collect my new laptop for my imminent return to work and arrange for Kaiser to meet his childminder. It’s all go for sure, but it’s not all bad. Shaun and I have a night off this weekend, his parents are having both children so we can lie in bed all day and binge watch all the TV we started the last time we didn’t have the kids home which was January!

Life is good and then it isn’t, it’s awful followed by magnificent, excruciating and liberating all at once. So far this week, I’m grateful for small wins, play dates, family and friendship.

Ps. The roofers haven’t even turned up yet!