July is Disability Pride Month, something I didn’t even know was A Thing until this week… awareness days; yes… a whole month of pride; no!
It turns out I have a lot to say in terms of pride, more than I can fit into one blog post, perhaps I’ll write a few more… but after almost 40 years of living with disability, I’ve come to see, think, & realise a few things.
Of course society has a long way to go when it comes to unraveling systemic & interpersonal ableism.
This oppression is obviously intensified for those that intersect other devalued minority groups… For eg BIPOC, LGBTQ+, refugees…
& in some lower income countries, (also in insular communities & families within ‘western countries’) we still see disability approached as a curse from god, which shames & exiles people from dignity, support & their communities further.
No matter where you happen to live, children, the elderly & women with disabilities, are particularly preyed upon in their communities, the medical system, the workplace & in school.
Before I talk about myself & my experiences a little, I want to acknowledge my own privileges.
I’m a white woman, I’m thin, I have a sharp mind, I can speak for myself, I come from a supportive family, I live in a country with relatively ok healthcare & disability support (meaning we actually get something) … many disabled people don’t have these advantages… therefore my experiences also highlight just how widely insidious & traumatic it is to live in an ignorant, ableist society, at any level.
My disabilities are due to lifelong rheumatoid arthritis. I have joint & bone deformities, chronic systemic pain & fatigue that reduce my physical function & ability to care for myself.
I had my hips replaced in my late teens, & the bones in my right foot fused when I was 29.
These surgeries were fabulous, necessary events, and in the case of hip replacements- lifesaving! But they are not without their own huge impacts on how a body can function.
Since my diagnosis at the age of five, I have been exposed to peoples pity, sympathy, disbelief & shaming of my lived experience, people trying to guess my illness to my face, their ‘testing’ of my body’s limits, them questioning my intellectual ability… it’s made me a target for predatory people, especially men, something I had to learn to recognise & manage from my first stay in hospital at the age of five…
These experiences were mostly dealt my way via the medical & schooling systems.
Even today as an adult, I see that not much has changed… dealing with bureaucratic systems like disability welfare, the NDIA/S (national disability insurance agency/ scheme), is consistently a traumatic, triggering, endeavour.
I usually steer clear of male doctors, & always make sure a doctor or surgeon I do find is trauma informed, with a good bedside manner (the former can’t exist without the later in this case).
No, we don’t have to put up with rude doctors under the implication that ‘the rude ones are busy / stressed because they are the best at what they do’.
The surgeon who fixed my hips was highly regarded the world over, & had the schedule to reflect that… yet he is one of the loveliest people I’ve ever met!
I decided I HAD to learn Disability Pride from a young age… not from the condescending, gaslighting, bypassing nonsense thats drawn from empty slogans or platitudes thrown around (I experienced these a lot in the medical system btw)…
You know the ones… ‘special people with special abilities’, ‘different people with different abilities’, ‘these kids are so strong’, ‘how impressive that you can do x,y,z in your condition’…
But *real* pride, with dignity; learning to no longer ‘mask’ my lived experience for others comfort, to vocalise my needs beyond what people might not be able to give me…
and very importantly, to allow people to see & feel my anger & frustration at the injustices, unfairness, infantilisation, of not just myself, but anyone in a devalued minority.
I was a strong minded, fiery kid, so it seemed to make sense to me.
I dedicated myself to this plight whilst laying in a hospital bed one night at the age of twelve.
I visualised building a brick wall around myself, telling myself that if I was to survive this life, I needed to be ‘selfish’ …
Fellow recovering people-pleasers will recognise that to us, ‘selfish’ means expecting to have our own voices heard, like autonomous individuals… imagine that!
From the age of fifteen I’ve been able to start the long process of unravelling survival patterns from my behavioural responses. Starting my study & work in holistic medicine at this age ensured I was around plenty of people to support & guide me.
I continue to cultivate more informed, self advocating, regulated behaviour to this day… it’s baby steps that make a lasting impression… I think of it like any other healing practices… it’s what you do daily that builds the most reward.
An early practise I adopted that I think is simple, but exceptionally powerful, (which any recovering people-pleaser, or devalued person can apply), is saying ‘please’ & ‘thank you’ less!
Cast your mind back over this past week..
how many times do you estimate you’ve said ‘please’ ‘thank you’ ‘I’m sorry, but..’ …
This can sometimes instigate a cringe moment; but not for much longer!
As much as you can remind yourself, & as much as you’re comfortable with, start dropping the frequency you use them.
You could also try swapping your Ps & Qs with any of these examples, or your own similar creations;
I’d appreciate some help with X
Thats a great job / help to me
I feel so supported
This works twofold:
You acknowledge that you are a person of value, whose needs require to be met.. forgoing the narratives that feed into shame, unimportance & the stigma of being a ‘freeloader’ etc, that society disempowers us with.
It’s the subconscious awareness & reaction to these micro-aggressions that make us overly apologetic for existing or ‘being a burden’ in the first place.
Secondly, it brings the focus back to our own point of feeling, rather than us overly worrying about the other persons… them usually being someone who loves us and / or cares for our comfort without needing constant thanks anyway!
Disability, illness or incapacity of any kind, is not our ‘fault’. It isn’t something we bring unto ourselves or ask for. It isn’t a punishment for ‘negative thoughts’ or from a ‘higher power’… it’s a simple reality of living in an organic world.
It’s your / our real life, our lived experience; this requires what it requires for our comfort and ability to thrive, Because It Just Does. The End.
A few years back, while talking to my good friend Lysa Black on this topic, she took this practise to a deeper place for me, as is her way…
She enlightened me with the ‘you are welcome’ approach; a mantra for me to repeat whenever I felt I was becoming ‘too much’.
Instead of feelings of being burdensome creeping back in, I could remind myself that it was a privilege for those who loved me to see me happy & thriving.
There’s no other acceptable alternative than happy & thriving for mine or your existence on this earth.
We’ve survived so much to be here, & that is something for everyone to appreciate…
YOU’RE WELCOME to care for me…
YOU’RE WELCOME to ensure my safety…
YOU’RE WELCOME to help me in my daily tasks…
YOU ARE WELCOME that disabled & devalued people are leading the way to a more equitable, accessible, civilised & healthy society…
YOU ARE WELCOME that by this example, we are setting a standard for community care & interdependent support…
YOU ARE WELCOME for what your interaction with us teaches others about themselves…
While it shouldn’t fall onto the shoulders of devalued people to ensure their dignity & rights, it seems this is still a reality of the world we live in.
Our activism & self advocacy in different spaces needs to be met at our own individual paces. To ensure our mental & emotional health is supported as we move through life.
Disability Pride month is a great opportunity to instigate these conversations, to pull a supporting community around us, & to help further educate on our plight.
Enjoy the human experience while we are here & leave it better for those that come after.
Last year I had an opportunity to speak on a podcast panel with some lovely people, on the intersection of disability, chronic illness & spirituality .. you can listen to it by clicking this video hyperlink.
Sami Lou 💖🔥🌸