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Volunteering does not mean I can do paid work (even if I want to) :-)



Guess what David Cameron once said about me when he awarded me the prime ministers point of light award, for my volunteering?


“Joely Colmer has not just overcome huge personal challenges in her own life; she is helping others in a similar position to feel safer and more independent in public. Through her hard work and dedication she is making our communities stronger, and our country a better place. Joely's courage and determination is inspiring and I am delighted to be recognizing Joely Colmer as a ‘Point of Light’"

- David Cameron

I still can’t believe it! He also tried to use me as a national case study for disabled people who CAN get into paid work because they can volunteer. He wanted to use my story as inspiration p0rn to further the narrative that autistic and disabled people CAN work as a ploy to get us into paid work with no actual accessible changes.


Here’s what I said.


In short. “Nope!" In long?


I gave him and his team ALLLL the reasons I can’t works and many disabled or autistic people can’t work even if they can volunteer and it looked a little like this…

"Volunteering was only accessible to me because it has flexibility & reasonable adjustments a paid job could never provide. 💫I could cancel anytime. 💫I could be late. 💫I could leave early. 💫I could do as much or as little as I could. Volunteering & paid work is not the same because my capabilities drop at a moments notice & there’s no job that will let me work several hours a month that would pay enough to survive while also being accessible & reasonably adjusted. disabled people who volunteer literally can’t access jobs as jobs aren’t accessible!"


In long, those answers looked like this:

I’m autistic, chronically ill & disabled & these are the reasons why I can’t work (no matter how much I want to)…


1)🌟Executive dysfunction🌟aka-you cant process information to DO/plan/organise / achieve anything, ever

ED impacts EVERYTHING:

💫even doing things you love & want to do

💫Even relaxing

💫Even sleeping when you're tired

💫even peeing/pooping

💫even taking life saving medication on a regular basis (I require meds every day-I ALWAYS don’t make connection to take & then lack executive function to take it all, too)

💫even organising things you’ll love

💫even staying hydrated

💫even meeting really important (enjoyable) deadlines that you’ve been looking forward to, for MONTHS

💫even working out you are life threateningly Ill, & then actually DOING something about it... oh I’m dying ? In agony?

I’ll just sit here & let it happen because I can’t process to do anything about it. This happens to me a lot!


Even when I actually decide I'm going to tackle things I must do with urgency, prioritising is so difficult - no matter how much I schedule or prioritise.

it often ends up with me shutting down, needing rest to recover & then never process the information again so it never gets done!


2)🌟chronic pain, illness & exhaustion🌟


💫there’s a common myth that not only is it possible to work through it if you want to- but also that Pushing through tiredness, pain & illness, means you don’t need help; pushing through fatigue for 1 day or a few hours of work like activities- or even life skills or self care- can mean you’re out of commission for a week. There’s no choice…


We can’t ‘push through it’ healthily to work, & just because generations of people before us were forced to ‘suck it up’ or die (& most people still died because they ARE ill & unable to live like that) does NOT mean we should also do that.

It’s gross that people have this ideology- I suffered-we suffered -so you must too.

We live in a better, evolving, more understanding world now-theres no way we should allow people to suffer just because ‘other people had to’.


Non disabled & neurotypical People normally have an average amount of energy & bodies that aren’t … falling apart or overly exhausted by doing nothing …

they can go for a day, or a week or even months where they’re not getting enough sleep or when they’re stressed or ill-and they can still push through it to get stuff done.


That’s because their baseline is ‘health & capable & energised’ (even if they’re over tired or super stressed) so when things go wrong they can still survive.


Our baseline is fighting to survive-already- so when things go wrong for us (work, stress, additional illness or trauma) it can legit cause significant further harm they we can’t necessarily recover from.

It’s not a choice or poor planning, poor prioritisation or laziness when we can’t work

I can’t work because of these kind of symptoms, but I used to be able to volunteer because it was so flexible, that I was still enabled to participate because it was accessible. Nowadays, I'm too sick to even volunteer, but the point, is that if and when I have energy, volunteering is always more accessible than any paying job, where I am not my own boss. My worthiness as a human being should not be dependant on what I can contribute and I am not a burden or a drain because I am disabled. I am human and worthy of human rights, accessibility and understanding at the very least as a baseline - really, we should be entitled to survival that can empower us to thrive, to.


3)🌟shutdown & information/Sensory overloads🌟

My severe shutdowns:

I can’t:

💫walk (literally)

💫hold things

💫Move my head or limbs without servere agonising pain/seizure surges / blacking out

💫communicate without slow, severe slurred, stuttering, incomprehensible speech

💫or do any life skills or self care

💫dress myself

💫shower

💫brush my teeth or my hair

💫feed myself

💫process any information I see, read, hear or feel.

💫control my facilities, bladder or have any ability to not dribble

🌸body, muscle & bone pain at 7-10🌸

I’m totally shutdown. This is a shutdown where I can’t even watch tv, listen to music, read or do or think anything at all. Depending on how long I’ve been shutting down for, shutdowns this severe can last days.


Even when I’m in recovery I’m still very much disabled & incapable & in need of a lot of 121 care to help me safely get through the day, & do all jobs, work, chores, leave house, transport, paperwork, life skills or self care.

I am ‘okay’ a few days a month as My autism disability means I’m constantly overwhelmed by information, & in ‘shutting down -shutdown’ cycles.


Autistic people can experience the sensory world differently to non-autistic people, this isn't just hyper-sensitivity but can be hypo-sensitivity or sensory seeking.


4)🌟inaccessibility & ableism🌟

💫Some people need ramps

💫Some people need Braille

💫Some people need sensory friendly work places

💫Some people need accessible free toilets

💫Some people need public safe spaces to exist & / or take medication or recover

💫Some people need lifts & slopes

💫Some people need to work from home or they can’t access work or education

💫Some people need timeout to process information to thrive/need longer deadlines to account for processing difficulties

💫Some people need mobility aids

💫Some people need colour overlays so they can read

💫Some people need medication or pain relief

Many of us, who are disabled, chronically ill or neurodivergent, can not work, even if they want to, due to inaccessibility & ableism. Which is WILD when you consider how this capitalistic hellhole deems you unworthy or a burden unless you can work to the bone,& give back to society by making it money-while also doing NOTHING to even pretend to make things accessible to actually let more people work who could.


The access provided is mediocre & scattered at best & barely passes the BASELINE of what is considered accessible.


💫For instance, fighting for accessibility, is not accessible.

💫Proving disability is not accessible.

💫Filling out forms & the insanely ableist gatekeeping, for benefits to survive on, because you can’t (not wont) work, is not accessible.

💫the weeks / months spent attempting to explain your needs to HR who are woefully understand poorly trained to get the tiniest amount of support- if any- is hugely inaccessible -especially as access needs should be in place for everyone regardless of being told needed.

💫Going to reception to get a key to use a disabled toilet at work or in public, is not accessible.

💫Paying so much extra to use accessible vehicles, accessible transport, or to rent a wheelchair to access a business centre...is not accessible.

💫Being punished because you need timeout or flexible, changeable hours, to make education or work a accessible priority, is not accessible.


Ableism is defined as discrimination or social prejudice against people with disabilities based on the belief that typical abilities are superior.


Signs of ableism in workplace:

💫Not Hiring A Candidate Because of His Disability. ...

💫Failing to Accommodate An Employee's Disability. ...

💫Harassing A Disabled person. ...

💫Asking An Applicant to Take A Medical Exam Before A Job Offer Has Been Made.

💫Not Promoting Someone Because of A Family Member’s Disability


Quotes staff may use showing unintentional ableism:

💫“You don’t look autistic/ill/disabled.

You don’t need support if it’s not real/your a tiny aspect of this business & not worth the funding needed to train or improve accessibility.

You don’t even work that well anyway, you’re s burden to the company & you want special treatment?...”


💫“you’re autistic/ill/disabled? I’m so sorry. How awful & lonely thats gotta be... I bet you just...wanna cure n end it all, don’t ya?”

💫"They’re Totally Crazy/Psycho."

💫"That's stupid/lame/gay/autistic."

💫“Only a r****d or stupid can’t do this?! Even a baby can do this?”

💫”A child could do that!

What are you? 3?! So&So has your thing & does way better than you because they try. Grow up! You’re letting the team down”

💫"They’re Super Sp4stic."

💫"Send Them To The Loony Bin."

💫"I'm So OCD-it’s not even a joke”

💫“wow. How are you out here in public-working-as if there’s nothing wrong with you as a person? You’re SO INSPIRING! I feel way better about my issues now it least I’m not disabled like you! Thanks”

💫“Don’t worry. I don’t see you as disabled/ill”


I used to be deaf & have had a lot of angry people-teachers, colleagues, strangers turn to me & say “what?! Are you deaf?!” & they’re all pretty shocked to find out I used to be, especially when I call them out for why I couldn’t process their language quickly.

What’s wrong with being deaf anyway?

You said it like a bad thing?

If I was still deaf, I wouldn’t be the one bad mouthing others, because I can’t cope with my own life, would I?


Likewise “fallen on deaf ears” which was always used to insinuate selfishness laziness in consideration not trying to listen and not doing as I was told or been in compliant either way he was never used to be positive in anyway no matter how much I tried my best to be good


This kind of ‘ableist’ language is common in daily conversation-even in workplaces: making a “dumb” choice, ‘acting autistic’ by ‘speaking with their face’(showing negative emotions), turning a “blind eye” to a problem, acting “crazy”, calling a boss “psychopathic”, having a “bipolar” day.


For the most part, people who utter these phrases aren’t intending to hurt anyone – more commonly, they don’t have any idea they’re engaging in anything hurtful at all.

However, for disabled people like me, these common words can be micro-assaults.


Ableism (even small like this), can still do real, lasting harm

-The question is-

Ableism -no matter how small- is apparent in every workplace. It’s scary!


5)🌟misunderstanding workplace-Gaslighting🌟

autistic people are often unintentionally gaslighted on a daily basis by most people around them-even those who don’t mean any harm & who are trying to help-parents, professionals, peers, colleagues & friends.


The definition of Gaslighting is: ‘to psychologically manipulate someone into doubting their own sanity or self’.

This is a form of abuse-no matter how unintentional -but it is rife in workplaces because autism, disability & chronic illness training is woefully under funded, under presented & sickeningly short lived, undetailed & inaccurate.


💫So often we shutdown & things we used to be good at, we can no longer do.

We end up losing capability’s quickly. This is super misunderstood & gaslighted.

‪💫The culture around treating pain & illness is so stigmatized that people are brainwashed to believe they must push through illness & pain & that chronic pain or illness isn’t real enough to stop work (unless you want to be seen as a burden or lazy or ‘not trying to recover’ & ‘undeserving of help’-it’s grossly ableist)

‪💫 even then, too many doctors deny them pain relief. Too many bosses will allow stigma in the workplace which shames medication or the need for rest or timeout/extensions/flexible hours/sensory rest.

💫We can’t all process information quickly or with ease & it can be misunderstood as being rude or lazy or not listening or trying hard enough. 💫We are disabled further by people, the way they treat or talk to us & our inaccessible learning environments-& gaslighting.

This means while we could sometimes work-myself included- the work place & the environment & society actively disables us more-due to gaslighting, inaccessibility & ableism.


💫HOWEVER:

We can be enabled to be the best we can be by people who nuture our interests & talents, who support us unconditionally & who make an effort to learn to understand us, as individual Human beings- every autistic person does not display the same. Like all humans, we are all diverse- & that is beautiful.


🌟so I can’t work in a traditional manner.🌟

However, together we made my passion my career & my job & MADE IT WORK FOR ME.

So what if I work several hours a month?


💫I still work & have a career that’s accessible to me. I ‘work’ a few hours a month-at home-at my own pace- I’m my own boss.

💫I’m also multi world / national award winning in my field & a best selling author. I don’t work traditionally-I’ve never even had a job- society tries to teach us that we are worthless or burdens if we don’t contribute- I empower understanding of a very misunderstood disability. Even if I didn’t ‘contribute’, my worth would be no less valid, because I am a human being.

💫I like to think with my happiness, inner peace & success, I’m showcasing just how much acceptance, flexibility in employment opportunities, support & safe therapy’s change lives.

I was told I’d never achieve. Never love or contribute. Never work or have a career.

Now look at me-Happy, clever, loving, successful & filled with inner peace & a passion to empower others.

💫I can’t work- but I sure do work hard, everyday, to challenge misconceptions, improve myself & be mindful & grateful.

💫I work hard, & I’m successful with happiness as a result. My career may never climb the workplace ladder of success- but happiness & self acceptance is really all that matters

-& I have both of those in abundance-

so I really am, in all sense of the phrase ‘my own boss’…

& I love it! peace x <3 x

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