I have this thing where sometimes I don’t feel like a regular human person – like people see and treat me differently, like I can never really be a regular human person, like I’ll never really fit in in any space I occupy.
And while I’ve struggled to explain the feeling itself and the reasons why I feel this way to my (new and super awesome) therapist, an unfortunate ableist experience a few hours ago clicked something in place:
I don’t feel like a regular human person in class, at work, with peers because I am always first and foremost a disability advocate.
Because I am “Carly Fox, Disability Advocate”, before I’m “Carly Fox”, and way before I could ever be just “Carly”.
And when I incorporate my disability advocacy into the many spaces I occupy and into the many capacities I hold, there’s a lot of unrecognized and uncredited emotional labour that goes into this “insider activism”.
There’s a lot to unpack when it comes to insider activism and emotional labour – the power dynamics, the shifting relationships with others, the consequences.
So, may I present a whole blog to explain to you and myself (and maybe my therapist) why I believe I am a regular human person, and why sometimes it feels like everyone and everything (and everywhere, all at once) is forcing me to feel like I am not.
While it feels a little arbitrary to boil down my (allegedly) three-dimensional existence into three clean categories, that’s what we’re going to have to do to keep all these big thoughts and feelings understandable and approachable.
In classes, at work, and across my social networks, my insider activism faces different dynamics and consequences, and has been positive, negative, and everything in between.
At this point in my life and my degree, classes and academic performance are finally not the defining metric of my life – post-secondary just feels like a pyramid scheme anyways.
Deans, professors, researchers, scholarship people – please know this is Carly Fox’s evil twin writing this and she just loves academia so much and will totally never leave it ever and you can also singlehandedly fix her uncompensated emotional labour and all of ableism ever through scholarships.
(To everyone else reading this, it is Carly Fox and that was a little joke.)
Back to class: insider activism at school often requires challenging my own professors and program curricula – while I usually have some cool peers who will back me up, I am metaphorically biting the hand that grades me.
(But hey, grades are usually arbitrary across students, professors, and programs anyways.)
A really positive insider activism experience I had was on the very first day of my sustainable development and resource management class (and my first class of third year) – as a disabled student, I was pretty anxious about this class due to pervasive environmental ableism in the field.
So, when the professor asked what we’re looking forward to learning about this semester, I figured I might as well get the ableism test over right away and shared that as a disability advocate, I’m looking forward to examining environmental ableism within international development and climate action.
My professor, who already knew I was disabled, really, really impressed me with his response acknowledging the systemic ableism within the field (!!!!!), and inviting me to incorporate my experiences and perspectives in class whenever I wanted (!!!!!!!!!!!!)
While I was surrounded by some close friends and didn’t have to self-identify to my prof as he already knew I was disabled, this seriously relieved my anxiety and created a safer and more inclusive environment that has lasted throughout the semester so far.
And now for the negative experience that still makes my stomach clench and heart hurt: in a class where I was routinely called upon and singled out for my disability advocacy, we were working on a hypothetical social innovation and landed on an app tracking wait times across medical clinics and allowing for crowd-sourced ratings of doctors.
Really excited about this (albeit hypothetical) innovation, I brought up how disabled people often face medical ableism in healthcare settings, and how crowd-sourced ratings could literally save lives.
Then, the prof said something about broken legs and elevators, and the class moved on.
The Class. Moved. On.
In a class that stressed “intersectionality”.
With a professor that routinely called on me and singled me out from my peers for disability advocacy insights.
With peers that prepared for my disability questions during their presentation Q & As.
Don’t tell anyone – because apparently some people out there still think I am at least a little tough or a little scary – but I went home and cried right after that class.
Insider activism in social networks gets a bit more abstract – after all, what the hell is a social network anyways? (Aside: I insist on watching The Social Network as a satire, I can’t stomach it otherwise.)
In social networks, I’m challenging my own peers – with or without support from my other peers – with no clear voice of reason or authority to appeal to if things turn south.
The whole “people thing” is already way too much for me – the little nuances in interactions, the “he said, she said”, the reactions and the gossip – I don’t know how other people cope with it.
The most positive experience and outcome of my insider activism in social networks so far has been developing a network of disabled students at my school, and having other disabled students reach out to tell me that because of my advocacy, they felt comfortable advocating for themselves, or even just openly identifying as disabled.
At the end of the day, with all of the bad experiences and emotional labour and frustration – this is what keeps me going. This is what keeps me coming back. This is what makes all of it worth it.
A not so cool at all experience was when I brought up the need for online and hybrid events during 101 week, only to be told it’s “too hard” to try and just not worth it.
I quit within two hours of that – if people aren’t listening to your insider activism and are okay with openly discriminating against you and your community, it’s not worth it.
Run, walk, wheel, hobble, whatever suits you best.
And finally, insider activism at work – the hardest kind (at least for me), and the most consequential (whether positive or negative).
The dynamic here is a serious power imbalance: I’m challenging my senior colleagues or supervisors, and while there are designated HR systems to appeal to if things go south, there’s always a risk of being fired, not being promoted, or not getting opportunities.
And when you have to pay your bills and build up your career to keep up with the cost of living, you aren’t too inclined to take serious risks.
So, my experience here is both positive and negative – because I have not yet risked a negative experience.
(Hey employers! If you put me in positions of power with appropriate compensation, I’ll be able to do insider activism without fear of discrimination – pretty cool! Please do read the consequences section later on though, or I might have to do some insider activism and then this blog is just a big waste of time for both of us.)
When I provided feedback on an accessibility analysis I found somewhat lacking, it was well received but didn’t translate into satisfactory change.
While I understood why it couldn’t translate, it felt like all the awkwardness of pointing out gaps in others’ work was for nothing, and I knew my colleagues felt bad for not being able to fully use my contributions.
Personal experiences aside, those who benefit from insider activism often don’t understand the level of emotional labour required or the power dynamics at play – meaning insider activism and its emotional labour goes unacknowledged, uncredited, and uncompensated.
On top of that, insider activism blurs boundaries in ways mainstream activism doesn’t – introducing a million little nuances and consequences for personal lives and emotional wellbeing.
Sounds bad right? Just wait until we get to the consequences section!!
While many privileged people in positions of power (5x fast) claim to appreciate insider activism, they completely fail to acknowledge that an inequity has to exist within their spaces or systems for insider activism to be necessary.
Yep, if insider activism has happened in one of your spaces – you need to understand that you were complicit in letting discrimination or inequity happen, and failed to recognize this yourself.
In short, it’s a you problem!
No one likes bringing up uncomfortable topics – people get weird, things get awkward, you know how it goes.
But insider activism occurs when a marginalized person has to address the inequity or discrimination that they are facing, in front of people who are complicit or active in creating that inequity or discrimination.
And while people are so quick to call us brave or upstanding for doing insider activism, they don’t understand that more often than not – we do not have a choice!
We. Do. Not. Have. A. Choice.
If we are risking our academic standing, our social reputation, our careers and livelihoods – it’s for good reason. It is because we do not have a choice. It is because we can no longer stay silent and just take the discrimination.
I don’t want to be called a changemaker. A social innovator. An insider activist. I want spaces to already be safe. I want to feel welcomed and included without having to fight for it.
And when I do speak up? When I do take these risks? When I address a major systemic issue that everyone else ignored?
I want recognition. I want compensation. And I want actual change.
Now, back to the main question at hand: is Carly Fox an actual human person? Let’s discuss.
Sometimes insider activism is a choice I make, and other times it is thrust upon me as boundaries between work, class, and my social life all fall apart.
Regardless, once I start insider activism in a space, it permanently – and irreversibly – changes how people perceive me, and how they interact with me.
Let’s start with perceptions – another weird “people thing” I don’t really get.
For me, insider activism is tied up in my personal identity and experiences – so whoever didn’t somehow know I’m disabled (sometimes it feels like I’ve cancelled out my able-passing privilege with how open I am about my disability) now knows.
This can open me up to a whole lot of ableism I could have otherwise avoided.
More often, people know I’m disabled and they know I’m vocal about it.
As I’m expected to do insider activism in literally all of my spaces all of the time (again, is Carly Fox an actual human person?) I can’t blame people who think I only talk about disability, I only care about disability, I am my disability, and I hate absolutely everyone who has ever said a single ableist thing.
But hear me out – when your record keeps skipping, you don’t blame the record – you figure out what’s wrong with the record player.
If I sound like I only care about disability, ask why I’m still having to talk about it all the time, ask why people keep asking me to talk about it.
Believe me, I have a lot of other cool stuff going on (you ever solo hike and stand down a wild turkey?) and would appreciate the emotional and intellectual break.
Perceptions influence interactions – this is one “people thing” I understand quite well. Reality is subjective, nothing is real, wash, rinse, repeat.
So, when I am always doing insider activism in all of my circles and spaces, and people come to expect this of me – they’re going to anticipate it or shut it out.
When people positively respond to my activism, they’re often really eager to learn more – and that’s really exciting and some great allyship!
They also often know that I will continue to call out inaccessibility and ableism, so there’s this weird accountability dynamic where they’re looking to me for validation or are afraid of upsetting me.
As you can hopefully imagine, that’s super isolating and weird for me – especially when it comes from my peers!
Is Carly Fox a regular human person?
And of course, when people negatively respond to my activism they generally stop interacting with me.
And this isn’t great for two reasons, because it means spaces and systems continue to be ableist, and it doesn’t give me a chance to understand why they negatively responded and how I can improve and better relate to them.
Of course, these interactions usually manifest in gossip and what the kids call “shit-talking”. Not too long ago, my friend told me two girls were openly shit-talking me on campus.
But hey, as long as disability is on the agenda, right?
I try not to take it personally, I really do.
I know that not a lot of people are doing what I’m doing (but those that do are so cool and I owe so much to them!!), and above all I know ableism is so pervasive and unaddressed.
I don’t blame people who negatively respond, I just wish they’d give me a chance and open their minds. Or at least give some constructive feedback.
And when the impacts on interacts aren’t obvious, they are subtle. And subtly, for me, is a terrible thing.
Because I will convince myself I’m crazy (which I already am anyways) and will get caught up in trying to figure out what is real, and what is imagined (PTSD does some funky things to your brain folks.)
When people expect me to do insider activism, they’ll either try to avoid disability entirely to avoid pissing me off, or they will try to appease me, to also not piss me off.
Is Carly Fox a regular human person?
I obviously can’t speak much on the avoidance, because it’s, well, avoided.
But I can speak on the appeasement, which is, by far, the #1 culprit of making me feel like not a regular human.
When your peers tell you about event venue accessibility features unprompted, or call you “miss advocacy”, or say during an in-class presentation that they’ve prepared for your disability questions – it’s weird! It is so weird!
It’s more impactful when it comes from my peers, but so much weirder when it comes from my professors or supervisors.
Now, don’t get me wrong – I am so grateful people are listening and learning and acting. It is all I could ever ask!
But I hope it’s not too much to ask that we find a way to do this in a way that can treat me like something at least resembling a regular human person.
Balancing the importance of recognition with the fact that any recognition makes me want to curl up in a ball or just go live in a cave is probably going to be a forever thing.
Showbiz, I guess.
And for the worst part of the subtle interaction shifts – once you start insider activism and it becomes expected of you, you can be boiled down to this one-dimensional person with only one identity factor.
You aren’t like everyone else, and they don’t want you to be.
The thing about disability is that everyone non-disabled don’t understand their proximity to disability until they are disabled.
They don’t want to see you as a peer, because then they’ll realize that disability is everywhere – and so is ableism.
It’s a lot, and I don’t blame them.
Now that we’ve explored some of my experiences with insider activism and how it impacts me in all aspects of my life, let’s get into the wider, infinitely more consequential, y’know, consequences.
(I have been writing this blog for over two hours now, so please let that sentence happen.)
When we ignore the emotional labour behind insider activism and the power imbalances and systemic oppression rendering it necessary, we force marginalized people to fix the discrimination they’re facing – at a major power imbalance, at extreme emotional cost, with serious potential consequences.
And, we don’t pay them for this work.
Most of the time, we don’t even recognize them for it!
Now, for the big argument: if you are relying on marginalized people to fix acute symptoms of the discrimination and inequity you created, you are perpetuating inequity and discrimination!
You are not a good person for “letting” insider activism happen. You most likely did not provide a safe enough environment for the activist to feel safe doing insider activism. This is no one’s first choice.
That’s the main argument here – insider activism will not fix systemic ableism, and expecting disabled people to do that without power, recognition, or compensation only perpetuates it.
It also prevents more disabled people from entering these spaces (especially in paid positions folks!), and it prevents accountability for those complicit in perpetuating this inequality.
Relying on insider activism also often tokenizes the activist, making them a monolith for the entire disability community and ignoring intersecting systems of oppression.
And now, disclaimers.
For the appeasers, the employers, the professors, the peers, anyone and everyone – no one is perfect, and all I ask is that you try your best.
Maybe you learned from this blog that what you thought was an appropriate reaction to my activism was not as appropriate as you thought, maybe it made me feel like not a regular human person – it’s okay!
We are all learning and growing together – own up to it and let’s figure out how to move forward from this together.
You. Are. Allowed. To. Make. Mistakes.
For the insider activists, if you can, please keep doing what you are doing.
This hard work today creates a better tomorrow for all of us.
We should not be in these positions, but we are.
And we unfortunately are going to have to continue hauling ass so that one day, someone somewhere will not have to.
So that one day, we’ll at least be compensated and credited for our work.
But if you are tired, if you do not feel like a regular human person, if you are frustrated or feeling unheard or are burnt out – please, if you can, take a break.
It is all too easy to fall prey to the feeling that the fate of the entire disability rights movement falls solely on our shoulders – that every second not advocating is another disabled person discriminated against, another inaccessible program, another ableist policy.
It might be! Who am I to say it’s not?
But if you’re like me, you can take comfort knowing that you are not alone.
You are not the only one fighting, advocating, challenging, and changing.
We are in this together, and we are a community.
As long as we keep this in mind, tomorrow feels easier. And maybe it will be.