Meeting the Non-Disabled Gaze

When I first got into disability advocacy, I had only been disabled for a year or two – meaning I had spent the majority of my life as non-disabled. This really influenced how I approached advocacy, and how I was able to relate to non-disabled people in a way that made disability more approachable and relatable. 

While the majority of my life has still been spent as non-disabled (and I will not get to the tipping point until 36!), I’ve found that my approach to advocacy has shifted as I’ve embraced my disabled identity and crip culture over the last few years. In short, I began to write for myself and my peers instead of writing for non-disabled people. 

But the thing is – I know what it’s like to be disabled. My disabled peers know what it’s like to be disabled. Non-disabled people don’t know what it’s like to be disabled – yet.

And while I believe raising disability awareness and sharing my experiences can help non-disabled people start to understand disability and practice disability allyship – it can kinda be exhausting and overwhelming trying to boil down such a complex and personal experience into something understandable and palatable.

Being a disability advocate is a balancing act between holding the non-disabled gaze by making disability approachable and understandable, and being honest about my lived experience and being accountable to my peers. 

My work does not exist in a bubble – if I sugar coat my experiences, other disabled people will be dismissed or gaslit. If I’m too honest about how my disability impacts me, or too nuanced in explaining disability, or try to approach complex or controversial topics – the non-disabled gaze drops.

And that’s a lot of responsibility to hold, especially at twenty!

While I always do my disclaimers that I can only speak to my personal lived experience and that I could never represent every single disabled person within the disability community, I’m constantly mindful that some people choose to ignore this and take my words as The Disabled Experience. That some people think speaking to me checks their Diversity Equity Inclusivity box, or counts as a formal consultation with the disability community. That supporting my advocacy work means supporting the entire disability community, and that supporting me is enough to understand what disability is.

And there I go, dropping the non-disabled gaze again.

Before I was disabled, and even now – I wanted to be told disability is easy. Easy to live with, easy to understand, easy to talk about. But I wasn’t told this, because disability isn’t easy.

While I was loosely aware of disability, I didn’t have a great idea of what it meant. I thought of people in wheelchairs, and people with absolutely no vision or no hearing. I thought the only accommodations were service dogs, wheelchair ramps, and accessible stalls.

When my twin was diagnosed with arthritis two years before me, disability stared me down for the first time. It was complex, and overwhelming, and upsetting, and I didn’t like it at all. I didn’t understand what an autoimmune disorder was, or why my twin was always sick, or why she wasn’t going to school.

Instead of trying to understand, I shut down. I shut down because it was all too much – it was too overwhelming trying to understand that I didn’t even know where to start! I didn’t want to ask my twin about it – it felt too private, and I felt too awkward. I tried googling her disease, but everything that came up was in medical jargon. No one seemed to be talking about the human impacts, no one seemed to be having any human impacts at all.

So, if I still have the non-disabled gaze, please know that I felt the same way you might feel now. Like disability is too much, and that trying to understand it is too hard. But I, and countless other advocates, are doing our best to help you understand.

And all I can possibly ask of you is that you do your best too.

No one is asking you to be perfect – to be an expert on disability, to always know what to say to disabled people, to see inaccessibility all around you.

We’re just asking you to try – and I know that’s easier said than done. 

It’s hard knowing where to start, where to go next, and if you’re on the right track.

It’s hard consuming all this complex information, sometimes with conflicting perspectives and definitions.

And it’s hard to understand that disability is not inherently negative, because we were raised our whole lives being told it was.

I know it’s hard, you know it’s hard, I’ve told you it’s hard, you probably agree it’s hard. Glad we’re on the same page. But we’re gonna have to keep going – so that you didn’t read this blog for nothing, and so that I didn’t write it for nothing.

Here are some tips for those new to disability allyship.

I’ve offered some of these across the blog, across my socials, and within my circles – but I’ll offer these and more here for you to check out.

And yes, these are catered towards non-disabled allies – the cross-disability allyship blog will have to wait another day, but these tips can work for disabled people too.

Step #1: Ask yourself, “what is disability? what does disability mean to me?”

Before you start, you have to understand where you’re starting from. When we explore what we already know and why we know it, we can start to find gaps in our understanding our even some biases to unpack.

Step #2: Ask yourself, “am I disabled? could I become disabled? is someone close to me disabled?”

It’s easier to understand something when we can place ourselves in it or near it. We all have some relationship to disability – even if we haven’t discovered it yet! A lot of disabled people don’t even know they’re disabled (read my blog on identifying as disabled for help with this) And a lot of non-disabled people don’t realize there are already disabled people in their lives and spaces,

Step #3: Find out what you want to know about disability – the basics, how it applies to your interests, how it impacts people, the culture – and go from there.

Everyone gets into disability allyship for different reasons – ask yourself why you’re here and what you want to learn, but also ask yourself why you feel this way. Do you want to make your spaces more inclusive? Do you think crip culture is cool (shocker: this is okay to think! it’s really cool!)? When we ask ourselves why we want to know more, we can keep unpacking our pre-existing thoughts and feelings on disability, which can help us learn better and be better allies.

Step #4: Always keep learning – and keep learning from all types of disabled people.

Like every other kind of allyship practice, it’s an ongoing commitment! There will always be something new to learn, or a new event or law to learn about. There’s also a lot of diversity within the disability community – to better understand disability, you need to understand how it affects all kinds of people.

Remember, all we ask is that you try your best. This will probably be some confusing, thought-provoking work – work through it, and I promise it will be worth it. one day you’ll appreciate it. Hopefully, you’ll want to keep learning more about disability, the disability community, and disability allyship.

Start Here

Crip Camp – Sundance Award Winner and Oscar Nominee, Crip Camp details the American Disability Rights Revolution and its origins at Camp Jened. A moving, true, and authentic look at both crip culture and disability rights movements.

Demystifying Disability by Emily Ladau – An approachable, beginner-friendly book and guide to disability advocacy

The Disability Visibility Podcast by Alice Wong – 100 episodes increasing disability visibility, as part of the larger Disability Visibility Project. This is a great podcast for people interested in crip culture, disability rights, and intersectionality.

Find disability advocates in your area through social media, events and conferences, and by-and-for disability organizations (read more on the importance of by-and-for groups here!)

The Intersectional Nature of Systemic Inequity

Thank you so much to uOttawa’s International Development Week for having me back a second year! I had the privilege of speaking on the panel “The Intersectional Nature of Systemic Inequity” alongside Anjum Sultana, Alyy Patel, and Jasleen Kaur. I thought it would be beneficial to share my responses to the provided prompts here, for those unable to attend and as we ran out of time.

Can you introduce yourself and tell us a bit about your work?

I’m Carly Fox – a disability rights advocate, an international development student at uOttawa, and a researcher and communications officer for NEADS. Having been first diagnosed with juvenile idiopathic arthritis at 16, I’ve used my experiences as a disabled and non-disabled person to boost disability allyship and help reduce stigma around disability. In my advocacy work, I’m beginning to get more involved in advocating for the relationships between mental illness, neurodivergence, and physical disabilities after being subject to harmful and exclusive narratives in these communities. In my professional work at NEADS – a by-and-for, cross-disability charity supporting full access to education and employment for post-secondary students with disabilities – I’ve been privileged to meet with disabled student groups and leaders across Canada, research accommodations and accessibility across Canadian campuses, and provide strategic advice to different branches of the federal government.

Why is intersectionality important for understanding systemic inequity?

All systemic forms of oppression are interlinked, and work together to create the foundation for our society and consolidate power and privilege. Intersectionality reflects the basic truth that many people belong to multiple identity groups, and face multiple and compounding forms of systemic inequity. When we fail to center intersectionality in our understanding of systemic inequity, we fail to adequately address the barriers people face and fail to design the necessary solutions to remedy them. The disability community is unique, as it’s the only marginalized group you can join at any time and is open to all backgrounds, orientations, and identities. Understanding intersectionality is also essential to effectively mobilizing against systemic inequity – we are stronger together, and our intersectionality can be our strength. 

Why is it important to include intersectional voices in development efforts and social justice movements? What are the negative impacts of not doing so?

In development efforts, there is an overarching goal of improving wellbeing for all – but when we ignore those facing the greatest barriers to full wellbeing, we are being ineffective and resign ourselves to failure. In development efforts, we do not need to include intersectional voices – we need to center them. We desperately need perspectives and insights that enable us to design equitable and impactful solutions that effectively solve problems and address social inequity.

In social justice movements, I believe we are currently feeling the negative impacts of not including intersectional voices. In my personal experience with social justice movements, primarily around queer rights, feminism, and climate change – disability has been deeply sidelined, if not explicitly excluded. This feeling is particularly acute in the disability community: while my queer peers celebrate “marriage equality”, us disabled (and queer!) people are still unable to marry the people we love while keeping our critical disability supports. In no way is it acceptable to celebrate marriage equality when we are still faced with an ultimatum between essential disability-specific supports and our loved ones. Additionally, I have been more and more often welcomed into spaces as a woman, as a queer person, and as a queer person – but until I am welcomed as a queer, disabled woman, I am not welcome. I cannot enter into any space without entering in my entirety.

In both development efforts and social justice movements, we need to understand that we are stronger together – and when we only accept those belonging to identical identity groups, we are divided, weakened, and unable to create real and lasting change. Your development efforts and social justice movements will remain incomplete and unrealized until everyone belonging to your issue or identity group enjoys full rights.

What do you see as the most pertinent barrier to addressing systemic inequity in an intersectional manner? How can we work to overcome this barrier?

I believe that the greatest barrier to addressing systemic inequity in an intersectional manner is the attitudes we hold.

The first attitude acting as a barrier is the belief that if you are oppressed in one way, you cannot contribute to the oppression of others. You 100% can! Me being disabled does not absolve me of racism or transphobia, in the same way that being gay does not absolve someone of being ableist or sexist.

The second attitude is believing that any attempt at intersectionality absolves you of consequences for harm caused. Trying is great, but trying is not enough. Intersectionality is not a bonus, a checked box, or a skills certificate – it’s the bare minimum, and it cannot be treated as anything more than that.

The third attitude concerns those in power, who believe we are too oppressed to hold them accountable. This attitude is violently on display in our elections, where inaccessible voting systems keep disabled people away from ballots and disabled issues off the agenda. I believe we’re in the middle of a massive shift where non-disabled people are learning that issues of accessibility, poverty, and health effect them too, and I ask that we all vote with those unable to do so in mind.

The final attitudinal barrier relates to the inaccessibility cycle, and believing that because no one of a certain identity group is present, they do not care. This could not be further from the truth! The inaccessibility cycle starts with disabled people unable to access venues to participate in activities that interest them. From here, those in power believe disabled people are uninterested or uninvolved, and there is no incentive to remove barriers preventing our participation. This creates a vicious cycle where no disabled people are able to join spaces as barriers become further and further entrenched. It’s important to remember that 1 in 5 Canadians are disabled – you just can’t see us because you have an inaccessible environment.

What are the biggest issues regarding intersectionality and/or systemic inequity in your respective fields of expertise?

Systemic inequity threatens the autonomy and agency of the disability rights movement. “Disability organizations” led by non-disabled people are hijacking disabled spaces, monopolizing funding opportunities, and perpetuating the systemic ableism that benefits them. These organizations alter school curriculums, advocate for us, and treat us like problems to be fixed, all while spreading harmful and false narratives that we are unable to advocate for ourselves. We have been, and always will be, able to speak for ourselves – we are simply prohibited from expressing ourselves in accommodated and non-conventional ways. Give us the tools we need to speak, and get out of the way. We are able to speak, and we have things to say.

Intersectionality is also a major issue in the disability rights movement. White, rich, straight, cisgender men with simplified narratives maintain the majority of positions of power. This perpetuates intersecting forms of systemic oppression, and narrows the focus of the disability rights movement to the needs, perspectives, and beliefs of a privileged few. This consolidation of privilege occurs under the systemic racism presenting barriers to self-advocacy and diagnoses for racialized folk, systemic sexism preventing women from equal access to diagnoses and care, and other systemic forms of oppression preventing people from receiving adequate, cultural and gender sensitive care. 

Further, inter-disability ableism is alive and well. As someone who identifies as neurodivergent, mentally ill, and physically disabled, I have heard disgustingly ableist rhetoric  used by these groups against these groups. And I have to ask, what are we fighting for? Why do we not identify a fundamental issue with tearing down those going through similar struggles as us? I’m not here to play oppression olympics, I’m here to make the world a safer, more accessible place for everyone. 

How can we work to address issues of systemic inequity in our everyday lives and in an intersectional manner?

I’ll break down my approach to addressing intersectional issues of systemic inequity on an every day basis into three points.

One: have an open and growth-focused mindset – there will be a lot of uncomfortable learning and you will have to own up for your mistakes, but you will improve with time and application.

Two: surround yourself with people of all different identities – if your circle only reflects your personal experience, it’s just an echo chamber. This is not a pass to go Pokémon catch-em-all with random marginalized people, but an invitation to reflect on why and how you created a space that is unwelcoming or inaccessible to those unlike you. You can improve by following and learning from advocates, activists, and creators (compensation is appreciated if possible!)

Three: you have to hold the spaces you occupy accountable for the environments they create – especially if that is uncomfortable. At school, at work, and in life, look around and see who is not at the table, then ask why this is happening. In holding spaces accountable, remember it is your job to make space, not take space from others or speak on their behalf.