By-and-for in the Disability Community: Nothing About Us Without Us

As a disabled person, the term “by-and-for” brings such a sense of security to me. When I’m working within the disability community, finding out a group or initiative is by-and-for is literally a breath of fresh air as I sift through the charity models and burden rhetoric that plagues my life. And while no by-and-for group is perfect (or immune from criticism), I know they’re going to do their best to honour lived experiences and empower disabled people how they want to be empowered – and I don’t feel like that’s too much to ask for.

A quick explainer on by-and-for: as you might have guessed from the term, by-and-for groups are by members of a community for members of that community. These groups work from within the communities they are inherently a part of to promote empowerment on a local, national, international, and systemic levels. They centre their members lived experience and resulting unparalleled expertise to serve their community’s needs, as determined by their community. 

You might have heard the phrase “nothing about us without us”. I love it, some think we can do better. But at the same time – it’s kinda pathetic that’s where we’re at as a society right now. For so long, non-disabled people have been dictating the disability community’s needs, wants, and experiences with absolutely no input from disabled people, and no widespread criticism for their often harmful practices. And this practice still goes on! The perspectives of non-disabled people continue to dominate disability debates, sidelining actual lived disability experience to favour burden or charity-model rhetoric. 

Sometimes working in the disability community feels like one of those inflatable bouncy castle obstacle courses. Or better yet (because I just couldn’t work out the analogy into words) catfishing. I go to meet what I assume is a by-and-for group, based on their website, messaging, and communications – and end up tricked into explaining my existence to non-disabled people instead of getting to work on pressing issues. When I first started getting into this work, I underestimated how pervasive these groups are! And this is partially explained by the shifting form of non by-and-for groups: keeping disabled people at the lowest levels of the organization to claim legitimacy while denying them leadership roles and agency. 

And what’s even more frustrating is how these non by-and-for groups have such a chokehold on the non-disabled public! I’ll spare the public call-outs (for now), but the organizations most non-disabled people are familiar with have next to no disability representation! And these organizations carry on monopolizing opportunities, funding, media attention, because they portray themselves as by-and-for, or are incredibly successful in pushing the charity model or burden narrative. 

Let’s break down some of these narratives. 

The charity model sees disabled people as charity cases – people with issues that can be solved with the right amount of money. The charity model fails to address systemic ableism and other root causes making many of us disabled people requiring additional and often unmet support. The charity model also promotes a harmful perspective that sees disabled people as less than, and denies disabled people their agency and autonomy in finding sustainable, empowering solutions to their issues. 

The burden narrative is most often pushed by parents – with the most extreme cases having parents of disabled children forcing their disabled children to testify in court that they shouldn’t have been born. Parents of disabled children often centre their personal and negative experiences of having a child with a disability, or they use their child as a way to legitimize their views that do not reflect the disability community at all. Parents of disabled children are absolutely essential in empowering disabled youth, and protecting them from harmful situations. They can do a lot of good – but they can also do a lot of harm. I’m not a parent, and I don’t plan to be – so while my criticism will not go further, I believe we all have a role in holding all people accountable for the narratives and rhetoric they’re pushing. 

Some may argue “who cares what non-disabled people are saying, they have a right to their opinion.” And that’s valid! It’s not wrong! But we have to understand that non-disabled people are operating at a serious advantage when it comes to controlling the narrative, especially since disabled people are less likely to have that power due to systemic ableism. People have a right to their opinion, but that does not absolve them of the consequences of their actions. When a parent of a child with a disability goes to court and sues a doctor for giving birth to their disabled child – that sets a legal precedent. That normalizes a narrative that sees disability as a crime punishable by death. But we don’t hold these people accountable! And so this hate speech and dangerous rhetoric is allowed to go unchallenged.

The harm non-disabled people can do is further amplified by the current legislation around Medical Assistance in Dying in Canada. Known as MAID or Bill C-7, many have said the government has made it easier for disabled people to die than live. I’m one of them. And what really kills me (or what really could kill me!) is the fact that we do not have adequate disability representation in our government! We do not have equitable opportunities to have our perspectives reflected in our institutions! While non-disabled people get to vote on whether or not to kill us and push this narrative, they’re not the ones whose lives are threatened, who are losing their loved ones, friends, and peers. 

So yes, you are entitled to your own opinion. But if your opinion is that it is better for me as a disabled person to die than live, you are not immune from the consequences of your actions. 

But before you give up on disability issues entirely, please keep reading. I want non-disabled people to care about disability issues! I want them to speak up against ableism and inaccessibility! I just believe the current way non-disabled people are dominating our spaces and conversations is not acceptable, and that we have a lot of room for improvement (what can I say, I’m an optimist.)

Before getting into some actionable tips, tricks, and reminders for disability allyship, let’s talk about how disability has been excluded from intersectional allyship movements! Despite disability discrimination claims making up half of Ontario Human Rights Court cases, we are constantly and consistently sidelined or entirely excluded from diversity, equity, and inclusion initiatives! Despite making up 20% of the population and being the only minority group you can join at any time, intersectional allyship and initiatives continue to ignore our needs and agency – while claiming to value all experiences! As someone in an international development and human rights program, involved in a lot of student and community movements, I am routinely disgusted by the hypocrisy I see! To claim to be intersectional while ignoring disability isn’t just ignorant, it’s violent. And when I point this out, I’m more often dismissed than taken seriously!

To sum it all up, we all have a lot of room to improve. Disabled people too – a cross-disability allyship blog is in the works for those of us in the disability community (and non-disabled people interested in learning more!) I don’t want this blog to make you feel discouraged or overwhelmed, I want it to help you understand just how important by-and-for groups are, and how important it is to live up to the promise of “nothing about us without us.” As long as you are truly trying your best, it’s all I can ask, and it will be so appreciated. So, here are your tips:

  1. Understand that you can’t completely understand our lived experiences. Disabilities and the people that have them are complex, diverse, and always changing. Instead of accepting that you can’t know everything, commit to always learning and improving your disability allyship practice.
  2. Understand that, like all people and communities, the disability community is complex and intersectional. We are people. There is rarely a universal perspective or opinion, and our lived experiences seriously differ based on our belonging to other groups (ie. BIPOC, LGBTQ2s+, etc). Instead of treating the community and advocates like monoliths, hold space for different opinions and ideas.
  3. Understand that our understandings of disability, neurodivergence, accessibility, and more are always expanding! These are complex, evolving, and living concepts that need to change as our realities change. Instead of feeling overwhelmed by changes in understanding, take it as an opportunity to challenge your knowledge and beliefs.
  4. Commit to centring the lived experience of disabled people, and make sure you’re centring disabled people from all different backgrounds. For another blog post, but the disability community is not immune to white supremacy, sexism, homophobia, you name it. 
  5. Commit to unlearning internalized ableism, harmful stigma, and common misconceptions. It’s an excellent first step to any allyship practice, and I encourage you to check back in on these ideas regularly.
  6. Support disabled people in all aspects of life – education, employment, community, etc. We are people that deserve equity and agency wherever we go, whatever we’re doing. Not just when we’re doing what you agree with, and acting the way you want us to.
  7. Support disabled advocates, activists, organizations, and creators – it’s draining taking our intense and complex lived experiences and sharing them in the face of systemic ableism and unchallenged stigma.
  8. Push for accessibility, inclusion, and representation in the spaces you occupy. When a disabled person is already there and doing that work, support them instead of centring yourself!

“Differently Abled”

differently abled. diverse abilities. all abilities. diverse needs. special needs. handicapable. 

If you read that list and felt angry/uncomfortable/annoyed – congrats, you’re probably disabled and/or a semi-decent disability ally.

If you read that list and felt accomplished/proud/helpful – you’re gonna want to read this blog. I’ll try to be nice, but us disabled people don’t owe you that. If you want to “help” us – get ready to be uncomfortable, get ready to be challenged, and get ready to learn.

For the same reasons that make disability uncomfortable for others to think about (ie. non-disabled people), “disabled” is now considered, by some, to be a bad word. A mean word. An insult. So, to save us poor helpless disabled people, the non-disableds have gifted us so many wonderful alternatives that truly embrace our comprehensive and intersectional identities. Just kidding! They’re pushing alternatives that no one (for the most part) in the disability community actually wants, without our input or request. We’ll get into this later, but speaking over disabled people to tell us our lives are insulting, to sanitize our experiences, to make them more palatable for non-disabled audiences, is patronizing! and infantilizing! and just generally infuriating! 

I am tried of coddling non-disabled people in their ignorance and degrading attitudes, all so I can warm them up just enough to guide them to the realization that disability isn’t a bad word, while making them feel as though they came to that conclusion all by their non-disabled selves. In disability advocacy, and in life, we have to balance our truth, our experiences, and our dignity with the fragile egos and self-righteous ignorance of people that don’t even try to understand our lives – just to slowly make the world less deadly to us. 

I need the onus, the burden, of challenging ableist behaviours to not fall on disabled people – we’re busy! we’re tired! we have other things going on! (And at the same time, am I really going to trust a non-disabled person to spearhead allyship initiatives?) So while I struggle to balance approachability and the basic truth of my existence, I might get a little heated in the blog today – because we aren’t even at the most frustrating part!

Hearing non-disabled people spew their “diverse abilities” rhetoric is bad enough (clearly.) But when a non-disabled person tells me, a disabled person, to not say the word “disabled”? They don’t only cross the line, they rip it out of the ground! They push the line a mile back and expect the rules to change for them! They literally expect me to accommodate their ignorance, while not even understanding how hard it is to get disability-related accommodations! 

And the best (worst) part? This happens most often in my professional capacity! Where I have been specifically requested to educate non-disabled people on just generally sucking less at being a decent human being. When I am invited into a space to educate non-disabled people, I expect some weird questions. I expect some ignorance. But I still never inherently expect the people I have been invited to teach to tell me how to teach them! (A quick props to students, who make up the majority of my audience – you guys are always ready to learn!)

Let’s take a moment to just try and wrap our brains around this experience. I, a disabled person, am being told by non-disabled people to not call myself disabled. While I am expressing my lived experience as a disabled person, I am explicitly policed in how I express myself to make it more palatable to non-disabled people. And I have to ask: why do they think this is appropriate? what do they think they are achieving? what is so bad about being disabled?

It’s a baffling phenomenon! It’s one that I struggle to understand, and one that is impossible to really explain to others. I can’t tell you how it feels when I am told to sanitize, water down, and degrade my lived experience for the sake of the very people contributing to my oppression – because I can’t even wrap my brain around it myself. The same people that speak over disabled people, are the ones that claim to be helping us! They’re trying to save us from ourselves, when we don’t need to be saved – we need them to stop threatening our lives.

The entire “differently abled” nonsense is such an efficient proxy for how non-disabled people have co-opted disability movements and organizations. Non-disabled people are not only actively robbing disabled people of opportunities to speak for themselves, they are perpetuating a narrative that denies us the chance to even try! While they actively oppress us, they speak for us – and the kicker is, the majority of people will listen to them. The majority of people will listen to non-disabled people on disability issues before they listen to disabled people. And the majority of people will listen to non-disabled people on disability issues and not even see the problem! They will claim to be allies, to be knowledgeable, to understand – and still not feel the need to actually include disabled people in their learning, in their work, in their organizations. 

Many, many more blogs will come about the existential threat that is non-disabled people occupying disabled spaces and actively oppressing us. In short, it kills. It kills disabled people. 

We do not have adequate or proportional representation in our democratic institutions – because non-disabled people claim they can speak on our behalf. We do not have adequate or proportional representation in our democratic institutions – and this has allowed for the abomination of continued institutionalization in the 21st century, to the continued use of long term care homes, to the new forms of institutionalization, sterilization, and degradation that has been deemed charity work. Deemed beneficial. 

When my democratically elected government passed a bill on medical assistance in dying – they did not represent me. They did not represent my community. They represent the very same non-disabled people that profit off of my continued oppression, and the ones who genuinely believe I am better off dead.

And when you believe that disabled people are better off dead, of course you are going to think the word “disabled” is an insult.

A few disclaimers, as is traditional. Anyone can identify with whatever labels they want, they can call themselves whatever they like. For labels like neurodivergent, mad, chronically ill, medically fragile – that’s a whole other ball park that will get a blog post of their own (until then, please god do not rope those labels in with diverse abilities.) 

All disabled people are different – some will prefer differently abled, some will be pro-MAID, some will appreciate the work of non-disabled people. I’m not them – but who am I to tell them how to identify themselves? how to feel? how to think? how to understand the world around them?

But when it comes to non-disabled people and disability? Listen to actually disabled people. Follow their cues. Don’t treat us like monoliths. When in doubt, just ask. But never, never tell us how to express our existence. An existence that you will never fully understand, and one that you have implicitly contributed to destroying. 

Disabled, disabled, disabled.