What Inclusion Actually Costs
I'm tired of fighting just to exist. Here's what that actually means.
Just to be clear, before you decide if you want to dive in: Not asking for pity. Not with the goal to be inspirational. But turning your attention to what’s actually happening.
Posting this now, weeks after International Day of Persons with Disabilities, at the end of December - been writing this, what you’re about to read, hopefully, in that strange space between holidays, reflection, and exhaustion, while the rest of the year wraps itself in gratitude posts and neat conclusions. Publishing weeks late, since my energy and capacity don’t work on calendar deadlines. This is the reality of high support needs, and if you can’t accept that timeline, you’re already missing the point of inclusion.
Before we can talk about inclusive practices, I’ll be telling you what reality of life actually looks like when the world isn’t built for you. And yeah, there’s a lot to tell...
I’m pretty much homebound this winter. Not just because Croatian infrastructure is hostile to disabled people when it’s cold, though that’s true. But also because SMA is mean, sneakily progressive disease. My condition keeps worsening, keeps requiring more support, and the systems that were already inadequate become more impossible. The gap between what I need to actually go out and have a life or even “live a little” and what’s actually available to get me to do so just keeps widening.
I read something in one of Facebook groups for people with neuromuscular diseases I’m in, and this one happened to be specifically for SMA support, my diagnosis. There was more to it, I just saved a few sentences that I thought painted the picture pretty poignantly. Someone wrote it anonymously, but it could have been me. It could have been any of us:
“When I was younger, I had so much more mobility, but as the years have gone on, I’ve lost a lot. All I can do is basically be on my phone for shorter slots of time since it’s tiring. Even my ability to drive my wheelchair has declined greatly... so I’m pretty much homebound. I’m in a rural area and have truly nothing in common with the few people who are neighbors - they’re my parents’ au pairs. Parents are my sole caretakers and company. But I’m so depressed.”
This is the reality that gets left out of International Days and awareness campaigns.
The overwhelmingly sad parts we don’t talk about yet we all know them
Imagine living a life where you always need help to live it at all. Imagine always having to ask for help. Always having to negotiate which one of your needs is more important because you cannot get all of them met. Ever.
Do I eat when I’m hungry, or wait until my caregiver has time?
Do I ask for help using the bathroom now, or hold it because they just helped me 20 minutes ago and I don’t want to be “too much” again?
Do I speak up about being uncomfortable, or stay quiet because everyone’s already exhausted?
“Just that”, just a couple of hours of that - having your every movement, every meal, and every interaction be a logistical or emotional battle; the constant mental negotiation, is inexplicably, excruciatingly exhausting. And that's only one small part of one example. And that’s only one small part of one example. I could go on for hours listing the rest, for a lifetime, actually, but I won’t do that to you. The fact that I’m actively stopping myself from explaining the full weight of it? That should tell you exactly how heavy it is.
That’s only one dimension of what we deal with.
Every single day.
Whole life.
It’s not just about the physical limitations that come with a diagnosis. We often say amongst us that life would be a wheelchair joyride for a great good part of it if it was “only” the disability we’d have to deal with. It’s so much more. It is existence without the actual ‘living’ part; bluntly put - you’re reduced to be just a body being managed in a room. When every basic need is a negotiation, you lose your sense of self. You aren’t a person with a life; you are a logistical problem to be solved. We are forced into a permanent identity crisis where we don’t know who we are if we aren’t fighting. And aginst what? The system? Unfairness of life? Yeah...
Living with this, dealing with a world that constantly keeps us isolated on so many levels, that sees us as an expense with no profit to be made, fighting non-stop for pretty much anything? Can we acknowledge the gravity of consequences this leaves on your health, on the mental and physical health of not only you, but everyone caring for you and around you. Your mental health declines immensely. Then your physical health worsens because of that. It’s a cycle with no exit. Very realistic problem and it’s always swept under the rug, shushed upon as impolite or/and as ungrateful, dismissed or, perhaps worst - seen as complaining and told of as “bitter frustration of us disabled folks who can never be satisfied when we’re already getting so much for free - all the parking spots…” Right.
That’s the reality for so many of us with high support needs.
So what inclusive practices should become standard?
It’d be easy to draft a generalized list. Five bullet points that “can be implemented this week”. But that’s like putting a bandaid on a fracture. It stays broken and painful until it malheals.
Before we talk about practices, we need to talk about what’s underneath them. The reasons for no equity are so deeply ingrained that real change cannot happen unless it’s strategically systematic and goes to the roots.
A world that understands this level of exclusion very much exists, and understands it makes no sense to keep allowing it - that’s the foundational first step. Before we can get to the point of reducing this to a minimum, or eliminating it altogether, or preventing people from being excluded before it even happens (hey, a girl can dream), we need people to first grasp the reality of what’s happening now. And more than that? We need to understand that inclusion isn’t just about getting us into the workplace. Is a world where we can actually participate in life at all. We need employers who recognize that “remote work” isn’t just a perk, but it is survival for some of us. We need to stop treating accommodations like favors and start treating them like basic infrastructure.
Because right now, for too many of us, we’re not living. Homebound. Isolated. Watching our bodies decline while the world talks about “opportunities” we can’t access and “inclusion” that doesn’t reach us.
Uncomfortable Truth
Here’s what I wonder: What kind of world are we building when people like us would die for the chance to just have something to do? When our only option is to exist in isolation because the basic conditions for participation don’t exist? Since I know that for me, having severe degenerative progressive disability wouldn’t matter so much if I got to live in a world where I could actually participate in life the same as anyone else. But I’m nowhere near that reality.
Inclusive practices should become standard. Yes. But first, we need to be honest about how far we are from that reality. We need to stop celebrating tiny semi accommodations as victories when entire communities are still locked out of life itself.
So on this International Day of Persons with Disabilities, yes, weeks late, posted during the season when everyone’s sharing gratitude lists and company values statements - I’m giving you a portion of the truth.
As heavy and as gravely massive to tackle as it is, the truth is that we’re tired of fighting just to exist. Don’t look at this as a tragedy to feel sorry for. Perhaps, look at it as a challenge. An invitation to actually make change.
What do I do with what I have?
Whenever I have the chance, and the energy to do so, I show up: I give presentations, facilitate support groups, provide peer counseling, speak on panels, advocate, and consult. I help others navigate what I’ve learned the hard way.
I show up when and how I can, making people feel less alone in this. But most of my days? I’m managing my health, respecting my limits, and rationing energy just to get through basic existence. “Just” existing, somehow, despite the odds and the circumstances. I find ways, aside and askew, to passionately enjoy and treasure what life brings: profound connections, simple things. And I do that professionally.
Through my brand, “Undress the Norm,” I use whatever energy I have to strip away the fake narratives and show the uncomfortable truths. Some days, that’s just me quietly writing. Some days, it’s a single post or article. Some days, it’s just existing visibly and refusing to perform inspiration. And some days, it is “just” existing. Still. I’m building something, slowly, within the constraints of a body that’s declining and a world that wasn’t built for it. It isn’t impressive by traditional metrics. But, for me personally, it is. Because it feels right. That, I believe is what makes it realistic and honest. Worthwhile. What I do consistently throughout is this: I refuse to be quiet about reality, about truths that matters.
This work exists because people believe it’s worth sustaining, not just agreeing with.
If your organization needs someone who actually understands what high support needs mean; if you’re building something and want to make sure you’re not making it worse for people like us: ask us. Now you know where we are. If you think alike, I am here.
& if you’re reading this and thinking, “I want to help but don’t know how,” a great start is recognizing that actual lived experience (however icky, overused & misused the phrase has become 🥲) can be tremendously valuable expertise - provided your consultant knows how to apply that insight to versatile, real-world situations, inclusion related or not. This kind of knowledge can’t come from textbooks; it comes from navigating systems that weren’t built for us.
In practice, this means the people telling you what exclusion looks like are the same people who can help you build something that actually includes. This is how you can practically help: by working to bridge the gap instead of deepening the pit of exclusion. Lived experience isn’t and doesn't mean that because you lived through something(s) that you have insight by default; but it becomes useful when it’s translated into systems others can actually work with. That “translation,” bridging that difference is my work.
Showing up authentically, voicing uncomfortable truths, and refusing to package disability palatably, because it is heavy, is valuable labor. It deserves to be compensated like any other expertise.
So no, I’m not asking for pity. I’m asking for your attention to what is happening and a recognition that the people living this reality have something essential to offer to anyone genuinely trying to build inclusive systems. I’m done wasting my limited, precious energy fighting just to exist. I am ready to fight for something that matters, at a pace I can actually sustain.
Because we’re tired of fighting just to exist. Believe it, I should know.