Learning to Take up Space

Someone else’s discomfort with your advocacy doesn’t necessarily mean you’ve done something wrong.

I wish I had understood that sooner.

There have been moments while advocating for our daughter when someone’s response to me made me question myself. Was I pushing too hard? Was I being difficult? Was I asking for too much? Should I have accepted the answer I was given and moved on?

I’ve come to realize that sometimes the discomfort I was feeling wasn’t because I had crossed a line. It was because I had stopped quietly accepting one.

And maybe that has been one of the biggest lessons I’ve had to learn through all of this: taking up space doesn’t always mean becoming louder. Sometimes it simply means becoming steady enough to keep asking the question, even when it would be easier for everyone else if you stopped.

And therein lies the tension: I still want to collaborate.

I don’t walk into these conversations looking for a fight. I value the expertise of the professionals caring for our daughter. I want to listen. I want to understand why things are done the way they are. I want to work alongside the people within these systems, because when that collaboration works, it can make an incredible difference.

But I’m also learning that collaboration doesn’t require unquestioning agreement.

I can listen. I can consider another perspective. I can recognize that there may be limitations or pieces of the process I don’t yet understand. I can even be wrong.

But I don’t have to make myself smaller just to make the process more comfortable for everyone else.

Thatʻs just the process.

One of the places I began learning this was while navigating durable medical equipment for our daughter.

There were processes I was told needed to happen a certain way. Policies. Procedures. Steps that were simply presented as this is how it’s done.

And somewhere along the way, I started asking a different question:

Why?

Not because I believed policies shouldn’t exist. Not because I thought I knew more than the professionals around us. But because sometimes, when I followed the logic of what I was being told, it didn’t make sense for the nuance of our daughter’s situation.

I started learning that “this is our policy” or “this is our process” didn’t necessarily have to be the end of the conversation.

Sometimes there was a perfectly reasonable explanation for why something needed to happen a certain way. Other times, the more questions I asked, the less logical the process seemed—particularly when applied to what we were actually trying to accomplish for our daughter.

And I started allowing myself to say that out loud.

As our daughter has grown — as children tend to do — it became time to make adjustments to her wheelchair. We worked with her medical team and our DME vendor to determine what modifications were needed to better support her during everyday mobility and transportation.

The request was submitted to insurance, and eventually we received a decision: some of the modifications were approved, while others were denied.

We still believed the denied pieces were necessary, so I asked our vendor to move forward with an appeal.

Nearly two months passed while that appeal was still in process when I started wondering about something else:

Where were the pieces that had already been approved?

So I asked.

I was told that because I wanted to appeal the denied items, the vendor couldn't order the approved equipment yet. We would need to wait until the entire appeal process was complete before any of the items from the original authorization request could be ordered.

I remember thinking that was odd.

But okay. If that's the process, that's the process.

Except the more I thought about it, the less sense it made.

I brought it up with members of our daughter's medical team, and they didn't understand the reasoning either. From my conversation with the vendor, I initially had the impression that this wasn't necessarily his decision — that perhaps this was an insurance requirement. Maybe insurance wouldn't allow a vendor to move forward with approved items while other items from the same authorization were under appeal.

So instead of continuing to wonder, I called our daughter's insurance company myself.

And I learned that wasn't their policy at all.

The approved equipment could be ordered.

I remember going back to the vendor thinking I had good news. We didn't have to keep our daughter waiting for equipment that had already been approved while we fought for the pieces that hadn't been.

Instead, I was told:

“It's our policy that we wait.”

And there it was again.

Policy. Process.

Except this time, I knew there wasn't an insurance restriction preventing us from moving forward.

So I started asking why.

Why should equipment our daughter needed — and that insurance had already agreed to pay for — sit unordered for potentially months while an entirely separate decision was being appealed?

What purpose did waiting serve?

Whose needs did that policy actually protect?

Because from where I was standing, it certainly wasn't our daughter's.

I couldn't understand the reasoning. Was it administrative convenience? Was it an attempt to keep the entire authorization together? Was there something else about the process I wasn't seeing?

I was willing to understand if there was.

But what I wasn't willing to do anymore was accept “that's our policy” as enough of an explanation when the practical consequence of that policy was that our daughter would continue waiting for equipment she needed — equipment that had already been approved.

And this wasn't the first time conversations with this vendor had made me aware of the administrative and financial burden these processes could place on their business. I could understand that reality. There is paperwork involved. There is staff time involved. There are costs associated with navigating insurance, preauthorizations, denials, and appeals.

But understanding the burden on the business didn't mean I had to accept our daughter bearing the consequence of making that burden easier to manage.

So I pushed back.

And this time, I brought our daughter's medical team further into the conversation.

As we continued asking questions together, they began seeing more of the insufficiencies I had been experiencing throughout the process. What had initially felt like me questioning whether I was misunderstanding something became a larger conversation about whether the way we were being supported was actually working for our daughter at all.

Eventually, the question became bigger than whether one piece of approved equipment could be ordered while another was under appeal.

Did we have a vendor who was willing to advocate for our daughter as strongly as the rest of her team was?

For us, the answer eventually became no.

And ultimately, our family and her medical team came to the same conclusion: it was time to find a vendor we felt would work alongside us — someone willing not only to process paperwork and equipment orders, but to help advocate for our daughter's access as part of her larger care team.

Every Unnecessary Layer Has a Cost

The more I’ve navigated these systems, the more I’ve realized that every unnecessary layer has a cost.

Another phone call.

Another email.

Another form.

Another appointment.

Another explanation of your child’s disability.

Another request for documentation.

Another denial.

Another follow-up.

Another person you have to convince.

Another few weeks — or months — of waiting.

On paper, each one might look like another step in a process. But for the family navigating it, those steps accumulate.

They take time. Energy. Emotional capacity. Time away from work. Time away from your other children. Time that could have been spent simply being a family instead of managing another piece of your child’s care.

And somewhere in the middle of navigating all of this, I started thinking about the families who eventually stop pushing.

Not because their child no longer needs the equipment, accommodation, therapy, or support they were asking for.

Not because they suddenly agree with the decision.

But because there are only so many times someone can be asked to start over, follow up, prove the same need, or find another way around a barrier while still carrying everything else their family requires.

And that realization has stayed with me.

Why does accessing something a child needs require this much fight in the first place?

I don’t want the lesson from our experience to be that parents simply need to fight harder.

Because not every family has the same capacity to keep pushing.

Some families have more time. Some have knowledge of the systems they’re navigating. Some have people around them who know what questions to ask. Some have the flexibility, resources, language, confidence, or support needed to keep going when another barrier appears.

Others don’t.

And none of those things determine how much their child needs what they are advocating for.

A child’s access shouldn’t depend on how skilled, connected, persistent, or resourced their parent is able to be.

And yet, sometimes it feels as though persistence itself has become an unofficial requirement for access.

I Wish I Could Say It Was Just DME

That this lesson was limited to navigating medical equipment. But it’s not…

Around the same time, I was learning a similar lesson within our daughter’s school.

What we needed seemed relatively simple: a safe, accessible place to load and unload our daughter and her wheelchair at school.

But our process doesn’t look like everyone else’s.

Getting our daughter in and out of the car takes more time. We need enough space to safely unload her wheelchair, get her positioned, make sure everything is secure, and then send her into school. We couldn’t always move through the regular loading and unloading area in the same way another family could.

At first, I think I struggled with that distinction myself.

I didn’t want to inconvenience other families. I didn’t want to ask for something “special.” And as I continued bringing the issue to school administration, there were moments when the way things were communicated back to me made me wonder if that was exactly what I was doing.

Was I asking for too much?

Should we just figure out how to make the existing system work?

Was I becoming that parent who kept pushing an issue everyone else seemed ready to move past?

That uncertainty made advocating harder than I think I realized at the time.

Because I wasn’t only trying to solve an accessibility problem anymore. I was also having to continually convince myself that I was allowed to ask for it to be solved.

Our daughter’s teacher saw the need. She advocated alongside us and worked hard to make sure our concerns were heard by school administration. Her aide understood the realities of getting our daughter safely in and out of school. We had people within the school who saw what we were asking for and didn’t make us feel burdensome for needing it.

And yet, administratively, something that felt like it should have been relatively simple became incredibly complicated.

So I kept emailing.

I kept following up.

I started creating a paper trail.

Eventually, I reached outside of the school for support from Leadership in Disabilities and Achievement Hawaiʻi. And when we still weren’t reaching an appropriate solution, I went higher within the DOE.

That part was incredibly uncomfortable for me.

When the issue reached the district level, I remember feeling as though my decision to take it further was itself being questioned — as though this was something I should have been able to resolve at the school level.

And part of me wondered the same thing.

Should I have?

Was I making this bigger than it needed to be?

But another part of me was beginning to realize:

I had tried to resolve it at the school level.

Going higher wasn’t my first step. It was what happened after the steps before it weren’t creating meaningful access.

LDAH helped me understand something during that process that has stayed with me ever since. What I was asking for wasn’t a special privilege.

Our daughter has different mobility needs.

Treating every family exactly the same would not magically make those differences disappear.

I think somewhere along the way I had confused equality with access.

Equality might mean telling every family, This is the loading and unloading process. Everyone follows the same one.

Access asks a different question:

What does this particular student need in order to safely participate in that process?

Our daughter didn’t need something “extra” because we wanted preferential treatment. She needed the environment to account for a barrier that other students simply didn’t have.

That realization changed something in me.

I became less afraid of saying, This isn't working for her.

Less afraid of asking for something different.

Less willing to accept the idea that because a system worked for most families, our daughter should somehow be made to fit within it too.

And still, this wasn't an overnight transformation into some fearless advocate.

I questioned myself.

I got frustrated.

There were conversations where I had to work incredibly hard to stay level-headed. There were times I wondered whether continuing to push was worth the tension it was creating.

And there were moments when it felt less like we were collaborating to create an environment where our daughter could thrive and more like we were being asked to find a way to conform to what already existed.

But I kept coming back to the same thing:

She needs to be able to safely get into school.

That was it.

It took an entire school year.

When we returned for the beginning of the new school year, there was finally a designated sign for her wheelchair loading and unloading area.

And I wish I could say that was the neat ending to this story.

It isn’t.

The signage we have isn't permanent. It's affixed to a large cone. And now that we've had time to actually use it, I'm seeing another problem: people don't always notice it. The space isn't always respected in the way I had hoped it would be.

So after everything it took to get there, I find myself asking another question:

Is the solution actually working?

And I think this is another part of advocacy I'm still learning.

Getting a yes isn't necessarily the same thing as getting access.

I can appreciate that movement happened. I can be grateful that there is now something there that wasn't there before. And I can still acknowledge that the solution may not adequately address the problem we spent an entire school year trying to solve.

Those things can exist together.

Because ultimately:

An accommodation has to function in practice, not just exist on paper — or on a cone.

And maybe taking up space also means being willing to say that.

Not because nothing is ever good enough.

Not because I need everything done exactly the way I envision it.

But because the goal was never the sign.

The goal was access.

Learning to Take Up Space

When I look back at these experiences now, I realize just how much they have changed me.

There was a time when so much of my energy went into wondering whether I was allowed to ask the question. Whether I was asking for too much. Whether pushing a little further meant I was becoming difficult.

I don’t carry those questions in quite the same way anymore.

I still have moments of uncertainty. I still get frustrated. I still have conversations that leave me wondering what the next right step is. And sometimes, even after months of advocacy, I can look at the solution in front of me and realize there is still more work to do.

But I also recognize myself differently now.

I’m learning to trust the part of me that notices when something doesn’t make sense.

To ask why.

To listen to the answer.

To seek another perspective.

And when necessary, to keep going.

There is still a long way to go.

But I can finally see how far I’ve come.

Maybe that is what learning to take up space has looked like for me.

It hasn’t meant becoming the loudest person in the room. It hasn’t meant walking into every conversation ready for a fight. And it certainly hasn’t meant believing that I always know best.

It has meant learning that I can be collaborative and still question.

That I can listen and still disagree.

That I can understand why a policy exists and still point out when it creates an unnecessary barrier.

That I can appreciate movement and still ask whether the solution is actually working.

And that someone else’s discomfort with my advocacy doesn’t necessarily mean I’ve done something wrong.

Sometimes, taking up space has simply meant becoming steady enough in why I’m there that I no longer feel the need to make myself smaller to make the process more comfortable for everyone else.

But there is one more thing I want to be careful about as I write this.

I don’t want our story to become another message telling parents that they just need to push harder.

Because I know what it has taken for me to keep pushing.

I know the people who have stood beside me. The professionals who have helped me understand the systems I’m navigating. The advocates who have helped me understand our rights. The family who helps carry the rest of our life when advocacy starts taking up more of it.

And I know that not every parent has those things.

So if you are somewhere in the middle of one of these systems and you are exhausted, I don’t want you to read this and hear:

You should be fighting harder.

I hope instead you hear:

You are allowed to ask why.

You are allowed to ask someone to explain the process.

You are allowed to question whether a policy makes sense for the nuance of your child’s situation.

You are allowed to seek another perspective.

You are allowed to ask for support.

You are allowed to say, this solution isn’t actually solving the problem.

And you are allowed to take up space in conversations about your child’s access.

Because perhaps one of the hardest things I’ve had to unlearn is the idea that advocacy becomes unreasonable the moment it makes someone else uncomfortable.

It doesn’t.

There is still so much I am learning. There are still systems we are navigating, questions I don’t have answers to, and—as the cone sitting outside our daughter’s school continues to remind me—some things we have advocated for that still aren’t quite where they need to be.

There is still a long way to go.

But I’m learning to take up space along the way.

And I can finally see how far I’ve come.