(nature sounds) [Hannah Soyer] Okay, are you ready to do half up, half down?

[Caregiver] Yes.

[Hannah Soyer] I have a form of spinal muscular atrophy, which is a form of muscular dystrophy and how that shows up in my life is just that many physical things I am unable to do myself.

[Hannah Soyer] I think that's, it's okay.

What it will do is it will work.

[Hannah Soyer] I've had hired caregivers come in and out of my life since I was three.

When I moved away to college at 18, I started having around the clock caregivers because my parents weren't there.

[Hannah Soyer] Yeah, that looks good.

[Hannah Soyer] Ever since then I've been hiring and managing all of my personal caregivers.

I've had probably over a hundred people at this point in my life.

I have people help me with pretty much any day-to-day activity that someone might need help with.

[Hannah Soyer] Don't you think these shoes make me look like Benjamin Franklin?

[Caregiver] I was just about to say that.

[Hannah Soyer] They look like the Founding Father shoe.

[Hannah Soyer] Really, it's more than just personal care.

They're supporting me in living a full life that I want to live.

[Caregiver] Shall we?

[Hannah Soyer] I think that question of what does a full and satisfying life look like to me, that is having the autonomy to make my own choices about how I spend my time.

[Hannah Soyer] Seth and I are going to make lemon butter chicken cutlets.

And so, I am looking up the recipe.

[Hannah Soyer] I really love to cook and because of my disability, the nature of my condition, I need my caregiver to do the full physical act of cooking.

[Hannah Soyer] I think we should quarter them.

[Caregiver] Quarter.

[Hannah Soyer] And I do all of the instructing and telling them what to do.

[Hannah Soyer] Why don't we drizzle and then salt, pepper, garlic.

[Caregiver] Okay.

[Hannah Soyer] And all of this, none of this really touches on the support that I need to stay alive, like the actual getting me water if I'm coughing, which happens a lot, or picking up my head if it falls back, which happens a lot, or helping me, you know, do any of the things that humans do throughout the day?

So, I don't want that to be forgotten.

But it is so much more than that as well.

I want to create the most sustainable care situation, care network as possible.

[Caregiver] Can I butterfly it?

[Hannah Soyer] Whatever you want to do, man.

This is your life, well, it's my life -- [Caregiver] It's our life together.

[Hannah Soyer] Right.

Right, right right.

[Hannah Soyer] Part of that has been reframing caregiving in my mind as a really interdependent relationship where my caregivers are supporting me and then remembering how I'm supporting them as well and thinking of it as a growing community.

[Hannah Soyer] This is really impressive.

[Caregiver] We did it!

[Hannah Soyer] Oh my goodness!

[Caregiver] Look at those taters!

[Hannah Soyer] Pretty nice!

[Hannah Soyer] Every human, every life form does need other people to live and that is a fact of life that I think our culture and country and society doesn't want to deal with.

It is such a unique experience and although needing care is without a doubt the largest stressor in my life, it is also one of the greatest blessings.

[Hannah Soyer] We did good.

[Caregiver] Mm-hmm.

[Hannah Soyer] Mm-hmm.

[Hannah Soyer] I have met amazing people who I never would have met.

A lot of them are my friends, have become my friends, and so being able to build a life with my friends is pretty cool.