When you’re disabled vulnerability inevitably surrounds your every move (or lack thereof). You're vulnerable in ways most people don’t have to think of, and if you require a lot of assistance like me, vulnerability comes without a choice or modesty-from required help with all bathroom exchanges to getting dressed to needing help in every single daily act.

This is me.

When I’m finally tired of having no independence.

When I’m finally tired of dripping fatigue.

When I’m finally tired of unrelenting pain.

When I’m finally tired of losing everything I love.

When I’m finally tired of being tired.

It is easier to get a gun in America than a wheelchair. This is not an anti-gun post, this is an anti-do nothing post in the face of an undeniable problem.

My first children’s book week…

…it’s about resetting our own lens and truly seeing the self; a systematic collection of psychological, social, experience, neural and molecular identity. The core of who we are. and where true awe inspiring beauty lies. The self is more than the physical.

Learning to love your body in all its stages is an inveterate adventure without a disability. But add a disability to the equation, with an atypical or anti-mainstream body, and you’ve got a lot more noise to work through.

Innovation n. The act of introducing something new.

Disability is innovation. Ready why.

What is adoption really like? November was Adoption awareness month, here’s my late contribution. Often, we only hear about adoption from a society who romanticizes it, as they pat the adoptive parent on the back for being saints, and pat adoptees on the head while telling us how lucky we are that someone would rescue the “unwanted”; a similar response I receive as a married disabled person. This not so subtle message was drilled into me from young: “I should only be grateful for the sacrifice it took to get me” thus, in my little abandoned mind, I’m a burden who needs to prove I’m not a mistake.

This message throughout my life helped mold my self-perception.

Me: I didn’t do anything today.

Jason: You existed. That’s enough.

I can be on a productivity spiral almost daily. I never feel that I’m doing enough, no matter what I do or accomplish, and can easily get down on myself—thinking I need to do more. Be more.

But here we are. I’m doing my best to accept this impending destination as no treatment exists yet. I’m struggling with the knowledge that this won’t end until it’s eaten up my body. I’m struggling with feeling more frail, in pain and weak every year. I’m struggling with wondering if I’ll die young. I’m struggling with my hands as I feel the weakness spreading. I’m struggling with no longer being able to draw one day—another form of personal expression taken from me.

Happy International Day of Persons with Disabilities Day!

“To be different is a gift. To be ordinary is common.” - Aída Salinas

How can you love a body that’s different? How can you love a body that puts you in constant pain and utter fatigue? How can you love a body that doesn’t work like the typical? How can you love a body that feels like it’s slowly dying? How can you love a body that makes you feel mortal weakness to its core?

I’ve always felt connected to the desert as it mirrors so much of how I’ve felt throughout much of my life: a sense of loneliness, abandonment and aloneness, but thanks to Jason I haven’t had to do it alone anymore. Jason has seen most of the stages of this disease, from the cane and leg braces days to a walker, manual chair and now a power chair. He has witnessed the darkest pits and brightest days…

Society likes to image disabled as one thing. We’re positioned as the “uncool” group who don’t belong and are better hidden. In society’s eyes, we can’t have interests, sexuality, be accomplished, opinionated, educated or edgy. We can’t be travelers. We can’t be interesting. We can’t be a (company) asset. We can’t be fashionable. We can’t be talented. We can’t be sexy. We can’t. We can’t. We can’t.

Melancholy set in last week, so we took a spontaneous road trip to Joshua Tree. Saturday was my dad’s birthday. He died last year. We took my dad to Joshua Tree the last time he visited California, right before his double lung transplant…

I am NOT A BURDEN.

I am NOT A BURDEN.

I am NOT A BURDEN.

Disabled people are

NOT A BURDEN.

having pride in oneself can be challenging in a world that says don’t be you. How can you have pride when you’re met with such odds and ignorance?

It’s AAPI Heritage Month…Food connects and opens people because food is very personal. It’s an offering, an extension of love and kinship. When we perceive something different, we inherently fear it first, but through food we can see another’s’ humanity—mirroring kinfolk archetypes who have loved us as children through food; reminding us of our moms, grandmas, sisters and the family who fed us. It breaks down walls and irrational fears.