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.

It’s about inclusion, sure. But it’s also about fragmenting our thinking—changing collective thought and realizing the lack of including different minds and experiences restrict the possibilities of greater innovation in products and experience. It’s about understanding human centered capitalism can also be a profitable business model…

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.

This is me in bed with no one in the world knowing (or perceivably caring)…

Jason: “I just realized it’s completely normal to wipe your butt.”

Me: “It’s a privilege, don’t forget it.”

A window into our conversation while sitting and working at our desks the other day.

Every couple has to work together to find their rhythm and rhyme and we’re no different. But as someone who once wasn’t disabled and in typical able-bodied relationships, it’s no doubt that an interabled relationship has its differences including unique challenges and communication (necessary for any relationship but even more so for interabled).

An interabled relationship is not better or worse, just different…

While I advocate for disability, rare disease is another entire (very important) section that I could write a book on. It’s unique. We’re rare and often unseen and unheard — and it’s heartbreaking. A world of greed and profit centered capitalism says rare does not count as important as mainstream diseases and offers little profit in a multi-billion dollar sect of high profits in drugs + therapy. Except, combined, there's over 7,000 rare diseases worldwide — most of them genetic and difficult to diagnose. This affects up to 400 million worldwide.