While looking at the Detroit skyline from my tiny studio apartment, I made the impetuous decision to visit Korea. This would be my first time back in 20 years, since my adoption at age 4 by a white family in Michigan. It was the summer of 2003, and I booked my ticket two weeks before departure. This was also the period when the mysterious weakening of my legs had begun (the first signs of my genetic neuromuscular disorder that made me a full-time wheelchair user), and this hastened my sense of urgency, despite feeling nervous about traveling alone.

Lost in Thought. Lost in Me. Lost in You. Lost in Japan.

As you know, I’ve been wheelchair traveling around Japan. It’s been 3 weeks today, and we have 12 more days here before we head to Taiwan and Korea. So far we’ve completed Tokyo, Matsumoto, Takayama and Japan Alps and Nagoya. We’re working on crossing off our last 2 cities before we leave Japan.

May 27, 2024 @ 3:45AM / Takayama, Japan 

I’m awake and in insurmountable pain. Fatigue has cloaked me from sky to floor. My chronic stomach is no friend of mine. I could never explain the pain I’ve been in behind the smiles. The smile is genuine as I’m able to ignore pain when I’m truly inspired to live while traveling or creating, but eventually my body catches up and reminds me who is boss. My will is constantly pushing against my body, and I’m just an innocent bystander watching it happen.

Collectively, we hold a diverse array of stories, hell-bent resilience, softness, power, stories to tell from our bellies, talents, style, humor and dreams—and though we all hold disability in common, our individual stories tree-branch into a variety of perspectives; further contextualizing the simple narrative the disabled community has unfairly been dealt.

Oliver, a passionate humanist, deeply cared for his patients and people. Read his books. His work helped humanize the stories behind patient cases; an example of what a good doctor should be. He put humanity into medical care; humanizing his patients by not focusing on what they were “missing” and instead, armed with exceptional curiosity, looked for the richness in differing experiences; a perspective he could never have but took the time to ask. 

When you find out you’re going to be disabled, one of the first things you may think of is sex and dating. “How is this going to work?” is not a question relegated only to curious prying eyes from strangers yet also an internalized one that can burn deep within.

The phrase, ‘Disability Is Not A Bad Word’ comes from the need to tell society that, yes, we may be disabled, but this does not mean our lives are smaller than yours. We are not smaller than you. It means we are not monoliths or riddled with only sadness-void of agency or worth-as you may immediately suspect. It means we are full multi dimensional beings with abilities, desires, contributions, passions and dreams with the capability to influence love and eroticism. It means we have all the same range of emotions and quality of living as non disabled people.

I've become afraid of my body. I appreciate her and all she has carried us through, but I'm still afraid. I'm afraid of new treacherous body tales, new pain and an uncertain future. I'm afraid of its fragility. I'm afraid of the inevitable.

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.