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.