I realized this after Congress voted this week to deny me the pleasure of peeing like non-disabled people do, which is to say, without having to do any kind of math, scheduling, or general advance planning when going out to public places.
But by being denied the minimum, I’ve learned to want everything.
You know what would be great? If I could be envied by non-disabled people.
Yes – envy’s bad! I shouldn’t want to be envied. I should want inclusion. Justice. Equality. I should want respect, love, acceptance.
Of course I want all that. But I want more.
I want to be envied by non-disabled people. Not admired. Envied.
Envy always has a name. You can’t envy an object or an experience. Envy is always a person.
Envy is not about ability. Envy doesn’t try and that’s why I want it.
Envy does not have a skill set. You do not envy the ability to do Pee Math. You admire it and wish it upon every member of Congress who voted for HR 620.
I don’t want to inspire you or motivate you or educate you. Envy has nothing to impress you with, persuade you to do, or teach you about.
I want to be me, just being genetically defective, and have that be more than enough.
I want you to feel the hopelessness of wanting to be me and knowing in your bones that I am hopelessly beyond you.
I want a bioethical argument that starts with a premise that it’s common sense to prefer being genetically defective and rational to kill yourself when you aren’t.
I want a telethon for the people doomed to lives that aren’t like mine.
I want genetic counselors to realize they’ve been unconsciously biased toward being like me.
I want to know, out there, there’s you, this non-disabled person, flipping through NotPeople Magazine, who’s seeing a picture of me chilling in my Bi-Pap mask, and going, “Whoa, I want HER life!”
Seriously. The whole envy package. My whole life. Not just the parking part.
I want to be so much more than enough that I “inspire” fan fiction, cos-play, a hair-cut, and a line of quality bedding at Target.
I want to be the founder of a life-style magazine, Breathless, that I’m on the cover of every month — wind-blown, be-masked, perpetually smiling – until my brand expands into The Less Channel, programming for people who curate their activities of daily living, and for 42 minutes, every day, weekdays, I welcome you into my home and tell you one, two, three of my secrets.