Saturday, September 16, 2017

Playing Life on the Hard Setting

I just finished reading a lovely article on UU Worship Web. It's here: and I highly recommend it. It gets it mostly right, and that is rare.

I'm going to let you in on a secret. I have a disability or two.

That sentence, of course, is normally the point where I find out exactly how ableist the people around me are.

"You're not really; I mean, it's not like you're in a wheelchair."
"No one would ever know if you didn't tell them."
"Don't say anything and no one will find out."

Why would I care if someone knew that my body operated under a different owner's manual? I admit I am playing life on the hard setting, but my body is no less important and good than anyone else's (and no more important or good either).

I don't care if anyone knows the handicap I am playing under. I just want to play the game.

Of course, my life game is more challenging than others at times, because I live in a world optimized for an able-bodied experience.

I am hearing impaired. My husband is deaf. I have 40% of my hearing; he has about 15%.
I have Lupus Anticoagulant Syndrome. This means that sometimes I get tired. I have Hashimoto's encephalopathy, and no thyroid or parathyroids. This means that sometimes my legs don't work so well and sometimes neither does my heart. Sometimes I overheat, and sometimes I cannot get warm. My vocal chords have been damaged by the surgeries, so sometimes breathing can be tough, and sometimes sounds don't come out just right. Sometimes my medications make me very ill. Sometimes I have to go to the bathroom over and over again. Sometimes I can't go.

My husband has had a hip replacement, and he has scoliosis and asthma.

My medications fill a wheeled suitcase. The mobility scooter fills the back of the SUV. The nebulizer fits in there somewhere.


What does it mean to be disabled in an ableist world? What does it mean to be starting the game with fewer lives and a lot more things ready to attack you?

It means people get it wrong, even when you are surrounded by people desperately trying to get it right.

It means eating at the same place for lunch every single day, while attending an anti-oppressive, anti-racist, multicultural seminary, because my disability does not allow me to reach anywhere else in the time allotted, and there is no reasonable way to order food delivered to the ultra-secure building.

It means not being able to hear opening worship at a conference, despite requesting adaptive equipment a month in advance, because it wasn't a priority and the organizers forgot it.

It means registering for Ministry Days at the General Assembly of my faith, and finding out that the hearing adaptive equipment we'd reserved was a quarter of a mile away, on another floor. Another year it meant getting to the Opening Reception and finding out that the registration we needed to do first was a quarter of a mile away. When we got there, it was up a staircase where the mobility scooter could not go. There were elevators, of course, but they were all the way back by the reception. You see, no one thought enough about people with hearing and mobility disabilities being included to make sure that this didn't happen.

Disability means having seminary welcoming rituals on a sandy beach, in "easy walking distance" from the parking lot and standing for over an hour and not feeling very welcome at all as you fight to keep from falling down or sitting down on wet cold ground with legs that don't stand so well. It means listening as new classmates offer soft sentences about their hopes, which you cannot hear because using a microphone would spoil the naturalness of the event.

Disability means fighting to hear the retreat speaker who refuses to use a microphone because the room isn't that big, and knowing that you have paid $375 to watch his mouth silently move.

It means having my expensive hearing aids become ear plugs in a huge echoing room with a booming sound system, because no one thought that not having a T-Coil loop was a dealbreaker.

Disability is trying to open a bathroom door from your mobility scooter, only to find out that the impressive potted plant beside the door blocks the only possible angle that would allow you easy maneuvering and so you have to wait and ask someone else to hold it for you please. It's finally getting inside and realizing that there is one handicapped stall and while you can fit inside, you can also either transfer to the toilet safely or choose to close the door. Disability is wetting your pants because the one handicapped stall is filled by three teenage girls trying on their new t shirts and giggling.

Disability is realizing that the only door in a huge Convention Center which allows a mobility scooter to exit without assistance is at one end of a mile long building. Disability is thinking about fire over and over again.

Disability is spending months and hundreds of hours helping to organize a conference as a volunteer and finding out at the last minute that they will not pay for a private room, even though you have to bring thousands of dollars worth of drugs, some with needles and some difficult to obtain, and some with catastrophic side effects and all of them essential which means that if a roommate is careless, if a roommate spills or steals or leaves a door open accidentally, you could die in the space between the insurance company and the time it takes to replace what you had. Disability is being told that it isn't fair that you need such a thing and that you will have to pay for the other half of the room you need because the group isn't going to treat you specially. Disability is being told that everyone gets half a room and why should you be any different. Disability is being asked to pay $372 for the privilege of volunteering.

Disability is an ongoing part of my life.

Years ago, Kurt Vonnegut wrote a short story called Harrison Bergeron. Find it and read it if you haven't already.

It's about a dystopian world where everyone is equal, and no one can do something better than the person who does that thing the worst.

Graceful people are weighted down. Brilliant people have their thinking disrupted. Clear sighted people are fitted with distorting lenses.

You get the idea.

The world of Harrison Bergeron is a nightmare.

It's not any world I would want to live in.

Fighting ableism isn't about stopping people from doing everything their bodies can do. It isn't about holding people back so that they aren't doing more than me.

You can say deaf. You can ask me if I heard something.

You can't use the phrase "fell on deaf ears" without sounding like you think not hearing is a choice, or that deaf people just aren't paying attention.

You can walk and run and kickbox, and you can talk about these things.

You can't can't use the inability to do them as a metaphor for not WANTING to move, or not choosing to see, or any other thing which implies that the conditions some bodies have can stand in as short hand for "like us normal people only worse"

I am playing life on the hard setting because life is optimized for the able-bodied. I'm not asking for the able-bodied to be given a handicap. I'm demanding to be given a game controller that allows me to play with everyone else.

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