Disability Pride Month

Ok, so let me get this straight. I'm supposed to have pride in the fact that the built environment is the major contributor to my disability. Yes, it's not my muscular dystrophy--that is just the thing that slows me down.

Yes, it's marked that it's not an ADA ramp but that's not helpful

Because there was no clear direction about how to follow the Disabled Access.

I want to talk about some Stella Young quotes. Don't know who she is? She did an amazing TED talk on "inspiration porn".

"That quote, the only disability in life is a bad attitude - the reason that's bullshit is because it's just not true...No amount of smiling at a flight of stairs has ever made it turn into a ramp. Smiling at a television screen isn't going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into braille."

Look, I was taught to be nice. If I wasn't, my mom would sometimes say, "You might need an attitude adjustment", which was done with either a wooden spoon or a belt. Well, I'm over 55 now and it's my attitude and it can be whatever it wants to be moment by moment.

If she were still with us, my very proper Bostonian grandmother would be appalled at my next statements. I am so effing TIRED of making people feel ok about not having their accessibility that is even remotely inclusive. I am so effing TIRED of having to call every hotel, every attraction, and every restaurant because their website doesn't provide enough information for me to be able to tell if I can get in and enjoy the same things as everyone else. I am so effing TIRED of having my insurance changed--without my say-so--because someone decided I make too much money some months but not others.

"I want to live in a world where we don't have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning."

PLEASE stop saying "It's nice to see you out and about." Please. I get out of bed just like you--ok, I don't because you probably don't rely on a ceiling-track hoist, and adjustable bed, and your partner to make that happen. You have no idea how hard it was to get out of bed, do my morning routine, get clothes put onto me, and get back onto my wheelchair to wander out to the kitchen for coffee. What took you 3 minutes took me 30. I know it's nice to see me. It's nice to see you too.

I am an international award-winning photographer. I know that maybe surprising, but I photograph from my lap. (Don't get too caught up in the idea of what you think a photographer looks like.)

I have had my work selected for shows in Athens (Greece), Barcelona (Spain), Bristol (UK), Budapest (Hungary), Rome (Italy), and in various galleries in the United States. Unless they've looked me up, they probably have no idea about my disability--nor should they. My work stands on its own.

In August 2024, my husband and I traveled to Budapest to see my work in a gallery. It was the 4th show in a row that they'd selected my work, so we thought it we should see it in person.

The curator, was appalled when I showed up at the door, because she already knew what I was just finding out--there were stairs.

Anita (L) and Heather (R) outside the PH21 gallery in Budapest, Hungary.

Anita (L) and Heather (R) inside the PH21 gallery in Budapest, Hungary.

-- to be continued