the mask is still uncomfortable and, joined with the fact my mobility prevents me from doing much, it has resulted in me simply leaving my body for most days.

there is ways i could do things, but i do not get nearly enough support to do so. oh well.

my progress with the work-school program has been halted entirely until i am being taken care of better, and that won't be happening any time soon.

i do not like showing my face at all anymore because i can tell the first thing that's noted is the ventilator mask i am still stupidly ashamed of. i could not even tell you the reason i am.

i am not sure what to do anymore. i want to connect with other vent users, but i also want to hide it away so i can at least be free of it online.

Something nobody ever warns you about ventilator is how when it's even mildly chilly out, your breath will condense and make your mask all watery and it bubbles. Very annoying. I have to clean it all out after I'm done working outside in the winter and early spring or it'll drive me insane.

Between the ages of 9 and 13, I lived next door to a young girl named Anna. Anna had a 2 year old cousin, Ashley, who was a vent dependent high level quadriplegic due to a horrific accident where she fell off the back of a couch and got wedged between the couch and the wall. (Abuse by her father was suspected; they think he pushed her, I don’t remember if that was true or not.) Her injury was very similar to Christopher Reeve’s.

At first I was fascinated by Ashley’s wheelchair and ventilator tube because I had never known somebody could be paralyzed like that and need help just to breathe. Ashley’s nurse was very kind about answering my questions.

If Anna wasn’t home, I would play with Ashley. I sang silly songs, made faces at her (she made them back), I made her stuffed animals “dance” and “kiss” her face (she loved that) and I would read to her while showing her pictures from the books by her bed. Sometimes I “helped” her color by holding her little fist around a crayon and guiding her hand over a coloring book. I actually discovered she could keep her fingers closed if I wrapped them around the crayon, but it was a very loose grip and her hands never improved beyond that. I let Ashley pick the colors-- she raised her eyebrows and smiled real big for “yes” and pouted her bottom lip out for “no” and that’s how she told me which crayons she wanted.

Playing with Ashley got to be normal to me. I understood that she was disabled, but she was also a two year old girl just like any other and the only difference was she couldn’t move or breathe on her own. I noticed that other kids didn’t go over to interact with her if she was brought outside in her wheelchair. The adults with her would entertain her instead.

One day, I was playing peekaboo with Ashley when my dad came outside. He got really mad at me! I didn’t know what I did wrong when he demanded I go in the house.

He proceeded to tell me “You shouldn’t play with a crippled child like that. What if something happens to her? You’ll get blamed!”

I don’t remember what I said in protest, but I know I said “Dad, she’s a kid like anybody else!”

He said, “NO, she’s not. She’s different. She’s broken and hurt. Feel sorry for her, and don’t play with her anymore.”

I cried in my room for a long while. Then I went back out to see if Anna was home. She wasn’t, but Ashley was inside in bed. I played with her till Anna came home, then we went out into her back yard and swung on the swings.

The next day, my dad caught me playing with Ashley again. I was putting flowers in her hair (careful that they didn’t have loose petals that could fall on her trach or the vent tubes). He was SO MAD that he grounded me from going outside for a long time, can’t remember how long.

I questioned why it was “so wrong” to play with another kid. Dad kept insisting that I didn’t “need” to play with a child “like that” who would never have a normal life.

Ashley ended up having to go back into the hospital shortly after that, and I can’t remember what became of her beyond that because I didn’t see her again. All I remember is being devastated that my dad didn’t want me to be friends with a very visibly disabled toddler.

Her name was Ashley, and I never forgot her. I hope she’s still alive. She’ll be in her 20′s by now if she’s still out there somewhere. I think of her from time to time. I’m probably a very vague memory to her...and I hope I’m a good one. I was the kid who played with her when nobody else wanted to. Probably because other kids had parents like my dad who forbade it.

The question is...why? My dad told me he was afraid something bad would happen to Ashley while I was playing with her. I get that he was worried about being sued or something, but I feel like there was more to it than that.

He was “othering” Ashley as ‘unacceptably disabled’ and wanted me to treat her like that, too. I refused. I got in a lot of trouble for refusing. I don’t regret it. I was her friend and I made her smile.

I just watched Rear Window with Christopher Reeve, which was made after his SCI. He turned his disability into something positive by staying visible to the public and continuing to act in movies and TV until he passed away. Either it was a blood clot or an illness, I can’t remember which, but I remember being really upset about it.

Christopher Reeve was an IRL quadriplegic on a ventilator. He’s got a genuine “vent voice” where the volume of his voice rises and falls with the ventilator’s airflow as he speaks. He’s using his actual wheelchair with a sip n puff control system. The spasms are real and the computer tech he used is real, albeit dated since the movie was made in the late 90′s. His performance as an IRL quad on a vent gives the movie an authenticity you can’t get with an able-bodied actor playing a disabled character. 

The moments where his ventilator messes up-- one of those being the climax of the film-- literally scared me even though I know Mr. Reeve was perfectly safe IRL and could get air if he was really in danger. I’m pretty sure the moments he frog-breathed* were real and that his vent was switched off for those scenes. But the tension created by the one scene is just...damn! 

Btw there’s also a hint of romance between Jason(Christopher Reeve) and Claudia(Darryl Hannah), which is REALLY nice to see with a disabled character played by a disabled actor. Darryl Hannah is autistic IRL although her character doesn’t appear to be in the movie unless you look at it through the lens of “passing”. It’s still a double whammy of disability representation.

Rear Window is an Alfred Hitchcock story, so it’s a thriller that messes with your mind and might be hard on people who have anxiety issues.

HOLLYWOOD, GET YOUR SHIT TOGETHER. HIRE IRL DISABLED ACTORS.

- - - If you search for Rear Window on Youtube, be careful, there is some triggering material. 

TW for: Voyeurism Domestic violence Attempted murder of a disabled person (the bad guy cuts a hole in Jason’s vent tubing in attempt to kill him, which leads to the scary frog-breathing scene.)