Substance

I watched the bizarre movie The Substance yesterday. Although I can say I absolutely hated the ending, I did like the political commentaries that it brough to light. 

The beautiful Demi Moore and very young Sarah Margaret Qualley in The Substance.

The invisibility of women as we age (a good thing in my opinion.) The pressure on women to keep looking as young as possible. The self hatred that our beauty based culture can inflict on women. The disgusting men everywhere, seemingly endless amounts of them, who objectify women. "Beautiful girls smile" leers one man to a young girl, trying to get her to smile. An experience I had in my youth more than once.

A powerful scene where Demi Moore wipes away the makeup she just spackled on.

I enjoyed how powerful and decisive the main character became as she aged. No spoilers here, but the movie dug through the old myth of the maiden, the mother and the crone in a unique way. 

As a crone myself I found that very empowering. To own your "crone-ness" and to hell with everything and everyone else. Men don't like us because we now know all their tricks. How vapid and lurid most of them are. Not all men of course, but that's the general vibe honestly. And when a man's partner turns into a crone I think he becomes a bit fearful. Not a bad thing. Keeps him on his toes.

Disability is another challenge that makes one invisible. Although those who do see us are shockingly helpful and friendly. I realized the other day as I used my wheelchair how much people try and go out of their way to be friendly to me. Not when I use my rollator strangely enough. Then maybe I'm just an "old woman" instead of a "disabled woman?" It feels strange to transition between these worlds at will. 

I'll be honest. I do miss my grey hair. I feel ready to embrace my crone-ness and start kicking some butt. 

You Look So Pretty!

Second only to "you look so healthy" those four words also can be a bit loaded. I mean when was the last time you told a woman "You're so smart! You're so organized! I really admire you!" Not to say that we don't also compliment others outside of beauty, but come on. We all know "You look so great!" Commenting on someone's superficial appearance is the cultural go to. Even for children "You're so cute". Which is really terrible.

I had a conversation with my mother the other day about beauty standards and ableism. I feel like every way in which a person deviates from the cultural standard of "normal" you will encounter push back. This push back can come in the way of prejudice, discrimination and the world just not being made for you.

No makeup, kid clips, not fighting aging.
I think I'm still pretty.

Typical "deviations" from our current culture that will cause pushback are:

• Skin Color
• Body Size
• Signs of normal aging (wrinkles, sagging, silver hair...)
• Obvious signs of disability (wheelchair, walker, synthetic limb, deformation, oxy tank...)
• Height
• Socioeconomic status (how wealthy you are... or aren't)
• Body hair (on women)
• Body odor (on women)
• Dressing "outside the norm"
• Body modifications (face piercings, ear gaging, etc...)

And as if this exclusionary, impulsive reaction wasn't bad enough another thing I've noticed is that the more of this box's you tick, the more violent and immediate someone's reaction can be. One need look no further than the violence perpetrated against trans women of color to see that's a fact. Being tall, a person of color and transgender can easily get you killed.

So what does that mean to me, a queen size disabled person over 20? I shared with my family that I've noticed a huge difference in how people react to me and treat me depending on what mobility device I'm using, the color of my hair (natural vs colored), the clothes I'm wearing, the purse I use and if I've chosen to wear makeup that day.

Growing my hair color out.

AGAIN...

The most poorly I'm treated is with natural hair, casual clothes, no Coach bag and using a store electric cart. I honestly like to keep my cane in a store electric cart with me as an obvious signal to my disability. Being a big person there are way too many "people of Wall Mart" memes out there for my comfort. I noticed that people will not get out of my way (block me in on purpose), ignore me, not offer to help me with anything and in general tend to just look away.

Helooooo. Get the hell out of my wayyyy!!!

The best I'm treated is in full makeup, hair colored, dressed up, expensive purse and either walking on my own (something I only do in my own house these days) or using Dory, my "mega wheelchair." I believe that is because it screams "I have a legit disability!!!" Dory for sure gets me treated even better than my travel wheelchair Ariel. I'm guessing because of the size and gadgets it just "looks more disabled".

Vroooom!
Me and Dory taking off from my Mom's house.

So what would happen if I have blue hair, piercings all over, riding in a scooter, wearing rainbow yoga pants and an obscure 80's band t-shirt carrying a unicorn backpack on my back? If you add to that it is a person of color and a very large person I'm sure she'd end up a meme on someone's Instagram account, or be filmed against her will and uploaded to YouTube with some horrible comments being made. That's my guess. Because this person is too far outside of what our culture deems "normal" and they deserve to be punished for it.

Even with knowing all this to be true I still choose to push the boundaries on normalized culture. I feel it's the only way to create change for the good. For there to be love instead of hatred and prejudice. Because I am a social justice warrior and a feminist and that will never change no matter how severe my disability becomes. 

With not being able to work right now. Not being able to help people the way that I used to. Living with this core value of loving people and fighting against stigma in even the smallest way still gives me a strong sense of purpose. Something everyone needs in life.

You look so healthy!!!

Use Those Tools!

I wear glasses so that I can see clearly. I use a fork so I don't get food all over my hands. I use a car so I can go long distances easily. I use a helmet to protect my brain when I ride my bike. So then why is it so hard to use a mobility device?

Me & "Meg" shopping in style

I'll tell you why. STIGMA.

I tell myself that I don't care what other people think. And that's true. But there's still a small part of me that whispers "You've given up" every time I use a mobility aide. "You should be trying harder. You don't NEED this. You can do it without it. You're being lazy." These are all things a hideous little voice mutters in my head when I grab Meg, or a scooter cart. 

I'm not really sure where it came from. I'm thinking it could be the "voice of my culture." That what I'm really hearing are my projected potential thoughts of other people who see me using these devices. Add to that the fact that I'm a larger woman and I could even hear "It's because she's fat." Isn't that awful? I don't want to listen to those voices.

Here's what I want:

• To keep active and do as much as I can.
• To be a role model for others with illnesses to use the tools available to them.
• To break stereotypes and challenge the norms (like walkers are for old people.)
• To build my strength by walking as much as I can, even with my tools. (Rather than staying home and being sedentary.)

I could just stay home, feel sorry for myself and not go out at all. Or I could try to not use my tools, do a lot less and make myself feel worse in the process. There's always options. I chose to modify how much I do and how I do it to keep on being as active as possible.

I noticed an interesting added benefit. My condition isn't invisible when I'm out with Meg. She's a big shining beacon that says "HEY! There's something up with this beautiful woman and she needs a little help getting around!" 

People are nicer to me. They don't sigh loudly behind me if I'm going slow. They don't clear their throat as I'm trying to open a door. They get the door for me. They tell me to "have a nice day" and compliment my scarf. 

I was prepared for people to ask nosy questions, or to be really judgy and rude to me when I use Meg. But instead the opposite has been happening. That was a real surprise to me. People have patience and understanding around me that they never had when I didn't use mobility devices. We respond to what we can see. Makes sense, right?

I'm sure over time those annoying negative messages in my head will go away. I know it stems from my own fears of judgement that (so far) are completely unwarranted. It also comes from not being super trusting of other people. Another challenge that I'm working on.

I also learned another cool thing about using Meg. When I sit in her and wrap my arm around my husband's waist, my head hits him at a perfect, snuggly, cozy spot. It was a lovely surprising discovery. I'm sure there's more where that came from.