Expectations

I feel strongly that expectations are the tool of the devil. And yet I fall prey to them constantly. My husband and I just went away for a seven day vacation to Oahu Hawaii. And yes, I had expectations. 

I got tired, but still wanted to be in the ocean. Our hotel had free floaties for use, so I grabbed one. Just like the shark in my tattoo. Good choice.

I (foolishly) expected I could make it through two major airports with just my rollator and leg brace. I expected to be able to walk through a large museum with just my rollator. I expected to be able to do a 1/2 mile walk, swim in a waterfall and then walk back the 1/2 mile.

One of the few nights I wore makeup.

Where did these expectations come from? I believe it's from my own internalized ableism. Seeing medical equipment as "lazy" or "not pushing myself." I mean, I can walk, right? Well, that's a loaded question. I can walk, just not as far as I thought.

Too tired for makeup. Enjoying a delicious "mocktail."

I also learned that staying in a hotel is very different then staying at an Air B&B. There's the walk down the hall to the elevator, out the elevator to the breakfast buffet, back down the hall to the elevator, down another hall, to your room. That's a TON of walking and we haven't even really started our day yet. It took a toll on me fast.

I WAS good about letting myself rest as much as I needed.

This was my takeaway:

• Always stay in an ADA room if staying in a hotel. I need a shower stool.
• Always bring my travel electric wheelchair on vacation. I never know how far I may need to walk or how long I'll be standing.
• Energy conservation and naps are my friends.
• Expect I'll get "travelers stomach" and start on the daily pepto right away.
• An Air B&B has it's advantages. Like a short walk to the car and laundry facilities.
• Be kind to myself. Don't compare myself to others or even to what I used to do. 
• Be able to pivot to a DME anytime I need it. Don't try and "push through."

Welcome to my world!

I was explaining to my husband this morning that as a person with a chronic illness I feel like the whole entire world now gets to experience my life every single day.

Can't go to your office to do a job you love?
Check
Worry about falling ill and dying constantly?
Check
Can't leave your house and do what you want when you want? 
Check
Social isolation? 
Check
Limited mobility? Can't ride the subway, train or hop a bus? 
Check 

Yup. That's my reality.

We belong to a fun local social group and I'm able to participate minimally due to my health and mobility needs. Now everyone is in the same boat so they're thinking outside the box and doing things like Zoom meetups. Because when healthy, able bodied people become affected by something, that's when the problem solving and alternative solutions come out.

Work from home everyone!
Stay safe and take care of your own needs.
Take plenty of time off when you're sick or your family is ill.
Financial compensation for your loss of income.

Where are all these solutions for the disabled population?
I'm talking globally here, not just in my town, state or Country. 

I hope when the Coronavirus crisis is over some of these changes remain in place for the percentage of the population who could use the accommodations daily. And also that now healthy, able bodied people come away with just a bit more insight and empathy about what it's like to live every day of your life this way.

Why it's easier to just stay home

My husband and I went out to see friends last night. They're good friends, but friends we have a hobby in common with and see about once a month if we can. I had tried to save up my spoons and had a good nap. I dressed up nice and we took Pablo out with Dory so I felt all spooned and tooled up. 

Then a friend said something really stupid that just knocked the wind right out of me. My husband/ally was behind me talking so he didn't hear and couldn't step in. Drat! I was left hanging in the wind. The conversation went like this.

Friend: "Are you working now?"

Me: "No. I'm on disability".

Friend: "Oh, so you're home?"

Me: "Yup!"

Friend: "Can't you even work from home?"

Me: ... (wind knocked out)

Me: "Noooo... I'm disabled. I'm on disability. I'm home not working because I can't work."

... "silence"

Me: "So how are YOU doing?"

That's my technique. Whenever someone puts their foot in their mouth I just turn the conversation away from me completely and onto them.

During that same evening I also had a very drunk friend hang ALL over my chair and myself, smudge my glasses, gave many many hugs in which I was careful to turn my chair off so as to not run over anyone... in short it was nice to see my friends but it was a LOT of spoons.

I seriously understand why people just stay home. 

My sweet friends want to bring a lunch over soon and come over to my house. I promise myself not to clean or feel bad about my house not being "up to snuff" comparing it to how it used to be. I also will not let my husband run around cleaning and buying food to entertain them. We'll see if that's better. 

I know people don't mean to say hurtful things. And it does come from strangers too. All the time really. But that's what I mean when I say often times it's just easier to stay home. 

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.