On empathy.: seanan

On empathy.

To the woman who made nasty comments about my "turning radius" when I had to move my electric scooter in front of Big Thunder Mountain; to the person who let their children sit on the ground with their hands pressed against my wheels, and scowled when I said this wasn't safe; to the people who stood on curb cuts and glared when asked, politely, if they would let me pass; to the man who snickered and murmured about lazy bitches when I drove by at Typhoon Lagoon; to everyone who sighed and rolled their eyes when a bus had to be lowered to load me on:

I do not wish you my experience. I do not wish you injury or handicap, however temporary. I do not wish you pain. I do not wish you the soul-bruising frustration of being limited by a body that refuses to listen to your commands, or the salt in the wound that is knowing you did nothing to deserve this: that you didn't injure yourself running a marathon or rock-climbing, but instead fell prey to something that can strike anyone, at any time, for any reason. I do not wish you years spent sedentary, watching your friends rush by able-bodied and healthy, and struggling not to resent them for it.

Instead, I wish you empathy.

I wish for a future where you can look at someone using an assistance device, whether it be a cane, a wheelchair, or a motorized scooter, and think "isn't it wonderful how we live in a world where this person can have the same experiences I do."

I wish for a time where you can see someone using a motorized scooter to enjoy something as large as Disney World and think "isn't that person kind, to spare their friends and family the effort of pushing a manual wheelchair around this huge place, just so that they don't have to experience the nerve-racking stress of navigating something so large and potentially dangerous through a crowd."

I wish for a society where you can listen to simple, necessary requests and hear, not an inconvenience, but a leveling out of a certain small imbalance in the world.

I wish for a place where you can see a wheelchair user sitting to watch a parade and not think "great, let's stand in front of them, that's open space," but instead "isn't it lovely how we can all get a good view."

I am not asking for special privileges. I am not asking to go to the head of the line just because my left foot doesn't work sometimes.

All I am asking is to be allowed, unjudged and unresented, to join the line at all.

Thank you.

jenrose1

May 18 2015, 00:49:09 UTC 2 years ago

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I'm so, so sorry people have treated you that way.

I've been having to use scooters at the store a LOT lately (fecking ehlers danlos) and while I have to occasionally fight the stores to keep their carts in good repair and accessible (Trader Joe's had theirs in the back room for a long time until I persuaded them that it didn't make sense for someone with limited ability to have to walk to the back of the store to get a mobility aid. It took another eight YEARS and a complaint to corporate to get them to a) hang the key near the machine at the front of the store instead of the manager's desk and b) stop boxing the damn thing in with two buck chuck.) for the most part people have been very good about it. i haven't had someone question my right to park in handicapped except once (where she just asked if I had a hang tag and I pointed at it quizzically and she moved on) and there are trips where I'll ask 20 different strangers to hand me something off a high shelf and they pretty much all do without hesitation.

Still rattling cages (pretty much literally) at many stores which don't allow enough room for an electric or even non-electric cart to go between racks. In Target, I just push them out of the way with the cart anymore because I'm over it. The stores that make more room and make things more accessible get more of my business.

The level of having to interact with random strangers when using an electric cart is way, way over what I would normally want though.

geekhyena

May 18 2015, 01:45:35 UTC 2 years ago

That's one reason my roomie and I often errand together (she has EDS, too) - safety in numbers. The local stores suck in regards to mobility carts. Often they forget to charge them. I haven't ever seen any at Trader Joe's or Whole Foods, either. The worst is public transit, though, especially on days when she's using arm crutches - lots of glares or "you're too young to be disabled!" or people outright ignoring she exists. I have a messed up back and knees due to heredity and sports injuries and if I had a nickel for every time I've gotten a "use the stairs!" or "why can't you stand on the bus/train?" comment.... *heavy sigh* Why can't people just mind their own business?

May 18 2015, 04:04:06 UTC 2 years ago

I saw someone using the cart in TJ's or I never would have known they had one back when I first started needing them. It took pointing out to them that it was a bad place to store it and finally flat out refusing to go to the back and bothering a cashier every time for them to move it forward. The last straw for me was coming in to find it parked at the front of the store, plugged in, but so tightly corralled by wine cases that it was impossible for size 4x me to even think about getting it, and the thin employee who helped me (after I stood there on a broken ankle in a walking boot for five minutes) had trouble. That prompted the letter to corporate and they literally fixed everything less than 24 hours later.

We don't have whole foods, but we do have a LOT of health food stores. One is too small for an electric cart and I just don't shop there.
One is brand new and their cart is a lemon and it has literally been out of service 70% of the times I've been there in the 3 months. I complain each and every time I'm in there and they have have it serviced like 10 times since they opened this year. It's a small, well organized store, so I will sometimes shop there anyway or I will sit in their cafe and have an employee pick up my list.
One is trader joes.
Market of choice is usually good with their carts but they only have one per store and in one store the seat is incredibly uncomfortable. They may be willing to get a special cart one of these days that allows for older children with disabilities to sit in a cart while parent or caregiver shops.
Fred Meyer is amazing, They have like 8 carts per store plus in-store free childcare while you shop.

May 18 2015, 05:02:19 UTC 2 years ago

I'll have to see if ours has ones, then. It'd help when my roomie has bad joint days. Wish WF did though - they have a student discount, so it's sometimes cheaper than TJ's because of that, plus it's got more allergy-safe products (we're a soyfree/cornfree household). I don't think there are any Fred Meyers around here, but I went to one in Seattle - it was nice! (I'm sort of a bit inland of the Bay Area, and in-town shopping options are kinda limited)

Now if they could just get BART to put their elevators somewhere you don't have to walk ages to get to - kinda defeats the purpose, but half the time the escalators aren't working and even if they are, they shut them down after evening rush hour. San Francisco is extremely mobility-unfriendly. There's a comic shop I like I can't go to anymore because the hill it's on is too steep and it's too far to walk from the train station but not far enough an Uber feels worth it.

Deleted comment

May 18 2015, 06:40:44 UTC 2 years ago

Yeah, I've gained ~15lbs since last year as a result of joint issues (screwed up my knee tendons up overdoing it hiking and then my back started to give out because I was so eager to get back to exercise I overdid it and the family predisposition towards back issues hit me right on schedule). It's hard to lose weight when you're really limited what you can do in terms of exercise, and yet people think you're taking the elevator because you're fat (as I got catcalled at last week) and not because your knees literally can't handle it after 25 years of getting banged around too hard and finally saying NOPE.

Believe me, a lot of us would love to be more active, but our bodies won't let us. I am literally prohibited from non-PT prescribed exercises right now because they don't want my current issues to get worse, and it's driving me stir crazy because I miss dancing. *jedi high-fives you in solidarity*

May 18 2015, 21:37:12 UTC 2 years ago

I used to do competitive swimming/training 10-15 hours per week, plus walking a lot, plus bike riding. One of my jobs involved 3+ miles of walking per day plus a lot of manual labor. I've had times in my life where I was working hard for 14 hours per day doing hard manual labor.

Guess what? I'm not fat because I'm lazy.

I eat mostly organic. I don't eat refined flour products for the most part, rarely have refined sugar, NEVER have gross processed fats, I haven't ordered food at McDonalds in 15 years and literally do not get fast food ever. I'm not fat because I'm eating "typical American diet".

I've had times when I was eating 1200 calories per day and gaining weight, and times when I was eating 3000 calories per day and not gaining weight. My weight has a lot more to do with what my metabolism is doing at a given moment than it does to do with almost anything else.

The weight hurts. It's difficult to manage and makes things harder. But it is caused by the lifelong genetic issues, not the other way around.

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