My disability leads to my inability..

Miscellaneous and Personal Stuff I Must Share
21

I had a “discussion” with someone this week in a parking lot who parked in a disabled spot and went into Starbucks, no handicap permit displayed as required. I was getting lunch next door and watched her get back into her car and proceed to eat lunch still in the spot.

I decided to play shit disturber and take a picture of her car knowing she was watching me. She rolled down her window to ask what I was doing, and I explained I was sending the picture to parking enforcement or did she not realize she was parked in a wide, painted, signed, designated spot? She said she understood where she was parked, she’s not stupid. I pointed out that was obviously not the case, and that as someone who previously used a wheelchair she needed to think about the others.
Many people don’t understand, don’t care and don’t want to think about others. Fortunately most people aren’t assholes.

22

I once had to ask a woman to please stop using the public bathroom’s handicapped stall as a cell hone booth. She came out looking for blood, and saw me standing there with my arm in a sling and an enormous cast. She said “Well, I’ve never seen a handicapped person using this stall.”

The only time I ever complained to a manager about a co-worker was when one told me to try to work faster and when I said “I can’t” she replied “Oh yes you can!” No, I cannot return items to the shelves any faster than I do, and that statement was illegal and very very wrong.

23

I can’t walk very far and have a handicap placard in my car. When I drive to the supermarket, I can make it into the store, then use the shopping cart as a walker. I’ve had someone follow me into the store, yelling that I can apparently walk just fine, and she’s gonna report me for parking in a handicap spot. I invited her to follow me as I walk without my “walker,” so she can pick me up from the floor and carry me around the store.

At least I no longer have to use the store’s motorized scooters. Those created all sorts of problems.

Then there was the doctor who wouldn’t approve my application for a handicap placard, because he didn’t believe in them.

24

That means the stall door was doing its job.

Also, talking on the phone on a public toilet (if you have another option) is gross.

25

The worst thing about my disability, which is very visible when I’m walking, is that it almost literally seems to make me invisible. People walk straight into me all the time. It’s not me walking into them, and it’s really noticeable. At a service station my ex and daughter once decided to take note of how many people walked straight towards me, and how many walked straight towards them, and the difference was huge. It’s really weird, like I create a blind spot in people’s brains.

26

It’s the, “Don’t stare, it’s rude!” idea taken too far.

27

I experience this back when I had to use motorized scooters in stores. I’m still amazed at how many people walked right into me, like I was literally invisible. Then I was the one who said, rather pointedly, “Excuse me,” still being ignored.

28

Probably a form of inattentional blindness. It’s a universal cognitive defect. Same reason why people make left turns right in front of oncoming motorcycles or can’t perceive a [redacted] in a basketball game.

It sucks for people with disabilities… but our brains just aren’t wired to perceive low-frequency events.

29

Let me add a tidbit of info regarding my invisible disability.

Right ear deaf, left ear with hearing aid.

What most people do NOT understand is that a hearing aid doesn’t give you perfect hearing. My hearing loss is of such a magnitude that I currently have the most powerful hearing aid available. And for me, it amplifies sound. It does not make things clearer.

That’s why I need to see your face: the amplified sound plus lip reading will give me enough clues where I can usually figure out what is going on.

If the speaker turns partly away from me, or is chewing gum, or speaks 1000 mph, I’ll be lost. That’s why I rarely go out alone.

You’ll notice me, I’m the one turning to my husband and asking, “What did they say?”

Fun times happen when a rude, impatient jerk will tell me, “Just turn up your hearing aid!”

People think hearing is like vision. If you can’t see, get your eyes examined, and the right pair of glasses will fix you up to 20/20. Hearing aids should do the same!

Uh, no.

Hearing aids amplify. Some fancy, expensive jobs have computer chips that can be programmed extensively to selectively amplify tones in the range of speech. But when you get to a loss of my magnitude, I’m lucky to get straight amplification.

Example: smear soap all over the lenses of a pair of glasses. Then have someone say, “I can help you.” The person puts a light bulb of higher wattage in your lamp.

The light bulb doesn’t clean up your glasses.

That’s what I’m dealing with.

We won’t even discuss telephones. My husband makes all the calls.
~VOW

30

^^^VOW…you and I need to hang out. You can’t hear well and I find it difficult to speak in public. We’d be a riot.

31

We’ll bring either laptops or tablets to the meeting and message each other!:wink:
~VOW

32

My experience is often the opposite- people stare shamelessly at me when I’m out with my cane. It was even worse with the walker, although I didn’t do much going out in public with it. In particular, I get a lot of dirty looks from old people. Like settle down, Norma. It’s not a fashion accessory. It’s not like I knocked down a real old lady to get it. It’s not because I’m lazy. I would give almost anything to go back to being the person who always took the stairs and parked at the far end of the parking lot, but my brain is broken and that’s just the way it is. I do think some of the staring has something to do with the fact that I’m 28 and someone in their 20s walking with a cane stands out more than someone in their 60s.

One thing is, I realize that people don’t always know how to act. They want to be helpful or good, but they don’t know what to say and don’t know what I need or want and so on. And because everyone is an individual, there’s no good guide for this. What one person might find nice, another might find condescending. Something like being told stories about how someone’s co-worker’s sister has MS and she’s mostly fine/wheelchair bound/works full time/lives in a nursing home/died at age 40 is completely no big deal- it’s someone just trying to connect. It’s sweet. But when it’s the 53rd time it’s happening and you just want to buy a coffee and be on your way to work and not have a long weirdly invasive conversation with the gas station clerk about what kind of medical testing you’ve had and then have to act gracious when they tell you they’re praying for you… you know, you still have to be understanding. Because this is their first time and just like the first person, they’re trying to connect and be kind.

But sometimes, it really gets exhausting having to be understanding ALL THE TIME. Like, sometimes, can’t I just be annoyed? I can’t walk from my desk to the bathroom without someone practically leaping out of the ceiling tiles to check out the way I’m walking and go “YOU’RE LOOKING BETTER!” (even when I am very clearly not). What’s wrong with that? Nothing is wrong with that. How could I possibly find fault with that? But at the same time, can I please just live my life for five minutes without being scrutinized? Can I see someone I haven’t seen in a week or more and just have a regular conversation about regular things and, for once, not have to talk about my body and doctors/insurance/PT/etc.?

But of course nobody means anything by it. People ask because they care and it’s better than not caring at all. This is relatively new for me- about 6 months now. I’m still trying to learn to navigate things- find the exact boundaries of what I can and can’t do and find ways around the can’ts. And everything is sort of All Disability All The Time still.

And that’s the thing. I’m conspicuous. I can’t move through the world without people looking at me. But it’s not me they’re interested in- it’s the cane. Nobody has ever once asked me how I’m coping. They want to know if my legs are any stronger or if my test results have been illuminating, but not, you know, if the idea of possibly never being able to go hiking or walk a dog again might be kind of hard to deal with and the fact that I can’t clean my house by myself might be a little bit demoralizing. And when people meet me, it’s not my personality or interests or accomplishments they’re interested in, it’s what’s what’s wrong with me. And even when their impulse or response is to be kind to the cane, me the human kind of gets erased.

33

^^^I hear you.
Very cogent post.

34

It’s interesting when they are put into a position where they are forced NOT to help you.

I have a nerve disorder that makes it near impossible for me to use a pen. Whenever I go to the doctors office or the bank, etc… I always tell them; “I can’t fill the paper work out. I can SIGN it, but I’ll need someone to fill it out.” Usually, people are real understanding and take time out of their day to help me. Which I appreciate.

But then there have been a few times when the person told me I have to be the one to fill out the date, or I have to be the one to fill out my SSN. And when they do, their voice becomes quiet or shaky, they might say something like “It’s just a few numbers… You can do it… It doesn’t have to be legible”

I can tell they REALLY don’t want to be in that position. I always feel kind of bad for doing that to them.

35

Vision isn’t really like that either.

36

I once worked with a young to middle-aged lady who, due to a medical problem, had to lead her life in a wheelchair. She was single, but she owned the little house she lived in together with her bedridden mother whom she had to look after. The young lady had a car especially adjusted to her needs and I was surprised at how fast and nimbly she got on and off the vehicle. Or in and out of her house.

But what really impressed everybody was this lady’s attitude. Her confident and matter-of-fact behavior almost prevented people from feeling any pity for the woman. Plus, she was an exemplary professional and the most hardworking member of her team. She was such a successful salesperson that customers called her on the phone almost round the clock. And she never complained.

I think I started complaining less about misfortunes after meeting this resilient lady.

37

Believe me, vision is a lot easier to correct than hearing.,
~VOW

38

You summarized this really well. I feel this pressure to always be accepting and grateful because people are trying to be nice. It’s none of their business most of the time, and I’d rather not talk about it. I usually just tell people that things are “ok”, rather than explain that my hands are tingling, my ears are ringing so loudly I’m having trouble hearing, and I’m dizzy.

The mourning side of things has been completely ignored by everyone in my life. I will probably never ride a horse again, and that was part of my life since I was a kid. I can’t go hiking with my dog. I can’t take my kids camping like my parents used to take me. There doesn’t seem to be any room for me to process that without being a burden on others.

39

And i bet you anything she would have agreed with my OP. Perhaps worded in a way that better fit her life and experiences but with the same essence and gist. As i said, I’m happier than I’ve been in the 39 years ive been alive. My OP was not about depression or woe. It was about sharing some of the real world difficulties that many, many people who deal with disabilities face, in the most succint and communicable way (at least that was my intent).

40

Wrt to interactions with the ignorant public and the insane social expectations involved, my way of describing it is this: the same negative experience happening to a person, if it happens enough, is going to eventually provoke (at least the instinct for) an outsized reaction from the person. I feel like every single person can understand this phenomenon.

Except, when I’m in the identical situation where I’m being treated as a helpless child that has occurred about 500, 000 times before, I’m the one who is supposed to behave with forethought and accommodation because this person in front of me is having this kind of experience for very likely the first time. And I’m the fucking disabled one here! Haha. People holding doors open is often an example of this. In an attempt to “help the disabled guy”, these people often slow me down and serve as a hindrance, not a help. But im socially required, time after time, to smile and go thru the door, with the obligatory thank you. Because they were intending to help. But fuck! Can’t i just get a time out from this shit? Nope. People dont usually behave that way, yet i must. And i have. But it never becomes an easy habit. Ha.