My disability leads to my inability..

[Ambivalid]

@Machine_Elf

Out of curiosity: what was your experience with disabled folks prior to the injury that left you without the use of your legs? Were you, at that time, the kind of person you wish able-bodied people would be now?

Your entire post was very perceptive and on point. I just wanted to respond to this one part. I didn’t really have much of any interactional experience with wheelchair users prior to becoming one myself. I was hurt fairly young, a couple months after turning 20. One thing that is hard for me to admit is that when i was a novice driver at 16/17 I committed some of the very offenses I take such a hard stance against today. My mother, as a clinical social worker, is (and was) authorized to keep a valid handicap parking permit in her vehicle (to be used only when transporting disabled clients). Well i would occasionally drive my mothers car and i would put that permit up and park in handicap parking spots when I’d go to places like the mall.

I was a stupid ignorant kid who had zero clue as to who was being impacted and how they were impacted when i did this. I was young and its a behavior i look back at with regret. But i like to think if i would have ever encountered a person like me today, back then when i was 16, I would have taken his words and pleas to heart and ceased such behavior. I like to think that anyway.

But either way, that early behavior on my part was indeed valuable to me in the sense that once i became a wheelchair user and got older in general, I was able to use those earlier experiences to help inform me that most people do things that can negatively impact my day to day life as a disabled person out of sheer ignorance and thoughtlessness. That’s why i try to stress in any of these discussions that I am warm and receptive to 1) common social courtesy (holding the door for the person behind you) and also 2) people asking if i need assistance with something, even if i personally find it absurd.

My intolerance starts when people behave outside of these social boundaries and reinterpret my words in order to rationalize forcing this assistance on me. Or just flat out ignore my words.
Funnily enough, in all my years of having people do ridiculous things in and around doorways all in the name of helping me out, I’ve never flat out refused to accept it and refused to go thru the doorway. But I have experienced an able-bodied person flat out absolutely refuse to accept my normal social behavior of holding the door for the person behind me. She was demanding to hold the door for me! And she would not relent. It was utterly absurd. She was so uncomfortable accepting a favor from a disabled person she just waited me out. That didnt take long lol. I just shook my head, said “knock yourself out” and turned and went thru the door. But wow.

[SciFiSam]

@SurrenderDorothy

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.

Maybe the difference is that I don’t use a cane - don’t have the grip to hold one. So the visibility of my disability (that’s like the start of a rap) is down to the way I walk and hold my arms. I’m not old, and I’m not overweight, so people completely blanking me is not down to either of those possible factors. But people really do walk straight towards me as if I’m not there.

[dropzone]

So, I was still abled when a jerk pulled his Corvette into a handicapped space and strode purposefully toward a store. I’ve always been a bit of a junior mod so I called after him, “Hey! That’s a handicapped space.”

“Look at the handicapped plates. Do you think only jerks drive Corvettes?” then he went into the store.

“Well yes, actually, and you didn’t change that,” I said to his receding shadow. Soon after the Secretary of State raised the requirements for handicapped and clergy plates because they were being abused by jerks.

[nelliebly]

@VOW

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

Oh, how I WISH this were true in my case! I know hearing loss is difficult to correct and that hearing aids don’t magically enable you to hear the way a pair of glasses can make someone who’s a little nearsighted see 20/20. Still, something like 12 major surgeries including 4 corneal transplants, and still I’m legally blind in one eye and have compromised vision in the other that can’t be corrected with lenses. My peripheral vision is also severely impaired. I’m pretty good at acting like I can see, so my disability is invisible, not me. Today a guy at the grocery store lit into me because I didn’t see him to my side and ran into him. Not the first time. It looks like sheer carelessness on my part.

Sorry. I know this thread is about disabilities making people invisible, not invisible disabilities. I got wistful.

[Cartooniverse]

@Beckdawrek

Misinterpreting the nature of my disease is often the case with me as well. I was in line at a counter and a child asked his Mom what was on my arm. She told him to ask me. I pulled my sleeve up and told him monitored the sugar in my body. I purposely didn’t say ‘blood’. His Mom said to the kid “That’s what you’ll get if you don’t quit eating so much sugar” as she handed him a huge Icee.
I wanted to get on my soap box. But, I didn’t.
When she left the clerk said “That was awful of her” and launched right into a diatribe about an article she read online about how pineapple cures diabetes. I wanted to get on my soap box. But, I didn’t.
I ain’t got the energy or the time to fight all the ignorance, by myself.

Few people do alone. That’s why we have the SDMB !!

When my kids, who are adopted, were babies, I used to get this a lot: " Oh ! Now that you’ve adopted that baby, your wife will get pregnant right away and you can have a baby of your own ! "

If I had a dollar for every time some fuckwit said this to me, I’d be able to afford a baseball bat to use to beat them all to death.

People are morons.

And in terms of micro-interfaces with people with invisible disabilities or disabilities I mis-read or over-react to, mea culpa. Gotta look and listen harder. Thank you to all who are posting in here.

[Cartooniverse]

@SurrenderDorothy

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.

** Snipped by me **

I was on a cane for over a year, after I graduated from a walker and crutches. I’m in New York City. Any large urban setting is full of a few things the 'burbs are not: TONS of people using devices, and public transit/ not much private vehicle use by percentage of population.

I’m an old fat gray white male. People’s visual response to my hobbling onto the subway with crutches, then the cane, was kind of gloriously re-affirming. People of all stripe would pop up, or at least offer me their seat.

Initially there were two kinds of people: Those who would offer me their seat and those who glanced and couldn’t be bothered. The pain I was working with for a long time made me, to be generous to me, mighty fuckin’ short-tempered. And so I judged and was angry when I had to stand, hanging onto the bar.

Then I had occasion to see my first cousin. He’s a year older than I am and has M.S. It was in the summertime and he was pretty tortured by an exacerbation. You glance at him, you see my cousin. You can’t see the writhing burning TIRING pain he endures. He doesn’t use a cane unless he has no choice.

I stopped being pissed at people on the subway. Because who am I to decide that their appearance equals a lack of infirmity?? I just dealt, and was very grateful for seats.

Now? I haven’t touched the cane in a lot of months. Every single time I see someone negotiating subway steps with crutches or a cane, I do what I can - or at least offer. And giving up my seat never felt sweeter. Having read this thread, as I mentioned in my other post, I think now I should always ask before giving up the seat.

Because it’s the person’s place to accept or decline.

As for handicapped plates? We own a car. We drive places. I refused to get them, even Temp Plates. Because there are people who are just so very much in need of LESS steps to the door than I ever was. And if someone climbs out and appears " able-bodied ", what a loaded phrase that is, who am I to say? Maybe their M.S. happens to be at a low boil that morning instead of a volcanic torrent of burning agony and so they can handle the short walk.

[TheCuse]

^^^Same. My doctor said I can get the handicapped tag, but I won’t do it. I figure there’s folks way worse off than I am.

I walk with a cane (due to the beginning of year), and I have artery problems in my legs, so if I walk more than fifty feet, I have to stop and rest them for a few seconds.

[LurkMeister]

@TheCuse

^^^Same. My doctor said I can get the handicapped tag, but I won’t do it. I figure there’s folks way worse off than I am.

I walk with a cane (due to the beginning of year), and I have artery problems in my legs, so if I walk more than fifty feet, I have to stop and rest them for a few seconds.

For the past year or so I’ve been having intermittent problems with anemia causing shortness of breath. When it’s acting up I have difficulty walking any distance, particularly uphill. Since I’m dependent on public transit to get around, and several of the doctors I have to see are not easily accessible, I spoke to my primary doctor about qualifying for the local E-Z-Rider program, which would enable me to get direct transportation. While I was at it, I had him fill out the form for a handicapped tag, because I have a friend who occasionally drives me places. He had no problem with the E-Z-Rider, but said that I should only use the handicapped hanger if I was having a bad day; if I was doing okay, I should walk across the parking lot because I need the exercise. In the past few months, I’ve only used the hanger once.

[Broomstick]

@TheCuse

^^^Same. My doctor said I can get the handicapped tag, but I won’t do it. I figure there’s folks way worse off than I am.

Having a handicap tag gives you an option, you are not required to use it unless you want/need to. My late spouse had one and on good days he’d not use it, but it was a big help on the bad days. I get that there’s a psychological bump in the road to getting one, but if it would be useful to you do consider it. It doesn’t matter that there are folks worse off than you, if you need it or it would be really helpful that’s what it’s there for.

[PlaceboTarget]

@Cartooniverse

If I had a dollar for every time some fuckwit said this to me, I’d be able to afford a baseball bat to use to beat them all to death.

People are morons.

People are morons, but humans are violent creatures.

[Ambivalid]

@Broomstick

Having a handicap tag gives you an option, you are not required to use it unless you want/need to. My late spouse had one and on good days he’d not use it, but it was a big help on the bad days. I get that there’s a psychological bump in the road to getting one, but if it would be useful to you do consider it. It doesn’t matter that there are folks worse off than you, if you need it or it would be really helpful that’s what it’s there for.

I know more than a handful of active male paras of my age who absolutely refuse to park in handicap parking. Because the “old people” need those spots and they don’t need to be close to the door.

I find this to be unfortunate. I mean, I can understand where it comes from; they don’t want to be seen as “handicapped” and helpless. We’re healthy young men after all! But in the end it’s only self-defeating. Many of these guys have been boxed in by other cars when parking in regular spots, preventing them from getting back into their cars. As a result, most double-park their cars now to prevent that type of thing. They’d rather illegally double park their cars than use the handicap spots that serve that exact function.

[panache45]

As I’ve said previously, my handicap tag enables me to walk into a store unassisted, then use the shopping cart as a walker. Without the tag I’d have to park farther away, and I’d collapse before reaching the store.

And Cartooniverse: Don’t forget that some of the people sitting in the subway have “invisible” handicaps, and need to sit. They’re not all ass holes for not giving you their seats.

[Broomstick]

@Ambivalid

I find this to be unfortunate. I mean, I can understand where it comes from; they don’t want to be seen as “handicapped” and helpless. We’re healthy young men after all! But in the end it’s only self-defeating.

They need to grok there is a difference between “I am capable and independent despite physical problems” and “I am in deep denial of reality”.

[SciFiSam]

@panache45

As I’ve said previously, my handicap tag enables me to walk into a store unassisted, then use the shopping cart as a walker. Without the tag I’d have to park farther away, and I’d collapse before reaching the store.

And Cartooniverse: Don’t forget that some of the people sitting in the subway have “invisible” handicaps, and need to sit. They’re not all ass holes for not giving you their seats.

TFL (Transport for London) launched a “please give me a seat” badge a little while ago. I still don’t often get given a seat, partly because when the train’s crowded I can’t get close enough to the seats for anyone to offer, but when I go get a seat the badge informs people that I’m not sitting in a priority seat for no good reason.

People offering out loud does help, particularly if they’re in a middle seat, which I can’t use - I’d fall over getting there and trying to get out in the twenty seconds or so a tube stops at a station - so if they offer out loud then I can explain that I need a seat by the entrance, and then someone there usually does offer their seat. So that’s another reason to vocalise your offer of help. There are usually four seats within reach and it’s unlikely all four of them are occupied by people with invisible disabilities who will suffer from giving up their seat.

Ambivalid, that’s just silly, of your friends, I mean. They might be healthy young men but the wheelchair needs the space (as you know). Daft.

[TheCuse]

@Broomstick

Having a handicap tag gives you an option, you are not required to use it unless you want/need to. My late spouse had one and on good days he’d not use it, but it was a big help on the bad days. I get that there’s a psychological bump in the road to getting one, but if it would be useful to you do consider it. It doesn’t matter that there are folks worse off than you, if you need it or it would be really helpful that’s what it’s there for.

That’s good advice. I guess I just would feel funny about it.

[Broomstick]

Think of it as an emergency backup.

If you qualify for one you can get it and simply not use it. Just keep it on hand. You are not obligated to use it, it just gives you another option. If you never find yourself needing it then wonderful. But if one day you DO need you have it as a backup.

[TheCuse]

^^If things don’t get better, I may do that. Especially with winter coming up. We get a lot of snow to trudge through up here.

Thank you

[SurrenderDorothy]

@Cartooniverse

The pain I was working with for a long time made me, to be generous to me, mighty fuckin’ short-tempered. And so I judged and was angry when I had to stand, hanging onto the bar.

I have this tendency. I fear I’ve let Evil Dorothy out of her cage too much lately.

I don’t want to be that unapproachable person who is just waiting for someone to say or do the wrong thing and twists kindnesses into something cynical. I WANT to be someone who is still compassionate and understanding because shit, Lord knows I don’t have much else going for me lately.

Everything is difficult and frustrating and painful, but it’s not an excuse for me to take it out on other people, even in my own head. And I’m not good with people and when I feel like I can’t face another day, I want to isolate myself and hide and sometimes it’s easier to think “I can’t deal with people because they don’t understand” instead of “I can’t deal with people for a variety of reasons that are all 100% my problem.” And when I’m sick to death of nothing feeling normal or right, ever… it’s not because people want to talk about it too much. It’s because things are not normal or right and that’s just as true right now, alone at home, as it is anywhere else.

Anyway, basically, I’m a crab and I’m sorry.

[Ambivalid]

@Broomstick

Think of it as an emergency backup.

If you qualify for one you can get it and simply not use it. Just keep it on hand. You are not obligated to use it, it just gives you another option. If you never find yourself needing it then wonderful. But if one day you DO need you have it as a backup.

Yea, better to have it and not need it than to need it and not have it.

[dropzone]

@Ambivalid

Inability to be seen. Inability to be heard. Inability to be understood.

They look at me and see a wheelchair.

They listen to me and they hear a failure to adjust.

They empathize with me and they feel pity.

In my case the chair simply leaves me invisible. I’m below their line of vision so I’m not there. Thanks for starting this thread. Before I liked being invisible. Now it annoys me.