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.
I feel ya! My disabilities are invisible. But, I do have them. And they put a big ol’brick wall right in my way. I don’t need pity. I don’t necessarily need help. I need people to get out of my way literally and metaphorically. Freedom is what I want. You don’t ever adjust to this kind of imprisonment.
This would seem to be at the center of it all. Everybody gets sick/injured from time to time, but it’s generally short-term, and we suffer through it, recover, and get on with our lives. OTOH, I think most able-bodied folk are at a loss to comprehend never ever being able to use their legs again. We hear your explanations and frustrations, but it’s really hard to get over our own impact bias; we replace your perfectly sensible explanations with our own errant outlook, thinking how awful it would be if we were to become similarly disabled, and what we would want from others if we were in your situation. To many people, your wheelchair makes you appear as foreign as someone who grew up in an isolated village halfway across the world; we just can’t relate, and it makes us terribly uncomfortable. A few among us are able to find constructive ways to deal with that discomfort, but most of us aren’t so skilled or disciplined. Sorry.
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?
Sadly, this is very common. When I was pushing my ex-wife in a wheelchair, people would direct all questions meant for her, to me. She was pink-haired, tattoo’d, and very in-your-face, yet they still did it. Or if they did speak to her, it was in the tones usually reserved for children, puppies, or the mentally impaired. I’m sure you’re familiar with that.
She always told me the worst part was peoples’ obliviousness to her spatial existence. And that her head was at ass-level.
Now that they’re starting to invent mechanical tails that help with balance, someone should attach that to a tall chair so that disabled people are eye-level with everyone else.
Invisibility and lack of empathy are harder to solve.
And they hold doors open for you, whether or not you want them to. 
Christopher Reeve’s book Still Me has a great section on this phenomenon. After he was paralyzed, some of his caretakers (who should have known better) treated him like a infant. He finally learned to speak up. “I’m a grown man. If you can’t treat me like one, you can leave.”
I read this before I got my own disability. I’ve used that line about a million times.
Whenever I get a visually disabled person in my cashier line, I treat them the same as I treat everybody else. We have two mentally disabled men who put the items back on the shelves, and I treat them like grown ups. They usually come to me when they need help because (direct quote) “She treats us like normal people.”
I’m sorry you’re having a hard time, man. I hope the rest of us can get our shit together sometime soon for you.
My disability is invisible, unless somebody pays a bit of attention and sees the hearing aid in my left ear. “Helpful” folks turn their faces away from me and talk directly into my right ear.
That ear is completely deaf.
If I take a bit of time and explain I need to see a person’s face, the individual usually gets all huffy, like I conjured up my hearing disability as an inconvenience for the world in general.
Then I get talked DOWN TO like I’m an idiot. That really pisses me off, because I’ll match IQs with anybody, and usually have lots of points left over.
I rarely go out in public alone. It’s just easier if I have my own “translator.” My husband has qualified himself for sainthood by being my protector.
But hey. Life’s hard.
~VOW
That sounds really shitty and I’m sorry you have to deal with a crap load of nonsense on a daily basis.
Sorry if something happened to get you particularly down. You’ve long impressed me as someone who is pretty - um - comfortable w/ who he is and the had he was dealt.
May I suggest that some (many?) people are ignorant and/or assholes, and the fact that they are so to you may not be a reflection of your disability.
I’ll also offer that some unimpaired people might be well-intentioned, but - again - ignorant and/or awkward. I can imagine that an impaired person might not feel that they ought to have to educate everyone how to interact w/ them. But it is not always clear how an impaired person wishes others to act. Some want no assistance - others, a lot. I suspect there is a vocal minority of impaired people who either expect special preference in areas NOT related to their impairment, or who harshly criticize well-intentioned, if ignorant, efforts. If you get snapped at a couple of times for holding a door open for someone or asking if they need assistance crossing the street, I can imagine deciding it is better just to avoid interaction in the future.
The folk I KNOW with various disabilities, I have no problem with. But I personally perceive some uncertainty regarding people I DON’T know. Hopefully, most of the time I’ll ask, rather than ignore.
Again, hope things look better for you soon.
, but one impaired person snapping at someone who is honestly trying to be decent to another human being
I’m also sorry you’re having to deal with this crap.
I hope that if I commit any of it, somebody will call me on it. But it must get exhausting to keep having to do so, even when it works; so I’m not surprised if often people don’t.
And they act hurt or even snippy if you say, “No, I got this.” I know what I can and can’t do and I ask for help far less often than I try to refuse it.
I certainly try not to act like that. You certainly get respect on TSD, don’t you.
Hope you’re feeling better OP.
Was there something specific that spurred this thread?
I have not always agreed with you but I’ve always found you interesting and genuine. You have made a positive impression.
Hope all is ok.
mmm
I appreciate everyone’s care and concern. I am doing very well however. I had a bit of uunexpected clarity the other night and was able put into words some truths are just that: truths. Im happier in my life than ive ever been, disability or no. These truths exist outside of my interpretation of them. I’m happy, and my words in that post are just as true today as they were at my lowest point in life.
Well of course it comes from ignorance, I tried to communicate that in my OP. And as far as not knowing how to treat me specifically, hey, that’s understandable. I don’t mind being asked if I need a hand, even if personally i feel such assistance to be absurd. I expect to have my personal boundaries respected, however, and my answer to the question of if i need help should be heeded. It very often is not.
This all matches my experiences.
My disabilities are usually invisible. When I talk about them, which I try not to do, people don’t understand. My conditions get minimized. They think I’m just not trying hard enough, or they think they understand my experiences because they’ve had a headache or got dizzy once.
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.