I am beyond flattered to read that. It means a lot, coming from a person who was already undoubtedly well-acquainted with disability and all its “issues.” 
And, by the way, what is so wrong with being a quad??
(I think you must’ve meant to close with “…not that there’s anything wrong with that!”). 
I’ve read this entire thread and not only is it very interesting, informative, touching, etc… but I feel like it could make a difference to the world at large.
Anywho, I do have one quick question for you and any other para or quad. If you were out drinking with some friends and had a new introduction (friend of friend) ask how you ended up with your condition… privately and after several hours of conversation… would you still consider it rude and completely uncouth? Because after reading your view on this, I now feel horrible as I have done this twice in my life. One of whom I still know and talk to. Somehow I feel like completely ignoring the topic was far more rude.
As has been discussed (was it this thread? or the other one?), the plan is absolutely to continue to employ attendants after (if) I get married. I want to keep the lines between lover and caregiver as unblurred as possible. It would more fair to him and more comfortable for me not to have him do the nitty-gritty for me on a daily basis. As someone else said, it’s one thing to wait on a sick spouse hand and foot for the duration of a nasty stomach bug; it’s another thing entirely to take on the full weight of responsibility of being the primary caregiver for a severely disabled spouse for a lifetime.
As far as specifics, I imagine I would forgo evening carers after marrying. So, my husband would take on my care from 6 or 7pm onward, doing things like helping me eat dinner and getting me ready for bed each night. He’d also likely get used to cathing me whenever we’re out together; quite a few of my friends and family members know how to do this, and it’s not a big deal.
But, my bowel program? Nuh-uh. Like any wife, I’d expect that he would know what was going on, but I wouldn’t want him there for it! :eek:
Haha! You’re not creepy. You’re sweet.
With the first one, the showdown came when we were preparing to graduate from school. He is an architect, and had always wanted to attend grad school for it in Scotland. When we initially discussed this life plan, we toyed with the idea of me joining him in Scotland while he did his program. But as the enormity of the (my) logistics for such a move became apparent, he withdrew. He gradually stopped talking about “our” future and one day before graduation he just told me he didn’t think he could handle “this” anymore. “This,” of course, was my disability. He said that as he looked into the future, he imagined it being one of travel and adventure and spontaneity. But he could now see clearly that that wasn’t going to be what a future with me would be like. He cried and told me it wasn’t fair that I had been paralyzed; he thought I was supposed to have been his wife, in some parallel universe maybe. Anyway, he left for grad school and met a girl there and he’s married now. I think they live in England or France.
The second one really caught me off guard. I’d had a lot of relationships since my first love, but since I never got those crazy-in-love feelings with them, I assumed they were something you only get once in a lifetime. When I met this guy, the friend of a friend, I instantly disliked him. He was a cocky alpha-male, the opposite of what I’m usually attracted to. I’m not entirely sure he didn’t ask me out initially just to prove to himself how B.A. and iconoclastic he was. But he shocked me by turning out to be one of the most decent people I’ve ever known. We started dating in the fall and things got serious pretty quickly. By spring, we were definitely both in love.
And then summer came. He had a bunch of buddies who played volleyball out at the beach every weekend, every summer. He had always been a regular part of this, so naturally he wanted to get out and play when the weather got warm. Initially, I just told him to go do his thing on Saturdays, and we’d hang out after he was done playing. But he pushed for me to join him one weekend, so I did. And it was just awkward for everyone.
His friends were nice, but I got the distinct impression that he hadn’t really filled them in on my little “situation.” It was uncomfortable for me to meet them as a result. So I sat on the sidelines in my beach wheelchair, under an umbrella, with my attendant, while these AB dudes played and laughed (and drank a little). I also got the distinct impression that he was embarrassed about having me there, which made me furious and sad at the same time (after all, I hadn’t begged to come along; he had begged me to come).
I left the beach before they were done playing, saying I had some work to get done. And he came over to my house that night and broke up with me. The atmosphere in which we had started dating was an incubator: surrounded by mutual friends who all knew and loved both of us, hidden away from the judgment or reality of the outside world. He told me that when he tried to integrate me into his “real” life, it was obvious that it was beyond his ability to do so. He said he felt horrible about it, but that he felt like it was the right thing to tell me now, rather than lead me on. He said, FWIW, that the only thing that made him feel this way was my chair; in every other way, I was “amazing, a dream girl.” That was almost exactly a year ago.
Here’s what I learned from them: It’s beyond most guys’ abilities to date me long-term or marry me. It just is. And I can’t really blame them for that. Of course, I wish they would realize that before we fall in love, because it hurts like f*ck each time they realize this after the fact. But if the only other option is closing myself off forever, I’d rather take the pain. [I should note, I’ve had other relationships; quite a few have ended for reasons other than my disability (and I’m not always the dumpee). But it seems that the really good ones are always run off by the chair alone].
For now, perhaps because of this, I’m experimenting with the “devotee” genre of man. I’m still seeing Mr. D, though it’s still much too fresh to be prognosticating. If he breaks up with me over the chair, imma lose my mind. 
Ahaha! I’d rather be in the chair. “Better the devil you know,” you know? But I’d rather be blind than quadriplegic, or deaf than quadriplegic. Just not both.
Now, same question to YOU. :dubious:
Don’t feel bad! I’m sure you were fine. If it went down just as you described, after several hours of great conversation, I’d be totally cool with that.
Also, please remember that I do NOT speak for every chair user out there! If you’re still friends, it sounds like that person was fine with it, too.
I’m now worried I’ve made everyone overthink it. The only real rule is just be a normal, polite, cool person. That’s it!
Excuse me. But when you start listing hardships, and the some of the first things you talk about are medical emergencies happening at “inconvenient times”, meaning you “can’t meet friends for lunch”, I think it’s understandable when others might infer that the impact these medical emergencies have on your social life seems to have undue importance to you. It seemed to me that your rant was (initially) less about the medical emergencies, and more about how it fucks up your plans and inconveniences you. If you want to correct my interpretation of your commentary that’s fine. I stand corrected.
As I said, I don’t want to make it seems like I think you have it easy, but the outrage here is misplaced. All I was trying to do is pay you a complement.
How exactly is that analogous? If you are saying you are physically unable to take a more proactive effort in raising awareness, as one might be when they are undergoing chemo, then you have a valid point. That said, I would wonder why you started this thread. You admirably put yourself out there to dispel ignorance and shine some light you your reality, yet you get angry when I suggest it would be great if you scale it up. While it’s great that thousands of dopers get to benefit from your words, it would be better if millions of others could too. Somehow, that gets morphed into me trying to tell you how to live your life, minimize your struggles, and put you in a box. I honestly apologize if you interpreted it that way, but I think a fair reading of what I actually said would lead most to be a little more generous to my perspective on things.
It’s not your “duty”. However, you repeatedly stated how grateful and lucky you feel to have the resources and support you have. You started a thread that is, in a small way, doing a great deal to raise awareness of issues surrounding your injury that you seem to care about. Yet, after having dipped your toe in those waters, you take umbrage at a suggestion that since you seem to be good at it, and that others seems to be responding positively to this thread, you might want to think about devoting more time to it. Honestly, I don’t get the outrage.
The money aspect was only an issue in my mind because being an advocate with an expensive, and precarious heath condition means that sustenance often takes higher priority. Not having significant financial impediments gives one far more freedom to be (more) selfless.
I already support causes that personally affect me, and/or I care about. More importantly, I am not disabled. Although that doesn’t mean I couldn’t be an effective advocate for disabled, it does make it far more difficult. Furthermore, I don’t become an advocate for the disabled because it’s not something I care about a great deal.
Secondly, I feel perfectly comfortable saying that I think rich people should take on greater social responsibility if for no other reason than they often have more time, education, and resources to do so. Also, because people usually become rich in this country due to the society we’ve created to allow for that. I expect people who have materially benefited a great deal to place a greater emphasis on strengthening society, and giving back. I can understand however how others might disagree with that.
Then why did you mention it if it wasn’t a humblebrag deflection from the issue at hand?
So if you think you would be a bad advocate, have no desire to do it, or don’t feel it’s important to you, just say so. No need to get bitter about a suggestion I made. Secondly, money matters a great deal. Especially for someone in your situation. Quit acting as if it’s some burden because people might unfairly expect more of you than you feel compelled to give. That’s not a real problem, and if you feel so restrained by it and the bad assumptions strangers like me make about your situation, then don’t write about it on the internet, and don’t take the money.
:dubious: The human would be the advocate. That’s why it is a poor analogy. When some guy goes to buy a cat, the relative fortunes of other cats in the world is generally not a concern which compels someone to join an organization that doesn’t even believe in per ownership. Furthermore, animal cruelty is not a byproduct, nor is it logically connected to individual pet ownership. There is no reason for a per owner to connect the two, or feel any compulsion to do something about it. Also, as bad as animal cruelty is, I personally don’t think it’s on par with human suffering.
I see no contradiction at all. When someone has a platform, resources, and knowledge that could be used to help people, not using that those things, IMO, is a shame. In the same way it’s a shame when a smart kid decides not to go to college, or when a drug company stops making vaccines because it’s not profitable enough. I am using the phrase idiomatically. As in, “it’s a shame you can’t come to the party next weekend”. If someone said that to you, would you get angry, and assume that they were saying you should be ashamed that you can’t attend? No, that makes no sense whatsoever. I think I have been perfectly clear on that. At this point, any misunderstanding is your own distortion.
What is the difference between what I have said, and other suggesting you write a book, or that you are awesome? I noticed you accepted all of that commentary with grace and charm. But, when someone says something you interpret as negative, you get all butthurt, and contend that I am trying to act as though I know you, or that I am telling you how you should live you life. I get that maybe I just struck a nerve, but stop pretending this is about me and what I actually said as opposed to some issues you came in here with.
How is that arrogance?
The comment was about your implication that money does not make you life “objectively” better relative to other quads. I don’t see how you can have that opinion given what you have stated here.
Accosted? Really? Talk about hyperbole. What has just happened here would be like if you saw a 7-foot tall accountant while playing pickup basketball, noticed he is very good, then suggested that he try to go pro. Then, he responds by saying how you don’t know him and his circumstances, and that you are trying to minimize his existence as an accountant. I get that it must be annoying to have people continually suggest you do something you have no desire to do, but to interpret it as them trying to control you is illogical.
As an interesting aside, 17% of 7-footers in the US play or played in the NBA. Not all of them are/were particularly desirous to play basketball professionally. They sometimes just recognize that they can best utilize their gifts in that capacity. Obviously, not everyone will come to that same conclusion, but the mere acknowledgement of that reality is not unfair.
That said, I’ve written repeatedly that we can drop the issue seeing as we probably have a fundamental disagreement on the the issue of social responsibility. I don’t want to inject myself into what is/was a successful thread about you. Feel free to send me a PM if you wish to discuss this further.
Haha fair Enough. I just want to thank you about being so open with your love life here with us all. I obviously don’t know you but from what I do know I just honestly think any guy in the world would be so lucky to have you in his life. I don’t presume to speak for us all but I’m sure many others here feel similarly.
Anyhow, i suppose I agree with you. I’d take being quad over both deaf|blind but not both. I guess I wanted to know what you thought to see if you agreed.
After only 16 (sixteen) paragraphs of additional “let me get the last word in’s” that is a very selfless attitude to take in the end.
Personally I think **umkay **is doing a major public service with this thread. Incidentally it will reach way beyond just the dopers who read it here directly. It will be found forever in web searches by people trying to learn more about almost any and every possible detail about life after CSI. It will certainly make a difference in the lives of many who may be afraid to ask in the case of AB’s or afraid to tell in the case of CSI’s.
You were paying such close attention that you counted the paragraphs in my last post, yet you didn’t notice I have said I’d like to drop the issue as to not hijack the thread THREE times. Since I was ignored I felt the need to make it more explicit. I don’t really want to cause anyone stress, or hijack the discussion, but I am not going to ignore someone distorting what I have said without responding.
Maybe it will. I think we both agree that would be a good thing.
What sorts of medication, if any, does someone with your disability require? Beyond the physical, were you ever prescribed medications to help you cope mentally with your new situation at first? I understand if this is too personal and you want to skip it.
Only to the extent that quads pretty much don’t exist in the third world – it takes first world technology to keep quads alive and healthy for a significant length of time post-paralysis.
[QUOTE=brickbacon]
I would imagine most quads don’t have nurses diligent and careful enough to catch these problems, so for them, it might mean death.
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Even when caregivers are diligent and careful there can be problems. Christopher Reeve had the best medical care money could buy yet he almost lost one of his feet to a pressure sore – being a large man was probably a factor as it was just harder to move him around, and his own bodyweight would exert more pressure per square inch than, say, umkay’s who is a smaller, lighter human being.
While in a sense quads aren’t fragile, they don’t shatter at a touch and can certainly go out into the outside world, in other ways they are exceedingly fragile. They are so much more prone to things like bladder and kidney infections, pressure sores, if they get any sort of respiratory infection they are so much more likely to contract pneumonia. If they mis-swallow and choke on their food they can’t cough to clear their airway, so they are at higher risk of suffocation. Quads don’t have a normal lifespan. Jill Kinmont made it to 76, having lived over a half century with quadriplegia which is absolutely extraordinary. Best stats I could find with a quick Google list 20-30 years post-injury as typical. That would give umkay a life expectancy of 34-44 years, compared to an able-bodied woman in her demographic which can expect around 80. Of course, given that umkay’s situation is better than that of the average quad she stands a reasonable chance of beating those odds but don’t for a moment think that she lives in anything other than an ongoing, heavily managed medical crisis however much she manages to do in the meanwhile aside from simply continuing to exist.
[QUOTE=brickbacon]
That’s kinda what I am getting at. As someone who doesn’t know much about disability, when I hear about your bed that helps prevent sores, and the machines you use to connect to the world, I think about how society would probably be more willing to provide some of that if they knew how helpful and life-affirming they could be.
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The medical world already knows how “life-affirming” those things can be. How about YOU advocate that the impoverished disabled depending on Medicaid and Medicare in this country have some of their income and asset limits raised, and more money provided by society for their medical care by, for instance, voting for political candidates who are NOT intent on cutting what remains of the social service net? Cost-cutting that reduces the reimbursement rates for insurance of last resort is what keeps the poor quad from getting the equipment like umkay’s bed, not lack of knowledge. It also means more stress and likelihood of injury in the people who have to manually turn these people rather than having a pressure-relieving mattress do the hard work.
(Those beds are amazing things – when my father in law was dying we had to set an alarm throughout the night so someone would get up every so often and reposition him. This played merry hell with the caretakers’ health and sanity because that person did not get an uninterrupted night’s sleep, not to mention what it did to a man so fragile that handling his limbs could break bones, and did on two occasions despite very gentle handling. When my mom was dying we had one of the “magic beds”, which was better for everyone. In both cases we avoided pressure sores in the invalids but given modern technology one of the methods was needless cruel to several people.)
[QUOTE=brickbacon]
I am sure you are a great tech recruiter, but I think that you could have a far greater impact on the world in a different capacity.
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With a statement like that you’re saying a person has no right to do what they want but rather an obligation to do what society deems more important than their own desires. You don’t see how that denies freedom to someone?
[QUOTE=brickbacon]
Advocacy doesn’t mean necessarily mean public speaking. Given the response to this thread, the ignorance you’ve dispelled, and the positive feelings you have engendered, I think your potential efficacy is clearly on display.
[/quote]
Why isn’t her thread here enough for you? When do her efforts meet your standards of “sufficient”?
[QUOTE=brickbacon]
I think that is a gift that is not being effectively utilized.
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You admit you don’t know much about disability yet you judge umkay’s efforts as insufficient. This is like a high school drop out attempting to critique the work of a Nobel laureate in science. You clearly lack a sufficient knowledge base on which to form a valid opinion yet you stubbornly insist you do.
[QUOTE=brickbacon]
I don’t think taking an opinion on that matter is wrong or unfair to you. Although I can appreciate how it may not seem like it, but I mean it as a complement.
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You come across as ignorant, judgmental, and arrogant to me, and I’m able-bodied.
[QUOTE=brickbacon]
I think you are bringing your own baggage here. I don’t think I have said anything to minimize your existence or to foist some responsibility on you.
[/quote]
No, you just think her efforts are insufficient based upon one internet thread.
[QUOTE=brickbacon]
To your latter point, I would hope you want to do something extraordinary, not because your life is different from mine, but because you seem capable of doing so, and because the highlighting those differences in a clear and compelling way could literally save people’s lives.
[/quote]
Able-bodied people are even more capable of doing extraordinary things and saving peoples’ lives, but unless you advocate they do so with the same fervor you are desiring umkay to be the saintly super-gimp, generally seen only in fiction like sappy TV specials where, in the end, through faith and hard work and never giving up, the heroine not only wins the Nobel Peace Prize and cures cancer but gets up and walks in the end.
Sorry, that’s a fairy tale and an unrealistic burden to place on someone’s who’s daily existence is both precarious and constrained.
[QUOTE=brickbacon]
I don’t mean to add any stress to your life, or to hijack your thread, so consider the matter closed.
[/quote]
You could try something like a post consisting of “I’m sorry if I came off as a jerk and I’m going to shut up now.” Full stop.
Your multi-paragraph posts indicate to me that in fact you do want to continue with this line of argument.
Do medical emergencies ever take place at a convenient time? IS there such a thing as a “convenient time” for an emergency? Did it occur to you that such emergencies could and likely do also occur during work hours, in the middle of the night, and so forth?
You clearly have zero experience with either disability or someone near you having a serious medical condition of any sort.
[QUOTE=brickbacon]
It seemed to me that your rant was (initially) less about the medical emergencies, and more about how it fucks up your plans and inconveniences you.
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OMG, yes, being unable to move your body is an inconvenience! And WWII was an impolite disagreement!
Tell me, how long does it take you to get ready to go out in the morning? A half an hour? Could you go from bed to out the door in 30 minutes? 20? It’s takes a couple of hours minimum for umkay to do that. I could probably get up, shower, dress, and have breakfast and be out the door in the time it takes her just to get out of bed. Have you really thought just how “inconvenient” and “fucking with plans” that sort of thing is, when it takes a significant number of your waking hours just to get out of bed and start your day?
[QUOTE=brickbacon]
As I said, I don’t want to make it seems like I think you have it easy, but the outrage here is misplaced.
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I thought she was extremely compassionate and moderate in her response. I am certainly feeling outraged on her behalf (whether she wants me to be or not). I realize that you are speaking largely from ignorance but that makes it no less annoying.
[QUOTE=brickbacon]
All I was trying to do is pay you a complement.
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Well, it seems to have fallen a bit flat. When one inadvertently causes offense the best course is usually to say “I’m sorry I did that, I’ll try not to do that again”. You don’t try to offset the blame onto the person you offended.
[QUOTE=brickbacon]
If you are saying you are physically unable to take a more proactive effort in raising awareness, as one might be when they are undergoing chemo, then you have a valid point.
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I think you fail to realize just how draining and limiting being unable to move actually is. Yes, there are people suffering from paraplegia or the equivalent who have done wonderful things, but someone like Stephen Hawking is only alive and contributing due to modern computer technology and a small army of attendants keeping their physical form from completely going to hell on a daily basis.
Even something as small as going out to sit on a porch is complicated for a quad. Even if the person is in a wheelchair they can drive on their own, in an environment where, due to some technology he or she can open the door without a human hand to manipulate the door, there are constant things to worry about like the temperature and whether the sun is too hot or the shade too cool, is it time to shift the unresponsive body to avoid pressure sores, and so on. This never ends. There are no casual trips to anywhere, ever. No spontaneity in the sense the able-bodied use the word. None of this monitoring is done as the able-bodied do it, half-unconsciously, it must all be driven by human intellect and deliberate memory, the careful development of habitual rountines than can never be discarded.
[QUOTE=brickbacon]
That said, I would wonder why you started this thread. You admirably put yourself out there to dispel ignorance and shine some light you your reality, yet you get angry when I suggest it would be great if you scale it up.
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I guess you totally blew past where umkay talks about how time-consuming it is for her to compose her posts, how she has to stop at times and teach her voice-recognition software how to deal with new words that we AB folks just effortlessly type with hardly a thought, where she has to decide between dictating to another human being or, if the subject is too personal, to wait until she can speak/type the post and edit it laboriously on her own. You ignored her descriptions of the length of time required just to perform daily hygienic functions the rest of us take care of in a matter of minutes. You’ve glossed over how she describes how even going out for a cup off coffee requires negotiations of whether the person comes to her home and drives her there, or if she has an attendant drive her to meet the person, and whether or not the coffee shop is accessible to a greater or lesser degree – can she even physically get through the door? Is there sufficient room to maneuver her chair? If the person is new does she educate them on how to help her drink a beverage and how does that interfere with the normal flow of conversation…
Did it occur to you that umkay is ALREADY taking some of her precious time from other important things in her life in order to contribute to this thread?
Maybe this IS all that she can do right now?
Remember – she IS working full time – despite the hours of maintenance her body requires every day. Outside of that full time job she must also manage multiple employees (make no mistake – her caregivers ARE her employees and she must direct them). She has to plan meals in advance because she simply can’t just run out to the grocery store at the last minute if something is forgotten. If her mother wasn’t willing to do her shopping for her she’d have to hire someone to do that for her, yet another employee. Meanwhile, yes, she would ALSO like to have something of a social life because, you know, she’s a human being and a young woman.
Just how much time do you think she has in a day?
[QUOTE=brickbacon]
While it’s great that thousands of dopers get to benefit from your words, it would be better if millions of others could too. Somehow, that gets morphed into me trying to tell you how to live your life, minimize your struggles, and put you in a box. I honestly apologize if you interpreted it that way, but I think a fair reading of what I actually said would lead most to be a little more generous to my perspective on things.
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Nope, I think a fair reading of what you said indicates that you just don’t get it. One reason our severely disabled posters aren’t heard from as much as the less disabled is that everything is more effort for them and, due to their physical needs, they effectively have much less time in their day for work, for family, and for free time.
[QUOTE=brickbacon]
Yet, after having dipped your toe in those waters, you take umbrage at a suggestion that since you seem to be good at it, and that others seems to be responding positively to this thread, you might want to think about devoting more time to it. Honestly, I don’t get the outrage.
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Honestly, you don’t get just how much more difficult it is for her to do something as simple as post on a message board.
[QUOTE=brickbacon]
The money aspect was only an issue in my mind because being an advocate with an expensive, and precarious heath condition means that sustenance often takes higher priority. Not having significant financial impediments gives one far more freedom to be (more) selfless.
[/quote]
Let me clue you in to a few facts about quads and money.
Again, a quick Google search can generate some interesting tidbits. The average high quad, such as umkay, costs about $94,000+ every year to keep going. Or did you think that her caregivers worked for free? I don’t know how many she has, but do consider she is paying multiple people full time to care for herself. In addition to equipment like her wheelchair, which I’m certain is comparable in cost to a tricked-out SUV, and her bed, and the hoist to get her into and out of that bed, and the cost of disposable items related to her care, any medications she requires… Of course, that’s an average, some might get by with “only” $60,000 a year in costs and others might require significantly more, but let’s go with that average for now.
Here’s the thing: I can live on $10,000 a year if I have to (I have, for the past few years). Umkay requires ten times that amount to live a comparable bare-bones barely-getting-by existence. That’s why so many quads wind up in nursing homes where the consolidation and economy of scale can cut those annual costs per quad down somewhat.
So really, this is sufficient to financially break even wealthy families. Maybe you should reconsider what “wealth” and “resources” means in that context. It’s not a matter of “oh, you have a million dollars, you’re set for life, go do charitable things” it’s more “oh, you have a millions dollars, you can live for 10 years of bare-bones existence with no extra frills, but go out and spend your money on charity instead of taking care of yourself.”
Is this becoming any clearer yet?
[QUOTE=brickbacon]
Secondly, I feel perfectly comfortable saying that I think rich people should take on greater social responsibility if for no other reason than they often have more time, education, and resources to do so. Also, because people usually become rich in this country due to the society we’ve created to allow for that. I expect people who have materially benefited a great deal to place a greater emphasis on strengthening society, and giving back. I can understand however how others might disagree with that.
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Get off your high horse. Go back and re-read what I wrote about the costs of keeping someone with quadriplegia alive on a yearly basis. I suspect that umkay’s continuing care not only consumes her own salary, but has dented her family’s money as well. I suspect that no one in her family regrets that, and they have been happy to make that sacrifice for her, but don’t for a minute think that modifying a residence, paying for caregivers, purchasing a transport van, and all the rest of it isn’t a huge expense even for someone who might be in the “one percent”.
She does not have “more time” than you do. I suspect she has considerably less time than I do to actually get things done, even if I am working 1.5 jobs right now. Those greater resources are going in large part to keep her alive and healthy, but at least console yourself with the notion that it’s her and her family’s resources doing it rather than her lying in a bed in a state-run facility on the taxpayer’s dime.
[QUOTE=brickbacon]
Then why did you mention it if it wasn’t a humblebrag deflection from the issue at hand?
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Don’t nitpick in that manner. Doing charity quietly is actually a common approach to the matter. You’re only asking that to cast doubt on her efforts and find additional proof in your eyes that she’s not doing enough to please you.
[QUOTE=brickbacon]
So if you think you would be a bad advocate, have no desire to do it, or don’t feel it’s important to you, just say so. No need to get bitter about a suggestion I made.
[/quote]
Oh, please – you are so full of yourself. Doing only a little doesn’t make her a “bad advocate” or indicate it’s not important to her, it’s that that is what she can do right now. Perhaps she should give up all hope of a social life and marriage in order to spend the time on disability advocacy? Please! She is allowed to have a life outside her disability, to have something in her life that isn’t about breaking her neck at 14 even if that unalterable fact is a constant presence in her life.
[QUOTE=brickbacon]
Secondly, money matters a great deal. Especially for someone in your situation. Quit acting as if it’s some burden because people might unfairly expect more of you than you feel compelled to give. That’s not a real problem, and if you feel so restrained by it and the bad assumptions strangers like me make about your situation, then don’t write about it on the internet, and don’t take the money.
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The burden is ignorant people who can’t be bothered to think that it takes a crapload more money to keep umkay alive than it does to keep yourself alive.
You see, unlike yourself, I don’t assume that she in fact has more to give, be that time, energy, or money.
[QUOTE=brickbacon]
No, that makes no sense whatsoever. I think I have been perfectly clear on that. At this point, any misunderstanding is your own distortion.
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In other words, it’s all her fault? I think you are sadly mistaken brickbacon. She is not the one at fault here.
[QUOTE=brickbacon]
What is the difference between what I have said, and other suggesting you write a book, or that you are awesome? I noticed you accepted all of that commentary with grace and charm.
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That’s because we’re saying she’s awesome for what she’s already doing, not making awesomeness a condition of her doing even more, whether that’s practical or not. And she isn’t accepting the book suggestion without reservation, but I’m not convinced you’re actually reading what she writes in a thorough manner.
[QUOTE=brickbacon]
But, when someone says something you interpret as negative, you get all butthurt, and contend that I am trying to act as though I know you, or that I am telling you how you should live you life. I get that maybe I just struck a nerve, but stop pretending this is about me and what I actually said as opposed to some issues you came in here with.
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No, brickbacon this IS about you. It’s about your ignorance and assumptions, and how YOU got all butthurt when she (far more politely than I would have) attempted to correct you. You’ve made up your mind she’s a lazy, spoiled rich girl who isn’t exerting herself sufficiently on behalf of the poor, downtrodden masses and you’ve deafened yourself to any words to the contrary.
Wow, what I have deemed from brickbacon is that there is contempt for people with money, the well-off, etc. No matter what the hell else is going on in the lives of people with money, there shall remain contempt.
un
fucking
real
If brickbacon lives in the first world, he/she should get busy right friggin’ now, lest ‘‘hypocrite’’ be slapped on him/her.
.
Because, of course, if you have money, it was society that gave it to you, and you should be grateful and give back to society.
Recognizing that this is IMHO, I’ll just say that I strongly disagree with brickbacon’s opinion concerning this issue.
I do the latter already. I have already told you why I don’t advocate for the disabled myself.
Absolutely not. It’s an opinion. And one from a stranger at that. The fact that you think that means I am denying anyone their right to do what they want is laughable.
Insufficient? No, and it makes no sense to use that term given that there no “right” amount of effort. My point was that generally if people like her made more threads like this, in addition to other acts of service, we would all be better off. Do you disagree with that?
No, it means I am not going to be publicly browbeaten without a response.
I was quoting HER. That’s my point. When someone articulates the burdens they have, and part of the focus is on, “how they can’t meet friends for lunch”, and “emergencies” happening at “inconvenient times”, I question how serious they feel those things are. That said, it’s clear her situation in general is precarious.
Eh. I explained what I meant. I apologized and offered to drop the issue multiple times. She can either take my comments in the spirit I intended them, or be content being angry that I was the umpteenth guy to suggest she do something she doesn’t want to do.
Then she can say that.
Ah yes, the burden of managing multiple employees. I get it, that’s time consuming and can be laborious. But I would imagine the average quad would love to have that sort of burden.
True, but they also end up there because they are faceless entities to the majority of people out there. That’s all the more reason in my mind to educate people on how we can collectively improve their conditions and situations.
Please show me where I said she should stop taking care of herself to become an advocate?
Bullshit. I didn’t ask her if she was doing other things to be sufficiently busy in my mind. She volunteered that. Yet, then says she doesn’t want to talk about it. If that’s the case don’t bring it up. She has no reason to defend herself to me or anyone else, and the fact that she continually feels the need to do so is not me imposing that expectation on her.
Contempt for people with money. Hardly, considering that includes my immediate and extended family, and many people I know.
Nice, except that I didn’t actually say that. I never said society GIVES people money, nor did I imply that rich people don’t typically earn their money like everyone else. What I said was there should be bit more appreciation for the fact that, in my case, American society, laws, culture, business climate, etc. are what allowed the rich people I know to make money. Part of the gratitude some of they have for the existence of those things manifests itself as an emphasis on charity, service, and giving back. I think society has a reasonable expectation that people who have acheived the most should be more willing and able to take action in those areas. That is the idea behind Bill Gates’ giving pledge. He is not asking regular folks to donate 90% of their wealth even though that collective amount would dwarf the contributions of the super-rich. He is asking rich people because there is an implicit understanding that they have the means and, arguably, obligation to help more that some guy making 50k/year. I don’t think that is a radical notion.
Well, given what you typically write here, I am not surprised. That said, if you are going take issue with my perspective on something, you should actually address what I have said. I think reasonable people can disagree with what I actually said, so there is no need to distort it to make it seem like a radical notion.
When I told her I just couldn’t grok that and surely, there was something she liked to listen to, she said “Yeah, the sound of my own voice.” I don’t think I’ve ever heard a more revealing comment from someone. She couldn’t even minimize the damage by adding “And, don’t call me Shirley.” 
Indie rock is my go-to, as well. There are two bands on your list that I haven’t heard of before, so I’ll definitely be checking those out. If you’re up for some suggestions, let me say that The Shins, The Walkmen, Geographer & Porcelain Raft have all made stellar albums this year. Oh, and the new stuff from Japandroids is amazing, too. Now, having named all those, lately I’ve been listening to Ed Sheeran. A little pop music once in a while does the body good, I say.
Oh, concerts! Do you like concerts? I’m guessing some venues are more accessible than others?
I’m sorry if this has been asked before, if so please feel free to ignore it.
Do you sleep alone in a regular bed, with the lights out or do you have some special setup?
WTF is wrong with you???
Oh, forgive me. I should have simply said, “My life-threatening medical conditions are a major impediment to living, period.” That weighty and important enough for you? Of course, you couldn’t be expected to have read between the lines there, considering your colossal ignorance regarding disability issues, which you once again revealed when you denigrated the importance of a dumb little thing like a normal social life (something an AB like you takes for granted) to a high quadriplegic.
No, a compliment would have sounded like this: “Have you ever thought about taking on an advocacy role? Personally, though I don’t know you or much at all about disability, from what I’ve read here, it seems like you’d probably be good at it.” And I would have responded with “Oh, aren’t you sweet? I do my own small part, but I’m not interested in a public role.” And that would have been it. You wouldn’t have continued to berate me for pages about what you think are my selfish and shameful life choices. What you’ve really done in 3 separate posts is come off as the world’s biggest scold, judging me thoroughly without the most basic real-world knowledge of my life.
Gee, if this is how you compliment people, I’d hate to hear what an insult sounds like.
Ah, now you’re getting it. But it’s not all about my physical issues, and I don’t need it to be. I reserve the right to make my own decisions about what I do with my own life, and I don’t need to apologize to you or anyone about it.
Because I was asked to. And I thought it would be interesting.
Nope. I get angry when someone suggests I scale it up and implies not doing so is a blot on my character.
So get off my @ss about it, huh?
Because your suggestion came with a distinct after-taste of judgment. I’m not the only one who picked up on it either, so don’t call me crazy.
As does having the full use of one’s body and zero health concerns. Or a job. Or a social life.
[Emphasis mine].
This is the most revealing thing you’ve said.
It’s also why it’s hard to take you seriously when you engage in recreational outrage on this thread, painting a mental picture of all the poor, sad quadriplegics out there who need me. This is all just a game to you, whereas it’s my life. Which is probably why I feel genuinely outraged, and you can’t understand why.
You’re richer than somebody. Go help them. All of them.
Oh, give me a break. I figured mentioning it obliquely would call you off. Unfortunately, you just can’t let go of this bone.
How have you not heard this in my posts yet? I DON’T THINK I WOULD BE ALL THAT GOOD AT IT. I DON’T WANT TO DO IT. IT’S NOT IMPORTANT TO ME. Not the way you’re suggesting, anyway.
Oh yes, you’re totally right there.
Buuuuut…if this someone didn’t say that, but rather, “It’s clear to me–though I don’t know you or very much about your situation–that you have the resources, time, and ability to get to the party next weekend. But, since you obviously have no desire to respond to the call of action on your life and make it there, which will probably–probably, I have no real idea and I don’t actually care–mean that others will suffer…well, then it’s a shame you won’t be there,” I would be angry.
…which is a tad closer to what you did here.
Because no one else even remotely implied that not writing a book would be a moral failure and an abdication of sacred responsibility on my part.
Because you have no fcking clue what a herculean effort it takes for a person with my injury level to work full-time (and to have finished high school and college in order to do so). You just sht all over that.
Incidentally, I doubt that the candidates I’ve placed in jobs over the last 4 years, as the economy has imploded and unemployment has shot up, feel like I don’t make an impact for good in the world with my career choice.
You’re so out of context here. Go back and re-read that post. I wasn’t talking about money when I said that. I was talking about my positive attitude and mental coping abilities. THAT is what makes MY life SUBJECTIVELY better, NOT objectively better. If I go to a happy place in my mind when my someone strips me down and helps me take a crap in the morning, that doesn’t make the task OBJECTIVELY any easier for me. It just eases the trauma for me, mentally.
Ahahahahahahahaha!
No.
That’s not what just happened. What just happened is that someone walked up to this 7 foot tall accountant and said, “What you’re doing with your life is not meeting your full potential. You have a responsibility to the world to play pro basketball.” And he says, “Um, okay, that’s kind of offensive to me, considering how much schooling and struggle it took me to get my CPA, and the fact that you don’t know me. You assume that, because I’m 7 feet tall, I’m a good fit for the NBA. But I’ve looked into (all my life people have told me this, after all), and it’s not right for me. Plus, I don’t talk about it much, but I’m a volunteer basketball coach for the local Boys and Girls Club, and I think that’s a better fit for me.” And then you stand there for another 30 minutes, shouting from the sidelines about how you’re not trying to make him feel bad or anything, but he should think of all the young kids he could be inspiring if he went pro instead of wasting his life solving people’s tax problems, volunteering, having a normal life, etc, ad nauseam. And then YOU act all butthurt when he finally loses his cool and gets pissed off at you and your annoying, wrong-headed suggestions.
You did not “merely acknowledge” the idea that I could advocate. Please.
Yes, you have. After you’ve gotten out what you wanted to say.
And, we clearly have a fundamental disagreement on the issue of social responsibility: YOU believe that your social responsibility is to tell others what their social responsibility is, whereas I think it’s more effective to just quietly go about taking care of my own.
Well then, I assume you’ll stop injecting yourself. Now.
Ya know, as off base as brickbacon may be, I think I’m actually glad that this … er… discussion(?) erupted here. brickbacon’s comments and umkay taking him or her to task does wonders to dispel the idea of the “sainted cripple” who no one would dare argue with because it would be mean. umkay might not be able to stand up, but she sure can stand up for herself. 
BULLSHIT. ** brickbacon** doesn’t get a pat on the back because he dared to argue with umkay or created a situation umkay had to deal with. That is condescending! He’s an ass – end of story.
I do require that one treat another human with respect and with respect to circumstances. The circumstances are that umkay has put herself out there – big time – and that is what is to be shown respect. Like a widower/widow who puts themselves out there, or anyone… you do owe them a bit of respect with respect to the entirety of the situation.
We can still demand respect!
.