# Ask the Girl in the Wheelchair **URL:** \ **Category:** In My Humble Opinion\ **Created:** [May 19, 2012, 4:21pm UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436 "2012-05-19T16:21:16Z")\ **Posts on this page:** 20\ **Page:** 14
**Author:** ![F.Pu-du-he-pa-as](https://avatars.discourse-cdn.com/v4/letter/f/c89c15/32.png) [@F.Pu-du-he-pa-as](https://boards.straightdope.com/u/F.Pu-du-he-pa-as)\ **Post date:** [May 25, 2012, 3:05am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/261 "2012-05-25T03:05:32Z")
> [@umkay](#): > > You could suggest… > The beach (I have a special wheelchair for this)! A special beach wheelchair? How does this beach wheelchair work? Also, I now have this great image of you on the beach flying a kite hooked up to your beach wheelchair! ---
**Author:** ![umkay](https://avatars.discourse-cdn.com/v4/letter/u/43a26b/32.png) [@umkay](https://boards.straightdope.com/u/umkay)\ **Post date:** [May 25, 2012, 4:52am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/262 "2012-05-25T04:52:28Z")
> [@Broomstick](#): > > It occurred to me, around the 14th mention of a mouthstick, that dental and oral care might be really, really important to you what with your mouth now taking on some of the duties of hands as well as the usual work mouths do. Do you feel keeping up with dental care is extra important? When you go to the dentist do they leave you in your chair or are you transferred to one of theirs, then back when everything is done? And do quads have problems with excessive tooth wear after a long time post-accident? Your instinct is right on. Because high quadriplegics 1) use their mouths for a lot of tasks that the hands would normally do (in my case, opening beer bottles–but don’t tell my dentist that); 2) often take medications that cause dry mouth, which can rapidly lead to tooth decay; and 3) have someone else brushing their teeth for them, which can be hard to do well–conscientious dental care is extra important. I go to a special care dentist, which is a sub-specialty of dentistry. My dentist had to do 3 years additional training after receiving his D.D.S., to equip him to treat people with special mental or physical challenges. His office, of course, is fully accessible to me. One of the treatment rooms has all the equipment of a normal treatment room, but no dental chair. Reclined way back, my chair’s pretty much exactly the same thing. Incidentally, I get teeth cleanings 3 times annually, instead of the normal 2x for ABs. Because, as you imagined, dental care is extremely important for me. Oh, and my dentist makes the end of my mouthsticks that fits in my mouth, so it’s got his seal of approval. ---
**Author:** ![Ambivalid](https://avatars.discourse-cdn.com/v4/letter/a/a5b964/32.png) [@Ambivalid](https://boards.straightdope.com/u/Ambivalid)\ **Post date:** [May 25, 2012, 4:53am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/263 "2012-05-25T04:53:05Z")
> [@Dignan](#): > > I appreciate the accessibility in our society, but I understand that it isn’t going to be perfect, and there are some things I cannot do. If I can improvise, I do. If I can’t, then that’s the way it goes. I don’t know… While I definitely despise fraudulent and/or frivolous ADA-violation lawsuits brought by unscrupulous people, I do think a certain vigilance is needed in order to help bring the worlds of the abled and disabled into a more harmonious unity. Sometimes this means not accepting what’s being thrust upon you; sometimes you have to _demand_ what you know is right. ---
**Author:** ![etv78](https://avatars.discourse-cdn.com/v4/letter/e/d78d45/32.png) [@etv78](https://boards.straightdope.com/u/etv78)\ **Post date:** [May 25, 2012, 4:59am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/264 "2012-05-25T04:59:18Z")
> [@Ambivalid](#): > > I don’t know… While I definitely despise fraudulent and/or frivolous ADA-violation lawsuits brought by unscrupulous people, I do think a certain vigilance is needed in order to help bring the worlds of the abled and disabled into a more harmonious unity. Sometimes this means not accepting what’s being thrust upon you; sometimes you have to _demand_ what you know is right. I agree with this **1000%** Ambivalid is right, we MUST fight to be part of society! ---
**Author:** ![umkay](https://avatars.discourse-cdn.com/v4/letter/u/43a26b/32.png) [@umkay](https://boards.straightdope.com/u/umkay)\ **Post date:** [May 25, 2012, 5:35am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/265 "2012-05-25T05:35:40Z")
> [@Asimovian](#): > > Another question: outside of your carers and any romantic relationships, how do you feel about people touching you? Do you find that people are more or less inclined to make physical contact with you when talking to you than before you were injured? And do you feel more or less protective of your personal space than before? THAT is a great question. The answer is that people are _much_ less likely to touch me now that I’m in the chair, which is actually a little bit of a bummer to me. I mean, not that I want random strangers feeling me up or anything! :eek: But I do miss the normal physical contact that my AB friends and acquaintances give and receive as a matter of course in social situations. I can’t initiate physical contact, and most people seem to feel kind of freaked out about touching me anywhere I can’t feel, like my knees, hands, or shoulders (leading every so often to the extremely irritating “head pat”). If you can’t wave at a friend, slap a high-five, give a hug, not to mention raise a glass in toast or feed yourself, it’s easy to feel a little left out of big group interactions. Course, not everybody is like that. My closest girlfriends will stand with a hand on my shoulder when we’re chatting with other friends, which is great. And I like when a boyfriend holds my hand if we’re out together (or if we’re in together–but I like more than hand-holding then, haha). Oh, and my favorite? My big brothers always lift up my arms and put them around their necks when they give me a hug–I **love** that. \<3 ---
**Author:** ![umkay](https://avatars.discourse-cdn.com/v4/letter/u/43a26b/32.png) [@umkay](https://boards.straightdope.com/u/umkay)\ **Post date:** [May 25, 2012, 6:18am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/266 "2012-05-25T06:18:36Z")
> [@FloatyGimpy](#): > > Wow, how does that work? I have a [special mattress](http://www.youtube.com/watch?v=AhosqOWaoTg) containing 4 length-wise air cylinders that continuously [inflate and deflate](http://www.spanamerica.com/apm2demo.html) on a ten minute cycle. First, the two cylinders under the left side of my body fill up, which leans me slightly to the right (but not so much that I’m out of range of my sip and puff switch), then they deflate slightly and the right side cylinders fill up, gently leaning me to the left. It’s pretty genius. ---
**Author:** ![umkay](https://avatars.discourse-cdn.com/v4/letter/u/43a26b/32.png) [@umkay](https://boards.straightdope.com/u/umkay)\ **Post date:** [May 25, 2012, 6:29am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/267 "2012-05-25T06:29:38Z")
> [@Athena](#): > > So what’s that like? I have this mental picture of the wheelchair equivalent of a fat tire bike, is that what it is? Big tires so you can go through the sand? > > Does it work well on snow too? The bike is not a bad analogy. [My beach chair](http://www.landeez.com/?page=products) has four big fat tires on it to get me through snow (infrequent) and sand (more likely) really smoothly. You’ll notice, my beach chair isn’t motorized, so I have to have someone push me. But that’s not a big deal, since I always have someone around and being out at the beach is worth a little temporary loss of independence. ---
**Author:** ![umkay](https://avatars.discourse-cdn.com/v4/letter/u/43a26b/32.png) [@umkay](https://boards.straightdope.com/u/umkay)\ **Post date:** [May 25, 2012, 6:47am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/268 "2012-05-25T06:47:26Z")
> [@Quasimodem](#): > > First of all, thanks for this, it is very informative and courageous of you and calls for all kinds of respect. > > Before I left my hospital job, I cared for many patients such as yourself, some of them bitter to the point of screaming at me to get the hell out, and some glad to see me to get their incentive spirometry, aerosol treatments and “quad-coughs” after their chest percussion. > > So, speaking as a former respiratory therapist, I just wanted to apologize to you if at any time you felt your therapist was in a rush or didn’t give you all the care you needed. > > It’s no excuse, but many times your RT isn’t only assigned to your floor, but a couple of others as well and that isn’t fair to either of you. As a quadriplegic, you are a high risk for pneumonia and you deserve all the time necessary to keep your lungs clear. Rehab should be an only assignment for any RT and I had always recommended that this should be one area of a hospital not rushed. > > Another reason for the lack of good care is documentation. Before I left the profession, each therapist had a COW (computer on wheels) which were required to be taken into the room where charting could be done. But here too, the patient was left short-changed, because more often than not, the therapist would start one patient’s aerosol, and then run and start the next patient. I am sorry to say I was one of these. > > Thanks once again for this very frank discussion, **umkay** , and this entire thread should be mandatory reading for anyone involved in any kind of patient care. > > It is good to have you as a **Doper** friend. > > Bill/Quasi Bill, I’m sorry you left the profession. It sounds like you have the heart of a healer. And, apology accepted. 😉 ---
**Author:** ![umkay](https://avatars.discourse-cdn.com/v4/letter/u/43a26b/32.png) [@umkay](https://boards.straightdope.com/u/umkay)\ **Post date:** [May 25, 2012, 6:49am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/269 "2012-05-25T06:49:30Z")
> [@StuffLikeThatThere](#): > > I have a first cousin who had polio when he was nine and has been in a wheelchair ever since. For many years, he had the full use of his upper body, but post-polio syndrome has, over time, robbed him of the use of all but his neck/head and a bit of movement in one arm. Reading your answers here has given me more insight into the considerations of his daily life than I’d have had the courage to ask about, ever. One doesn’t talk about bowel programs at family picnics. (In my family, anyway.) It’s been illuminating. > > BTW, he is now retired, but for many years was a personal and family counselor. I’m so glad. Really neat that your cousin was a counselor. It’s not an uncommon field for quads. And what’s wrong with your family that they don’t talk about bp’s at family picnics?? 😉 ---
**Author:** ![umkay](https://avatars.discourse-cdn.com/v4/letter/u/43a26b/32.png) [@umkay](https://boards.straightdope.com/u/umkay)\ **Post date:** [May 25, 2012, 6:56am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/270 "2012-05-25T06:56:48Z")
> [@voltaire](#): > > I’ve been reading this thread (and the devotee one) since the very beginning and have found it to be very interesting and informative. I haven’t piped up with a question yet because others have been doing a pretty good job of asking questions that hadn’t even occurred to me. But I just thought of one, and although I may be seen as a party-pooper, here goes: > > Are you getting at all tired of answering all the questions? Are you hoping the thread will trail off at some point so that you don’t have to announce that you’ve had about enough of the seemingly endless and boundless questions? > > Don’t get me wrong, I love this thread and will read it for as long as you’re willing to participate in it. I’m just wondering if maybe you weren’t expecting such a voluminous response and are only continuing out of a sense of obligation. > > If and when that time comes, I suggest you just tell us to get any final questions in before a certain cutoff day, and you’ll conclude this interrogation when those are addressed. Dopers can be an inquisitive and relentless lot, but I’m sure we’d all understand that all good things must come to an end. If I’m off-base and you’re enjoying this thread enough to continue indefinitely, I apologize, and am glad you feel that way. > > And I think I can speak for everybody in saying that we hope to see you around in other threads for a good long time! 🙂 Thank you so much for those kind words. Though I’m looking forward to having time to participate in other non-me-centric threads in the future, I am enjoying this thread. I’m no crusader for disability education, but I had a thought today: If everybody I ever came into contact with had read this thread, it would make our interaction so much less nerve-wracking for them, and thus so much more pleasant for both of us. I know most of you will come into contact with a chair user at some point in the future, and I’m pleased when I think about how much more fluidly that meeting might go now that some of your questions are answered and faulty notions corrected. So there’s a certain fulfillment there. If I reach a point where I’m just worn-out, or I feel like the questions are getting really wacky, I’ll do as you suggested and put the thread down easy. 🙂 ---
**Author:** ![umkay](https://avatars.discourse-cdn.com/v4/letter/u/43a26b/32.png) [@umkay](https://boards.straightdope.com/u/umkay)\ **Post date:** [May 25, 2012, 7:06am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/271 "2012-05-25T07:06:04Z")
> [@Mean\_Mr.Mustard](#): > > If, when looking at the device, you see ‘plastic’, it is a suprapubic. If you see a small fleshy hole, it’s a Mitrofinoff (although many these days use the umbilicus as the entry point, so it’s virtually invisible). Can I just tell you how unbelievably stupid I continue to feel for this pretty idiotic mistake? I blame it on my parents directing most of my care at 15. Because, incidentally, I asked my mom yesterday if she knew what kind of catheter I used, and she said it was a supra-pubic. I told her no, it’s a mitrofanoff. To which she replied, “It’s the same thing.” :smack: So at least I know where the misinformation came from. And since I’ve been seeing the same docs since my injury, it’s not like I ever had to explain it to anyone. It’s hard to understand how a person could be so mistaken for so long, though. Eh, keeps me humble. Oh, and my stoma is not in my belly button, but below and to the right of it. You know, exactly where a supra-pubic catheter would be, which doesn’t help with the confusion. Ay ay ay. ---
**Author:** ![umkay](https://avatars.discourse-cdn.com/v4/letter/u/43a26b/32.png) [@umkay](https://boards.straightdope.com/u/umkay)\ **Post date:** [May 25, 2012, 7:13am UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/272 "2012-05-25T07:13:32Z")
> [@Ambivalid](#): > > I don’t know… While I definitely despise fraudulent and/or frivolous ADA-violation lawsuits brought by unscrupulous people, I do think a certain vigilance is needed in order to help bring the worlds of the abled and disabled into a more harmonious unity. Sometimes this means not accepting what’s being thrust upon you; sometimes you have to _demand_ what you know is right. Didn’t mean to imply that there aren’t any reasonable lawsuits out there. A lawsuit is the remedy given to us by the ADA, and it should absolutely be used when necessary. Like, when people are ignorant and obstinate and refuse to abide by the law even once they’ve been informed that they are violating it. But when it’s a mom and pop grocery being preyed upon and blind-sided by lawyers and disabled clients who troll the streets looking for places they can sue, not necessarily for access, but for cash? That ain’t right. And it makes us all look bad. ---
**Author:** ![Broomstick](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/broomstick/32/246_2.png) [@Broomstick](https://boards.straightdope.com/u/Broomstick)\ **Post date:** [May 25, 2012, 12:43pm UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/273 "2012-05-25T12:43:10Z")
For some time there have been people working on making robots capable of caring for the disabled. So, **umkay** , assuming the level of care would be equal, would you prefer to continue to hire human beings as your proxy hands or would you be interested in a robot servant catering to your needs? ---
**Author:** ![RTFirefly](https://avatars.discourse-cdn.com/v4/letter/r/c77e96/32.png) [@RTFirefly](https://boards.straightdope.com/u/RTFirefly)\ **Post date:** [May 25, 2012, 2:09pm UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/274 "2012-05-25T14:09:43Z")
> [@umkay](#): > > LOL. I’m gonna steal this, if you don’t mind, for the next time someone reaches out for a handshake upon meeting me: “Nope, sorry. They’re strictly decorative.” 😉 I wouldn’t have thought of it, but using it in that context transforms my reasonably funny throwaway line into something quite brilliant - it simultaneously takes the awkwardness out of letting them know that you won’t be shaking hands and why, puts them at ease by joking about your disability, and lets them know you’re a smartass, all in just five words. So please do use it, as often as you like. Make it your own. Like I could stop you. 🙂 ---
**Author:** ![RTFirefly](https://avatars.discourse-cdn.com/v4/letter/r/c77e96/32.png) [@RTFirefly](https://boards.straightdope.com/u/RTFirefly)\ **Post date:** [May 25, 2012, 2:17pm UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/275 "2012-05-25T14:17:06Z")
> [@umkay](#): > > I have a [special mattress](http://www.youtube.com/watch?v=AhosqOWaoTg) containing 4 length-wise air cylinders that continuously [inflate and deflate](http://www.spanamerica.com/apm2demo.html) on a ten minute cycle. First, the two cylinders under the left side of my body fill up, which leans me slightly to the right (but not so much that I’m out of range of my sip and puff switch), then they deflate slightly and the right side cylinders fill up, gently leaning me to the left. It’s pretty genius. _Lean to the left, lean to the right, stand up, sit down, fight fight fight!_ Free association can be a dangerous thing. 🙂 ---
**Author:** ![Mama\_Zappa](https://avatars.discourse-cdn.com/v4/letter/m/71e660/32.png) [@Mama\_Zappa](https://boards.straightdope.com/u/Mama_Zappa)\ **Post date:** [May 25, 2012, 2:34pm UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/276 "2012-05-25T14:34:51Z")
> [@umkay](#): > > The bike is not a bad analogy. [My beach chair](http://www.landeez.com/?page=products) has four big fat tires on it to get me through snow (infrequent) and sand (more likely) really smoothly. You’ll notice, my beach chair isn’t motorized, so I have to have someone push me. But that’s not a big deal, since I always have someone around and being out at the beach is worth a little temporary loss of independence. I’d heard of those, not sure I ever saw a photo of one before. The tires look like cartoon tires :). Do you actually go into the water using that chair? If so, when you do, do you have your attendant unstrap you so you can float free? And, if it’s cold in the water, does that pose any special risks for you? (e.g. kicking off a bout of autonomic dysreflexia) ---
**Author:** ![CairoCarol](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/cairocarol/32/3825_2.png) [@CairoCarol](https://boards.straightdope.com/u/CairoCarol)\ **Post date:** [May 25, 2012, 2:37pm UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/277 "2012-05-25T14:37:02Z")
> [@Filbert](#): > > if you’re an assistant for someone in that way, making decisions for them is _not your job._ It’s not your job to go ‘I think you’d better eat something healthy now’, it’s definitely not your job to go contact their friends or family without them asking. > > Short of an extreme situation when someone was in serious, imminent danger (say if the person you worked for was very ill and was obviously hallucinating, but was claiming to be fine- you might call a doctor even though they just told you ‘it’s OK, the pixies are sorting it out’), or highly illegal instructions (if I’m going to rob a bank, I’ll do it for myself, not for hourly pay), you do what you’re asked. > > You’re effectively paid to be someone’s artificial limbs, not to make any of their decisions. Of course … it’s obvious (now that it’s been pointed out to me). One the one hand, now I feel ignorant that I even asked such a patronizing question. On the other hand, I’m really glad I did ask, because now I know better. Good example of why this is a great thread. ---
**Author:** ![etv78](https://avatars.discourse-cdn.com/v4/letter/e/d78d45/32.png) [@etv78](https://boards.straightdope.com/u/etv78)\ **Post date:** [May 25, 2012, 7:09pm UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/278 "2012-05-25T19:09:52Z")
Do/did you receive Voc Rehab services? ( **Ambi** , please chime in as well) ---
**Author:** ![Bricker](https://avatars.discourse-cdn.com/v4/letter/b/977dab/32.png) [@Bricker](https://boards.straightdope.com/u/Bricker)\ **Post date:** [May 25, 2012, 7:16pm UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/279 "2012-05-25T19:16:30Z")
> [@Ambivalid](#): > > I don’t know… While I definitely despise fraudulent and/or frivolous ADA-violation lawsuits brought by unscrupulous people, I do think a certain vigilance is needed in order to help bring the worlds of the abled and disabled into a more harmonious unity. Sometimes this means not accepting what’s being thrust upon you; sometimes you have to _demand_ what you know is right. In my opinion, the law is the law, and so I can’t get too worked up in sympathy for faciltiy owners that don’t follow it. However, I would say that a reasonable additional step would be allowing a period of time between notification and lawsuit – that is, say, a restaurant cannot be sued until sixty days past the time they were first notified of the intent to sue. And if they’ve cured all the defect in that time, then they’re safe. This gives effect to the intent of the law – necessary access – but prevents the worst of the predatory suing impulse. ---
**Author:** ![Steophan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/steophan/32/9595_2.png) [@Steophan](https://boards.straightdope.com/u/Steophan)\ **Post date:** [May 25, 2012, 7:42pm UTC](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436/280 "2012-05-25T19:42:48Z")
> [@Bricker](#): > > In my opinion, the law is the law, and so I can’t get too worked up in sympathy for faciltiy owners that don’t follow it. > > However, I would say that a reasonable additional step would be allowing a period of time between notification and lawsuit – that is, say, a restaurant cannot be sued until sixty days past the time they were first notified of the intent to sue. And if they’ve cured all the defect in that time, then they’re safe. This gives effect to the intent of the law – necessary access – but prevents the worst of the predatory suing impulse. It doesn’t however provide the disabled person with recompense for not getting the access they are entitled to. Perhaps allowing compensation but not punitive damages in that 60 days would work. [Previous page](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436.md?page=13) [Next page](https://boards.straightdope.com/t/ask-the-girl-in-the-wheelchair/622436.md?page=15)