I don’t currently use a sip and puff wheelchair control, though I have in the past; now, I have a joystick mounted on my chair that I move with my chin. This joystick is a so-called “proportional” drive system, where the further I move the joystick, the faster my chair goes (just like the gas pedal on your car). It also means I have to be in contact with the joystick to keep the chair in motion. But since I’m only using my chin, there are no issues with talking and driving.
On the other hand, a sip and puff control does not require that you be actively sipping or puffing the entire time the chair is in motion (and it’s a good thing, considering almost all people who use sip and puff have compromised breath control or mechanical ventilation). So even when I used this system, I was still able to hold a conversation and operate my wheelchair at the same time. Sip and puff is engineered to be a “latched” system. If my current proportional joystick is like pressing the gas in your car, a latched sip and puff system is more akin to your cruise control. A hard puff into the straw will start the chair forward, and it will continue forward until you give a hard sip to stop (and a hard sip in a stopped position will cause the chair to reverse). While the chair is moving forward, you can do a soft sip to turn left, or a soft puff to turn right, in order to maneuver around the house or down a street.
Sound complicated? It does take awhile to learn. And even after I became a pro at it, I still didn’t like it much, and found myself hitting things or getting stuck much more often than I’d have liked. I switched to a joystick years ago, and I’ve never looked back.
I do have an “attendant control” on the back of my chair, which is a little joystick that my carers can use should they ever need to push my chair for me. You’re absolutely right about the chair being heavy–it’s about 300lbs with the batteries! Nevertheless, it could be pushed (slowly) if the batteries ever died on me while I was out (which is not something I ever allow to occur).
BUT, I rarely cede control of my chair to anyone else. I mentioned this earlier in the thread, but the chair is my legs, so someone else controlling my chair is like someone picking you up and carrying you somewhere. I saw a quote the other day that made me laugh out loud. It was on a list of common things people say to chair users, and the best responses to them:
–“Hey, do you mind if I push your chair?”
–“Do you mind if I move your legs? It won’t be weird.”
That’s a really interesting question. While I don’t regularly ask someone to bring my hands to my face or neck, occasionally while being dressed or getting intimate with a partner, my hand or arm will come into contact with my neck or cheek. It’s a neutral sensation to me, since–as you guessed–if I were blindfolded, I’d have no idea that it was my own limb.
I miss having the use of my arms, but I usually focus on the practical ramifications of them being paralyzed (i.e. not being able to feed myself or scratch an itch). I haven’t really thought much about missing the ability to casually touch my face or neck or whatever. But then, that may be because I am touched all day, every day, by those who care for me?
Wow. I find it interesting that our accidents happened so close! What was the date, if you don’t mind my asking? I got hurt 12/22/99, which was 12.5 years ago.
Hm. I’ve actually come into contact with more motor complete/sensation incompletes. But maybe that’s just more common with quads? What does that make you on the ASIA scale (I’m ASIA A, obviously)? If you got to choose, what would you pick? Movement or sensation?
But, having sensation, does this mean you don’t have to worry about pressure sores? I read the first page or two of your airline rant, which Broomstick linked to early in this thread, and saw you don’t need a catheter. I’d bet that’s nice, and reason enough to prefer sensation over movement.
Because the issue has already come up, I bet those reading this thread would be interested to know (though I bet I can guess the answer): Are you glad they clamped your aorta and saved your life? Or would you have rather died than be paralyzed? (This might be a softball…).
And, PLEASE, feel free to ignore all of this if you’d prefer not to answer such personal questions.
I don’t know how I feel about stem cell treatments, to be honest. I’ve certainly never tried them. And as you recall, I don’t really spend much time thinking about or researching cures. My feeling is that, if something is found to really, truly work, there won’t be any way to miss it. It’ll be trumpeted from the mountaintops. And I’ll get in line.
I think the work Christopher Reeve did on behalf of paralysis awareness and research is terrific. However, it was sad to me that he had so many health issues. He always seemed really frail–not the vibrant, healthy person I still aspired to be despite the chair. Of course, that was in no way his fault. Just the luck (or unluck) of the draw.
Hahahahahahahahahahahahahahahahaha!
(Oh, NICE inclusion of my crush, Sam. But I’m not picky–it could’ve been Channing Tatum, too, and I’d have been just as happy).
As I mentioned in a pp, while I had a fleeting and immature desire to be an actress at 5, I haven’t wanted to be one since.
The reality is that it would be incredibly hard for me to find work in Hollywood. It’s already hard for perfect AB women. And they can play quadriplegics, whereas I can’t play an AB person. So, being that I don’t have some crazy ambition to do it, it doesn’t seem worth the hassle to me.
Also, though my face is nice, my body is not anything close to the Hollywood ideal…
Mmmmm…No, I don’t think so. Not that that’s not flattering–Kelly Preston is a lovely lady.
The person I’ve been told most frequently that I look like over the years (especially when I’m brunette) is Elizabeth Hurley. To be fair, I don’t think I’m a dead ringer for her at all–she’s a gorgeous model. But I think people note similarities in the bone structure of our faces, and our eyes. In any event, probably 30 people have told me that over the years, so there must be something there.
The first time was with my first real boyfriend, the guy who picked me up out of my chair the first night I met him. He was unbelievably charming and sweet and funny. We dated for the last two years of college.
The second time was my most recent ex, who was also a great guy. Heart of gold, totally driven and outgoing. I hadn’t fallen, really fallen, for anyone since my first boyfriend, until he came along. We were together for about 8 months.
Both broke up with me because they couldn’t handle the reality of (eventually) marrying a very disabled partner. I’m not imagining this; they both spelled it out for me, in no uncertain terms. I don’t blame them, they both cried when they told me, and I’m glad they were honest when they realized this. But it sucked. Obviously.
We do have a menu meeting early in the week, so I can give my mom a shopping list. I have the final say, and I will often suggest certain meals. But a few of my attendants over the years have been fantastic cooks, and I love to let them take the reins once they know what I like and don’t like. I don’t really like thinking about meal planning that much, so it’s a bonus when I find the chefs!
Start hanging out in Cafe Society and pretty soon you’ll be drooling over all the yummy things that get talked about. We’ve got some mighty fine cooks around here, I can see that shopping list getting longer.
I have to say, my first reaction to your post was anger. Of course, I’ve taken some time to think about what you’ve said, and I’m not angry now. But maybe I can explain why I felt angry?
First, if I’ve given the impression that my life is without much struggle, that would not be factually accurate. My whole life is a struggle, which you would know if you spent one day in my body. I have certain material and financial resources that others don’t have. I am grateful for that and fully acknowledge that I didn’t do a darn thing to deserve (most of) it. But family and money don’t solve every problem. When I wake up in the morning, no matter how big my or my dad’s bank account is that day, I still can’t so much as lift a finger. Regardless of my wonderful family, I lie there and surrender my privacy and dignity while someone else takes care of my most intimate needs. This experience replicates itself at intervals throughout my entire day, every day of my life.
I also routinely have medical emergencies present themselves at the most inconvenient times: I can’t meet a friend for lunch because my PCA is scrambling to get my blood pressure down, trying to calm a mute, angry body that I can no longer communicate with or control. Or I wake up in the night with a cold, and spend the wee hours hooked up to a machine that inflates and then violently deflates my lungs, wracking my body with coughs. I am useless the next day, unable to work, lacking sleep and needing to be coughed hourly. Or, while bathing me, my carer notices a spot on my back that indicates too much pressure has been applied to my fragile skin, and I’m told I won’t be able to be up in my chair until it goes away several hours later.
On days like these, it’s all I can do to keep myself sane by projecting an intense and self-consciously positive mindset. So if I’ve led you to believe that my life is easy-peasy, that’s probably a vestige of my (self-preserving) reflex to always look on the bright side and not dwell on the negative. It should not be taken as proof that there is not much negative to be had in my life.
I don’t find the burden of helping other onerous. It seems that you have taken my lack of desire to be a “spokesperson” and an “advocate” for the disabled community at large as tantamount to a lack of desire to help any other disabled person, period. I don’t as a matter of conscience talk about the philanthropic things I’m involved in (and I still won’t, now). But I come from a family where generosity and service were emphasized in the extreme (how do you think my brothers turned out so great?), and I haven’t abandoned those values as an adult.
I’d be curious as to how precisely you think I’m off the mark with my analogies. I thought they were quite apt.
It upset me to see you use the word “shame.” I don’t feel ashamed that I’m not being interviewed on the Today show and shopping a book and pimping a “handicapped” jewelery line on QVC. Which is what I hear when people tell me I should be a “spokesperson” for disabled people. But perhaps that’s not your vision. Regardless, even with the most literal reading of your words, you assume that I don’t give any “validation” or “attention” to others in the disabled community. But you would be wrong.
I don’t know you from Adam, so I really can’t speculate on what your experiences with disability have been. But when I hear comments like these from AB people, they come off as extremely patronizing. I think to myself, “How do you know what disabled people need? And, if you’re such an expert on disabled people’s needs, why don’t you do something about it? You’re the one with the fully functioning body, after all.”
Again, I am the person who least enjoys a discussion of my struggles and inabilities. So perhaps I’ve come off as the untouchable quad. But the ugly fact is, you don’t “rise above the realities” of high quadriplegia. You cope. You adapt. You lower your expectations. All of which I have done. Doesn’t make my life easier, objectively, but it does help me on a subjective level.
As for me being able to effectively articulate what “they” are going through? With all due respect, you don’t know me at all. You’ve read my writing, but I could be an absolutely sht public speaker, for all you know. Or a drug addict. Or just really socially inept. Or a btch.
Plus, I don’t know what every other disabled person is going through. When I started this thread, I blurted out off the bat that I could only speak for my own experience. Where my factual knowledge drifts into personal experience, I’ve tried to diligently note that I’m only speaking for myself.
Could there be any legitimate reason for not becoming a spokesperson for every cause one comes across in life? Your words make it sound like there isn’t. If you can, you should. But I don’t agree with that. There are a lot of things in life I could do, but I won’t. Because saying “yes” to one thing always necessitates saying “no” to another. I say “yes” to the life I’ve crafted with blood, sweat, and tears. I say “no” to responsibilities foisted upon me by people who have no right to tell me what I ought or ought not to be doing. I feel no moral twinge from that, because I cannot do everything. No person can, but I especially have certain limitations that make choosiness essential to leading a life I can be proud and happy to live.
To be clear, I’m not talking about doing small acts of service where you can; I’m talking about this idea that I have to be some public face for cripples in order to justify my existence. Because, honestly, you’re not the first person to say things like this to me. I am usually gracious when I’m told that I should write a book…all 8,000 times I’ve been told that, by people who hardly know me, let alone if I’m even literate. The assumption is that I must do something extraordinary (their version of extraordinary) because my life is different than theirs.
But I really got the feeling from your whole post that I should feel bad that I’m not out there with my face in magazines or on TV, tirelessly speaking out for disabled people. And I’m offended that you assume that I’m not “out fighting the good fight.” You don’t know what I’m out doing, and even if you did, it’s not your place to tell me if it’s good or not.
Fact is, I often feel like AB people have been telling me what to do since I got hurt. First, it was all the things that I couldn’t or wouldn’t ever do again (not all of which were accurate). Then, once I got (fought) to a state of equilibrium with my disability, I started getting nudges to write a book, become a public speaker, get famous for being a quadriplegic. What if I just want to have a normal life? A private life that would be disrupted by taking on a public role? Is that not okay? I lost so many things in my accident; did I also lose my right to decide for myself what to do with my life?
I don’t know if I’ve articulated myself well enough for you to understand where I’m coming from. Again, I’m not angry anymore, and I hope you won’t take anything that I’ve said personally. Likely, much of your post was prompted by my perhaps inept answer to your original question, where I may have made myself out to be something I’m not (which is to say, callously unconcerned about other disabled people). You’ve clearly hit a nerve (hard to do with a quadriplegic, har har), and I’m probably speaking as much to you as to everyone in my life that has ever taken this kind of position with me.
Additionally, everything I’ve written here can be taken at face value, with no underlying sarcasm implied. I wrote it very sincerely, so I hope nothing comes off as snarky or rude.
It seems to me (in the should or shouldn’t the disabled overachiever become a disability “advocate”) that the disabled living very ordinary lives in as ordinary a way as possible, going out with friends and having a job and so forth is just as important as the celebrity disabled who chat with the TV talking heads, go on book tours, and so forth. That is, after all, the goal of all that disability advocacy. It’s not to turn all the disabled people into celebrity spokespeople but to integrate them into ordinary life to the extent possible.
If the only time people see disabled folks is on TV or on book tours then they still won’t be part of daily life. If they have disabled co-workers, see them at the local coffee shop, and (in umkay’s case) go skydiving with them then the disabled become part of the fabric of ordinary life, which is as it should be.
It’s just as important for the disabled to be plain old ordinary folks living ordinary lives as it is for them to go out and wheel their chairs up onto soapboxes.
Here’s the thing - it wasn’t that long ago a disabled person would have been warehoused in a medical institution or hidden in the back room of a house because, after all, they can’t do anything, right? (My spouse is old enough to remember those days, and to have been subjected to some of that sort of treatment even though he is not, compared to some others here, all that disabled) Probably not surprisingly they didn’t tend to live long, aside from issues of proper care, because if you’re essentially locked in a room most of the day with nothing to do you might just give up on living. And that was accepted as normal and right by the vast majority. When we, as a society, had a change in thinking and more and more disabled people got out of those back rooms and institutions and into daily life then it was no longer “obvious” that they should be hidden or warehoused. More and more the notion is that not only can the disabled get out and about but that they should be out and about. Warehouse a kid with paraplegia and don’t bother to school them? That would cause outrage today, and not only that, it’s now illegal to deny the disabled an education (when my spouse was in primary school it was, in fact, perfectly legal to simply not bother to educate a disabled child).
Which is not to say things are perfect today. They aren’t, far from it, but there has been progress over the past few decades. That progress, as much as the family resources umkay enjoys, is why she can have a pretty normal life in many respects even as a quad. There’s no point to that sort of progress if people can’t use it, if they have to become “disability advocates” rather than choose to live their lives in happy obscurity.
My spouse had to fight for the right to finish high school (and wound up getting a GED instead - long story), he had to fight to stay in college, had to fight to get hired, was frequently paid less than anyone else with the same skills, and basically put up with a lot of shit early in his life. He’s absolutely tickled pink when some disabled person is out there living a decent life without having to struggle for every damn thing. And still, every once in awhile, surprised when his disability isn’t held against him.
Just to respond to this comment, because I have have been reading your words here and thinking I’d buy the book.
Undoubtedly you’re correct – the random stranger who pipes up with his book idea is coming from – charitably – a place of ignorance.
But I’m not, in one important respect: the only way I know you, and the only judgement I can make about you, comes from your written word.
I’v earlier said how compelling reading your prose is – not simply because of the subject matter, but because of your voice.
I don’t need to make an ungrounded assumption that you can do something extraordinary – I can see it for myself. And the extraordinary thing I’m picturing when I say that is not managing life as a quad – yes, yes, you’re fantastic at that as well – but that’s not what I’m seeing and responding to. The extraordinary thing I’m responding to is your ability to draw the reader in, to captivate and enlighten and entertain and touch.
This is not a feature of being wheeled instead of feeted. This is a feature of being a damn fine writer. And when I read anything I think is written by a damn fine writer that isn’t already a book, my first reaction is usually to say, “You should write a book.”
So what I’m telling you is that you should write a book. I don’t say it should be an autobiography; I don’t say it should be a paean to overcoming the adversity of injury. I say you should write a book because you’re a damn fine writer.
Now, if it turns out that there’s only one story to tell inside of you – that your ability to write only flowers when it’s about you and your life – then, my mistake.
I think this thread has borne out evidence that you’re a really interesting person to read from/talk to, and that you also have a disability. I strongly suspect that prior to your injury, and adjusting for life experience and any maturity that may (or may not ) have happened since your teenage years, you were just as interesting and enjoyable.
One of my friends, Dave Shannon, wrote a book: SIX DEGREES OF DIGNITY Disability in an Age of Freedom. Dave’s the sort of person who moves society forward (for example, he’s head of a provincial human rights commission), and he’s a quad, so it was pretty much inevitable that he would publish in the human rights and disability field.
Where Dave touched my life was not through his publication, but rather through his interaction with me and others our town. I in my dilapidated pimp mobile and Dave in his chair dragging down the street in a snowstorm. Dave commanding the courtroom with a quiet voice, and succeeding in negotiations by listening. Dave being patient while stuck on our office lift. By being out and about in the community, and by being an exemplar of courtesy, amiability, and determination, Dave has shown me and many others something of his life as a quad, and through this we came to learn of many of the ways in which our society needs to do a better job and making it possible for people with disabilities to thrive rather than be hampered.
Dave has brought attention to social issues to a wider audience through his publication, his media appearances, and his adventures (across Canada in a chair – rolled it in a ditch, by a sled pulled by another of our friends to the magnetic north pole, and skydiving – although he broke a hip), but ultimately it all comes back to who he is as a person, with his own unique insights and abilities.
I think that everyone has his or her own set of talents and skills, and these usually are related to that person’s background and interests, but the flip side of the coin is that writing is not for everyone, and for those who do write, it often takes much of that person’s lifespan to get to the point of being ready to write. The same can be said for public speaking, or for event coordination, or for fundraising, or for any number of ways that a person can help move society forward.
If a person can advocate through one of these various ways, wonderful, however, I think that the most important advocacy that a person can do is to interact with others on a personal level, for it is one by one that we learn and grow, and as we do so, we then change our society. umkay’s putting this thread forward is excellent advocacy.
umkay, despite all disclaimers from those admiring your writing and ‘‘voice’’, do you still reserve some doubt, because there might be this pity angle? Even if it isn’t intentional, do you wonder still?
This is bound to tick off people who overestimate their ability to be objective.
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You kind of hinted at this earlier on in the thread, but I was wondering if you’d feel comfortable expanding on how much you’d expect or want a long term partner/spouse to do for you. I am assuming you’d still keep carers around for many things, but that (rightfully) you’d want the love of your life to do some things for you as well, just as any loving couple does mundane, necessary stuff for one another. Are there certain tasks you’d want your mate to do for you, and those you’d reserve for your carers, or would you even want carers at all?
It just absolutely breaks my heart to hear about how you’ve had the good fortune to fall in love twice, only to have your heart broken by guys who for some reasons weren’t comfortable in committing themselves to someone with your disability. I know this is deeply personal and probably painful, so please feel free to just ignore it, but if you do feel comfortable going into more detail about why these guys didn’t work out for you, and what you’d want in a future mate, I’m deeply curious.
Also, just so you know I’m not being creepy, I’m happily gay and deeply devoted to my boyfriend, so these questions don’t come from any self-serving purpose.
Ok and now here’s probably a pointless and stupid question, but if it tickles your curiosity, go ahead and answer. If you could trade your spinal cord injury for being 100% blind and deaf instead, would you make that trade? (I feel slightly evil even asking this, so I apologize in advance.)
[Emphasis mine]. Oh, Broomstick, you are amazing. This is precisely the thought that was niggling at the back of my brain when I was writing that post. I couldn’t find a way to articulate it, but here you’ve gone and done it for me. Thank you! And hey–have you ever thought about writing a book?
I just wanted to say that you don’t owe anybody anything. You’ve been dealt a really shitty deal in life and you’re doing the best you can with it. I also think that you don’t need to feel bad or apologize for being born into a family that has the funds to help take care of you properly.
I’m pretty sure you’d gladly trade wealth for the ability to have a fully functioning body.
