Thank you for doing this, and answering all of these questions. It is very illuminating. I have a few questions for you:
You mentioned that all of your caregivers were female. Would you, or have you ever had any male caregivers? Are you current caregivers all similar in any other ways (eg. age, race, personality)?
Do you feel any responsibility, or desire to be an advocate for disabled people? Why or why not?
Do you feel like you are part of the disabled community? If not, do you think your financial resources make it harder for you to relate to others with similar injuries?
You seemed to intimate earlier that you thought your coworkers and clients would care if they found out you were disabled. Assuming that is correct, why do you think that would be the case?
Do you know or spend time with any other disabled people?
I would never have a male caregiver. My care is far too personal for me to feel comfortable with that. It’s not like having a gentleman OB/GYN; it’s way more intimate than that. Plus, dudes suck at hair and makeup (I know–my brothers have tried).
And no, I don’t have a “type” for caregivers. LOL. They range in age from, oh let’s think here, early 20s to late 40s or so (any younger and they’re still in college, which is a pain for scheduling; any older and they have trouble dressing and lifting me). All different races and cultures are welcome, but she absolutely must understand and speak English clear as a bell. After all, I’m not great with hand gestures. :rolleyes:
Further, I prefer the really great RNs during the day, when most of my medical stuff comes up. Evenings, I just need someone with at least a CNA who can type like the dickens and cooks well (food prep is one of the things my nighttime carers do while I’m asleep).
Meh. I mean, if I come up against discrimination in my own life (whether against me or someone else with a disability), you’d better believe I’m going to do something about it. But, do I have a major sense of responsibility to the world to be some kind of spokesperson? No, not really. It’s not that I don’t care about other people with disabilities, but it’s just that I have other goals that I’m working on.
To reverse the question, that’s like asking an AB woman if she feels a responsibility to advocate for women oppressed under skewed interpretations of Islamic law in Arab countries. Or if a guy who has a cat feels a responsibility to join PETA and the fight against animal cruelty. Or, for that matter, if any given human being feels the onus to advocate for human rights in places around the world where they’re being violated. I think most people would say that it’s not that they’re indifferent or hostile to those causes, but that they’re just not the focus of their lives (whether that’s right or wrong). Besides, many wonder how they could do anything for those causes that would actually be effective, while still taking care of their own “stuff.”
Good question, though. I hope I don’t sound like I’m taking you to task.
Being disabled is a part of my identity, for sure. But I wouldn’t say I am a part of a disabled “community.”
I don’t like to think this way, but it may have something to do with the fact that I live pretty high on the hog for a quadriplegic; my life is charmed, as I’ve admitted with gratitude and chagrin. Many of the quads with whom I would identify, injury-wise, are just not out in society as much as I am able to be.
However, I wouldn’t blame it all on my resources. If I meet a fellow chair-user when I’m out, I’ll definitely say “hey.” But, often, our wheelchairs are pretty much the extent of what we have in common. Again, I’ll reverse it: Do all blonde women become part of a blonde community? Black men? Dog-lovers?
Did I? I definitely didn’t mean to. I don’t care who knows I’m a quadriplegic; I’m not embarrassed about it. But if it doesn’t come up naturally in a phone or email conversation at work, I’m certainly not going to go out of my way to inject it. My disability is a part of me, but it’s hardly the most interesting or salient detail of my life (I think, anyway–this thread may bear evidence to the contrary :dubious:).
So my clients, for the most part, don’t know, because I almost never meet them face-to-face. But my coworkers definitely know I use a chair. Their boss is my big brother, and he’s got family pictures in his office. And though I don’t work in the office with them on a daily basis, that’s only because my voice software doesn’t work well in a noisy environment. But I do go in a couple times a week for meetings or lunches or what-have-you. Or happy hour.
Occasionally. I do have a few friends who use chairs (I don’t know anyone with any other major disability than paralysis). But most of my friends are AB. Not by design or anything; that’s just the way it’s worked out.
Thanks for the reply. I agree that ‘going for coffee’ doesn’t have to literally mean going for coffee, but it usually does mean to me going for a hot beverage, probably with caffeine. I didn’t even think about using a straw for this - it makes sense, but drinking something hot with a straw has always seemed like a recipe for burning your mouth.
I don’t know what the Horizon Vanilla Milk things are, but I do know about Frappuccinos. And I even drink the (very delicious) vanilla bean one from time to time, though up here in Seattle, the ability to enjoy a frozen beverage is more seasonally limited than it probably is in your part of the country..
My, yes, I can certainly follow your lead there, but the main point I was trying to make is that everyone seems so darn focused on walking when someone is paralyzed, as if that is THE most important thing in the world. As you have noted, being able to feed oneself or “scratch my own freaking nose” is a much more practical concern and arguably sooooo much more important than whether you walk or wheel.
But I guess for most people a TV actor exclaiming “I CAN SCRATCH MY OWN NOSE!” just doesn’t have the drama of the poor cripple rising slowly and courageously out of the chair to a background fanfare of horns erupting with heroic chords.
Thanks all, for your concern, advice, thoughts etc. Sorry I haven’t been around. Silly few days.
I do have another question for you, Umkay. I don’t think it’s been asked.
When you were say, 5 or 6, what did you want to be when you grew up? When you were 14? Now?
You’re obviously not dwelling on “what coulda beens.” I just wonder because you’re seem so driven now. Were you always? Would you have been our first snowboarding female president? Or gone into the family business? Or something completely different?
Are you more driven now then you were, because of your injury?
Thanks for such a fantastic thread, umkay. You’re an amazing writer.
If you’re not sick to death of all our questions, I have some more. I was thinking about how you drive your chair with a sip and puff control, and wondered if that meant the entire time you’re in motion you have to be actively controlling the chair with your mouth right? So, no talking while moving, is that right?
Can your carers control your chair, say if you’re sleepy or something. Being a power chair, I’d imagine it’s quite heavy, so not easy to push but are there alternate controls? If you’re heading to that coffee shop with a friend, for instance, is there no chatting while en route because your mouth is controlling the chair, or is it okay if your friend drives and the two of you can then talk.
You have reviled to us the fact that you need someone to scratch your head or any part of you neck up if need be. You have found satisfying ways to be intimate. You shared with us the touch of a friend on you shoulder and a hug and I can only imagine that you still have a warm feeling if a loved one holds your hand.
Touch is a major part of our lives. Even is it is just scratching an itch or rubbing a sore neck.Even if I am in the throws of a fresh relationship I am constantly touching myself even more than my partner. Not specifically sexual. and you have addressed that. I have noticed reading this thread how often I touch my own face.Not just for itches and such. I have noticed it is calming to me to brush my face or hair or rub the back of my neck a tad rub my eyes. My hand seems to derive at least part of the satisfaction.
I guess I am trying to get to a point. Do you ever have someone use your hands to touch your own face or hair. If so is it comforting? Is it a luxury as I am feeling my capability is now. Does it feel the same as anthers touch? If you were blindfolded would you be able to tell it was your hand?
Or it touch with your own hands a forgotten pleasure or the lack of it an accepted reality that both you and your body have adapted to?
I was in a car accident 12 years ago. I ruptured my aorta in the accident and it was the emergency surgery to repair that ruptured aorta that ultimately paralyzed me. In order to stop the internal hemmorhaging, a clamp had to be put on the ruptured aorta; which also stopped all blood and oxygen from reaching my spinal cord past the T-10/12 vertebrae.
The clamp was on long enough (62 minutes) for certain nerves to die. These nerves turned out to be almost exclusively motor function nerves; my sensation nerves are almost entirely spared. I say “turned out” because the only was to really diagnose my ultimate condition was to ‘wait and see’. This is because the doctors really didn’t know what the outcome was going to be either; just what the risks were. So I am a relatively rare motor complete but sensation incomplete; usually it’s just the opposite: motor incomplete but sensation complete.
I have many strange “quirks” as a result of my relatively unusual paralysis. It’s the reason I’ve adopted “blessed but cursed” as my ‘logo’. I don’t have to deal with many of the chronic issues and problems faced by many paras and quads, however the issues I do encounter are so rare that I am totally on my own dealing with them.
Ruptured aorta?! Wow, it’s amazing you’re alive to tell the tale.
I imagine the uniqueness of your situation would be helpful for docs if another person were to have the same or similar specific condition.
Back to umkay, I have four more questions for her. I don’t think we’ve explored these yet, but please correct as needed.
What is your stance on stem cell research? You clearly expressed being grateful there’s practically no hope of restoring your ability to walk, so to paraphrase, your gratefulness comes at least in part from an easy decision for you to enjoy living for today instead of anxiously awaiting a miracle fix that might never come tomorrow. But do you have a position on this topic? (And I hope I accurately captured your views you expressed here. I don’t want to misspeak on our behalf.)
What do you think about Christopher Reeve’s experience, how he handled his accident and aftermath, and how he campaigned on behalf of people in chairs? I asked earlier of Jill Kinmont Boothe, and thanks for that answer.
Any interests in becoming an actress? There was talk in this thread about the poor portrayal of people in chairs by AB actors, and it’s clear to me you are definitely attractive - an inner beauty that can’t help but radiate out based on what we’ve learned about you here: your healthy attitude, positive outlook on life, humility expressed here, ability to express your gratefulness for the nature of your injury (refer to stem cell, above), your humor, your loving family that’s formed a solid foundation for you, your blunt and open honesty, and your adventurous spirit. Those attributes definitely make you an attractive person, and no, I’m not putting you on a pedestal. You just sound decent and solid and mostly happy. Coupled with an apparent likeness to Claire Coffee, you apparently have a physical beauty that attempts to match your awesome inner beauty. So, acting: any interest in being one who could enlighten more of the general public by being on the silver screen, and on the red carpet at the Academy Awards?
It’s Oscar night, and I can hear some effeminate gay man’s voice saying, “Oooooh, and here comes the lovely umkay. What a lovely green dress! She pirouettes in her chair on the red carpet. And that hair, that hair! On her arm is Sam Worthington, and while my eyes are drinking him up, the rest of the public has their eyes glued to the absolutely stunning umkay!”
Okay, I ran with that a bit but I’m serious about the question.
Last question, for now: if you have an apparent likeness to Claire Coffee, do you also look like Kelly Preston? She’s older, so I’m thinking of a young Kelly Preston.
Thanks again, umkay, you’re compelling and interesting to talk with.
You mentioned that your food prep gets done at night by one of your attendants while you’re sleeping. I would assume that you are usually the one deciding what gets prepared–how do you make those arrangements? A weekly menu planning session? If your nighttime attendant is one who enjoys cooking, do you just tell her what you do and don’t like and give her the freedom to cook whatever?
I think that’s the point though. You clearly have the means and fortune to be able to take care your own stuff without much struggle, which makes the burden of helping others far less onerous, and far more compelling (I would think).
With all due respect, I think your analogies are off the mark. I certainly would not say you have a duty to help others like you, but I think it’s a shame that you don’t feel compelled to use your good fortune to give others with similar conditions (but fewer resources) validation and attention. I think that is part of the reason so many here have rightfully complemented your candor and perspective in this thread. The disabled community could certainly use an effective spokesperson like yourself. I think it’s great you can rise above the realities of your condition, but the others that can’t often don’t have a person speaking for them that can, broadly speaking, effectively articulate what they are going through.
I think they might feel more compelled to do so if they had the ability to effectively address an overlooked problem that theoretically affects them and others (superficially) like them. Again, I don’t want to make it seem like you should feel bad because you are not out fighting the good fight, but I think it would be great if you were able to educate others the same way you have in this thread.
I would have to say that both of these principles-being compelled to advocate for worldwide (or however large the magnitude) change and the having the determination to work towards that change in spite of seemingly impossible odds-are exactly what real advocacy is all about.
Ambivalid is the second person I’ve met (via internet) who survived a ruptured aorta. A pilot on final approach to an airfield spun in and crashed from about 400 feet, which is pretty darn close to certain death. He happened to crash right in front of two guys who just happened to be paramedics who were getting ready to go fly themselves. Similar situation - they had to clamp his lower aorta in order to save his life. As far as I know, though, he suffered complete sensory and motor loss.
About a year and half later he renewed his pilot’s license and as far as I know he’s still flying.
Like many little girls growing up on Southern California, I wanted to be an actress at 5 years old. That, or a veterinarian. Or marine biologist. Or Barbie.
At 14, I didn’t have a defined career path (pretty normal for an 8th grader). But I wouldn’t have been surprised, had my accident never happened, if I had gotten into competitive athletics. Had I not had the chops for that, I might have become a personal or athletic trainer.
Now? I like my job and I’m good at it. But I think I would really like to become a therapist eventually.
I honestly have no idea. That’s the thing with “coulda beens:” It “coulda been” good or it “coulda been” bad. You know? That’s why I don’t waste much time thinking like that. I enjoy my life now, and since I can’t change it, that’s good enough for me.
Hm. Hard to say. I was only 14. I loved sports and routinely pushed the limits of my body (thus my accident…). But I put in half-effort at schoolwork. So, probably, I would have been a jock for the rest of my life, instead of becoming a “brain.” Probably. But who knows?
