Ask the Girl in the Wheelchair

To focus this question a little better: how do you feel about the caregivers who are not presently around you?

You, the one looking at this, you’re awesome. A+. We’re talking about the other ones. Lazy, no-good halfwits. Not you, you deserve a raise. And your teeth look great! What toothpaste do you use?

I don’t know if you flew before your accident or not, but airlines really have referred to the AB crowd as “self-loading cargo” - us walking types don’t get treated well either so I’d be flabbergasted if you said anything other than what you did. That doesn’t make it OK, of course, but airline “customer service” seems to universally suck.

Ambivalid early in his posting career here posted a vitriolic rant about how airlines treat the disabled, don’t know if you’d be interested in reading it or not. His situation is different than yours but I think he captured some of the essential indignity of the flying experience.

Thanks. What strikes me is that you seem so conscientious about monitoring your own thought processes for self-pity that I would think it would be difficult to keep this habit from spilling over into your ability to sympathize with other’s self-pity. I know this is a big challenge for me. I don’t have a philosophy for working through it, though.

Follow up question, to tie in to the eating part. If you have a caregiver (instead of a date or friend or family) helping you eat, do they have a meal at the same time? Or is it considered bad form?
-D/a

Can I ask about your financial situation? You mentioned above that you live in a separate house on your parents’ property and you have 4 carers. That indicates that your parents are well off, or at least have awesome insurance. :smiley: Do you ever wonder what your quality of life would be if you didn’t have that great insurance access? I’m not American so I don’t know the system in-depth, what happened when you aged out of your parents’ insurance? Have you ever had trouble getting coverage?

When you are out somewhere and you must use the restroom, how does that work? I’m assuming you need your carer (or whomever is with you) to assist you and this would entail following you into the public restroom. Given the already shitty conditions that serve as “accessible” for just one person (and wheelchair) in many establishments, how do you handle these situations?
ETA: And what happens if the person you are with is not of the same-sex? (I’m thinking dates here)

I’m definitely not trying to make you feel like a ‘hypocrite’ lol. I just ask because it’s a fascinating subject to me. Why would a relationship with an AB guy be any more “normal” than one with a disabled guy? Or “secure”? What do you mean by these terms?

How do you pick your carers? Is there something specific you look for? Do you work with an agency? Does someone else screen candidates for you and then give you a few choices?

This is a most interesting thread. Thanks for sharing your experiences with us.

Interesting question.

Things that have improved:

Power chairs are always being refined, and each wheelchair I’ve had has had more features, been more integrated with environmental controls in my house, been more maneuverable, and had better battery life/speed/power.

Environmental control units (ECUs) are now virtually unlimited in what they can assist me with: my computer, turning on air/heat, operating my TV, flipping on lights/fans, and opening doors.

Bluetooth has been very helpful for phone calls. (And, yes, this makes me the douchebag who wears a bluetooth almost all the time, but I hope you’ll give me credit for extenuating circumstances). :wink:

Computers in general have always been great for people with mobility or communication issues, and they’ve only gotten better. Specifically, speech recognition software is a billion times better than it was when I was first injured.

Things I’m looking forward to:

I hear rumors about self-driving cars. Not even for disabled people–just for anyone who feels safer with a robot at the wheel or who likes to work on spreadsheets on their commute. I’d love to be able to drive my own car.

The brain-computer interface that someone else mentioned is also really promising. If I could use it to, say, control a robotic arm or two–wow. I would basically be able to live completely independently.

LOL. For the record I’m not always dictating. I just told my attendant to take fifteen while I handle this with my speech software. I like my caregivers. Specifically I appreciate the freedom having them around gives me. I’d hate to have to rely on family and friends as primary caregivers. I wouldn’t hire an attendant I didn’t think I’d enjoy spending a lot of time with. But they definitely don’t have to be best friend material to get a job here. They do have to be professional, well trained, discrete, honest, patient, and kind. I get them through an agency I’ve been working with for years, though I ultimately have the final say in hiring or firing since they are my employees.

I think I probably do have a lower than average tolerance for whinging. But the point I was making is that I don’t think it has anything to do with my disability, you know?

If it’s a normal mealtime, it doesn’t bother me if my paid employees eat with me. As long as they don’t get so involved in their spaghetti bolognese to help me out, I don’t have a problem with it. But I often eat at non-standard mealtimes, so it’s more common for it just to be my helper feeding me.

I could’ve sworn you were American, asking about money. :wink:

To use the technical term, my parents are loaded. And I am grateful for it every single day. If money has the ability to make a typical person’s life 10x easier, it has the ability to utterly transform a high quad’s. I’m very aware that my life is actually a lot better than many of my peer’s.

When I hit 18, I was dropped from my parents’ excellent insurance. I had already been declared “totally” disabled (ha!) some years earlier by the government, but all that had really meant was a label, since my parents’ income is too high to qualify for any monetary assistance. Which is how it should be, obviously. However, once I became an adult, the label was helpful, since I did receive SSDI benefits through college. I didn’t see it as mooching off the government, because I was an adult and didn’t want to have to rely on my parents for absolutely everything. Besides, I was getting a degree in the hopes of one day being self-sufficient. Once I graduated, I started working for one of my brothers (which I still do) and made enough money that the SSDI benefits went away again. Of which I am rather proud. :smiley: I get my health insurance through a group plan at work, so they can’t deny me coverage.

When you dream, are you able-bodied? or has your disability become such a part of your “self” that it persists even when dreaming?

Ahhh, good question!

Do you joke about your situation often? Or make light of it? Do other people?

Interesting thread.

I can vouch on a first hand basis how the affluent are privy to a level of health care that is unattainable to others. But that’s for another thread.

So I have a few questions:

On the financial side: What percentage of your expenses are you able to cover through income? Do you get assistance or contributions from charitable organizations?

On the sexual side: Your description of orgasms is fascinating. If you could market that you could put Viagra and a lot of shysters out of business. So here’s my question. What about pornography? Is that a useful tool? Maybe you are adverse to it which is fine but what about others with a physical condition such as your own? Is that a useful tool for sexual satisfaction and can it generate similar orgasms?

On hunger: Again, your description of hunger is fascinating. I never would have guessed. So how does that work in respect to calorie control? Do you have a weight problem or battle a weight problem? Do you have to have a special diet? Obesity is a huge problem with AB people because they can’t control hunger and their diet. How does all of that work for you. Is your upper body hunger trigger a better gauge than what AB people rely on? Again, if that’s the case and you can market it, you will be richer than Zuckerberg.

A wonderful thread. Thank you.

Do your cousin and brothers have “survivor’s guilt” (can’t think of a better term), or did they after your injury? Do/did they believe they should have acted differently?

More nuanced: If they do/did, do you feel guilty about it? If you’re content/accepting of your reality and you look into the eyes of a loved one who feels he’s responsible for your “plight,” do your thoughts turn inward or outward? Both? Has your reaction changed since the low point after your injury, or has it always been the same?

No questions but I am really learning a lot from this thread… Thanks for being so willing to share your “bidness.”

What do you think about this one? Some people I work with are excited about it because they think it’ll help some of the folks our programs assist.