How "disabled" are you by your disability?

[snowyh]

I'm a right forequarter amputee (arm, shoulder, collar bone & shoulder blade all gone).

Functionally, I'd say I'm about 10% disabled. Biggest problem is doing things in the kitchen--cutting/slicing/dicing/shredding/peeling, transferring heavy pots, etc. I also have trouble picking up large objects (even empty boxes) and catching items that are airborne (balls, etc.).

My kingdom for a shoulder! Not having a shoulder limits my fashion choices. I can't wear anything that doesn't have a high neckline--it either slides off my non-shoulder (if I'm not wearing my pros) or reveals the prosthesis. The only time I wear my prosthesis (a passive shoulder) is to enable me to wear slinky fabrics or suit jackets--weddings, funerals & job interviews. Other than for special occasions it's too much trouble & discomfort.

Socially, I'm closer to being 30% disabled. As my amputation is very visible, it's always going to be a factor in social situations. Missing my right hand makes it awkward when someone offers me their hand to shake (I shake their right hand with my left). I found out the hard way that having all four limbs intact is an important quality in a potential mate for many who join online dating sites.

Economically, I've not been too negatively impacted. My choice of work is cerebral rather than physical, or my answer would be different (I'm an accountant). However, I'll never know how many jobs I wasn't offered because my disability makes some people uncomfortable--thankfully, it doesn't seem to make a difference to most folks.

Recreationally, I have about a 40-60% impairment. Swimming, rowing, climbing rock-walls (or any vertical surface), swinging a bat or club, playing a musical instrument, using certain gym equipment--all give me trouble.

Overall, I can do pretty much anything I set my mind to, even though I'm often slower than someone with two hands.

Helen

[bluedogz]

Oct 10, 2009 13:07:20 GMT -7 snowyh said:

I'm a right forequarter amputee (arm, shoulder, collar bone & shoulder blade all gone).

Functionally, I'd say I'm about 10% disabled. Biggest problem is doing things in the kitchen--cutting/slicing/dicing/shredding/peeling, transferring heavy pots, etc. I also have trouble picking up large objects (even empty boxes) and catching items that are airborne (balls, etc.).

Helen, since my amp I've ben working on a video podcast of "the adaptive kitchen"- showing how I adapted both my equipment and techniques to one-handed operation. I'd love for you to be my beta-reviewer, and see if anything helps you out.

I'd have to give a similar weight to my change (more recreationally than socially, for example) but I feel I run less than 10% in each area. Maybe some of that's mental- I'm told I was always a stubborn ****er.

Oct 10, 2009 13:07:20 GMT -7 snowyh said:

Socially, I'm closer to being 30% disabled. As my amputation is very visible, it's always going to be a factor in social situations. Missing my right hand makes it awkward when someone offers me their hand to shake (I shake their right hand with my left). I found out the hard way that having all four limbs intact is an important quality in a potential mate for many who join online dating sites.

After 35 years, haven't you found it's as awkward as the other person makes it? Ironically, I've met lots of regular folks who weren't thrown a curve at all by a left-handed shake, while a c-level executive at a major bank couldn't figure out whether to poop or go blind.

Oct 10, 2009 13:07:20 GMT -7 snowyh said:

Economically, I've not been too negatively impacted. My choice of work is cerebral rather than physical, or my answer would be different (I'm an accountant). However, I'll never know how many jobs I wasn't offered because my disability makes some people uncomfortable--thankfully, it doesn't seem to make a difference to most folks.

I think this ties back to the last bit, but I do agree that I often have that lingering doubt about whether the interviewer told me the real reason for the potential employers' decision.

Oct 10, 2009 13:07:20 GMT -7 snowyh said:

Recreationally, I have about a 40-60% impairment. Swimming, rowing, climbing rock-walls (or any vertical surface), swinging a bat or club, playing a musical instrument, using certain gym equipment--all give me trouble.

Can't help with the rock climbing, but will you be my golf buddy? I took that up since I beat my sister at Guitar Hero. I'm not Tiger Woods, but I stink less than with 2 hands!

Overall, I have to agree that my change has affected me "recreationally" more than anything, but I'd give less than 10% weight to each of your categories. Maybe it's mental- I've been told I've always been a stubborn ****er.

[allenuk]

In some ways being a leg amp isn't so disabling, much of the time, as people don't see underneath your trousers (pants?), whereas for an arm amp it must usually be pretty obvious that you've got something missing.

When my leg is not acting up then I don't feel very disabled at all, maybe only 10% or so. There's a few practical difficulties like scooting up or down stairs (which I can't, and therefore avoid), and I tend not to go to places where I'd have to spend a lot of time standing up, but apart from that it doesn't affect me much.

When my leg IS acting up (as it is now) I feel about 90% disabled, as I have to plan my next moves - do I HAVE to get up and go to the kitchen, or could I leave it for half an hour (for example). Or... I have to cook, as Maggie has got a broken arm, so what can I provide that will not (a) be too stodgy or full of sugar, and (b) will involve the least amount of walking round the kitchen.

Age enters into it in my case, too, and the fact that I'm in a settled long-term relationship. I'm not sure how I'd cope if I was meeting women for the first time and it got to the point of taking off not only my clothes but also bits of me.


Allen. (bka, London).

[ann-]

Well, I've been bilateral b/k for nearly 40 years, and most of the time when I am wearing comfortable prosthetics, don't really 'feel' like I am disabled at all, of course in reality there are things I can't do or perhaps I should say, might do differently.

Trouble is, and its not always recognized by others (specially organizations), that particularly for those of us who are leg amputees, we can go from relatively active and looking unoticeably disabled in a matter of seconds really. I find it really interesting the different reactions I get from people when I am and am not wearing my prosthesis.

[allenuk]

Precisely, Ann. For example, just sitting in the fitting room at the limb-fitting centre - one minute you're (relatively) 'normal', then they take away your leg to adjust it, and wham, you're disabled! You can't get to the toilet, coffee-machine, even just across the room (although the younger and fitter ones hop), and if there was a fire, you'd have to crawl out of the building.

Allen.

[snowyh]

Oct 13, 2009 3:38:31 GMT -7 bluedogz said:

Oct 10, 2009 13:07:20 GMT -7 snowyh said:

Biggest problem is doing things in the kitchen--cutting/slicing/dicing/shredding/peeling, transferring heavy pots, etc.

Helen, since my amp I've ben working on a video podcast of "the adaptive kitchen"- showing how I adapted both my equipment and techniques to one-handed operation. I'd love for you to be my beta-reviewer, and see if anything helps you out.

Blue, I'd love to beta test your video. Even w/35+years' practice under my belt, I'm sure I could still learn a thing or two!

Helen

[armamp95]

It's amazing how much of a variety of coping strategies, gadgets, etc. we all use in the kitchen ... I always learn a trick or three when arm amp talk turns to kitchen techniques!

[lizzie2]

Sorry I'm a bit late replying to this, Helen.

I've had to cope with limb loss from birth, so I brng a slightly different perspective...not easier or more difficult, but different.

You asked an interesting question. My answer is that I'm not disabled by my limb loss, I'm inconvenienced, sometimes, but not disabled. The thing(s) that disable(s) me is/are other people's attitudes.

My reasoning? Well, there's usually a way around a mobility problem or issue (upper or lower limb), but altering people's ignorance is usually an uphill battle...in my experience, anyway.

[Tom]

Oct 13, 2009 5:32:51 GMT -7 allenuk said:

When my leg IS acting up (as it is now) I feel about 90% disabled, as I have to plan my next moves - do I HAVE to get up and go to the kitchen, or could I leave it for half an hour (for example). Or... I have to cook, as Maggie has got a broken arm, so what can I provide that will not (a) be too stodgy or full of sugar, and (b) will involve the least amount of walking round the kitchen.

Allen. (bka, London).

Allan, I've got a bar-stool with a saddle seat (no back) that rolls on five castors that I use to cook with. Works great.

[allenuk]

I wouldn't like to watch you carry a pan of boiling liquid in one hand while you scooted across the kitchen on your chariot

That's the first time I've ever used a smiley, which I thought might aid UK/US understanding, as in the past I've found that our attempts at humour often sink as they cross the pond...


Allen.

[ann58]

Allen,

You're getting HIP

[cherylm]

I absolutely LOVE the rolling barstool idea!! I'm both one-legged and fairly tall...standing at the kitchen counter, over the stove or sink, or having to bend to get into low cabinets or the fridge all make me feel actual, physical pain, as I have to stand for extended periods while bent at an angle that makes my back seize up. Cooking used to be one of my passions, but now it's one I indulge in only occasionally. The one place I still use a wheelchair, every single day, is in my kitchen...and since my kitchen floor measures all of 4'X7', that makes for a very "crowded" little dance! A rolling stool that stood somewhere around 24-26" high would let me perch at a good "counter height" and be able to propel myself around with my feet. Thanks for the idea, valkf6!

Now for your survey, Helen....

Functionally, my "disability" varies throughout the day. On a day where the leg fits well and I'm just doing my normal daily activities, I'd say that maybe I feel 5% or less "disabled." It's an occasional inconvenience, and that's all. At night, I have a small problem, since (even after 5 years of working at it) I still really can't use crutches and some of my apartment doors are too narrow for either wheelchair or walker to pass through. That means that, once I've turned in for the night, if I find I DO have to get up for some reason, I have to put the leg back on. I'm very good at donning my leg in the dark while half-asleep, but it does make me aware of having a disability...I probably feel about 25% disabled in the middle of the night! And like other leg amps, I can go from being "not really disabled" to "seriously impaired" in a matter of seconds if something goes wrong with the leg.

Socially, there's only one area where I feel that my amp even matters...and that's dating. The vast majority of my friends really don't care one way or the other about my limb count. I've only lost one friend, who simply bolted the first time she saw me post-amp and has never reappeared. Everyone else has been varying degrees of "fine" with it. But I've never, never been good at the whole dating thing, and the leg is still an "issue" for me there, because it seems to be an "issue" for a number of possible partners as well. It's an area where I wish I could get myself past my own hang-ups, because I'm sure my own hang-ups contribute to the problem. Sooo.....overall social life: less than 10% disabled; dating life: 70% disabled.

Economically, once the initial financial impact of the amp was past, I've had no major problems. Of course, I was well-settled in my job, and my employer has been great about both helping to support me during my time off work and about making accommodations once I returned. I've been very, very fortunate there! Part of this is because, like Helen, I'm in a position that requires more mental work than physical effort...I'm an executive secretary. The place where I've felt an economic impact has been in my sideline as an artist, where my vision has made an impact in what I can do and how long I can do it at a time. Economically, it's "leg: 5%; eyes: 40%."

Recreationally, my level of "disability" depends on circumstances. Most of the time, it's not a big deal to me, but there are some things I have problems with. I've never been a very good dancer, for example, but I'm REALLY terrible now! (I'm hoping that my new foot might help a bit with that...we'll see!) I used to enjoy hiking, but that's become a very slow and tentative process for me, which makes for conflicts with more agile hiking buddies. And I can no longer walk through shopping malls for hours and hours on end...I need a goodly number of "rest stops" along the way. I'm good at swimming, but still nervous about cycling. Overall, though, my lousy vision is probably more of a disability than my leg...there are some crafts and art projects that I deeply loved which I've had to give up due to my eyesight. My overall "disability" rating: 15% leg; 40% vision!

Interesting survey, Helen!

[mom2noble]

This a great question. My little guy Noble doesnt even know the word disabled! He is walking with little to no limp and running really pretty well after just a short period. The only time that I would really say that Noble is disabled is when he is bathing and just waking up in the morning. He cant just throw on his leg without help. When his leg is on, he can do anything the other kids can do. Without the leg, there is some planing to do. I am wondering how we will do the beach this coming summer. I suppose we will figure it out ;D

[stonecutter]

mom2noble,

Thanks for the update. I'm glad to hear that Noble is adjusting well.

[allenuk]

Holly (noble's mum).

It is so good to hear some GOOD news. Thanks for that. Does Noble tie his own shoe laces? (Not even sure that kids HAVE shoe-laces any more). I was just thinking that once he can do that, he can probably assemble his leg, on the basis that 5-year-olds are smarter than most of us.

Allen, also bka, but a bit older. London

[ann-]

Hi Holly
I am so glad Noble is doing so well. I am sure that Noble won't consider himself to be disabled at all, especially whilst he is growing up and will automatically find different ways of doing things, thats how it was for me when I was young. Like you say its when he doesn't wear his leg it needs some planning, but I am sure he soon will be taking them off and putting them on himself, me after about year I would wear my legs day in day out, although I did have periods I was off them, nowadays I do things a bit differently but thats mainly down to age and responsibilities.

Ann

[stinker373]

I am a bit late here to replying. I am not sure how to measure this because i do almost everything I dod before. The problems that I have are when doing stuff I tend to wear out a leg quicker than if I was just using it for walking. Reality is always around the corner but insurance isn't. Been playing golf for 2 years now and love it and I managed to get under 100 and I feel that os not bad. I also use a cart to get around the course its almost imposible to walk it as a aka.

[allenuk]

I think you have an interesting point, Stinker - and it provokes a different question. Just how much do we modify our new lives so that our disabilities don't impinge upon them? I would have thought quite a lot. But that's just what humans do, isn't it - adapt and survive.

Allen.

[Tom]

Nov 11, 2009 16:59:28 GMT -7 stinker373 said:

Been playing golf for 2 years now and love it and I managed to get under 100 and I feel that os not bad. I also use a cart to get around the course its almost impossible to walk it as a aka.

Golf is my passion too, and my goal was to get back to walking the course (as an LBK), because I believe the game was meant to be walked. It's becoming clear that the damage done by walking seven miles or so to play a round of golf would limit the number of times I could play per week, so I've pretty much given up on that idea. Except I'll do it once, just because.

[allenuk]

Tom: apart from the seven-mile hike round the golf course, how is your general walking ability? At best, I used to do up to 3 miles a day (maximum), but then I got stuck with ill-fitting sockets (or badly shaped stump, never sure which), and it's gone way down over the past few years.

Allen, bka, London.

[Tom]

Nov 14, 2009 5:48:23 GMT -7 allenuk said:

Tom: apart from the seven-mile hike round the golf course, how is your general walking ability? At best, I used to do up to 3 miles a day (maximum), but then I got stuck with ill-fitting sockets (or badly shaped stump, never sure which), and it's gone way down over the past few years.

Allen, bka, London.

Allen, sorry I didn't respond to your message earlier, I haven't figured out how this board software lets you know when that happens and just happened to run across your post when reading "the last 10".

I either play golf or walk a mile or ride a bike for five miles just about every day. My leg and prosthesis are in perfect balance for the time being [knock on wood] , but I'm beginning to think that working on doing more isn't necessarily the best thing for me. I want to stay active and keep my weight down without putting the kind of stress on the limb that will make it deteriorate in any way.

I talked with my leg guy Rick about Oscar Pistorius and how amazing it was that he could perform at such a top level and Rick said I wouldn't even want to know how hard it had to be to keep his legs functioning that well given that level of punishment and stress. So I'm accepting the autumn of my years as gracefully as possible.

[allenuk]

Thanks for that Tom.

A mile a day sounds good, and the 5 mile bike ride similarly. I would like to get back to my 3+ a day walking (it was only 3 years ago), as there are some lovely country walks around here, even if it is NW London.

5 miles on the bike I can still do, but although I enjoy cycling, I'd rather have the walking back - for no other reason than it would mean I could go WITH my partner (not a cyclist), rather than leaving her at home.

Must say you don't look very old in your bike picture, certainly not in the winding-down catogory yet!. I'm early 60s, but having wasted much of my life inside a bottle or inside a loony job (and sometimes both), I am determined to squeeze what I can out of the next (few?) years.

(Yes, on the notification of replies point: it does seem to be a drawback of Proboards. I'll get my mate Stonecutter, who knows these things, to see if he can discover the solution).

Allen, bka, London.

[romeo1414]

Being a bi-lateral leg amp has its drawbacks, but am I real limited as to normal everyday life? Honestly, there are some things I have trouble with at the moment, as I am not stable on my legs enough to stand a lot. Kitchen work is a chore at times, as the counter is not wheelchair friendly, and all that kind of stuff. I get around pretty well, if my chair doesnt fit, I make my own path. I do try to find an alternate route through stores if there is stuff in the way, if there is not, it's there problem for not abiding by the laws for disabled persons...I will make my own path, moving stuff out of my way. I have adapted quite well when it comes to moving through the house, I crawl around to the places my chair wont go.

[ann58]

I think I would like one of those little doctors stools to use when I take my leg off # night. I might tip it over a couple of times, but you wouldn't have far to the floor.

[ann-]

Dec 7, 2009 15:11:28 GMT -7 romeo1414 said:

Being a bi-lateral leg amp has its drawbacks, but am I real limited as to normal everyday life? Honestly, there are some things I have trouble with at the moment, as I am not stable on my legs enough to stand a lot. Kitchen work is a chore at times, as the counter is not wheelchair friendly, and all that kind of stuff. I get around pretty well, if my chair doesnt fit, I make my own path. I do try to find an alternate route through stores if there is stuff in the way, if there is not, it's there problem for not abiding by the laws for disabled persons...I will make my own path, moving stuff out of my way. I have adapted quite well when it comes to moving through the house, I crawl around to the places my chair wont go.

Hi Romeo,
I am bilateral as well, altho both b/k. I expect you will become more stable standing as times goes on.
I had a revision amp last year, so know where you are coming from - I have a bar stool in my kitchen too, with a swivel seat, and initially used to swop from the wheelchair to the bar stool so I could sit at the work surface (though got a bit crowded in the kitchen with the wheelchair too).
But I think making your home as user friendly as you can, so as you can 'mix and match' (as I put it) is vital, as well as this a wheelchair that maneovres in tight spaces.
I have been at this quite a while and raised three children, so not cooking meals or other chores because my legs were playing up was not an option. But there was a time before I got my head around having a wheelchair when I used to use my knees to get around too, but as I get older, the chair is definitely the better option.

Ann