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Below the knee amputation


Mim Lloyd

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Hi

 

Four of us are booked on RCL Serenade of the Seas in February 2007 (southern caribbean). My 44 year old sister had her right leg amputated below the knee a couple of years ago. She has a prosthesis and manages without a wheelchair although she does gets tired and the leg can become painful by the late afternoon.

 

She's a very keen beach and swim person, and has missed being able to swim and snorkel since her amputation. We're keen to visit beaches while away. We'd prefer to just take a taxi rather than an organised ship tour so that we can please ourselves when we come back to the ship, although I think we're going to take some ship boat/snorkel tours. Can someone recommend any particular beaches in St Thomas, St Maarten, Antigua, St Lucia, Barbados?

 

We'd prefer those that have subeds and brollies and won't be too far to walk from the taxi, although she would have her husband, my husband and myself to support her across the sand. A fairly quiet one would also be good as my sister would like to go into the sea to swim. We'd help her down to the water but she'd then have to remove her leg. As you can imagine, this can be embarrassing for her at a busy beach or pool especially when there are a lot of children about.

 

Hope someone has some info!

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I like the destination boards here on cruise critic to help choose excursions. It has always been helpful and then after I read what others have done I e-mail the person I am interested in using and see if they can assist me. We did a day sail from St. Thomas that included two snorkel stops and lunch. I can't remember the name of the boat but for me it was fine. There were steps back to the boat after snorkeling but I did OK. (I've not had an amputation but steps are a problem for me). I hope you have a wonderful cruise.

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Thanks for your reply. My sister would really enjoy a boat trip with a stop for snorkelling - as long as there is help for her to get on and off the boat. I hadn't scrolled down the page enough to see the destination boards(!), but I'll keep checking them out.

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I do not see that may issues:

 

I'd highly recommend a good vest with both oral and CO2 inflation. They are say $40 and higher. The CO2 gas cart is for "emergencies"

 

Her prosthesis tech or rep may be able to get a "cheapo" for water use as who knows what salt water will do to hers. It is not a big issue in those smooth water clear areas, where one can swim in circles and have fun.

 

I grew up in Key West and such as Panama (military brat) I also SCUBA, and

we and Milli are Rehab pros: Physical Therapist and Nurse-Psychologist. We both have "pool therapy" experience at major Rehab hospitals in Texas and Colorado.

 

Joe

 

No, she will not swim in circles, as she can use her arms to steer. The vest will help but so would a small, say a motorcycle inner tube, held with arms extended. Pull back one arm and it will steer well. Any small flotation object will also do as well, say a soccer ball with a "net" over it, you can buy a soccer ball with a net: the net is for practicing and does wonders in the water. But a slight inflation of a snorkeling vest will likely be enough.

 

Be glad to answer more

 

Joe (& Milli)

 

Hospitals: TIRR and Methodist in Texas, Craig SCI & Head Injury in Denver..

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My sister is fine once in the water - you'd never know there was anything wrong with her. It's mainly the getting out that's the problem.

 

Last year we went to Crete for a week. She'd wear a long sarong over her bathing costume and use crutches to support her over the unstable sand to get to her sunbed. When swimming, she'd go down near to the water's edge (with her sarong) supported by her husband and my husband. She'd discretely pop off her leg and use her crutches to get into the water, then pass her sarong and crutches to be taken back to her sunbed.

 

When she wanted to come out, she'd get to the water's edge and be passed her sarong. Then she'd be helped to stand on her good leg and then use her crutches to hop back to her sunbed. She can't put her leg back on at the water as it can't get wet and she has to make sure her stump is fully dried anyway.

 

The worst thing for her is the embarrassment when getting out. Grown adults actually stare and sometimes point at her all the way back to her sunbed. It's very upsetting and ignorant to see. She doesn't mind children staring or asking questions but adults should know better. She hates being made to feel 'different' and ended up last year refusing to swim at all because she felt like a circus freak.

 

She desperately wants to enjoy the water in the caribbean but be as discreet as she can is doing it with her disability.

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My sister is fine once in the water - you'd never know there was anything wrong with her. It's mainly the getting out that's the problem.

 

Last year we went to Crete for a week. She'd wear a long sarong over her bathing costume and use crutches to support her over the unstable sand to get to her sunbed. When swimming, she'd go down near to the water's edge (with her sarong) supported by her husband and my husband. She'd discretely pop off her leg and use her crutches to get into the water, then pass her sarong and crutches to be taken back to her sunbed.

 

When she wanted to come out, she'd get to the water's edge and be passed her sarong. Then she'd be helped to stand on her good leg and then use her crutches to hop back to her sunbed. She can't put her leg back on at the water as it can't get wet and she has to make sure her stump is fully dried anyway.

 

The worst thing for her is the embarrassment when getting out. Grown adults actually stare and sometimes point at her all the way back to her sunbed. It's very upsetting and ignorant to see. She doesn't mind children staring or asking questions but adults should know better. She hates being made to feel 'different' and ended up last year refusing to swim at all because she felt like a circus freak.

 

She desperately wants to enjoy the water in the caribbean but be as discreet as she can is doing it with her disability.

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  • 3 weeks later...

I am a double above knee amputee so I know how she feels. I am not bothered much by the stares anymore though. Last year we took the Sovereign on the Seas and I was in the shallow part of the ocean in CocoCay in a beach wheelchair. It was wonderful!!! We are sailing on the Freedon in August 2007. Let us know how your trip goes!:)

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There might be an option that would allow her to keep her prosthesis on in the water. I had previously posted this on a thread about an above-the-knee amputee who wanted to go cave tubing. Maybe you will find it useful as well? Here is the quote from my original post:

"There's a product called Xerosox that provides waterproof arm and leg cast covers. Their testimonial page gives feedback from a lot of people who have used it for their artificial limbs as well. We used this product last year when my son broke his leg at the beginning of summer and "pool seaon". It really did work for us, and the cost is reasonable (I think about $50). It's very portable, since it is just a thick rubber cover and a little tool that sucks the air out and makes a vacuum seal. Here's some info from their website (http://www.xerosox.com):

 

The Stay Dry Pro Pump by XeroSox offers the only leg and arm cast protection in the world with the patented vacuum seal to keep your bandage or cast dry.

 

It is so completely and totally waterproof, between the waterproof latex and the vacuum seal, that you can even dive off a diving board or ride the ocean waves and still have your cast stay completely dry.

 

The Stay Dry Pro-Pump by XeroSox cover fits snugly yet comfortably against the skin offering cast protection during showering, bathing, swiming or any other water activity. Unlike "modified garbage bag" products, the limb protection offered from the Stay Dry Pro-Pump by XeroSox is unmatched, it cannot slip off. You can't even pull it off!"

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That's great! I'll check it out and see if it's available in Britain.

 

It would also have been handy for me a couple of years ago. I dislocated my knee and my leg was in full plaster for 6 weeks. I couldn't have a proper shower for all that time!

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My hubby is the above-knee amputee that FrogLover advised to use the xerosox. Since DH's ak prosthetic is so high up, xerosox does not make one that long. BUT, a below-knee would be very easily accomodated. We investigated this thoroughly and it appears to be a wonderful idea.

 

DH lost his leg when he was a teenager, so has had to live with the stares and inconvenience for a long time. Yes, it can all be worked out (we've been married for 20 years) and we have always been able to work around the water issues. DH does not have a waterproof leg and I TOTALLY understand the stump needing to be dry prior to refitting the artificial limb. At 23K for a new leg), keeping it dry is always a priority. DH usually hops to the water (and we usually hang out close to the edge of the water for this reason).

 

For our cave tubing trip, we're using Yhonny at Cave-Tubing dot com. Carnival could not, in any way, accomodate this. We purchased an inflatable life boat, a canvas golf bag cover, and waterproofing spray. Hubby will hike to the cave tubing spot using his leg. At the place where we enter the water, he will remove his leg, place in several layered garbage bags, seal with duct tape, place in waterproofed bag, put bag in the boat and the boat will "tube" down the river with us. This way his leg will be with us when we end up down the river. Then, he can put it back on, and we'll be on our merry 'ole way.

 

Is this extreme? Yeah. Is it above and beyond the call of duty? Yeah. But, it's the ONLY way he can participate in the cave tubing with us. We're determined that his AK amputation won't interfere with our activities. (It helps that he's VERY independent.)

 

I do sympathize with the difficulties, really. I get very, very tired of the stares. The stares aren't as bad as the comments. Once I heard someone say "Man, if that was me, I'd shoot myself." It's just crazy. I'd certainly rather be alive and missing a limb, but that's just me. Usually, we chime something back along the lines of "You know? At least my husband can happily continue on his usual routine with the use of an artificial leg. You, on the other hand, will spend the rest of your life being inconsiderate and rude." It generally brings to their attention their comments and they hush up. If they have children, it let's the children know their parent's actions are unacceptable.

 

Don't get discouraged, or let your sister get discouraged. This CAN be worked around. It takes a little effort, but is definitely worth it. Ignore the people (as best you can) and do what you want to do. I believe kharma works in irony. Those same people will someday encounter similar circumstances and be paid back in spades.

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Thank you so much for the supportive and helpful comments. I've printed this whole thread to give to my sister later. She's a bit down at the moment so anything positive is good for her.

 

The Xerosox IS available in the UK and at a reasonable price. She is going to ring them on Monday to get advice on the sizing. She fees it will be SO useful - not only for holidays but for getting a quick shower. She misses being able to quickly pop into the shower. At home she has a bath lift and has to use the over-bath shower as her shower cubicle can't take a stool or foldaway chair.

 

Like you hubby she doesn't have a swim leg. We have free healthcare in Britain which is lucky as my sister is on her 4th leg as she's been having trouble getting a comfortable fit. Swim legs are available but they have to be applied for and you have to prove that your quality of life is worth it. Crazy really when you think about it - if someone wants to improve their fitness by doing some exercise, surely that must improve your quality of life!!

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Be very grateful for your free healthcare. In the U.S., MOST insurances will not cover any other prosthetic but the very first one. After that, you're usually on our own. And at $23,000, about the only way to secure one is by taking out a second mortgage on your home.

 

DH's employer changed insurance companies, and the new company would be pay about 65% of one and that's how we finally (after 17 years) got him a new one. This new one is not as comfortable as his old one. Unfortunately the old one just is not usable any longer. We can't get replacement parts for it, because the technology has changed. There's just not a lot of call for prosthetic limbs, so your choices are quite limited. I understand your sister's problem with fitting. IMHO, the artificial limb manufacturers are NOT as good as they used to be. (You'd think they'd improve w/ time, but that doesn't seem to be the case.)

 

Our insurance will cover a replacement after 5 years and we're just waiting out the two more years until he can get another one. We're probably going to go out-of-state and try those manufacturers to see if we can't find something a little better, when the time comes.

 

I do think the xerosox is a wonderful idea and sorely wish it would have worked for DH. Maybe, after more time, they'll make one for high AK amputees.

 

Please, please don't let your sister get discouraged. If she'd allow herself more time, she'll get accustomed to it. DH is quite nimble without his limb on now. He hops in and out of the shower and requires nothing more than a handrail for stabilization.

 

If your sister needs encouragement, I'd be happy to give you my email and she can email hubby for advice.

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My sister has gone through periods of frustration, anger and depression over the last couple of years since she lost her leg. She's been an inject-insulin diabetic since the age of 7 and lost her leg just below the knee through a blood clot. Diabetics are prone to things like this.

 

It must have been awful for your husband to have lost his leg as a teenage boy. At that age most lads are busy looking forward to life and think they're invincible (my teenagers certainly did!). In my sister's case it's been so life changing. She was always the loud, life-and-soul of any party type of person. She'd be right up there on a table at any karaoke session - microphone in one hand and a vodka and lemonade in the other! I'm the older, sensible sister and knew when the time was right to drag her down!

 

She was (and still is) slim and enjoyed wearing skirts and summer shorts - when the unpredictable weather in Liverpool allowed it that is! She loved swimming and going on holiday all over Europe and, more recently, the States and Caribbean. But now that's all changed for her. Her style of dress has had to change - wider leg pants is what she mainly wears now as the slim leg ones show the lumpy bit of her prosthetic on the knee. Only long skirts, not shorter ones. No more heels or sandals - the leg doesn't have a flexible ankle so she can only wear shoes with a 2cm heel. And no more climbing on pub tables! She's back at work full-time which is difficult. She's the manager of an old stately home (600 years old) in a local country park. Very old buildings are exempt from the disability access laws in Britain so there's no lifts or easy access. She's up and down 3 large flights of stairs all day which is very tiring for her.

 

She was assigned a psychologist at the hospital who warned us all that it would take about 2 years for full acceptance. He said women often take longer than men, partly because of the alteration in dress style and their perception of their own femininity, and also because women are physically weaker than men. She still occasionally wakes up with an itchy toe and automatically leans down to scratch it and remembers that there's nothing there!

 

But we are so lucky to get the free healthcare. I couldn't believe your post when you said the leg costs 23k! I don't know what my sister would have done as she's on her 4th one now. People actually come to Britain from various parts of Europe on supposedly 'holiday trips'. They manage to get themselves into our hospitals for treatment of pre-existing conditions and have their operations, hospital stay, medications and follow-ups all for nothing. Then they go back home. They're known as 'health tourists'.

 

We are really, really looking forward to our cruise next Feb. We're also hoping to go to Vegas in December. My sister has always had a burning ambition to play blackjack in a Vegas casino!!

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Wow! Really? Health tourists? I'd never heard of such a thing!

 

Hubby has often said that he felt very fortunate for the accident to have happened when he was 17. Teenagers are ever so much more adaptable to things.

 

The old-wives-tale is that it takes as many years without the limb to equal the number of years that you had the limb for phantom pains to disappear. I would say this could actually be accurate. We had been married for a number of years before DH's phantom pains went away.

 

When these were a problem (usually in his sleep), he'd moan and get restless and try to massage the missing leg. I'd slide over my leg and put it where his leg would have been. Since he wasn't all the way awake, he wouldn't notice and would start massaging my leg. I honestly don't know if he realized I did this (even to this day). It seemed to help and he'd go right back to sleep.

 

I was thinking about what you said and thought that it seemed logical. It IS a much more dramatic wardrobe change for a female. BUT, have your sister wear whatever she wants. Don't let the artificial limb influence her wardrobe any more than it has to. (It's true, men don't wear high heels and most of all their shoes all have the same sized heel.) Even with hubby's AK prosthethis, you wouldn't believe how many people say "I never realized he had an artificial leg".

 

Her occupation and having to climb 3 flights of stairs would definitely be a problem. Stairs can be mastered, but it will ALWAYS take more effort. No way around it. DH's ankle doesn't bend either. Up-slanting walkways (like wheelchair ramps) are a problem for DH. He'd rather take stairs! (Funny how one disability's necessity makes a hindrance for another!)

 

It's a shame you're not cruising with us on Sunday on The Valor. We could pal up and offer support. You could even cave tube with us, we've got this one in the bag! LOL

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We wish were off with you on Sunday too. We'd have to fight you for the storage back for the cave tubing though. :)

 

It made me laugh reading about you draping your leg over your husband in the night. My sister's husband would be scared to death of doing that in case it gave her ideas! On our cruise around the Greek islands and Turkey last summer she couldn't manage the walkway down to the quaysides (as you say, ramps are not user-friendly to amputees), so we disembarked the ship from the crew/storage entrance. There was usually a small drop down to the quaysides - only about 12-18 inches but enough to trouble my sister. There were always crew members there to help and my sister would always choose the young, hunky one to help her up and down. Then we'd have to prise her hands off him and drag her away!! :D

 

We are really looking forward to our cruise and wish it were sooner, but we've got a week in Tunisia to look forward to in July. It will be hot, hot, hot which is more than you can say for the weather in Britain! (Actually it's not too bad at the moment - warm and sunny, and no RAIN for a week which is a miracle in Northern England!).

 

http://tickers.TickerFactory.com/ezt/d/4;10732;3/st/20060712/e/Holiday+in+Tunisia/dt/6/k/9216/event.png

 

http://tickers.TickerFactory.com/ezt/d/4;10726;128/st/20070210/e/Serenade+of+the+Seas/dt/6/k/00ba/event.png

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I loved the comment about your sister using the hunky crewmember! Definitely a smile maker!

 

I'm just not too sure that DH would like a hunky crewmember helping him! LOL

 

I'm glad that you'll be traveling with your sister, watching over to make sure things are okay. She's lucky to have you.

 

I'll TRY to post over here, on the disability board, when I get back to let you know any thoughts I have. I tend to forget about 'disability'. It's not a term used in our home. DH has always been this way, as long as I've known him. The kids were born, they don't know him any different. We just really, really don't think about it much.

 

I mean, we accomodate it, we make arrangements for it, but it's so ingrained into our thinking, we don't think about it. It's hard to explain.

 

At any rate, note to self: Be sure to post my observations in the disability board.

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  • 2 weeks later...

My opinion of cruising with a disability isn't that high.

 

We're lucky, DH is quite mobile, but even still it was hard for him to get around at times. The elevators were crowded and slow, but 4 flights of stairs just weren't an option for him. (We did it when he wasn't with us.)

 

We ended up abandoning him for the cave tubing trip. We discussed this the night before, had a family pow wow over it and voted. (Of course, ultimately it was his decision.) He ended up going on a fishing excursion and had a good time. I am so glad he didn't go cave tubing. Even with all the arrangements we'd made, he would not have been able to participate in that excursion. If there are any mobility issues, cave tubing is not the excursion for you.

 

At beaches, we would tip some local to get us chairs in the shade. He wore his leg to the water's edge and we dragged a chair to the edge for him to use at the water's edge. He left his leg on that chair, then hopped the few feet to deeper water where he could sit down. We made sure that one of us kept an eye on the chair and his leg. It worked out fine.

 

I was disappointed in the ship's accomodations for handicapped passengers. I only saw a couple of people in wheel chairs. (One of those was a gal who used her chair intermittently and it was a CCL chair.) I have to say that I think a wheelchair bound person would have to posess an enormous amount of patience to navigate around all the people and lines. (Which they probably do posess.)

 

As I said, I only saw a couple of mobility challenged individuals, but I was constantly aware of the problems. It just felt like there were many challenges with stairs. Excepting the floor level of the theater, the other level involved steps just to get a seat.

 

Just my random observations. (Don't eat me alive!)

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But I really hope you had a good cruise despite these observations.

 

The stair problem is one we had last summer. My sister can cope with one flight but any more than that is very slow, tiring and can be painful so she seemed to spend an inordinate amount of time waiting for lifts. Also the ship we were on, althought small and immaculate, was an old refurbished one. Hence there were a lot of bulkhead doors that involved stepping up to get through. This also posed a problem for my husband and brother-in-law on a couple of evenings when they were left alone in a bar. We had a free all-inclusive alcoholic drink package and they made fine use of it. Neither of them could step through the bulkheads unless clinging on to each other! :rolleyes:

 

Good to know you had a good time on the beaches.

 

I think it's a matter of accepting that there will always be some limitations and frustrations and just learning to deal with them as come along.

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yes, the people, the lines, the odd step up or down here and there are all obstacles. And no, most shore excursions are not accessible so you do have to do research and create your own.

 

But I think that cruising is still a largely accessible option, comparitively speaking. I mean if you were to do a similiar holiday in the Caribbean and fly between the islands and stay at different hotels and try to find accessible restaurants every night, I believe you would find many more obstacles and a high hassle factor.

 

Perhaps it's misleading to people when we say that cruising is a very accessible option, as they think it will be totally barrier-free and perfect, and of course it isn't (nothing is).

 

And then of course you have to like to cruise. Some people just don't like it at all.

 

Candy

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Our very first cruise was last year and we all absolutely loved it. We did mainly ship based excursions as there wasn't much walking to do for my sister - ship to coach mostly. And everything tended to be door to door. She was relatively new then to having mobility problems so it was a fear of not coping that held her back I think.

 

Next year though she's hoping to be more independent - providing she finally gets her leg fittings right, we want to do more on our own.

 

We've recently come back from a few days in Tenerife (Canary Islands). Beautiful top class hotel - but set on a very slight hill. Nothing that bothered the rest of the family but of course it was the worst thing for my sister to have to deal with having a false leg - slopes are much worse than steps. The resort shops and bars weren't far enough away to get a taxi - only about 500 metres but it was too much to walk there and back. So we ended up getting taxis each night to the NEXT resort to justify getting some transport!

 

As a point of interest to those of you in the US, in Britain the word 'handicapped' is no longer allowed. It is considered very politically incorrect and demeaning. Even referring to someone as 'disabled' is a bit iffy. We now tend to say someone has 'mobility problems'.

 

I'm an IT teacher in a college and education is VERY sensitive to political correctness. We can't say 'blackboard' (racist!) - it's a 'chalkboard', but funnily enough we can still call whiteboards a 'whiteboard'. And we can't have 'brainstorming sessions' (offensive to people with mental health issues!) - we have 'ideas gathering sessions'. A lot of it is totally crazy.

 

The funniest thing was last week. In Britain we often say that someone was 'legless' if they get roaring drunk. A colleague of mine also has a false leg below the knee and he got really drunk at a party last Friday. He saw another party guest a couple of days later (who didn't know about his leg) and who said to him 'God, you were absolutely legless the other night! I bet your missus went mad when you got home!' Stan said 'She's used to it as I'm legless every night!' and pulled up his trouser leg. The other person didn't know how to respond to that!

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Oh my goodness YES, we had a marvelous time! I feel badly that I gave the wrong impression.

 

I was just trying to say that the ship was more cumbersome than I'd have imagined. Queenie said it right when she said "random steps". It'd seem like they were thrown in for no reason whatsoever (or at least that my novice brain could think of! LOL)

 

We were lucky that DH has had his artificial leg since he was a teen so he is VERY well adjusted to it. I just felt badly for those who aren't as mobile as he.

 

OMG, Mim! I roared at the legless joke! It reminded me of last summer when hubby injured his knee. (The real one.) We were at the emergency room and the physician asked him, "How did you lose your leg?" DH (who was already under the influence of morphine) answered "OH no, I didn't lose it. It's right here!" And he held up the prosthethis!

 

Mim, imo, the political correctness is going a bit far. I can see people with mobility issues not wanted to be called handicapped, only because they work so hard to not be handicapped. But not being able to call a blackboard by it's customary name is just going too far. And brainstorming? Come on now! Gee it must be hard to teach when you have to work so hard to use the politically correct word. I'm sure I would have already been fired, heaven knows I speak my mind! LOL

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just a fyi, re: the "H-word" (as I call it) is no longer considered to be "politically correct" here in the states either. (Actually I hate the term "pc", so I'll just say that it's something that advocates don't use). In fact some orgs have changed their name to "edit" it out. Do some people here still use it? well yes. They still use spazz (or spastic) in the UK too. Old habits die hard.

 

But no, it's not considered "correct" here at all. When people ask me, I tell them that nobody will every be offended by them not using the h-word, but many will if you do use it. Better to err on the side of caution. And when people use it, I don't correct them, but it just kind of tells me where they are coming from. Not meant as an insult to anyone who uses the word, just letting you know how some folks see it. I consider it more archaic language rather than offensive. But truly some folks do consider it offensive.

 

Just a FYI. Not meant to start a debate.

 

Candy

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No, no - you didn't the wrong impression at all.

 

I have to say that Political Correctness is going too far. I tend to open my mouth and things come out!

 

My sister's husband is British mixed race (black dad from Sierra Leone and white mum from England) and we're all white British. He's a sort of coffee colour and goes darker when in the sun. When he and my sister came back from holiday one time I said to him 'Wow, the colour of you! You're really dark!' You should have seen the looks on people's faces - it's just so non PC to mention colour! And my niece uses false tanning creams - and she's a quarter black and has a lovely natural skin colour!

 

And funny thing, my daughter only realised he was black when she was about 5 and had started school. She was all excited and said to him one day 'Guess what Dave? I've got something you should know. You're black, and it's not just on your hands and face - it's all over your body!' Dave looked down at himself and said 'Wow, thanks for telling me Lynsey - I'd never noticed that before!' We all thought it lovely that she'd never noticed people before as being different from one another because of the colour of their skin.

 

Our next challenge for my sister is going to be our week in Tunisia (12 July). North Africa isn't too geared up for disabilities so we'll see how it goes. The hotel should be fine - it's a very good one, but we'll have to see how the resort and area shapes up. Been checking the weather there and it's extremely HOT!

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Oh, what a sweet story! She had not realized!

 

My children went through a similar shock. We'd never made mention of color differences as they grew up. When they were in elementary school is was quite a shock for them to realize that there had been conflicts over the issue.

 

I love your stories, they're so heartwarming. Keep 'em coming!

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