Disability

[Cate M.]

I am hoping by relating my story that it might help someone else.

 

I guess I have what you would call an invisible disability. Four years ago I was diagnosed with Parkinson's and recently it has started to progress to where I have to take more medication. The medicine works but has to be taken with meals and I start to get rather shaky before I eat and walking is tricky.

 

We just got back from an Alaskan land and cruise vacation. It is difficult for me to go up steep hills or slopes especially just before I take the medication. At Icy Strait we walked the area and were returning to the ship for lunch. I had walked down the ramp but thought I would take the free shuttle back to the ship. My husband was going to walk and the meet me at the ship. He went to the driver to say I wanted to get on the shuttle and boy did I get a couple of canes swung at me and words to the fact that the shuttle was for people that needed it. I did not want a confrontation so my sweetie helped me to the ship. At Ketchican they had two ramps and one had a lesser slope then the other. Just as I approached the better one staff member said I would have to take the other one as this one was being taken away. I tried to speak to him to ask if he would just allow one more person but he ignored me and walked away.

 

On the land portion railway ride the staff was wonderful. They asked if anyone had any medical issues as they would be served breakfast first. My husband spoke on my behalf and I was accommodated. Boy did I get looks or what.

 

I am in my early sixties and have always looked after myself and until this year have played golf, walked and skied etc. This will probably be my last cruise but my message is please ask a person what their disability is before passing judgement. I refuse to use a cane yet as I am quite stubborn and want to keep active in order to stay healthy and out of a wheelchair. We make the most of my situation and laughed at times as I was trying to balance a plate of food and walk at the same time when the ship was moving. One morning I was holding a plate of food and my sweetie was handing me the napkin wrapped flatware and I said don't even think of it as I could only handle one thing at a time.

[Tom Baker]

Unfortunately you will get used to it. Those with no disability or those with bad hips and knees see themselves as all deserving, yet those with hidden disabilities often get berated or chastised. Think of it as their blinkered inability to look beyond what can be seen, it's their issue rather than yours. Tell yourself you have as much right to be there as they do. Also your husband is your carer, so he should ride with you too.

 

It's tough on those who have just being diagnosed but all of us with a hidden disability have to suffer at the hands of some people who can't see past their own disability.

 

People should realize that you don't need a cane or a wheelchair to have a disability.

 

Good luck and best of health and don't let the walking wounded get you down, you are just as deserving as they are :)

[cb at sea]

You should have told the "cane swingers" that that was WHY you were getting on the shuttle....because you couldn't walk that far! Not that it's their business...but I would have said something! Be ready to "confront" and stand up for yourself, metaphorically speaking!

[dpluta]

This happens to those with visible disabilities too. My wife has both knees replaced (she's only 53). She walks well now but must use a cane in crowds and difficult paths. Can't tell you how many looks and whispers we've encountered by ignorant people. I agree. No one else's business but it is disturbing. Something we have to live with. All I can say is I don't wish these ailments on anyone, even the terribly ignorant types.

 

 

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[HelenREMfan]

I do use either crutches, a walker (how I cringe at having to use "an old person's aid) or as on my last cruise a scooter. The first 2 I need, the 3rd just enables me to have some energy or less pain for when I want to move under my own steam.

I have increasingly noticed "sneering" looks when I use the scooter and believe you me I would far rather not be using it..... The thing that does upset me though is when perfectly able bodied people use disabled facilities. They see an unused disabled toilet and think that it just won't matter if they "pop" in and use it. The trouble is.... I might have misjudged the distance and time needed to walk to that disabled toilet, I might be in increasing need to sit..... never mind the use its purpose aspect of it. Every moment I have to wait to use it matters.....

 

At home - I swim at a hotel gym and spa pool. There is a small poolside disabled room. The hotel also permits use of it by a parent with 2 older different gendered children i.e. they might find it difficult to take them into a genre specific changing room (Though I should at this stage say I could tie my own shoe laces at 4 and the modern generation of children do seem too precious and rather too cosseted imho!) Anyway..... the whole world and its aunt now use this disabled changing room; mothers with babies, parents with one child of any age,swimming lesson children, spa visitors,young couples (!) and they leave the floor soaking wet often (which means my clothes get soaked when I have to sit to dress) and...to cap it all they lift the long cord alarm and wrap it over a top rail so it is out of the way. It would also be completely out of the way should a disabled person slip and fall onto the floor! I have completely lost patience with the hotel management as they seem incapable of enforcing their own policy relating to the use of this room.It seems that it is all important that all those folk aforementioned are too precious to have to walk an additional 20m or so to use the very large changing rooms.

 

Don't even get me started on the people going to exercise at the gym who park in the (only 2) disabled spaces. Oh the irony!!

 

To the OP...... you go girl! Use what is provided when it is necessary and you NEED it and blithely ignore other people's incorrect judgements and frowns. You do not have to prove your disability ...it is enough that you know it exists and that you are coping with it the best way you know how.

[patty1955]

The thing that does upset me though is when perfectly able bodied people use disabled facilities. They see an unused disabled toilet and think that it just won't matter if they "pop" in and use it. The trouble is.... I might have misjudged the distance and time needed to walk to that disabled toilet, I might be in increasing need to sit..... never mind the use its purpose aspect of it. Every moment I have to wait to use it matters......

Anyone can use the disabled restroom, it's not reserved exclusively for disabled. It would be silly for a line to form simply because no one is "qualified" to use the disabled toilet.

[deliver42]

Before my wife passed away, we used a wheel chair for her with any kind of long walk. She had respiratory problems. We also used any kind of disability help we could get. To look at her she was a picture of health. We also got the looks, whether on a ship, or in a parking lot on land when we parked in a handicapped space. If you're not on crutches or with a cane, these people think you're healthy. My wife would've traded places with them in a heartbeat.

[Bo1953]

I am hoping by relating my story that it might help someone else.

 

I guess I have what you would call an invisible disability. Four years ago I was diagnosed with Parkinson's and recently it has started to progress to where I have to take more medication. The medicine works but has to be taken with meals and I start to get rather shaky before I eat and walking is tricky.

 

We just got back from an Alaskan land and cruise vacation. It is difficult for me to go up steep hills or slopes especially just before I take the medication. At Icy Strait we walked the area and were returning to the ship for lunch. I had walked down the ramp but thought I would take the free shuttle back to the ship. My husband was going to walk and the meet me at the ship. He went to the driver to say I wanted to get on the shuttle and boy did I get a couple of canes swung at me and words to the fact that the shuttle was for people that needed it. I did not want a confrontation so my sweetie helped me to the ship. At Ketchican they had two ramps and one had a lesser slope then the other. Just as I approached the better one staff member said I would have to take the other one as this one was being taken away. I tried to speak to him to ask if he would just allow one more person but he ignored me and walked away.

 

On the land portion railway ride the staff was wonderful. They asked if anyone had any medical issues as they would be served breakfast first. My husband spoke on my behalf and I was accommodated. Boy did I get looks or what.

 

I am in my early sixties and have always looked after myself and until this year have played golf, walked and skied etc. This will probably be my last cruise but my message is please ask a person what their disability is before passing judgement. I refuse to use a cane yet as I am quite stubborn and want to keep active in order to stay healthy and out of a wheelchair. We make the most of my situation and laughed at times as I was trying to balance a plate of food and walk at the same time when the ship was moving. One morning I was holding a plate of food and my sweetie was handing me the napkin wrapped flatware and I said don't even think of it as I could only handle one thing at a time.

 

 

I Am so sorry for your health challenges and hope you are able to continue a long and enjoyable cruising life!

 

My only input is that, I would have spoken up about an inability to walk so far, without further explanation. 'I Am sorry, I Am not physically able to walk that far at this time' may have sufficed.

 

Keeping so much of it internalized as opposed to a simple explanation at the time, may have helped.

 

Keep well and bon voyage for a long time to come!

[Tom Baker]

Anyone can use the disabled restroom, it's not reserved exclusively for disabled. It would be silly for a line to form simply because no one is "qualified" to use the disabled toilet.

 

I do hope that you're the exception to the rule. I've found most Americans to be very respectful with regards the disabled. The facilities in the UK are provided for the disabled (and in some cases people with babies to change) in fact some disabled public facilities can only be accessed with the use of a key specifically given to the disabled person.

[Tom Baker]

My only input is that, I would have spoken up about an inability to walk so far, without further explanation. 'I Am sorry, I Am not physically able to walk that far at this time' may have sufficed.

 

No one should either have to apologize or explain their disability to others. It's no one elses business but their own. If other people have issues that's their problem.

[HelenREMfan]

Anyone can use the disabled restroom, it's not reserved exclusively for disabled. It would be silly for a line to form simply because no one is "qualified" to use the disabled toilet.

 

Well Patty

 

"Under the Americans with Disabilities Act facilities are to be readily accessible to and usable by individuals with disabilities" Can you explain to me how that is when able bodied folk use the disabled facilities..... using the hand washing facilities in there so taking more time they would if using a "normal" stall - how does that make that disabled facility "readily available"?

 

I suppose you might apply that logic to disabled parking spaces as I quite often see people using those for their convenience rather than because of any limitations they might have. (The ones at my local store are close to the ATM machines and quite a lot of people park in a disabled space and ...sometimes....run to the cash machine. )

[DrivesLikeMario]

OP - I'm so sorry you encountered those negative experiences.

 

My DH and I get dirty looks sometimes when we use the elevator for just 1 flight of stairs. Until about two years ago, we were stair-users all the time. We may look youngish and healthy, but we both have a bad knee that is due for replacement (him) and surgical repair (me). We found ourselves apologizing and explaining more than we should've had to.

 

Please, people, do not pass judgment on others when you don't know what is ailing them.

[bEwAbG]

Well Patty

 

"Under the Americans with Disabilities Act facilities are to be readily accessible to and usable by individuals with disabilities" Can you explain to me how that is when able bodied folk use the disabled facilities..... using the hand washing facilities in there so taking more time they would if using a "normal" stall - how does that make that disabled facility "readily available"?

 

I suppose you might apply that logic to disabled parking spaces as I quite often see people using those for their convenience rather than because of any limitations they might have. (The ones at my local store are close to the ATM machines and quite a lot of people park in a disabled space and ...sometimes....run to the cash machine. )

 

The law is explicit about who can use a parking space. Anyone can use any of the restroom facilities. The ADA just ensures that there is an accessible stall available to be used but it's not reserved exclusively for disabled people. "Readily available" in this context means you don't have to go to extraordinary steps to be granted access to a restroom you can use. But if there's a line, you have to wait with everyone else.

 

The problem with singling people out at your hotel pool is exactly what the OP is discussing: you don't know who has a legitimate need to use the facility.

[bEwAbG]

OP: you have to be your own advocate. There are lots of opinions out there about everything, but please don't let dirty looks (real or perceived) force you into doing something that causes you pain. Accommodations are there for your benefit if you need them.

[HelenREMfan]

The law is explicit about who can use a parking space. Anyone can use any of the restroom facilities. The ADA just ensures that there is an accessible stall available to be used but it's not reserved exclusively for disabled people. "Readily available" in this context means you don't have to go to extraordinary steps to be granted access to a restroom you can use. But if there's a line, you have to wait with everyone else.

 

The problem with singling people out at your hotel pool is exactly what the OP is discussing: you don't know who has a legitimate need to use the facility.

 

It is fairly obvious at the pool who is using the disabled room as an easy cut through to the pool, or as a quicker way to access their child's swimming lesson. The person who needs the shower with the seat, grab bars, stabilising rails etc is someone like me with severe osteoarthritis. If I have managed to access the room before some of these folk they go to the male/female changing rooms and change there. If I am locked out of the room for 15 mins or more.... I have to sit and wait..... the other changing rooms are not a possible option.

[patty1955]

It is fairly obvious at the pool who is using the disabled room as an easy cut through to the pool, or as a quicker way to access their child's swimming lesson. The person who needs the shower with the seat, grab bars, stabilising rails etc is someone like me with severe osteoarthritis. If I have managed to access the room before some of these folk they go to the male/female changing rooms and change there. If I am locked out of the room for 15 mins or more.... I have to sit and wait..... the other changing rooms are not a possible option.

Using a toilet shouldn't take that long. Is waiting worse for you than for other people?

Would you be more accepting of my opinion if I mentioned that I have plantar fasciitis and find standing for any length of time very painful? I thought the point of this thread was "hidden" disabilities?

[thyme2go]

The bottom line here is that those who abuse parking spots, or do not allow someone asking for assistance to get help are the one's that make it hard on everyone who doesn't have visible handicaps.

 

If appropriate for your condition I would give a generalized statement as indicated above: I need assistance as I cannot walk that far............. I cannot navigate that steep ramp without assistance....... There will always be those who are down their nose judges and it is the people who have abused the system when they have been capable, that have set this in motion. But if you speak up someone should respond.....especially on a cruise ship.

 

Speak clearly as to what the problem is and what the obstacle is...........no one needs to know your medical condition--visible or not..................

[HelenREMfan]

It is a changing room for a swimming pool. If someone takes 2 children in there they can take up to 15 mins to change - one reason being it is actually quite a small area. It has on occasion left me without enough time to swim if I was trying to fit a swim into the middle of a work day.

I am quite well aware of "hidden" disabilities and believe me the people who use this room, use it for reasons other than those of disabilities.

 

There are playpens for young children, benches, individual cubicles, chairs, shower cubicles all in the general changing rooms plus separate more discrete areas. The only advantage of the disabled room is that is is right adjacent to the pool and lounge area so they don't have to walk a little further. Believe me I have studied this over the past 12 months I have to have something to think about as I have to sit and wait.

 

Any disability is a disability and if someone needs to use the shower because it has rails and a seat that is absolutely fine...... alas.... the disabled items in there cause some of these folk annoyance for example I often find the help alarm cord wrapped and tied around the high curtain rail then it doesn't get in their way when they shower. If a disabled person fell of course and couldn't get up..... that cord would be unavailable to them.

 

I have to say that I have found the staff on Celebrity Eclipse to be really really thoughtful and considerate regarding my disability. I have lost count of the times when the lady in the restrooms has rushed ahead of me to open the disabled door for me... someone who surely cannot be expecting a tip.... The staff in the buffet come across to carry my plate..... just lots of little acts of thoughtfulness. To be honest too I find the vast majority of travellers on the ship to be kind and thoughtful and it is appreciated. I was formerly a very active and sporty person and find my situation now difficult to live with....

Edited June 14, 2016 by HelenREMfan

[patty1955]

T

 

Speak clearly as to what the problem is and what the obstacle is...........no one needs to know your medical condition--visible or not..................

I'm going to have to learn to speak up. I commute using mass transit and I don't always get a seat. The last time I rode standing for the whole 50 minutes, I was in agony for a few days after.

To the OP, even if you don't feel the need for a cane, you might find it helps. People usually want to be helpful and seeing a cane usually brings out the best in people.

[wwcruisers]

Cate -- I'm so sorry to hear about your negative experiences. One of my dearest childhood friends is struggling with Parkinsons. Like you, she's worked hard at staying in shape and being active her whole life, and now is being robbed of her "golden years". :( I DO hope that this is not your last cruise. But, maybe you should get a cane, just so you can "swing" it, lol! ;)

 

I've only had to cruise with a disability once, and it was thankfully temporary. But, it was certainly an eye-opening experience. A few years back, we cruised while I was waiting for surgery to repair a torn meniscus in my knee. I knew that stairs (or any sort of climb) would be difficult, and that I'd need to walk a little slower, to avoid falling. I was astounded by how much of a hurry everyone else was in, all of the time. Try as I might to stay out of the way, I always seemed to be holding folks up. :o

 

For every other cruise, my DH and I have always taken the stairs (except for formal nights, with their requisite "killer heels"). On this particular cruise, I had to take the elevator for everything. And, since I wasn't using a scooter, cane, or knee brace -- I got several dirty looks, riding up/down for just one floor. I just ignored them -- and would advise you to do the same, in the future. The only person on that shuttle bus that you might have owed ANY explanation to was the driver.

[JJInc]

Don't even get me started on the people going to exercise at the gym who park in the (only 2) disabled spaces. Oh the irony!!

 

So are you saying someone with a disability can not work out at a gym, or they should not? :rolleyes:

[casaloma]

Well Patty

 

"Under the Americans with Disabilities Act facilities are to be readily accessible to and usable by individuals with disabilities" Can you explain to me how that is when able bodied folk use the disabled facilities..... using the hand washing facilities in there so taking more time they would if using a "normal" stall - how does that make that disabled facility "readily available"?

 

I suppose you might apply that logic to disabled parking spaces as I quite often see people using those for their convenience rather than because of any limitations they might have. (The ones at my local store are close to the ATM machines and quite a lot of people park in a disabled space and ...sometimes....run to the cash machine. )

 

I'm probably piling on here but the karmic universe taught me never to use the disabled bathroom about 10 years ago in Walmart. I came out to the sweetest elderly woman in a wheelchair and her seething entourage. I apologized profusely and scurried away, probably red as a tomato. Just because there wasn't a disabled person when you entered doesn't mean there won't be one the moment you close the door.

[allentownahoy]

I do use either crutches, a walker (how I cringe at having to use "an old person's aid) or as on my last cruise a scooter. The first 2 I need, the 3rd just enables me to have some energy or less pain for when I want to move under my own steam.

I have increasingly noticed "sneering" looks when I use the scooter and believe you me I would far rather not be using it..... The thing that does upset me though is when perfectly able bodied people use disabled facilities. They see an unused disabled toilet and think that it just won't matter if they "pop" in and use it. The trouble is.... I might have misjudged the distance and time needed to walk to that disabled toilet, I might be in increasing need to sit..... never mind the use its purpose aspect of it. Every moment I have to wait to use it matters.....

 

At home - I swim at a hotel gym and spa pool. There is a small poolside disabled room. The hotel also permits use of it by a parent with 2 older different gendered children i.e. they might find it difficult to take them into a genre specific changing room (Though I should at this stage say I could tie my own shoe laces at 4 and the modern generation of children do seem too precious and rather too cosseted imho!) Anyway..... the whole world and its aunt now use this disabled changing room; mothers with babies, parents with one child of any age,swimming lesson children, spa visitors,young couples (!) and they leave the floor soaking wet often (which means my clothes get soaked when I have to sit to dress) and...to cap it all they lift the long cord alarm and wrap it over a top rail so it is out of the way. It would also be completely out of the way should a disabled person slip and fall onto the floor! I have completely lost patience with the hotel management as they seem incapable of enforcing their own policy relating to the use of this room.It seems that it is all important that all those folk aforementioned are too precious to have to walk an additional 20m or so to use the very large changing rooms.

 

Don't even get me started on the people going to exercise at the gym who park in the (only 2) disabled spaces. Oh the irony!!

 

To the OP...... you go girl! Use what is provided when it is necessary and you NEED it and blithely ignore other people's incorrect judgements and frowns. You do not have to prove your disability ...it is enough that you know it exists and that you are coping with it the best way you know how.

 

I agree with everything you said except- and since we are on the subject of hidden disabilities- I may look able bodied when I walk into the handicap bathroom stall but but I need the higher toilet seat. Due to weak quad muscles from a neuro condition, I cannot always get up from the low ones in regular stalls.

 

To the OP, whereas I do not need a walker right now there have been times when I did. It was hard to adjust to but it did allow me to go further and last longer and still on my own terms.

[4cats4me]

Well Patty

 

 

 

"Under the Americans with Disabilities Act facilities are to be readily accessible to and usable by individuals with disabilities" Can you explain to me how that is when able bodied folk use the disabled facilities..... using the hand washing facilities in there so taking more time they would if using a "normal" stall - how does that make that disabled facility "readily available"?

 

 

 

I suppose you might apply that logic to disabled parking spaces as I quite often see people using those for their convenience rather than because of any limitations they might have. (The ones at my local store are close to the ATM machines and quite a lot of people park in a disabled space and ...sometimes....run to the cash machine. )

 

 

One can get a hefty fine for parking in an ADA parking stall. The same rule does not apply regarding restrooms.

Some people have bladder disabilities due to multiple sclerosis, like my husband, yet ambulate quite well, for the most part. His disability is not obvious to outsiders, so it might appear to others that he is being inconsiderate.

 

Are you suggesting that he shouldn't be allowed to use the ADA restroom, due to incontinence issues, which as far as I am concerned,

IS part and parcel of some people's syndromes or disability.

 

if the restroom needs to be readily accessible to those with disabilities and a disabled person is already utilizing that one restroom, then the bathroom can't always be readily accessible at all times, can it?

 

 

 

Sent from my iPad using Tapatalk

Edited June 15, 2016 by 4cats4me

[lovey1103]

Anyone with a hidden or obvious disability "hold your head high"!

My DH is on year 20 with Parkinson's and has good days and bad. It's no ones business why he sits in the front of the bus, uses the handicap stall or stays in a handicap cabin. We would be happy to trade it in for a healthy body.