Disability

[LH25]

I am really trying to ascertain why it is that folks feel embarrassed or ashamed to reveal a disability yet seem to expect to be treated differently because they have one...It just doesn't seem reasonable to have it both ways.

 

I can only of course speak for myself. My experiences with disability are mostly temporary. Last year I was being treated for cancer, and both the Chemo and the Radiation left me very weak and with some pain when walking. So, I used a cane or scooter much of the time, and had a temp parking placard. I don't know if it counts as a hidden disability or not, I did wear head scarves because I had lost my hair.

 

I was not embarrassed or ashamed. I didn't think it wasn't really anyone else's business what my medical history was, and maybe that came across as such. But it was much more frustration that I was having issues and needed that different treatment you speak of. I even got comments like "Must be nice to be able to park so close". Well, in a way it was because otherwise I wouldn't have been able to go in the store or whatever. But like others have said, I would have traded that accommodation in a heartbeat to be healthy again.

[Fouremco]

"Is it appropriate to complain about strangers who behave "unaccommodatingly" toward someone with a hidden handicap/disability when the disabled person refuses to reveal, even in a minimal way, their need/desire for accommodation?"

Fifty years ago, I would have said "yes". Only a very ill-mannered lout would not have simply maneuvered around your blind friend without comment. In today's less gentle world, however, I fear that her expectations of civility are simply wishful thinking, and if she wants to be accommodated, she will be obliged to signal her need.

 

Unfortunately, many of us with a hidden disability have no easy means of signalling our condition. Your friend can use her white cane, but short of hanging a sign around my neck saying "I suffer from...", there's no ready means to indicate that there's a need for accommodation.

[AZ Karaoke Girl]

I too have a hidden disability. I have MD and cannot get out of a chair without my DH's help, cannot walk up or down steps, etc. I am vain like the OP and am trying not to use a walker, wheel chair or cane. But I should. I also fall down allot and cannot get up by myself. But if you looked at me, you would not know I have problems. I hate the rude stares I get for strangers who think I am trying to take advantage to a "perk" like a parking space. I have had total strangers yell at me because I "don't look handicapped". I continue to refuse to book a handicap cabin as I know there are many cruisers out there who cannot cruise without one, and so far I can.

Sorry for my rant. Just realize that looks are deceiving.

 

This is exactly my condition. I have MD also and same symptoms you describe. I do use a cane with a seat when I cruise or fly especially if there are long lines I might encounter as I can't stand for long. I don't always take it around on the ship. I have to judge when I might need it and the conditions such as long lines. If I fall, and I have on cruises, my husband has to get me up. My husband automatically comes around to my seat to help me up. I am almost 55 and look healthy for the most part.

 

I do book a handicap cabins often because I need the raised toilet and/or grab bars to get up. I have to study cabin configurations to determine if I need one because some cabins have a towel rack or the sink to grab onto to help lift me up from the toilet then I'm fine. Many of the cruiselines require you to fill out a form listing the types of assistance you might need in order to use that cabin and you have to sign that you need it.

 

As for the handicapped restrooms, boy don't get me started. I cannot get off a regular toilet. Just won't happen. In crowded places like airports where there is always a line, I stand in line and wait my turn (always bringing my cane to sit on) and let people pass me while I wait for that handicapped stall to open for the family of 4 that goes in to use it.:rolleyes: At work, everyone used the one stall in my building while the others sit empty. I had to put in a accessibility request thru my employer for them to add a sign that indicated if they don't have a physical need, please use another stall to allow it to be available for someone that needs it. That sign worked. It is usually empty now. Some people just don't think of it as being necessary. I will be standing in the restroom waiting for them to get out of the stall and people walk in and see other stalls open and people always say, there are other stalls empty, you don't need to stand here. In which I have to reply that I am waiting for the h/c stall. One time I was at Walmart and I had to go really bad. There were 3 empty stalls but one employee was using the only h/c stall and I could tell she was on her phone texting/facebooking or whatever. I stood there for at least 5 minutes, I didn't have my cane so not only couldn't stand anymore but I had to go really bad. I finally told her to hurry up I needed the stall. She said "aren't there any empty stalls?" :mad: This was a young girl maybe 22. I replied "I will be glad to use them if you wanna help me get up when I'm done.";p

 

I have a permanent disable license plate and I can't even count the number of times people have audibly said look at them, they clearly don't need a handicapped spot. My husbands response is look at the permanent plate and keep your mouth shut. I get lots of stares which I try to ignore but if someone audibly says something, they will get an earful.

 

Reminds me of the time some guy yelled at me for parking in a disabled spot that I didn't look disabled, I looked back at him and said, "You don't look stupid but apparently you are"

 

I need to remember this response. This is a good one.

[rucruisn2]

AZ KAREOKE GIRL..

 

May I ask what kind of MD you have? Mine in Myotonic.

 

Sorry for hijacking this thread,

[AZ Karaoke Girl]

AZ KAREOKE GIRL..

 

 

 

May I ask what kind of MD you have? Mine in Myotonic.

 

 

 

Sorry for hijacking this thread,

 

 

 

I also have myotonic dystrophy. My mom and grandma had it too and both my kids are showing early signs of it. Mine fortunately is the milder form type 2.

 

I started having symptoms in my early 20's but didn't know it was MD as I did many things like snow skiing and water skiing. I was diagnosed in my mid forties.

 

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Edited June 1, 2017 by AZ Karaoke Girl

[rucruisn2]

I also have myotonic dystrophy. My mom and grandma had it too and both my kids are showing early signs of it. Mine fortunately is the milder form type 2.

 

I started having symptoms in my early 20's but didn't know it was MD as I did many things like snow skiing and water skiing. I was diagnosed in my mid forties.

 

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OMG!!! Me too, type 2. Please email me at: thesclars@comcast.net

so we can compare notes.

[saffy12]

I also have myotonic dystrophy. My mom and grandma had it too and both my kids are showing early signs of it. Mine fortunately is the milder form type 2.

 

I started having symptoms in my early 20's but didn't know it was MD as I did many things like snow skiing and water skiing. I was diagnosed in my mid forties.

 

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This is interesting - I started to read this thread because of my father's disability and hoping to get some information about my upcoming cruise with him. Interestingly enough,, he also has myotonic dystrophy - it's so rare, we haven't actually found anyone else with it! He had symptoms for about 5 years and we were actively trying to figure out what was wrong with him for 3 before he got diagnosed. Once we did, we realized my grandfather must have had it as well, but he had passed away by that time.

 

He's been diagnosed for about year, and it's been a struggle. My mom has RA, so both of them have mobility issues, but my dad has really been having some of the psych symptoms (lack of motivation, trouble with complex concepts, etc...) and we're still learning how to deal with it.... Any suggestions specific to what you have found with MD would be most appreciated!

[rucruisn2]

This is interesting - I started to read this thread because of my father's disability and hoping to get some information about my upcoming cruise with him. Interestingly enough,, he also has myotonic dystrophy - it's so rare, we haven't actually found anyone else with it! He had symptoms for about 5 years and we were actively trying to figure out what was wrong with him for 3 before he got diagnosed. Once we did, we realized my grandfather must have had it as well, but he had passed away by that time.

 

He's been diagnosed for about year, and it's been a struggle. My mom has RA, so both of them have mobility issues, but my dad has really been having some of the psych symptoms (lack of motivation, trouble with complex concepts, etc...) and we're still learning how to deal with it.... Any suggestions specific to what you have found with MD would be most appreciated!

 

I was diagnosed when I was 29. and am now 67. It is hereditary, so if your dad has it, chances are you our your kids could also have it. A Neurologist can test you. From what I know, it is a progressive disease, and there is no treatment for it. My mom had it as does my sister. My worse problem is I have almost constant pain in my legs. I won't take narcotics and the Drs. have nothing to offer me. I would be happy to chat with you if I can help.Again, my email is thesclars@comcast.net

[AZ Karaoke Girl]

Your dad probably has type 1 which is much more severe. Cognitive problems are more apparent in type 1. I have learned quite a bit about myotonia since I was diagnosed as I want to know as much as I can about my disease. I learned a little from my neurologist but I actually think some of my issues are related to the MD that my neurologist says is not a symptom so I tend to disagree.

 

I will definitely email you today so we can compare notes & get it off this thread.

[LBeeE]

I can sympathize, I'm 40 and have invisible disabilities, can't walk or stand for long periods. I get lots of disbelieving looks from other passengers when we cruise since I always get wheelchair transport. They think, "i saw this person who doesn't look sick, standing a minute ago, and now she's in a wheelchair bypassing lines, really??" Of course I'm sitting there thinking, "why would anyone CHOOSE this?"

[CanadaDeb]

OP: I'm very sorry you've had these experiences, but I hope you don't stop travelling until you feel you can no longer do it, not because of what others say or do. I'm now 44 but have been ill since I was 16. Like you, my disease is invisible ( 3 brain surgeries, radiation on the brain, bilateral adrenalectomy which leaves me dependent on 8 different meds and as a result I get tired very easily and my brain doesn't quite work like it use to ). When someone passes a rude comment to me, I look them in the eye and tell them that not all disabilities are visible. I've lost a lot of what I loved to do because of my illness, but I will travel as long as I can because I love it...and I hope you do, too!

[grapau27]

OP: I'm very sorry you've had these experiences, but I hope you don't stop travelling until you feel you can no longer do it, not because of what others say or do. I'm now 44 but have been ill since I was 16. Like you, my disease is invisible ( 3 brain surgeries, radiation on the brain, bilateral adrenalectomy which leaves me dependent on 8 different meds and as a result I get tired very easily and my brain doesn't quite work like it use to ). When someone passes a rude comment to me, I look them in the eye and tell them that not all disabilities are visible. I've lost a lot of what I loved to do because of my illness, but I will travel as long as I can because I love it...and I hope you do, too!

I agree you are very brave and some people are just naturally nasty but don't let them rule your life.

[awhfy]

I, too, have a permanent handicap parking placard. I was getting out of my car at a grocery store recently & this middle aged man (I'm 66) pulls into the handicap spot next to me (no placard) & jumps out of his high end convertible & starts to run into the store. I summoned my outdoor voice & said "you forgot to use your handicap placard". He started cursing at me. I ignored him till I saw the police officer walking out of the store. I just pointed at the car & the man. That $250 parking ticket for illegally parking in a handicapped parking slot must have stung a bit.

 

 

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[NLH Arizona]

I ignored him till I saw the police officer walking out of the store. I just pointed at the car & the man. That $250 parking ticket for illegally parking in a handicapped parking slot must have stung a bit.

 

 

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I wish police would give more tickets. One thing they are doing here is asking for identification of the driver and if they aren't with the person who the placard or license plate is assigned to, they get a ticket.

 

I'm sorry some of you received such rudeness from others. With regard to the elevators on the ships, no one should have to explain to anyone why they are using it; it could be a disability, it could be that they are just plain tired or it could be that they want to take the elevator.

[musik07]

Last summer I cruised in a walking cast with a broken foot. I was just a week from being released so I had permission to take it off and get myself into the pool and ocean very carefully. From the airport, where TSA didn't provide a chair for me after forcing me to hop through security in the pre-check line, to the shuttle van where the first passengers were in and wouldn't move and I got to crawl to the back to the person at the port security who yelled 'disabled screening' when I got there because they had to wand my cast I had some interesting experiences and looks from people. It was a very interesting taste of what living with a disability would be like every day. As a special education teacher I actually valued it a lot and I see what some of my students go through every day in a whole new light. That being said, when someone gave me a look, I just waved over a bartender, ordered another drink and kept enjoying myself. It was my vacation and no broken bones or rude people were going to stop me.

[broadwaybaby123]

So sorry to hear about your experiences, and I certainly can relate. Although my disability is a learning disability (Dyslexia), just like you, people were willing to pass judgement on me.

 

I would speak up to those people, and, to your comfort level, explain to them why you need the accommodations that you do. Personally, every chance I get, I use the stairs, not only because it's a great workout for me, but there may be someone else who could use the elevators more than I could. The only exception would be if I had something like a stroller with me that I couldn't take with me on the stairs. It may take me a little longer, but I would rather take a little longer getting to where I need to be than to have someone risk their health for my needs. Nothing is worth anyone risking their health for.

[lovey1103]

My DH is on year 22 with Parkinson's Disease after being diagnosed at 43 years old.

We really could care less what other people think at this stage and frequently reveal the Parkinson's Disease.

This shuts the stares and impatience down real fast.

[grab007]

Good thread! The fact that it's been around so long is a good thing. The very fact that so many folks are aware and concerned is heartening to all of of in the community.

 

There are as many types and levels of disabilities as there are people! A few of my favorite sayings:

 

There but for the grace of God go I.

The definition of "character" is doing the right thing when no one is looking!

 

Bless you all.

[AZ Karaoke Girl]

OMG!!! Me too, type 2. Please email me at: thesclars@comcast.net

 

so we can compare notes.

 

 

 

I emailed you today.

 

 

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[grapau27]

Good thread! The fact that it's been around so long is a good thing. The very fact that so many folks are aware and concerned is heartening to all of of in the community.

 

There are as many types and levels of disabilities as there are people! A few of my favorite sayings:

 

There but for the grace of God go I.

The definition of "character" is doing the right thing when no one is looking!

 

Bless you all.

Great comment.

[rucruisn2]

Lisa, sent you an email, did you get it?

Marilyn

[AZ Karaoke Girl]

Lisa, sent you an email, did you get it?

Marilyn

No I have been checking for a reply and I didn't get it. I've checked spam folders too. Nothing there.

[rucruisn2]

Lisa,

 

My emails are all messed up, call me on my cell 860 690 1463 or home at 561 737 7484. Thanks,

Marilyn

[AZ Karaoke Girl]

Marilyn: I'm at work so I can try to call you later. not sure what time zone you are in but I don't get off work until 4 MST (Arizona time)

[rucruisn2]

Marilyn: I'm at work so I can try to call you later. not sure what time zone you are in but I don't get off work until 4 MST (Arizona time)

 

Lisa, tonight is perfect, we are eastern time zone. I'll be home all evening, Use the home # 561 737 7484. We live in Florida.