Welcome to DU! The truly grassroots left-of-center political community where regular people, not algorithms, drive the discussions and set the standards. Join the community: Create a free account Support DU (and get rid of ads!): Become a Star Member Latest Breaking News General Discussion The DU Lounge All Forums Issue Forums Culture Forums Alliance Forums Region Forums Support Forums Help & Search
 

KamaAina

(78,249 posts)
Mon Mar 23, 2015, 01:29 PM Mar 2015

I Am Disabled and People Tell Me On a Regular Basis That They Would Rather Die Than Be Like Me

http://www.xojane.com/issues/assissted-suicide-leans-towards-helping-non-disabled-people

The first person to tell me they’d kill themselves if they ever became disabled was a bus driver, shortly after I’d had neurosurgery that had gone a bit wrong. I was trying to learn how to navigate the world on crutches and I hadn’t even worked out the essentials yet (primarily how to carry a cup of tea). I certainly didn’t have the energy to tell him why that was an appalling thing to say to somebody, or explain why it was the last thing I needed to hear at that moment.

He had imagined what being disabled must be like and automatically concluded that death would be preferable. This is not unusual.

Nobody’s ever told me that they’d rather kill themselves than be gay, or a woman, despite there being hardships associated with those other aspects of my identity, and I’m sure most people would agree that those sentiments would be highly inappropriate. Yet, judging by the number of people who have said the same thing to me as the bus driver did, it seems to be an acceptable thought to have about disability. It’s even thought to be acceptable to share that thought with the disabled stranger who happens to be sitting nearby.

It’s hard not to take it personally when somebody implies that you’d be better off dead. And besides, it’s rude.


129 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies
I Am Disabled and People Tell Me On a Regular Basis That They Would Rather Die Than Be Like Me (Original Post) KamaAina Mar 2015 OP
There are a lot of insensitive jerks in the world still_one Mar 2015 #1
amen to that Liberal_in_LA Mar 2015 #41
Fact of life... Hulk Mar 2015 #58
You could not be more spot on. LibDemAlways Mar 2015 #60
Wow, not only rude but actually dangerous and could hurt someone still_one Mar 2015 #61
What the hell is wrong with people? Bobbie Jo Mar 2015 #81
I know this kind of rude behavior has been around forever, but it seems there are appalachiablue Mar 2015 #119
In my area of Southern Calif. entitled LibDemAlways Mar 2015 #126
You said it and there are plenty like that in the east, total power, arrogance, rude & crude. appalachiablue Mar 2015 #127
This message was self-deleted by its author razorman Mar 2015 #74
You are quite right. But, to be fair, most of them probably do not realize razorman Mar 2015 #75
Ignorance. sure some do say that..until they are disabled. misterhighwasted Mar 2015 #2
The poster didn't write the article s/he linked, I think. ND-Dem Mar 2015 #86
How old are you? HockeyMom Mar 2015 #3
"Feeling like a burden is another. But a society that diminishes our lives to the point ND-Dem Mar 2015 #88
why is it such a bad thing to be taken care of by another? liberal_at_heart Mar 2015 #95
I agree, but it's funny. I have taken care of people but I don't like the idea of ND-Dem Mar 2015 #96
I like this post, good for you. Yes we all need care at some time although many resist reality. appalachiablue Mar 2015 #121
Cruel. bravenak Mar 2015 #4
You're a mom? KamaAina Mar 2015 #7
Of course I'm a mom!! Lol!! bravenak Mar 2015 #10
We use the term "mom" to mean "autism mom" KamaAina Mar 2015 #11
No. Outside in the yard, sure. bravenak Mar 2015 #13
Lower 48. KamaAina Mar 2015 #14
Once I can get her on the plane We are going to visit the family in Cali. bravenak Mar 2015 #17
No, I did not know about that. KamaAina Mar 2015 #19
My son used to have behavioral issues as well. It can be draining. Boy do those little liberal_at_heart Mar 2015 #18
She is nine. bravenak Mar 2015 #27
"The little things that are different about these kids are the things that make you love them liberal_at_heart Mar 2015 #79
Many people sleep walk through life Prism Mar 2015 #5
Rec your post BrotherIvan Mar 2015 #8
+ 1 demigoddess Mar 2015 #51
It's the thoughtlessness Prism Mar 2015 #114
I'm going to steal that: Slappable Commentary BrotherIvan Mar 2015 #128
Those are some great insights. You are absolutely right. When you are disabled you are forced liberal_at_heart Mar 2015 #9
"choose to be happy" Prism Mar 2015 #115
+100. ND-Dem Mar 2015 #89
Great post. nt raccoon Mar 2015 #111
Exactly! Pacifist Patriot Mar 2015 #113
It's even worse when the disability is invisible Kalidurga Mar 2015 #6
I have a day time sleepiness disorder. It does make doing things very difficult. It can be liberal_at_heart Mar 2015 #16
That's what chronic fatigue is like except there are a lot more symptoms Kalidurga Mar 2015 #29
That's getting a new name maybe, and a new diagnostic criteria...after so many years. MADem Mar 2015 #104
Thank you that describes what goes on perfectly Kalidurga Mar 2015 #120
Peter Rowe, who is the MD mentioned in the article, did a very comprehensive study MADem Mar 2015 #122
Everyone should experience going out and about while temporarily disabled Quantess Mar 2015 #12
One day I went to a KMART to buy something CountAllVotes Mar 2015 #24
That is awful. Arugula Latte Mar 2015 #25
That's what I thought of! Quantess Mar 2015 #28
b b buttt CountAllVotes Mar 2015 #30
That's bad.... I was jeered at by teenagers Quantess Mar 2015 #35
I hold doors too; though I was once chastised for doing so by a disabled person. ND-Dem Mar 2015 #93
Well then, that person was just being grumpy and over-sensitive. Quantess Mar 2015 #100
an older man saying that? it surprises me, because older people are often somewhat ND-Dem Mar 2015 #90
All you can do is shake it off. I would take the attitude that the poor guy MADem Mar 2015 #123
Ironically flip side is true loyalsister Mar 2015 #33
Temporary disability can be enough to change your perspective. Quantess Mar 2015 #38
Simulations are a part of some disability awareness campaigns loyalsister Mar 2015 #45
Been there, done that. Doesn't excuse this writer from using her disability to attack an option for AtheistCrusader Mar 2015 #44
you've been disabled? but now you're not? ND-Dem Mar 2015 #91
I was by post 12's standard. AtheistCrusader Mar 2015 #110
No, it really can't be the same. I acknowledge that. Quantess Mar 2015 #124
Some years ago, while pregnant with my first child (who is now 32) SheilaT Mar 2015 #71
There was a posted story on DU once yuiyoshida Mar 2015 #15
Someone once told me I should have died in Vietnam pinboy3niner Mar 2015 #21
I knowwwwwwwwwwwwwwwww!!!! yuiyoshida Mar 2015 #23
That is horrible CountAllVotes Mar 2015 #31
To a certain extent they already are. justhanginon Mar 2015 #49
omg. ND-Dem Mar 2015 #92
People are so fucked up... :-( Left coast liberal Mar 2015 #20
Statistics CountAllVotes Mar 2015 #22
What a completely shitty thing to say to anyone. Eom. Tuesday Afternoon Mar 2015 #26
Some of us understand a little better. Savannahmann Mar 2015 #32
K&R Yo_Mama Mar 2015 #34
IMO it's a declaration of the speaker's limitations Orrex Mar 2015 #36
It's a real shame, for the world, that this Guy didn't kill himself when he found out that the.... BlueJazz Mar 2015 #37
He's had lots of time for pure thought ErikJ Mar 2015 #64
Europe's had a lot of experience on this ... MisterP Mar 2015 #39
the US has had a bit too. ND-Dem Mar 2015 #97
"War Against the Weak" is a completely amazing work MisterP Mar 2015 #125
why do you say that? you mean his claims that the ford foundation and soros ND-Dem Mar 2015 #129
I guess he sees any criticism of Likud as a Ford-sponsored ploy to finish what Heydrich started MisterP Mar 2015 #130
That is austerity for you CountAllVotes Mar 2015 #40
So because some people are insensitive whatthehey Mar 2015 #42
Whoosh! pinboy3niner Mar 2015 #46
then tell me the fucking point whatthehey Mar 2015 #59
You seem to be trying very hard to make me wonder if you deserve to live pinboy3niner Mar 2015 #63
No it doesn't miss the point. The point was buried at the end of the article. AtheistCrusader Mar 2015 #72
I don't think that was the point of the OP. If it had been she probably would have included it liberal_at_heart Mar 2015 #78
It might not be why the OP posted it, but it is certainly the point of the article itself. AtheistCrusader Mar 2015 #80
"I sure as hell hope assisted suicide is there to help my disabled ass" loyalsister Mar 2015 #52
I don't need to make assumptions about the experience. I KNOW and LIVE it whatthehey Mar 2015 #62
I'm sorry you feel like that pinboy3niner Mar 2015 #68
I am glad that you do have those supports loyalsister Mar 2015 #69
I am disabled and agree w/you Pastiche423 Mar 2015 #85
or maybe it's the people who acquire a disability who have a harder time ND-Dem Mar 2015 #98
That may be true for some. My son was born with Autism, has had it all his life. My husband liberal_at_heart Mar 2015 #99
Nope Pastiche423 Mar 2015 #101
which is what i meant; they have a harder time accepting their situation. ND-Dem Mar 2015 #102
I said is WASN'T a matter of a harder time and/or acceptance Pastiche423 Mar 2015 #103
I thought you were speaking of the fear those *not* disabled from birth have of ND-Dem Mar 2015 #105
"Which is one of the reasons the newly disabled would fear living as a disabled person." Pastiche423 Mar 2015 #106
Because disabled lives are socially devalued, to become disabled inspires fear and ND-Dem Mar 2015 #107
How about, "don't be a rude asshole and insult people?" Quantess Mar 2015 #73
Who said that? Any individual should have the right to make that choice for themselves, but liberal_at_heart Mar 2015 #77
This is a shameless attack on the UK version of Washington State's I-1000 bill. AtheistCrusader Mar 2015 #43
I think it's horrible having to deal with that, but Ed Suspicious Mar 2015 #47
The librarian at my high school lost both of his legs in an auto accident when mulsh Mar 2015 #48
"Why would you say something like that?"... Is the kindest way I've learned to bettyellen Mar 2015 #50
this one's a keeper: raccoon Mar 2015 #112
I believe I need to give credit to the wonderful Captain Awkward for that line bettyellen Mar 2015 #118
I can't imagine how anyone feels they have the right to say that to another person get the red out Mar 2015 #53
Pity those who's existence must be so crappy mobility is their deal breaker. nt Snotcicles Mar 2015 #54
Ben Stein said it, on a CBS Sunday Morning commentary in the mid 90's. Dont call me Shirley Mar 2015 #55
Yep, and the ugly thing the anti-vaxxers hide DonCoquixote Mar 2015 #56
I hear you, KamaAina! Sissyk Mar 2015 #57
We don't say "wheelchair-bound" anymore KamaAina Mar 2015 #66
Gotcha! Sissyk Mar 2015 #67
They may not know much about life then, if they feel that way to judge another. We all need to Jefferson23 Mar 2015 #65
What those rude people are saying sounds like an admission of cowardice. pnwmom Mar 2015 #70
terrible Skittles Mar 2015 #76
"So when people in government, people with power, start trying to enshrine the idea ND-Dem Mar 2015 #82
While I believe the right to die is just as fundamental as the right to live, I'm also horrified nomorenomore08 Mar 2015 #83
I'm celibate. I assumed I would fall in love when I was younger applegrove Mar 2015 #84
Rude is not a strong enough word KauaiK Mar 2015 #87
Why are so many people assuming the poster wrote the OP? ND-Dem Mar 2015 #94
He did not. KamaAina Mar 2015 #117
The people who say that are brain dead n/t malaise Mar 2015 #108
It is unpardonably rude to say such things to anyone. I think the disabled person raccoon Mar 2015 #109
On taking it personally... pipi_k Mar 2015 #116
 

Hulk

(6,699 posts)
58. Fact of life...
Mon Mar 23, 2015, 04:18 PM
Mar 2015

There always will be insensitive morons among us. Pity them in their stupidity. Most are beyond hope. Fact of life #3,465

LibDemAlways

(15,139 posts)
60. You could not be more spot on.
Mon Mar 23, 2015, 04:23 PM
Mar 2015

The other day I was about to help my 92-year-old mother into the passenger seat of my car when the asshole parked next to me decided he couldn't wait 10 seconds and literally shoved us aside as he opened his door, jumped in, and backed out with us still standing there wedged between the cars. What kind of an inconsiderate jerk treats an elderly person that way? All I kept thinking was he had to be a Republican.

Bobbie Jo

(14,341 posts)
81. What the hell is wrong with people?
Mon Mar 23, 2015, 10:07 PM
Mar 2015

Reading that just thoroughly went right through me.

What a first class jerk.

All I can say here is.....karma.

appalachiablue

(41,161 posts)
119. I know this kind of rude behavior has been around forever, but it seems there are
Tue Mar 24, 2015, 12:16 PM
Mar 2015

many more reports of incidents like this lately. People are rushed, working, struggling and more concerned with themselves and less for others. Basic human selfishness is no excuse but indicative of the times and growing disregard for weaker and vulnerable people in favor of the 'winners'. It's no doubt assisted by vicious RW hate radio/internet talkers screaming about welfare fatties, lazy govt. workers and others viewed as undeserving. Sorry this happened, glad you have each other and that you take good care of your mother. I did the same for mine who I miss very much. The man was a pig, and I'd agree that he's a republican (although there can be some arrogant, obnoxious and rude Dems. Rahm Emanuel types come to mind).

LibDemAlways

(15,139 posts)
126. In my area of Southern Calif. entitled
Tue Mar 24, 2015, 02:30 PM
Mar 2015

jerks like this guy are a dime a dozen. He was driving a new BMW and his attitude was basically "Get the hell out of my way." Many of these people are big shots in the entertainment industry where rudeness, arrogance, and entitlement are a way of life. Unfortunately, you mostly get used to it and expect it, but that guy was beyond the beyond.

Response to still_one (Reply #1)

razorman

(1,644 posts)
75. You are quite right. But, to be fair, most of them probably do not realize
Mon Mar 23, 2015, 06:15 PM
Mar 2015

that they are being hurtful. They most likely do not intend to hurt anyone's feelings, and are unaware that they have done so. But, being insensitive probably also requires being a little oblivious, too, I suppose.

 

HockeyMom

(14,337 posts)
3. How old are you?
Mon Mar 23, 2015, 01:37 PM
Mar 2015

That is very relevant. If you are a Senior and they tell you need need such and such a surgery, but it will leave you disabled (how much?) and you will be bedridden (or worse), cannot do this or that, would you still say the same when you have already lived your life into old age? Do you agree that this should be a choice of the adult person, and has nothing to do with disabilities cited in your post.

 

ND-Dem

(4,571 posts)
88. "Feeling like a burden is another. But a society that diminishes our lives to the point
Tue Mar 24, 2015, 01:00 AM
Mar 2015
where strangers tell us we’d be better off dead (because, yes, some are that direct) is one where we are bound to feel like a burden! A world where our financial support and care are being cut to such a degree that people are losing hope entirely is not one where we can feel dignified.

In this atmosphere, it is simply not safe to introduce assisted suicide laws and expect that the continued bashing of disabled people will not play into a desire to die. "

and the same is true for the elderly. and other groups as well.

liberal_at_heart

(12,081 posts)
95. why is it such a bad thing to be taken care of by another?
Tue Mar 24, 2015, 01:25 AM
Mar 2015

You cannot live the human experience without being taken care of during some point in your life. Babies, the elderly, the sick, the disabled. If we did not take care of each other during these times in our lives the human species could not survive. I mean honestly who ever looks at a cancer patient and says maybe you should die? I have a genetic mutation that puts me at great risk for getting cancer, and if I do get cancer I realize it will be difficult for my family to deal with physically, emotionally, financially. But I also know how much they want me around and how much I would want them around if any of them got really sick, so I would fight to live even if it meant that I was a "burden." I do believe in end of life rights. I voted for the WA law that allows for the terminally ill to end their life with dignity, but I also believe that sick and disabled people should be allowed to live in dignity also. There is nothing wrong with allowing people to take care of you.

 

ND-Dem

(4,571 posts)
96. I agree, but it's funny. I have taken care of people but I don't like the idea of
Tue Mar 24, 2015, 01:29 AM
Mar 2015

someone taking care of me.

I think people fear the loss of control and independence.

I'm very ambivalent about assisted suicide. I have little doubt that it *will* be misused, sooner or later, despite its proponents' insistence that it can't happen.

 

bravenak

(34,648 posts)
4. Cruel.
Mon Mar 23, 2015, 01:38 PM
Mar 2015

My autustic daughter loves life. I feel the same way about the vaccine thing. Rather their child die from a preventable illness because of fear of Autism.

 

bravenak

(34,648 posts)
10. Of course I'm a mom!! Lol!!
Mon Mar 23, 2015, 01:53 PM
Mar 2015

I'm an older lady now. 2 kids, both girls, 5 and 9.
I had no idea there was a group on here. I'll join up. Thank you.
P.S. I like you too.

 

bravenak

(34,648 posts)
13. No. Outside in the yard, sure.
Mon Mar 23, 2015, 02:01 PM
Mar 2015

I'm pretty much stuck here. You mean outside like lower 48 'outside' or just outside?
I did not know the lingo.
She was at the point where just getting her ready to leave the house was an hour long process with behaivioral incidents the entire time. She can finally get through the whole day at school without me picking her up. I feel progress. She talks a bit more now. It's kinda rough sometimes. I was supposed to join a support group but she just harasses the sitter or my mom the entire time until I get back. They cannot take it. She REALLY likes me. A lot.

 

bravenak

(34,648 posts)
17. Once I can get her on the plane We are going to visit the family in Cali.
Mon Mar 23, 2015, 02:11 PM
Mar 2015

She is getting so much better. Are you talking about that um, "Blue's Festival"? The one with the medicinal herbals?

liberal_at_heart

(12,081 posts)
18. My son used to have behavioral issues as well. It can be draining. Boy do those little
Mon Mar 23, 2015, 02:15 PM
Mar 2015

steps toward progress feel good. I will always remember the first time my son wrote I love mom. We were actually at a doctor's office and there was a white board he was writing on just to pass the time. He wrote I love mom, and I felt like my heart was going to jump out of my chest. How old is your daughter?

 

bravenak

(34,648 posts)
27. She is nine.
Mon Mar 23, 2015, 02:49 PM
Mar 2015

And yes, every little step feels like a mile. I noticed yesterday that we rerely hear her crying anymore about random stuff. If she's is upset now, we can figure out the problem. It used to be much more frustrating. And she love art, so i just buy watercolors, acrylics, brushes, paper, crayons, yarn, etc. Once I started keeping lots of ar stuff in the house, she started behaiving. I can get her to do anything now if I promise to buy her some more paint. It nice.
The little things that are different about these kids are the things that make you love them so much. It feels rewarding. Nothing is easy but when we get there, we got it. I promised if she behaves at school next year, we can go to disney land when she's 10.

liberal_at_heart

(12,081 posts)
79. "The little things that are different about these kids are the things that make you love them
Mon Mar 23, 2015, 09:49 PM
Mar 2015

so much."
You are so right about that. That is cool that she is is into art and learning self regulation. Once my son learned coping mechanisms his tantrums stopped. Now he laughs most of the day. He loves comedy, and his occupational therapist said he would do well in acting classes. He is also getting into art and writing because he likes to write action stories and is taking art in school so he can make drawings to go along with his stories. Writing is where he lags the most in school so to see him interested in writing makes me happy.

 

Prism

(5,815 posts)
5. Many people sleep walk through life
Mon Mar 23, 2015, 01:43 PM
Mar 2015

I work with the disabled, and what I found for many of the people I spend time with is that quality of life is highly dependent on purpose. I see people with profound physical and mental challenges who are not just content, but actively happy because they have something in their life from which they derive great meaning. Some write or pursue music or participate in the community.

A lot of able bodied people don't have that. They just go through the daily motions. So, to them, being impaired in some way is the worst thing imaginable. It would deprive them of their daily mindlessness. Some people are content to be on auto pilot.

There is no autopilot for any disability. Every day is a choice and a challenge to move forward and derive from life everything they can.

This may be the only life and consciousness we get in the universe. The idea of wasting it because of difficulties or challenges is thoughtless, and sharing that kind of psychic nihilism with someone who's fighting to live their life is off-handedly cruel. People are buh sometimes.

BrotherIvan

(9,126 posts)
8. Rec your post
Mon Mar 23, 2015, 01:51 PM
Mar 2015

As I watched my mother become disabled and then bedridden from cancer and chemo, I learned that saying "I would rather die than ______" is utterly meaningless until you are faced with the actual situation. Finding the joy and meaning in life can be the hardest task of all, and being disabled does not prevent one from doing it.

I can't believe someone would say such a thing. I know they are probably scared, as I am, to contemplate the challenges that come with disability. But giving anything other than respect, support, kindness and compassion to someone because of that fear is just blind stupidity.

 

Prism

(5,815 posts)
114. It's the thoughtlessness
Tue Mar 24, 2015, 10:35 AM
Mar 2015

I mean, come on, someone can't exit their bubble for ten seconds to think about the emotional and mental well-being of someone else? It's highly slappable commentary.

BrotherIvan

(9,126 posts)
128. I'm going to steal that: Slappable Commentary
Tue Mar 24, 2015, 03:01 PM
Mar 2015

And yes, it is. People need to learn to have more empathy.

liberal_at_heart

(12,081 posts)
9. Those are some great insights. You are absolutely right. When you are disabled you are forced
Mon Mar 23, 2015, 01:52 PM
Mar 2015

out of your mindless, auto pilot comfort zone. If you want to be happy, you have to chose to be happy. I have a legally blind husband and an autistic son and both find ways to be happy. My son has an incredible sense of humor, and my husband enjoys finding ways he can help those around him.

 

Prism

(5,815 posts)
115. "choose to be happy"
Tue Mar 24, 2015, 10:41 AM
Mar 2015

Exactly that. A lot of people facing challenges in life have taught that lesson.

Kalidurga

(14,177 posts)
6. It's even worse when the disability is invisible
Mon Mar 23, 2015, 01:45 PM
Mar 2015

I have chronic fatigue, there are people with chronic back pain, people with chronic mental health issues, and probably a dozen other things that are not apparent when you look at someone. Making things even more difficult is that these issues are not always at a level that will keep someone from working, but most of them make work very hard and leave the person with the condition in a state that all they can do is work and sleep. There is no quality of life during off work hours. There is no sympathy that I can see for disabilities and one party actively wants to kill us. So when someone says they would rather die than be disabled I think they have a gut feeling that the situation for disabled people is very precarious and they don't want to face that.

So, yes it's a rude thing to say. But, it's also an acknowledgement that there is no safety net if you are incapacitated and can't work. Or you can work, but do nothing else and could be at the mercy of friends and family to help you with other basic functions like getting groceries because you don't have the energy after working to get them yourself.

liberal_at_heart

(12,081 posts)
16. I have a day time sleepiness disorder. It does make doing things very difficult. It can be
Mon Mar 23, 2015, 02:04 PM
Mar 2015

frustrating and it has taken me decades to figure out how to accept that this is not going away. I don't give up trying to do things. I am going back to college, but it will always be a challenge. I try to remember that even if I don't accomplish what I set out to do, each day is still beautiful just as it is, accomplishments or not.

Kalidurga

(14,177 posts)
29. That's what chronic fatigue is like except there are a lot more symptoms
Mon Mar 23, 2015, 02:49 PM
Mar 2015

I am still having a hard time accepting it's not going to go away. I tried going back to school I finished a two year degree and got in a year towards a Bachelor's degree, but I won't be able to finish it because I had a relapse. It was 3 weeks before the end of the last semester I went so during the time I needed to study for finals and turn in a lot of term papers. It was pretty horrible all I did at that time was go to class struggle to stay awake find places to sleep on campus and write papers. So, now I am trying to get over not being able to finish. I am going to grow tomatoes instead and try to get out at least once a day for a short walk.

In any case even if you are just dealing with sleepiness alone that is a hard thing. I would be happy if the only symptom that I got rid of was the fatigue. All the others like pain don't bother me nearly as much and would have little impact if I had the energy to do what I want to do. It's not to say those symptoms aren't severe and have no impact, but they can be managed somewhat with painkillers and being careful with what I eat.

MADem

(135,425 posts)
104. That's getting a new name maybe, and a new diagnostic criteria...after so many years.
Tue Mar 24, 2015, 03:09 AM
Mar 2015
http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/

Experts generally agree that the disease has a physical basis, but they have struggled for decades to characterize its symptoms. The new report may help improve diagnosis, but the recommendations are unlikely to end the long, contentious debate over who has the condition and what may be causing it.

An institute panel recommended that the illness be renamed “systemic exertion intolerance disease,” a term that reflects what patients, clinicians and researchers all agree is a core symptom: a sustained depletion of energy after minimal activity, called postexertional malaise.

The new name “really describes much more directly the key feature of the illness, which is the inability to tolerate both physical and cognitive exertion,” said Dr. Peter Rowe, a member of the panel and a pediatrician at Johns Hopkins who treats children with the condition.

An alternate name for the illness, myalgic encephalomyelitis, meaning “brain and spinal cord inflammation with muscle pain,” was coined decades ago. Many experts now refer to the condition as M.E./C.F.S....

Kalidurga

(14,177 posts)
120. Thank you that describes what goes on perfectly
Tue Mar 24, 2015, 12:18 PM
Mar 2015

Not just the symptoms which match up with everything I have been telling everyone for years, but the problems with the medical health system as well. And a lot of people do say things like "Well I get tired too." Guess what before this happened I also got tired too, but it didn't knock me out for hours just standing up for 15 minutes to do the dishes.

MADem

(135,425 posts)
122. Peter Rowe, who is the MD mentioned in the article, did a very comprehensive study
Tue Mar 24, 2015, 01:14 PM
Mar 2015

on this topic, identifying the physical manifestations that so many doctors pooh-poohed and said were all in the patients' heads. If you pass out during a tilt table test, you're a sufferer. Orthostatic hypotension (standing in one place, getting lightheaded, even passing out--or getting irritable when standing in a line) is a classic feature of the condition. That is a component of the "exhaustion" you feel.

I have met the good doctor--smart guy. He "gets" it. You're not crazy--you don't "need a shrink," it's a real condition and they don't yet know how to fix it. It can be managed, though, to some extent. You'll never get it all back, though, and that's something you have to kind of deal with.

Not medical advice, but a suggestion that might help you if you don't have one already--invest in a barcolounger. A GOOD one. One that is wide, comfortable, is easy to recline (electric if you really want to be jazzy and don't lose power often) and that you can sleep in, if needs must. Be like Archie Bunker with that chair--it's YOURS. No one else's. That is a non-negotiable point. Key to management of the condition is RESTORATIVE sleep and the more comfortable you can make yourself, the better off you will be. The chair will put you in a position with the least pressure on your body and it will put your feet up above your heart which is a good way to crash. Keep a warm, long blanket close to hand and make sure you cover your feet--the warmer you are, the easier it is to sleeeeeeeeeeeep. Every time you get a good round of sleep, pat yourself on the back. Make it a goal to sleep WELL. Make sure everyone around you knows that it is vital to your well-being, more so than the average person.

Also, don't do anything you don't want to do. Don't "feel obligated," don't over-extend yourself, and learn to say NO. No, NO, NO!!! After the first hundred times, it gets easier! Eat well, be selfish--sounds self-centered, but you absolutely have to take care of yourself first, because if you don't, you will be of no use to anyone else--I'm sure you know all this but sometimes it's nice to get reinforcement.

It's not a walk in the park--the only way to manage it is to put yourself first.

http://solvecfs.org/research/cfidsaa-research-program-for-researchers/neuromuscular-strain-in-cfs/

Quantess

(27,630 posts)
12. Everyone should experience going out and about while temporarily disabled
Mon Mar 23, 2015, 01:58 PM
Mar 2015

By temporarily disabled, I mean a broken leg or broken arm, etc.

You will see that an alarming number of people are totally inconsiderate and thoughtless! There seem to be more inconsiderate strangers than considerate ones, unfortunately.

It really changes your perspective when you are the "disabled" one, temporary as the "disability" may be. If more people had to hobble around for a few weeks, they may become more considerate to people with disabilities.

CountAllVotes

(20,877 posts)
24. One day I went to a KMART to buy something
Mon Mar 23, 2015, 02:34 PM
Mar 2015

It was a bad day for me and I had a cane with me to walk. An old man was there with his wife and looked at me and said to his wife, "Look at that cripple! Look!".

It hurt me needless to say and no, I have not forgotten that day and how that old man made me feel. He is likely dead and gone by now I'd suspect as this happened probably 10+ years ago.

People seem to enjoy doing things like this. Why exactly I'll never know.

CountAllVotes

(20,877 posts)
30. b b buttt
Mon Mar 23, 2015, 02:53 PM
Mar 2015

He looked so good!

Not really in hindsight. The old codger looked like he needed a shower among other things.

He was bitter and full of hatred against ... the disabled.

I cannot tell you how many times people have had the nerve to ask me if I've ever been popped for my disabled placard. I tell them I never have been "popped" for having it. That is probably because I can barely crawl out of the car without falling over. Is that enough "proof".

When I think of people that are not really disabled that are indeed milking the system, it makes me quite angry. I know of more than one person doing this and I always find it curious to see how they can manage to do almost anything when they have to do it (like doctor shopping -- driving 300 miles to get an RX from another doctor).

Quantess

(27,630 posts)
35. That's bad.... I was jeered at by teenagers
Mon Mar 23, 2015, 03:01 PM
Mar 2015

Only because they didn't understand that I was vulnerable with my broken arm.

I had surgery with plates and screws, and no cast. I walked home from the grocery store and these 2 teenage girls walking side by side wouldn't make space for me. They nearly bumped into my vulnerable arm. It was hard enough for me to lug home the groceries with my good arm, so I was grumpy and on edge. I lurched away from them and uttered a noise in my terror and grumpiness, and they mocked me and laughed as they went their way. It was annoying, but that's how teens are.

I've been on crutches too, a few times, and people generally didn't hold doors open for me when I was right behind them. I definitely hold doors open for people on crutches, in wheelchairs, etc. Not everyone is so thoughtful.

Quantess

(27,630 posts)
100. Well then, that person was just being grumpy and over-sensitive.
Tue Mar 24, 2015, 02:51 AM
Mar 2015

If anyone chastised me for holding a door open for them, then it's their own personal problem!

 

ND-Dem

(4,571 posts)
90. an older man saying that? it surprises me, because older people are often somewhat
Tue Mar 24, 2015, 01:17 AM
Mar 2015

'crippled' themselves, mobility-wise, so why call attention to others?

I had a relative with a severe disability, and one time people were staring at him in a restaurant. I got angry, but he said "They're just staring because I'm so handsome, ND." He could brush it off; I couldn't. I've not forgotten it, though it probably happened more than 40 years ago.

MADem

(135,425 posts)
123. All you can do is shake it off. I would take the attitude that the poor guy
Tue Mar 24, 2015, 01:22 PM
Mar 2015

probably had altzheimer's or a recent stroke, or some other insult to his brain that caused him to say the first dumbass thing that came into his head.

The poor wife was probably his caretaker, and had to chase him around, riding herd on him, because he wandered off regularly.

This, of course, is a total fabrication/figment of my imagination and might not be true at all, but maybe it is...the guy calling you names may have had issues of his own. I mean, really, it's not like this is typical behavior in older people; they tend to get more understanding of human frailty as they get older, by and large, even if they get crabbier about other things! My source for this insight is personal experience, BTW!

loyalsister

(13,390 posts)
33. Ironically flip side is true
Mon Mar 23, 2015, 02:59 PM
Mar 2015

We are all temporarily able-bodied.

When someone I know breaks a bone or something, I am quick to point out what they are learning about access.

With voluntary simulations, you risk reinforcing the "thank God that's over, and I'm not in that position forever" rather than helping people develop empathy.

Quantess

(27,630 posts)
38. Temporary disability can be enough to change your perspective.
Mon Mar 23, 2015, 03:07 PM
Mar 2015

I wouldn't wish a permanent disability on anyone.

Or... maybe I'm not sure what you mean by voluntary simulations? From what I've seen, kids and teens think it's fun to scoot around in a wheelchair for a few minutes, just for kicks. If that's what you mean by voluntary simulation, then no, it doesn't work to foster empathy.

loyalsister

(13,390 posts)
45. Simulations are a part of some disability awareness campaigns
Mon Mar 23, 2015, 03:42 PM
Mar 2015

and they do more harm than good because they don't include adaptations.

If you participate in a simulation, what you experience will not be at all like a slice from the life of a person who has lived with that disability for any time. The difference will not be because you'll know that you'll be taking off the blindfold or walking away from the wheelchair at the end. The difference will be because, without any of the coping skills and techniques people with disabilities create and master throughout their lives, the best you will be able to manage will be to emulate the experience of being the single most hapless, incompetent individual with that particular disability on the face of the planet.

https://nfb.org/images/nfb/publications/bm/bm14/bm1401/bm140107.htm




When people only understand disability from the point of view of what they would not be able to do, they don't learn that what is disabling is external. It's not the paralysis, it's the lack of ramps or elevators that is the problem.

AtheistCrusader

(33,982 posts)
44. Been there, done that. Doesn't excuse this writer from using her disability to attack an option for
Mon Mar 23, 2015, 03:38 PM
Mar 2015

the terminally ill, which she is not.

I wouldn't ask her to walk a mile in their shoes.

AtheistCrusader

(33,982 posts)
110. I was by post 12's standard.
Tue Mar 24, 2015, 08:22 AM
Mar 2015

Last edited Tue Mar 24, 2015, 10:35 AM - Edit history (1)

Broke my right arm in two places. Had a cast that went from my hand to my collar bone. And I'm right handed so it was extra fun. Just buttoning my pants became a challenge.

So yes, disabled by Post 12's explicit conditions.

Edit: Again, I was addressing Quantess's post only. I never experienced anything negative from any kid or adult while I was sporting that heavy-assed piece of plaster. I don't doubt however, that if I had been on the sort of arm-brace crutches that a child that had his or her legs/nerves damaged from polio, my experience might have been drastically different, and markedly less positive. I think a lot of people treat different disabilities, or the perception of those disabilities, differently. So, I think Quantess's point about having a broken leg or arm to see what it's like, probably isn't a valid suggestion for the purpose of seeing 'what it's like'.

Quantess

(27,630 posts)
124. No, it really can't be the same. I acknowledge that.
Tue Mar 24, 2015, 01:23 PM
Mar 2015

But it gives insight as to how hard it is to get around. Too many of us take our abilities for granted.

In no way did I experience negative or consciously rude reactions from people-- just some thoughtlessness here and there.
My point was that I learned a bit of empathy for the truly disabled, just by being temporarily "disabled".

 

SheilaT

(23,156 posts)
71. Some years ago, while pregnant with my first child (who is now 32)
Mon Mar 23, 2015, 05:39 PM
Mar 2015

I managed to trip and break an ankle and wound up on crutches. When I was VERY noticeably pregnant. I never experienced rudeness or thoughtlessness, but rather many people when out of their way to help me out.

It is very distressing to read the accounts here of people disabled in some way, being treated so badly.

yuiyoshida

(41,834 posts)
15. There was a posted story on DU once
Mon Mar 23, 2015, 02:04 PM
Mar 2015

It was Republicans saying that Veterans should have died in Iraq , rather than come home wounded and had to be taken care of by our US government (Veterans Administration) for the rest of their life. The premise being, that Republicans didn't like their dimes spent on supporting a broken man whose disability came from that war... and that they should have just died over there because it would be simply cheaper to bring home his body in a casket.

That's the Ugliness of the Republican party for ya.

pinboy3niner

(53,339 posts)
21. Someone once told me I should have died in Vietnam
Mon Mar 23, 2015, 02:28 PM
Mar 2015

I don't know what his political affiliation was but he was an ugly, ugly human being.

OT, check out bravenak's sigpic above. You two have the BEST sigpics.

justhanginon

(3,290 posts)
49. To a certain extent they already are.
Mon Mar 23, 2015, 03:51 PM
Mar 2015

Anyone living with a mind and body so filled with hate and lack of empathy cannot be a person very happy with their own so-called life. Our vets deserve our thanks and gratitude and the person who holds that base attitude should be pitied.

CountAllVotes

(20,877 posts)
22. Statistics
Mon Mar 23, 2015, 02:30 PM
Mar 2015

For a long time I wondered what the suicide rate is for persons with multiple sclerosis, a disease that takes everything and gives nothing at all back but comments like, "You look great to me!".

What it is is a diabolical illness that fools everyone but the person trying to live with it. Over 50% of persons with MS live in chronic, often severe pain BUT they often look so very good!

In my search for suicide rates among persons with MS, I finally found the numbers on this and it is one in four persons with MS attempt suicide. I can see why personally.

We live in a world that hates and loathes the disabled so why not off yourself? It is a far easier option than trying to LIVE in a world that hates the likes of YOU including many physicians.

What a sad reality this is.

 

Savannahmann

(3,891 posts)
32. Some of us understand a little better.
Mon Mar 23, 2015, 02:59 PM
Mar 2015

For those who say things like that, think of this my friend.



God forbid they have to walk a mile in your shoes.

Orrex

(63,219 posts)
36. IMO it's a declaration of the speaker's limitations
Mon Mar 23, 2015, 03:05 PM
Mar 2015

It's unfortunate that it comes across as an attack on the disabled person.

K/R

 

BlueJazz

(25,348 posts)
37. It's a real shame, for the world, that this Guy didn't kill himself when he found out that the....
Mon Mar 23, 2015, 03:06 PM
Mar 2015

...future would not be as he expected.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.

 

ErikJ

(6,335 posts)
64. He's had lots of time for pure thought
Mon Mar 23, 2015, 04:33 PM
Mar 2015

which might have actually been why he's the most brilliant right now.

 

ND-Dem

(4,571 posts)
97. the US has had a bit too.
Tue Mar 24, 2015, 01:34 AM
Mar 2015

“Three Generations of Imbeciles Are Enough”

So wrote Justice Oliver Wendell Holmes, Jr. in Buck v. Bell, a 1927 Supreme court case upholding a Virginia law that authorized the state to surgically sterilize certain “mental defectives” without their consent...

State laws permitting sterilization of individuals deemed unfit to reproduce — most commonly institutionalized persons with mental illness, or even conditions such as epilepsy — were common in the first half of the twentieth century... more than 65,000 people were sterilized under such laws, which were enacted in more than 30 states...

http://www.genomicslawreport.com/index.php/2009/06/25/three-generations-of-imbeciles-are-enough/

MisterP

(23,730 posts)
125. "War Against the Weak" is a completely amazing work
Tue Mar 24, 2015, 01:40 PM
Mar 2015

but the author seems to have been hit by the "brain eater" since then ...

 

ND-Dem

(4,571 posts)
129. why do you say that? you mean his claims that the ford foundation and soros
Wed Mar 25, 2015, 04:22 AM
Mar 2015

are financing Palestinian terrorists in Israel?

http://www.financingtheflames.com/

or something else?

like his fiction about Microsoft taking over the world at armageddon?

http://www.formatnovel.com/

ah, I see now, this is what he's talking about:

The anti-Israel Boycott, Divestment, and Sanction (BDS) movement is said to have ignited in earnest in 2005. It was propelled by significant funding from the Ford Foundation, which poured millions of dollars into anti-Israel NGOs working in Durban, and later by the New Israel Fund (NIF), which financially backed such pro-boycott groups as the Coalition for Women for Peace.

http://www.thecuttingedgenews.com/


MisterP

(23,730 posts)
130. I guess he sees any criticism of Likud as a Ford-sponsored ploy to finish what Heydrich started
Wed Mar 25, 2015, 01:28 PM
Mar 2015

CountAllVotes

(20,877 posts)
40. That is austerity for you
Mon Mar 23, 2015, 03:20 PM
Mar 2015

Now that the EU is going bust, this is their new mantra.

In the article and the comments it states how wonderful things were before they got to where they are now in the EU.

Angela Merkel must be proud!

& recommend & read the article please.

whatthehey

(3,660 posts)
42. So because some people are insensitive
Mon Mar 23, 2015, 03:30 PM
Mar 2015

There should be no dignified option to allow those facing horrific pain and utter loss of quality of life with no chance of respite to choose to die peacefully and painlessly on their own terms and by their own choice?

Fill in the steps of that syllogism if you would...

Despite the snidely titled link, I sure as hell hope assisted suicide is there to help my disabled ass when that time comes.

whatthehey

(3,660 posts)
59. then tell me the fucking point
Mon Mar 23, 2015, 04:23 PM
Mar 2015

because whast I read is more predictable let-me-tug-at-unrelated-empathy-to-make-sure-people-have-to die-in-agony-because-I-think-the-alternative-is-icky screed. Oh and let's infantilize the disabled by making sure they never get to make end of life choices while they are at it.

pinboy3niner

(53,339 posts)
63. You seem to be trying very hard to make me wonder if you deserve to live
Mon Mar 23, 2015, 04:32 PM
Mar 2015


But that's not my decision, is it?

AtheistCrusader

(33,982 posts)
72. No it doesn't miss the point. The point was buried at the end of the article.
Mon Mar 23, 2015, 05:47 PM
Mar 2015

She is opposing having the option on the books even for the terminally ill. Everything else in the article was build-up backstory on her personal fear against the option being legal.

FUD that was thrown up over and over by the Catholics here in Washington State when we were working to pass I-1000. (An option that wasn't legal when my father needed it, and could really have used.)

liberal_at_heart

(12,081 posts)
78. I don't think that was the point of the OP. If it had been she probably would have included it
Mon Mar 23, 2015, 09:41 PM
Mar 2015

in the OP. I do support end of life decisions. I also support a more positive attitude toward disabled people in this country.

loyalsister

(13,390 posts)
52. "I sure as hell hope assisted suicide is there to help my disabled ass"
Mon Mar 23, 2015, 04:00 PM
Mar 2015

If you're talking about an impairment, maybe assistive technology, access to supportive resources, employment, and fewer assumptions about what the experience really is would be more helpful.

whatthehey

(3,660 posts)
62. I don't need to make assumptions about the experience. I KNOW and LIVE it
Mon Mar 23, 2015, 04:30 PM
Mar 2015

I'm employed and have the support needed too, speaking of asumptions....

But the end game is not impossible to predict. Or frankly, all that difficult. The OP posts repeated threads speaking as if for all disabled people that euthanasia is a horror to avoid. I am disabled and disagree - it is a boon to wish for. Choice always is, and we each own our own lives. Why is that wrong?

pinboy3niner

(53,339 posts)
68. I'm sorry you feel like that
Mon Mar 23, 2015, 05:01 PM
Mar 2015

Of course you have the right to feel the way you do about your own situation. But try not to take this OP personally. It's about the ignorant judgements of others, not about your choices.

loyalsister

(13,390 posts)
69. I am glad that you do have those supports
Mon Mar 23, 2015, 05:01 PM
Mar 2015

Not all people do, though. The OP refers to a widespread stereotype. Many people assume that disabling impairments are so tragic that all people who experience them reasonably believe that they would be better off dead.

Any time policies that support that sentiment are instituted, it reinforces that assumption.

The eugenics movement started at the beginning with the assumption that they would be better off not born. Some believed that out of pity, others supported it because they thought "those people" were an unnecessary expense. Support for involuntary sterilization of undesirables was legally instituted and practiced across the US. It cemented and reinforced stigma and devaluation of people with disabilities.


Pastiche423

(15,406 posts)
85. I am disabled and agree w/you
Tue Mar 24, 2015, 12:17 AM
Mar 2015

And I have stated here before that one of the reasons I moved to Oregon was because of the Death with Dignity Act.

What I discovered when I 1st came online at a website for the disabled, was that it is more the people that are born w/a disability that have fears about assisted suicide, than those that acquire a disability later in life.

This not the 1st of even the 2nd time the OP has posted about the same fear.

 

ND-Dem

(4,571 posts)
98. or maybe it's the people who acquire a disability who have a harder time
Tue Mar 24, 2015, 01:46 AM
Mar 2015

living with it than those born with a disability. and are thus more likely to be interested in assisted suicide.

liberal_at_heart

(12,081 posts)
99. That may be true for some. My son was born with Autism, has had it all his life. My husband
Tue Mar 24, 2015, 01:56 AM
Mar 2015

has been legally blind most of his life. They both face hardship. They both from time to time wish they didn't have a disability, but they focus on what they can do and what makes them happy and go on living their life. I have known some legally blind and even totally blind people that my husband went to blind school with that because they went blind in adulthood and had spouses and children were able to adjust to being blind and go on enjoying their life with their families. There were some at the blind school that did struggle a great deal with their sudden disability though.

Pastiche423

(15,406 posts)
101. Nope
Tue Mar 24, 2015, 02:58 AM
Mar 2015

It isn't a matter of a harder time" (it's hard no matter when you acquired the disability), it is the FEAR that some can't handle.

 

ND-Dem

(4,571 posts)
102. which is what i meant; they have a harder time accepting their situation.
Tue Mar 24, 2015, 03:00 AM
Mar 2015

I thought it was fairly clear.

"...people who acquire a disability who have a harder time living with it than those born with a disability"

Pastiche423

(15,406 posts)
103. I said is WASN'T a matter of a harder time and/or acceptance
Tue Mar 24, 2015, 03:06 AM
Mar 2015

of the situation. It's that many of those disabled from birth have a FEAR of Assisted Suicide.

 

ND-Dem

(4,571 posts)
105. I thought you were speaking of the fear those *not* disabled from birth have of
Tue Mar 24, 2015, 03:10 AM
Mar 2015

living as a disabled person. Since you weren't specific about the "fear".

The fear of the disabled from birth is more that society will devalue their lives.

Which is one of the reasons the newly disabled would fear living as a disabled person.

Pastiche423

(15,406 posts)
106. "Which is one of the reasons the newly disabled would fear living as a disabled person."
Tue Mar 24, 2015, 03:14 AM
Mar 2015

What does that mean and how does it relate to the discussion?

 

ND-Dem

(4,571 posts)
107. Because disabled lives are socially devalued, to become disabled inspires fear and
Tue Mar 24, 2015, 03:30 AM
Mar 2015

thoughts that life is no longer worth living.

Quantess

(27,630 posts)
73. How about, "don't be a rude asshole and insult people?"
Mon Mar 23, 2015, 05:52 PM
Mar 2015

Maybe, get a clue that you can't just say to someone "If I were in your situation I would rather be dead", because it's very rude and insulting.

liberal_at_heart

(12,081 posts)
77. Who said that? Any individual should have the right to make that choice for themselves, but
Mon Mar 23, 2015, 09:32 PM
Mar 2015

there is a culture in America that devalues the disabled. There are many happy, productive disabled people in this country who have to face dirty looks and nasty comments from both conservatives and liberals because they cannot do everything that everyone else does. Just look at our education policy toward the disabled. Our own Democratic administration says that all special education students should be able to make marked improvements. These are ignorant statements about the disabled. Yes, there are some who can make improvements, and there are some who cannot. Why is our Democratic government trying to force disabled students to perform at that same level as the general education students? Because our society does not value the disabled they tell them either get up and do what we do or screw you. I have an autistic son. There is a lot of research going on right now and eventually we will probably be able to test for it in utero and then people will probably start aborting them like most Down Syndrome fetuses are now and I find that a shame. Autistic people are incredible. Many are creative, resourceful, and think outside the box which is probably what makes them such a target. If you don't fit the model of what society says is valuable you mean nothing. I support a woman's right to have an abortion. I had an abortion when I was 16. But at the same time I would love to see a change in the attitude toward the disabled because they can lead productive and happy lives. To just assume they will be miserable and need not be alive is a wrong assumption.

AtheistCrusader

(33,982 posts)
43. This is a shameless attack on the UK version of Washington State's I-1000 bill.
Mon Mar 23, 2015, 03:34 PM
Mar 2015
"But the law doesn’t want to be able to kill just anybody. No. Just people who are judged to have less than six months to live (even though predicting how long someone will live is an incredibly inexact science and one that, in my experience, doctors do their best to shy away from). Most terminally ill people are, or become, disabled."


That bill is about people who are DYING, painfully, and slowly. Something most of us have the decency not to stand by and watch our pets doing, let alone watch a loved human suffer to their last breath. The person who wrote this wouldn't even be a consideration as a candidate under that law. She's not terminally ill.

http://www.seattletimes.com/seattle-news/washingtons-initiative-1000-is-modeled-on-oregons-death-with-dignity-act/

Ed Suspicious

(8,879 posts)
47. I think it's horrible having to deal with that, but
Mon Mar 23, 2015, 03:50 PM
Mar 2015

I wonder if people are simply bad at articulating what they really mean, and what they really mean is something to the effect of "Damn you're strong to handle the challenges that stem from your disability, and I believe there is no way in hell I'd be able to deal with those challenges as well as you."

mulsh

(2,959 posts)
48. The librarian at my high school lost both of his legs in an auto accident when
Mon Mar 23, 2015, 03:50 PM
Mar 2015

he was in his early thirties. About five years before I met him. He was not only about the strongest person I've ever known he was smart, resourceful and never showed us a moment of self pity. The only time I ever saw him slightly angry was when I tried to pick up one of his crutches he'd dropped.

I was lucky enough to work for him in the library and to spend some time away from school with him. He designed an operating system for paraplegics to operate autos that was a vast improvement on the then current systems. He also sailed his 20' boat solo from SF Bay to the tip of Baja in an annual race, winning it one year.

When I broke five vertebrae in my junior year, he was one of the people who were instrumental in helping me learn to walk again. I've met and gotten to know lots of so called "disabled people" since those days. As with able bodied people they have their strengths and weaknesses. I would never, ever have said to any one "I'd rather die than be like you."

 

bettyellen

(47,209 posts)
50. "Why would you say something like that?"... Is the kindest way I've learned to
Mon Mar 23, 2015, 03:55 PM
Mar 2015

Respond to such idiocy. Sad that so many cruel people think the world wants to know their opinion about everything. We really don't!

raccoon

(31,112 posts)
112. this one's a keeper:
Tue Mar 24, 2015, 08:30 AM
Mar 2015

"Why would you say something like that?"


I'll remember it to use with a family member.

 

bettyellen

(47,209 posts)
118. I believe I need to give credit to the wonderful Captain Awkward for that line
Tue Mar 24, 2015, 11:49 AM
Mar 2015

Great advice blog about "using your voice" in any sticky situation. She is my hero!

get the red out

(13,468 posts)
53. I can't imagine how anyone feels they have the right to say that to another person
Mon Mar 23, 2015, 04:02 PM
Mar 2015

The horrid things people to say to others these days, it's appalling. Has society lost the desire to not hurt and insult other people verbally? Sick!

People have the right to think what they want, but it should never be socially acceptable to say that to someone with a disability.

Dont call me Shirley

(10,998 posts)
55. Ben Stein said it, on a CBS Sunday Morning commentary in the mid 90's.
Mon Mar 23, 2015, 04:10 PM
Mar 2015

It was disgusting. I've deplored cbs ever since.

DonCoquixote

(13,616 posts)
56. Yep, and the ugly thing the anti-vaxxers hide
Mon Mar 23, 2015, 04:15 PM
Mar 2015

Is the fact that would rather kill other children than risk their children being like me.

Sissyk

(12,665 posts)
57. I hear you, KamaAina!
Mon Mar 23, 2015, 04:16 PM
Mar 2015

I have an hereditary crippling disease that less than a handful, according to world population, have that increasingly gets worse. It's brain, spin, nerve related. I have to look where I'm walking at all times. No hills, rough terrain, etc. etc. However, I still try to be very active and go fun places.

Last ballgame I went to, my husband was holding my arm walking down the bleachers (which are not easy in the first place, right?) and I stumbled a time or two. One woman shouted out to my husband that he should keep his "ole lady" sober if she wanted to come to games with him. Cute, huh?

In (just a guess according to my great grandmother, grandfather, and dad) but I'll probably be wheel chair bound in about 6 years with zero use of my legs. Just dead weight.

However, right now it's not that noticeable unless I stumble as I did on the bleachers; and no one really even knows I have a disability. I wish it would stay that way for us all, but it doesn't of course.

Anyway, I'd much rather be living with my loving family and friends in six to how many more years I have with the disability. It's not our disability that makes us different; it's the assholes around us.

Hang in there!

 

KamaAina

(78,249 posts)
66. We don't say "wheelchair-bound" anymore
Mon Mar 23, 2015, 04:44 PM
Mar 2015

or "confined to a wheelchair". You'll probably "use a wheelchair".

Jefferson23

(30,099 posts)
65. They may not know much about life then, if they feel that way to judge another. We all need to
Mon Mar 23, 2015, 04:42 PM
Mar 2015

advocate for ourselves as best we can and for those unable to do that.

pnwmom

(108,989 posts)
70. What those rude people are saying sounds like an admission of cowardice.
Mon Mar 23, 2015, 05:15 PM
Mar 2015

It takes special bravery to get through life with a serious disability.

 

ND-Dem

(4,571 posts)
82. "So when people in government, people with power, start trying to enshrine the idea
Mon Mar 23, 2015, 11:45 PM
Mar 2015

that disabled people are better off dead in law, something has really gone wrong in our society."

X 1,000,000.


Something *has* gone wrong, and in the US as well as the UK. It's been going wrong for a while, and unless people wake up it will continue going wrong.

nomorenomore08

(13,324 posts)
83. While I believe the right to die is just as fundamental as the right to live, I'm also horrified
Tue Mar 24, 2015, 12:02 AM
Mar 2015

at how quick some people are to judge others' lives as worthless. And saying so face to face is even worse.

applegrove

(118,734 posts)
84. I'm celibate. I assumed I would fall in love when I was younger
Tue Mar 24, 2015, 12:05 AM
Mar 2015

but I did not find anyone. I'm glad. I love being alone and deep in thought. People have said to me they wouldn't want to live that way. What would be the point. But I get such a connection with the world when I think about the issues of the day. I would not want to ever be in a relationship... I'd be bad at it. I would not have the time or capacity for quiet contemplation. That would be a miserable existence for me. I'm too sensitive. I can't hear. I simply don't connect to the world through another person with as much reward as I do when I think. Talking is not who I am or where my strengths lie. I'm living the life I was meant for. It is only in these past few years that I really feel it is my time in the sun. Before than I was used by one person or another and did not have the wide open space I crave. I have ancestors on both sides who had multiple siblings who never married, so I was born this way. I'm so lucky to be so self contained.

Nobody knows what you value and how rewarding it is to be just the way you are unless they know you very, very well. This person was totally judging you. And really you have to feel sorry for those who go through life judging others without knowing them and making the wrong assumptions. There is a really good book on this very thing by a Canadian writer Rohinton Misty called "A Fine Balance". It is one of those books that stays with you. I read it 15 years ago and often think of it.

raccoon

(31,112 posts)
109. It is unpardonably rude to say such things to anyone. I think the disabled person
Tue Mar 24, 2015, 08:19 AM
Mar 2015

might respond, "You are incredibly rude to say something so insensitive." Or something similar.

It's sad that some people are so tactless, insensitive, and rude.

pipi_k

(21,020 posts)
116. On taking it personally...
Tue Mar 24, 2015, 10:58 AM
Mar 2015
It’s hard not to take it personally when somebody implies that you’d be better off dead. And besides, it’s rude.


I don't think people who say they would rather be dead are are implying that the disabled person would be better off dead.

I think what they're saying is that the disabled person is extraordinarily BRAVE for dealing day to day with something that the speaker thinks he himself could not handle.


I'm disabled by a condition that I've been dealing with every. single. day. for 53 years.

It doesn't show on the outside.

Every so often I feel so terrible and discouraged by one aspect of it that yes, I do feel like I would rather not be here. So I would understand if someone said he would rather be dead than have to deal with what I do every.single.day.

What does that tell me?

That I'm brave as hell for not giving in to despair.


So. There are two ways of looking at this.

Latest Discussions»General Discussion»I Am Disabled and People ...