On Being Disabled

[mopaul]

there's a great thread in GD called, 'on being poor', that i'd like to copy, but with a different theme, the theme of being disabled and all it entails. there are so many kinds of disabilities, and i figured this forum would be the best place to compile a list, and your help would be appreciated. I'll kick it off.

Being Disabled is often being permanently poor.

Being Disabled is suffering humiliation at arriving at a restaurant only to find you can't get in there.

Being Disabled is being unable to communicate with others, and unable to use telephones, or computers.

Being Disabled is being forced to beg for help from government agencies, and being made to jump through bureaucratic hoops.

Being Disabled is very difficult on children, because kids can often be very cruel, and the pain continues throughout adulthood.

Being Disabled is being thought of as mentally stunted.

Being Disabled is being expected to suffer in silence and being stoic.

Being Disabled is having to ask for help, when you like to be independent.

Being Disabled is trying to get a job.

Being Disabled is often a burden on one's family and friends.

Being Disabled is being unable to drive a car.

Being Disabled is worrying about becoming more disabled.

Being Disabled is being permanently stuck at home, with no social life.

Being Disabled is feeling like less than a man, less than a woman, less than a mother or father, less than american, and simply less than.

Being Disabled is making some folks mad because they have to accommodate you.

Being Disabled is worrying how you're going to get out of a burning building.

Being Disabled is being turned away from a restaurant because of your guide dog.

Being Disabled is being self conscious and socially awkward.

Being Disabled is having to work 10 times harder to do what most folks do easily, and not getting respect for it.

Being Disabled is being afraid to cross the street in traffic.

Being Disabled is being denied Social Security or other help.

Being Disabled is being thought of a lazy, and a burden on society.

Being Disabled is looked down upon because you can't realize the american dream.

Being Disabled is finding it difficult to find a mate.

Being Disabled is being severly depressed, all the time.

Being Disabled is being targeted as an an easy victim.

Being Disabled is living in constant physical pain, and addicted to medications.

Being Disabled is trying to make others understand what if feels like.

Being Disabled is rejecting sympathy and pity and desiring equality.

Being Disabled is being unable to enjoy sports and physical activity, or exercises.

Being Disabled is being accused of being a whiner and complainer.


---feel free to add to this list, and i hope to pass it around to various formats.

thanks!

[mopaul]

1. added by Airman'sMom

Here are some more:

Being Disabled is having to fight in court to get your LTD payments that you paid premiums for.

Being Disabled is feeling like a fraud if your disability is invisible.

Being Disabled is losing your friends because they don't understand.

Being Disabled is being afraid of losing your spouse/family, because you can't make it on your own.

[raccoon]

5. Being Disabled is feeling "less than" other people. nt

[raccoon]

2. Those are so true,.

Except regarding your first one,

"Being Disabled is often being permanently poor."

I'd replace OFTEN with ALMOST ALWAYS.

[AirmensMom]

3. Unless you're lucky enough to have a working spouse.

I do, and that's what saves us.

[mopaul]

10. and not being able to make as much as your spouse

and feeling dependent and guilty about it.

[AirmensMom]

13. Or not being able to work at all after making more than your spouse.

Wondering why he sticks around with someone so dependent.

[Lugnut]

25. Same here AirmensMom

My $800 SS check doesn't go too far.

Welcome to DU! :hi:

[AirmensMom]

48. I hear ya, Lugnut!

It's not the same as the regular paycheck was.

Thanks for the welcome. It's great to be here!

:hi:

[Deja Q]

4. Best. Post. Ever.

[spuddonna]

6. This is spot on... Thank you!

My sister is disabled and I've heard almost all of these from her...

She can't drive (seizures), and is trapped - reliant on friends and family for transport because she lives in a rural area with little to no bus transportation. People tell her "Move to an urban area so you can get around!" She can't because she can't get/hold a job due to her medical disabilities, let alone afford rent on the SSI she receives. It's a horrible cycle of dependence, and often for her, depression...

[REACTIVATED IN CT]

11. I was temporarily incapacitated last year.

I broke my right shoulder (dominant hand) and I couldn't drive, open a can, cook, dress myself easily, tie my shoes, etc for months and had to rely on someone else to help me. It gave me a much greater understanding of what disabled people face every day of the rest of their lives

[spuddonna]

32. It totally sucks to be dependent on others...

When I had my first kid - BIG HEAD BOY - I could barely get up to go to the bathroom, let alone feed the family, take care of kids, etc. I hated it... passionately!

I was very lucky to be near family and friends who helped me. I could see how much happiness it gave them to help, but I still hated it... I've a very stubborn person! :)

Hey, I couldn't help but notice your name REACTIVATED IN CT. Does it mean you're in the NG? Did I mention I'm a very nosy person, too? :D

[REACTIVATED IN CT]

60. No, I'm a reactivated in the anti-war movement!

I was an anti-war protester in the 60's and now I have to do it again.

[spuddonna]

61. COOL!! :)

That's so awesome! Are you going to DC? I wish I could!

[REACTIVATED IN CT]

66. No, but my 24 y.o. son is

hoping to go.

[spuddonna]

73. I'm hoping to go to a local rally that weekend...

The 24th is my son's bday! :)

[mmonk]

7. nominated

[mopaul]

8. being accused of 'feeling sorry for yourself'

and yelled at for not being more positive.

[AirmensMom]

9. And when you ARE more positive, it means you're GLAD to be sick!

:banghead:

[madokie]

20. Being disabled sure does suck

Being disabled is thinking this will never happen to me
Being disabled is the loss of independence
Being disabled is the feeling of inadequacy
Being disabled is a fear of the tomorrows
Being disabled is a longing for the yesterdays
Only good thing I can say for being disabled is it's still having life

[rustydog]

12. Being disabled is being afraid you won't wake when the smoke

detector goes off.

[tblue37]

116. I am severely hearing impaired,

and I worry about that. Two years ago I slept through a tornado warning (I live in Kansas). Fortunately, the part of the city that got smashed was on the western part of town, and I live near the town center.

[sam sarrha]

14. Poverty is a Disability.. it takes a lot of money to get out of poverty

Poverty is usually something you are born into..

some is situational, if you have an education you can get out easier

College is not available to the poor, grant programs have been cut, tuitions up 50%.. if you are on the east coast it might be easier, but where i come from you CANT go to college on $6 an hour...you cant even pay rent outside of crack town.

i have collected 5 years of college, but one quarter at a time the requirements change and you can never catch up to finish the degree.

I am autistic, i am a savant, I have an IQ of 164 but i am functionally illiterate.

that isn't a disability.. unless you are looking for a job at 56.

[mopaul]

16. true, i've had several learning disabilities, including dislexia

inherited from my dad, who didn't make it past 3rd grade and was called retarded.

[sam sarrha]

36. Dsylexia/ADD/BLABLA is aften Aspergers Syndrome, functional Autism

http://www.campmakebelievekids.com/AspergerSyndrome.htm

http://www.evenbetternow.com/autism.html

[sam sarrha]

37. Dsylexia/ADD/BLABLA is aften Aspergers Syndrome, functional Autism

http://www.campmakebelievekids.com/AspergerSyndrome.htm

http://www.evenbetternow.com/autism.html

[mopaul]

15. same thread, but in the DU Disabilities forum

http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=250x1547#1552

[AirmensMom]

17. ... being treated like being disabled is a choice.

[wildflower]

80. Yes.

That can be the hardest part sometimes.

And thank you for this thread, mopaul.

May I add that being disabled means being unable to be an activist in the ways you or others might like. You have to be creative and also remind yourself that the things you are able to do are just as important (e.g. posting something on the Internet vs. standing on a street corner).

I made a post once called "To disabled/chronically ill DUers: 11 things we can do"...I think it's still in the Activists' Resource thread. If there is interest, I'll try to post it again sometime, and maybe add more things.

wildflower

[bunkerbuster1]

18. "Being afraid to cross the street in traffic." Been there.

I had experienced immense pain earlier, for months, this summer--barely able to walk or dress myself at times. I've improved immensely since then, but it made me take stock of how we treat disability, having experienced it first hand.

I know very well how it is, even in a parking lot, to wonder if the person bearing down on you with the SUV can actually see that you're going to take a little longer than most to cross. I know how it feels to know that if some lunatic decides to come after you, you're not going to be able to run to get out of the way.

I'd like to think that I'm more enlightened, more capable of empathy than most, since I'd been hospitalized a decade earlier and took weeks to recover from that. I had promised myself that I'd always be patient of others, even though they seemed to be taking way too long to (fill in the blank). But it's not really untill we're kicked on our asses ourselves that we really can empathize.

Thanks for the food for thought.

[BiggJawn]

124. Yeah, me too.

When I had herniated discs and my left leg would "go out" from under me, I would worry that I was gonna be caught only 1/2 way across when the light changed.

And KNOWING you have a problem , maybe it's not obvious to everyone, but YOU know you have it, that can really take all the fun out of life.

[Name removed]

19. Deleted message

Message removed by moderator. Click here to review the message board rules.

[pecwae]

21. Don't know how to phrase this to fit the list

but there are many disabilities that are not physically evident, so one doesn't 'look disabled.' If it's not obvious there are those who think the disabled person is just a malingerer.

[mopaul]

22. good point, many disabilities are so called 'invisible' ones

[AirmensMom]

24. Sort of like this one:

Being Disabled is feeling like a fraud if your disability is invisible. Yours is more to the point of how you're actually TREATED. Even if the psych says you're NOT a malingerer, no one believes it (especially the LTD company).

[earth mom]

23. Mopaul Thank You for compiling this list-you rock! Nominated!

:yourock:

May I add one?

Being disabled is being shafted by the government who thinks that it's okay to harm you by allowing the pharma giants to poison you and then lie that it ever happened. (For the Autistic Children in the country and the world!)

[Ezlivin]

26. Being Disabled means someone else has taken the handicapped space

After 25 years in a wheelchair, I'm still amazed at how quickly those Handicapped Parking Spaces fill up on holidays.

And, you know, I never see a single wheelchair when I go inside a store.

:shrug:

[caligirl]

28. I saw this happen and wrote a very nasty note, left it on their windsheild

[mopaul]

30. i think we should be issued blank citations to put on their windshields

with the same legal weight as the ones cops use.

[Individualist]

84. Was there a license plate or anything else

on the car to indicate the person was handicapped?

[mopaul]

29. don't get me started on that one!

so many times it's been a problem.

[kliljedahl]

87. I know how you feel

I'm not disabled, my father is. He had polio in 1954 when I was 5 years old. I've dealt with it all my life, but not like he has. One time I saw an obviously very fit man park in a Handicapped spot, right in front of a store. I rolled down my window & hollered "Hey those are for the physically handicapped" Turned out he was a deputy sheriff. I was nearly arrested after telling him "you of all people should know better". All in all it was a very ugly scene. I would have been arrested if my cousin, at the time also an officer, hadn't shown up. I have no sympathy for these people at all.

[caligirl]

27. Being Disabled is expensive, sending a kid to a private school

so his medical issues won't be ignored as they are in state schools.

[mopaul]

31. being broke down on the side of the road WITHOUT A CELL PHONE

being scared shitless to go out alone

[mopaul]

33. seeing a job you'd like in the classifieds, knowing you can't get there

even if they did hire you

[mopaul]

34. My husband has Muscular Dystrophy ---from Rainbowreflect

My husband has Muscular Dystrophy & we are trying to get
him SSD benefits. The hoops they are making us jump through are unbelievable. He is a very proud man & this is very hard on him.

having your pride disabled

[AirmensMom]

35. How could I have forgotten this one?

Complete loss of privacy -- being videotaped in your own yard, having to share your medical records with everyone.

[mopaul]

38. being told you're not really disabled, and being forced to prove it

i had to go get a physical from ss one time, and when i got there, there were 18 stairs up! how ridiculous is that?

[jbnow]

131. My funny story

is LTD spent days taping to prove I was cheating.
They had hours of a tall, slim, long haired person driving my car, working two jobs, going for 20 mile bike rides, doing yard work.

It was my son, home for the summer on college break. He's 8 inches taller and has no breasts but it was the bright side of invasion of privacy.

[Chicago Democrat]

39. Being disabled means you have no rights in this world

Being disabled means you are a loser

Being disabled means you have to go to the emergency room just to get medicine you can't afford


Being disabled means you can't control your brain


Being disabled means you are hated because you make people unconfortable


Being disabled means every day is going to suck

Being disabled means you are a Democrat


Being disabled means you are poor

Being disabled means you can't afford to shop at Prada

Being disabled means George W. Bush is taking what little you have and giving it to billionaire alcoholics

[mopaul]

41. you are hated because you make people uncomfortable

so many people are uncomfortable around the disabled, that's probably where i developed my sense of humor, such as it is, to make them less uncomfortable.

[mopaul]

40. having a bad attitude, with no way to vent it

anger is ever present, and others wonder why you're so cranky

[Chicago Democrat]

42. Being disabled means your doctor is loosing money by seeing you

Being disabled means you are on Medicare and Medicaid

Being disabled means that you are dependent on a Government that is now run by criminals

[mopaul]

43. my longtime family dr. dropped me when i tried medicaid

i rarely use medicaid, and rely on my wife's insurance, bless her soul. and she has to work extra hard to make up for my lack of income.

[theboss]

44. I have a disability and none of those apply to me

Being disabled means that you were dealt a lousy starting hand in life. But I've never begged for help and really wouldn't accept it if it were offered. I have a job, a home, and a great girlfriend.

I would hate for a ten year old kid with a disability to see this list.

[AirmensMom]

45. That may be true for you.

Good for you if you are able to work -- many disabled people are not. Perhaps if a 10-year-old kid sees the list, it will prompt him/her to think about it and treat disabled people more respectfully.

[mopaul]

46. good for you, i was born disabled too, but didn't have your fortune

jeezus pal, we're all on the same side. is that a put down?

[mopaul]

47. shall we have a disabled pissing contest to see who's the better man?

i just don't get your attitude dude or madam

[mopaul]

49. just to clarify, i've never begged for help either, oy, the smugness

[mopaul]

50. please 'the boss' share your amazing secrets of success with me

and how disabled are you, that you've managed to avoid all these pitfalls? and how did you develop that regal attitude?

[mopaul]

52. hello? are you deaf too?

[theboss]

55. It's not a regal attitude

And why does it take five posts to respond to me anyway?

How disabled I am is not really your concern. I was disabled enough to be teased in school, to have had to modify my home in some ways, and to have been in a hospital bed for three months after a surgery. If you saw me, you would say, "Hey...there's something odd about that cat."

My issue is I simply saw a ton of defeatism in your post. Yes, being disabled can be a problem. Yes, it can limit your employment prospects. Yes, it can limit your social prospects. Yes, it can cause all kinds of problems in your life. I'm never going to be a fireman, which was my dream at age 4. Of course, I'm never going to play linebacker for the Steelers either.

Unless you have reduced cognitive abilities, I simply don't see a disability as the key to a fulfilling life. How do you do it?

1. Study. I always found my disability to work in my favor in school. People may initially have lower expectations of you. Shock them. Be smarter than them.

2. Develop a sense of humor. I think my disability directly lead to my rather dark sense of humor. I was always funny. So I always had friends. And eventually, even girls start to warm up to the funny guy. (Well, maybe not until college).

3. Utilize resources. I was probably the only Ivy League student in history attending school on a paritial vo-rehab scholarship. (I guess this technically falls into the category of "help," though I had to find it, earn it, and keep it so I don't think of it as welfare). Not to sound like Michael Lesko, but there are millions of dollars floating around out there if you know where to find it. In high school, I made winning scholarships, writing contests, and so forth a cottage industry. I went to DisneyWorld for free because of it.

4. Find a support system. I admit being lucky in having two great parents and a big family. That's a huge leg up. But there are teachers. There are churches. There are teams. There are clubs. Find something and use it. Athletics were out of the question pretty early for me. So, I decided to become the statistician. All the football and baseball players needed me in high school, because I got them into the papers. In college, I worked in the press box. I still work nights once in a while at local college games for the hell of it. YOu would be shocked at how few people know how to calculate an ERA.

5. Don't give up. Don't ever give up. The best kicking coach in the NFL is confined to a wheel chair. Are you kidding me?

[AirmensMom]

58. Glad you at least recognize reduced cognitive abilities, theboss.

There are also breathing difficulties and many other disabilities that you and I could probably not think of off the cuff. Apparently, it is possible for you, with your disability, to do as well as you are doing. I have a good education and had a very successful career. Disability doesn't just "limit your employment prospects." In many cases, it ELIMINATES them. Some people cannot work with their disabilities -- and it's not just an attitude problem. All those other activities in your "support system" bullet are impossible for people with environmental illnesses. Please recognize that there are different disabilities and varying degrees of functionality among people who have them. I can drive, but that doesn't mean I think everyone with any disability could drive if he/she tried hard enough.

There is no harm in us voicing our frustrations about disabilities. It is hard and it actually feels pretty good to say so after holding those feelings inside for so long. Who else would understand these rantings but others who share the frustration?

[theboss]

81. There is nothing wrong in voicing frustration

Trust me, I get frustrated too. But there is a difference between being frustrated and being defeatist. The original list struck me as something close to hopeless.

I think there is enough hopelessness in the world without adding to the misery.

And obviously not everyone can do everything. But my best friend's brother is 100 percent deaf. This greatly limited his employment prospects and hurt his schooling obviously. But he managed to get a bachelor's degree in Computer Science. And he managed to find an IT job where he could work from home off email. Can everyone do this? No. But it's possible.

And even if you can't work, I think anyone - regardless of the level of their disability - can find some way to find value in their life.

I think people have more inner strength than they give themselves credit for. I just can't fathom ever sitting down and creating a list of the 100 ways my life sucks. I could easily do it. But I find it destructive.

[mopaul]

82. please make a list to counter my 'destructive' one

[AirmensMom]

85. It's not about finding value in life -- it's a list!

You can see the list however you want to -- I don't see it as defeatist or hopeless. It is what it is, a list. It has provided an opportunity for people to discuss the problems with disability. I frankly don't find it destructive to admit the struggles and talk about them. If you read through the posts, you will find some great examples of inner strength. However much value you find in your life and however strong you are, the frustration is still there and it's perfectly fine to talk about it.

[mopaul]

62. fuck football, and fuck your shitty attitude

i was born with a kidney infection. multiple surgeries.
i contracted polio at age two, many, many surgeries, morphine addiction, and was in shriners hospital for crippled children till age 13. one leg atrophied and 5 inches shorter. curvature of the spine. constant pain, constant deterioration with NO possibility of getting better, only worse.

aged 15, head on collision, maniac driver at fault, blinded for months with glass in my eyes, years of plastic surgery, multiple facial scars. missed years of school aggravated by severe dyslexia.

age 44 heart attack and stroke. i went from a slight limp, to a cane, to crutches, to a wheelchair, to an electric wheelchair, and my condition worsens daily, with no doctor able to help me or my chronic pain.

excuse the fuck out of me for not being lucky like you and looking down on others of my kind. fuck your millions of dollars floating around out there, and fuck disneyland.

climb down off your disabled high horse and get real, i'm in too much pain to listen to your 'never give up' sunny attitude.

goddamn

fuck your sardonic sense of humor too. and fuck the churches and support groups

[Pastiche423]

67. BRAVO!

Nothing pisses me off more than when people (idiots) say, if only...

You tried harder

You educated yourself more

You need a better additude

You prayed more :puke:

There ARE jobs out there for the severely disabled. :eyes:

My injury occured nineteen years ago next month. I continued to work/look for work for six years following that injury.

What I found out during those six years was...

Employers do not like it when you have Grand Mal seizures on the job.

Employers do not like it when you are often absent due to Lupus flares, pressure sores or other disability related conditions.

Employers don't give a shit if their buildings are not wheelchair accessible.

The poster you replied to can kiss my skinny paralyzed ass!

[mopaul]

68. pray in one hand and crap in the other, see which one fills up fastest

can you believe that 'person'?

[mopaul]

51. being angry at god, and becoming an atheist

over the burning question: why me lord?

[AirmensMom]

54. Just being angry.

Having a discussion that is therapeutic and having someone knock you down, illustrating several items on your list.

[Gelliebeans]

94. As a fellow disabled person

mopaul, I got ur back.

I always say if I had a nickel for every numb nut that offered that well intenioned but useless cure, I would be rich.

Also even if you are disabled NEVER assume that you have walked a day in someone's shoes. There are always variables and one way isn't always the best way.

I think personally, We all just want an equal voice that is heard.

On a personal note*
;) for crying out loud don't pray over me, it will give me the hee bee gee bees
:rofl: :hide:

[WCGreen]

53. I became Disabled a couple of years back...

Here is an OpEd I had published a little while back in the Cleveland PD...

If you missed it the first time around, back in August, here it is again....


In the last months of 2001, a new doctor was examining me, trying to discover why I wasn't responding to asthma treatments, why I kept getting pneumonia and why I always seemed to be exhausted. When a 5-foot-10-inch, 210-pound forty-something man has the lung capacity of a gerbil, something is terribly wrong.

http://www.cleveland.com/news/plaindealer/othercolumns/index.ssf?/base/opinion/1124789614156910.xml&coll=2

[kainah]

56. Being disabled is NOT about being inspirational

Remember when there were illness-of-the-week made for TV movies all the time? And all those "noble, inspiring" people living with their disabilities? Well excuse me while I :puke:

Being disabled is NOT about inspiring you. It's about finding one's own rhythm of life, one that allows you to get up in the morning and not feel defeated before you even look yourself in the mirror. If you're inspired by what I do, then get a life and work harder at your own. Don't put your expectations on me.

Actually, I always tell people that being disabled was a real blessing in my life. But I was extraordinarily lucky. It happened when I was very young (chronic illness beginning as a teenager, diagnosed in mid-20s) and I had time to adjust. I also had a wonderful husband who stuck by me and I was in law school at the time of my diagnosis so I had a social security disability law seminar eager to take my case on as their project. (I got SSDI but only after the normal two denials.) And I have a good mind and a great interest in the world so, not having to have a regular job and having great support from family and friends, I've been able to do what I want with my life ... and that's meant writing, political activism, and starting a non-profit to advocate for historic preservation. Also, without my disability, I wouldn't have crutches and then I wouldn't have had the crutch that Michael Stipe of R.E.M. signed for me last year. :-) So, for me, disability has been enormously liberating.

But, mostly, I think that has come from having faced death on a couple of occasions and realizing what's really important in my life. Most people never realize that until it's too late and they spend entirely too much time running from death. Embrace the reality of death and you're free to live today the best you can. That's living life.

[catmandu57]

57. All of the above

Plus watching yourself degenerate. Knowing that tomorrow you won't be able to do what you did yesterday, last week, last month. I'm damn near invisible now, I stay here in front of my electronic world 90% of the time now, rarely venturing out unless I have Marshmallow to cling to.

I'm afraid of going anywhere I'll have to stagger before I find a shopping cart to hold myself up, if I go shopping and someone hasn't left a cart in the lot, I go home.

Last year I didn't do that. ten years ago, I fished alone at night on the lake taking care of myself, I haven't been able to do that for years now. Twenty years ago, I could walk all day, twenty miles or more if I had to, now, I'm just a hair away from selling my car, because I'm getting to the point where I can't use it anyway and why the hell should it sit in front of the house?

Being disabled means missing the big march this weekend because for starters there's no way to afford the trip, and two I'd have to roll and get someone to push, and find a way to accommodate a wheelchair.


Most of the time I'm okay with this, but I really wanted to be in DC Saturday.

[mopaul]

63. damn near invisible

of course, you and i have met, and we know the deal. i truly wish i could get to that protest too, or cindy sheehan's. soon, i too wonder if i'll be able to continue driving a car, one of my greatest pleasures.

the constant deterioration is the worst thing, knowing that it'll never get better, and can only get worse. but how much worse?

oh, and the never ending nightmares about being lost and trying to get home by walking or crawling, hence, chronic insomnia.

at least we can still whine eh pal?

[KakistocracyHater]

59. Being disabled

means your doctor drops you like a hot potato because you have a chronic condition & that makes him feel bad; so you continually get referred to other doctors, specialists, who then after awhile want to hand you back to the doc who shuffled you off to begin with.

[mopaul]

64. and being denied insurance because of 'pre-existing' contitions

[H2O Man]

65. Being disabled

is having your 6 year old daughter say, "No one wants Dad on their team in soccer. All he does is stand there." Being disabled is having your three older kids and wife try to say, "Oh, that's not true."

Being disabled is having the opportunity to go places where other people can't go. My mind is free.

[Just Me]

106. I imagine it requires an exceptional development of understanding,...

,...of others' invisible "disability" to accept, cope, comprehend and integrate such human uniquenesses.

:hug:

[AirmensMom]

69. Thanks for starting the list, mopaul.

Great discussion!

:yourock:

[wellstone_democrat]

70. Being the parent of someone disabled means

Means that no matter what the disability, the first question is always: did you do drugs while you were pregnant?

Means that you have the horrible and repetitive experience of sitting in operating waiting rooms, in clinic waiting rooms, hoping for an answer, for an attentive doctor, for your child's exam or treatment not to be painful or at age 14 be done casually in front of a group of residents most of whom are of the opposite sex. Trying to make them "like" you so that your child will get *everything* that he or she needs and not be shuttled to the back of the line in treatment.

Can mean that other family members and even spouses "can't deal with it anymore" and you now can work and try to care for an ailing child

That your credit might be "shot" forever as medical bills, poor or challenged insurance claims or denial of coverage at new jobs keeps piling up....and things that keep your child alive and functioning being eliminated from coverate...then , when your disabled child is an adult, assisting them becomes even harder or impossible because you have no credit and you can't cover them on your insurance if they are not totally disabled but "only" disabled

Fearing that you will die and that no one will take the time or care

Worst of all, the most terrible thing of all is watching the child you love more than life itself suffer more than the normal slights and insults of childhood and adolescence. Watching your child be passed over in team choices, in social settings, in so many things.

Having to hear people tell your child that its "attitude" keeping him or her "back" when its physical disability and chronic pain.

that's also what it means.

[mopaul]

71. i understand. my poor folks went through hell raising me

working so hard, and worrying so much, it's very hard for parents to understand till it happens to them. sometimes i used to think it was harder on them than on me.

it elevated them to sainthood in my eyes.

i commend you.

[wellstone_democrat]

76. no saints Mopaul

i guarantee they had their tired hopeless angry moments but it didn't matter. They loved you and would do anything to take away the pain and struggle or to make it easier. Anything, anytime. And I also guarantee that all they wanted in return (except for a miracle "cure") was the same thing all parents want: you to love them.

[jbnow]

133. It must be even harder

watching your child go through the problems then having health problems yourself.

I have so many things wrong with me...but I couldn't bear having my child have any of them.

But you do bear it because there it is and you have to.

Wishing you strength

[mopaul]

72. oh, & using the disabled as subjects of humor, south park, family guy

and american dad for instance. real real funny

[Pam-Moby]

74. My adult daughter has CP and lives with us and is wheelchair bound.

I had this peom years ago and lost it. I just found it again on the net and wanted to share it! It is for all of the special people that has loved ones with special needs.
HEAVENS SPECIAL CHILD
A meeting was held quite far from earth
"Its time again for another birth"
Said the angels to the Lord above
"This special child will need much love"
His progress may seem very slow
Accomplishments he may not show
And he'll require extra care
From the folks he meets way down there
He may not run or laugh or play
His thoughts might seem far away
In many ways he won't adapt
And he'll be known as handicapped
So lets be careful where he's sent
We want his life to be content
Please Lord, find the parent who
Will do a special job for you
They will not realize right away
The leading role they're asked to play
But with a child sent from up above
Comes stronger Faith and richer Love
And soon they'll know the privilege given
In caring for this gift from Heaven
Their precious charge, so meek and mild
"Is Heavens Very Special Child"
Author Unknown

[mopaul]

75. sometimes, even with all my woes,

i see a child with cp, and break down and cry. i grew up with children with every known affliction in shriner's hospital. black white hispanic and asian, all sharing the same dilemma. and i know i was one of the luckier ones.

great poem, thanks for sharing.

[Pam-Moby]

77. Your welcome. When my daughter was young

I used to set and cry because every mother wanted their child to be healthy. That poem helped me through the hard times.My daughter is very verbal. She was mainstreamed into regular classes. The physical condition is the tough one for us.

[Corgigal]

78. My disabled husband

who was intentionally struck with a car by a criminal. He was upset that he couldn't see his kids and decided to break into his ex's apt and then destroy his owns kids presents. People heard him in the Apt complex and call 911.

Hubby arrived got out of his car and was struck by this asshole. A few years later, in the mail, on Christmas Eve, my husband was fired because he couldn't return to work.

[Pam-Moby]

79. I am sorry for what has happened.

[mopaul]

83. bizarre and saddening

being disabled is just a freak incident away from us all.

[AirmensMom]

86. How true!

[despairing optimist]

88. Being disabled is not believing you're disabled too

If your disabilities aren't readily apparent, you're always suspect. You distrust social situations because you find new people threatening or, perhaps worse, pitying if they believe you. You want people to leave you alone but then agonize over your increasing isolation. You don't fit in anywhere and always struggle between where you are and where you'd like to be. Being disabled is living in limbo, slightly suspended animation.

And being disabled is knowing that the line between ability and disability is as thin as a heartbeat or the blink of an eye. You can go to bed fully functional and wake up disabled, because it may have happened to you, but you agonize because too many others have to have it happen to them before they learn any compassion and offer support.

And being disabled means knowing that the support that is given by one hand can be taken away by that same hand or another one, so you live in fear of even greater losses than what you sustained from your disability. I guess you could say that when you're disabled you learn how infirm society is and how it has never been fully able itself. Being disabled gives you lots of time to understand all this and even less ability to change it.

Being disabled means wondering how many able-bodied people are reading this thread and hoping that these words aren't just preaching to the choir.

[mopaul]

90. and trying to deny that you are indeed disabled

i've always done that, only lately, it's difficult to deny

[despairing optimist]

91. Between a rock and a hard place

If you try denying it too much, you get hurt when it tells you who's boss. But if you don't deny it, you roll up in a ball and wait to die. Truly awful. But you find a way to go on somehow or another.

[PA Democrat]

89. Being disabled is having people talk about you as if

you are a piece of furniture in the room, unable to understand what people are saying about you.

People have done this to my daughter and it absolutely infuriates me.

[Traveling_Home]

98. For her next IEP

"Nothing about me, without me"
http://www.thenthdegree.com/nothing.asp

Here's my hero
http://adapt.tnet-hosting.com/gallery/displayimage.php?album=5&pos=2

[ismnotwasm]

92. My husband has Multiple Sclerosis

Many of his symptoms are "invisible" He has secondary-progressive MS, which means he doesn't get better, he just gets worse slowly. He takes drugs that make him sick to fight it. In fact he just started chemotherapy (it's a certain type they use for MS)He applauds your list. He would give a limb to be able to work again.

Maybe an addition; Always hoping there is a "cure" down the road, but knowing in your heart there really isn't. Or a treatment that doesn't make you sick. Or drugs that weren't so damn expensive. And in his case the constant fear-- anyday he could lose his ability to walk,(He can't walk far now) or his eyesight, (to optic neuritis) To lose control over his bladder and bowel functions. (Very real possibility at this point) Realizing you're brain has actually shrunk, and you have short term memory deficit, and there isn't a damn thing you can do about it. (He tries so hard)

He asks me sometimes, "Do you love me" "Yes, I love you" I reply, "Unconditionally?" "Yes, unconditionally" He needs that kind of reassurance sometimes. It hurts his pride to ask, but ask he must. He has a soul eating fear that he has to walk through. Every day. And every day he makes it through
He's my hero. Hands down.

[mopaul]

96. several of my friends have ms

it's not good, no one should have to go through it. i hope someday they can cure this and many other human curses

[jbnow]

134. I have MS also, dx'd in 83

but "I look so good". It is fatigue, vision and the pain of trigeminal neuralgia that got to me. The latter is interesting...bolts of pain if I talk or eat or any mouth movement when it's going on. Happy when it's gone.

Haven't taken the drugs for it...but have memorized the sales pitch in case I ever want to sell snake oil. I am not saying they are snake oil and they are all we have. But still

"One thin thousand dollar bill a month! Come and get your drug! It doesn't make you better and you will feel worse. But don't stop, never stop, because it might keep you from getting worse. You might get worse, but maybe not as bad as you would be if you didn't take it. Come and get it, just one slim thousand dollar bill"

The main thing you lose with MS or other disabilities is the illusion of certainty. My kids were preteens when I found out...in the end I held an MS party based on theory that if you have to have MS you might as well have a party. In 83 there weren't medicines, just conflicting advice so I ignored doctors for years and tried to listen to my body.

I was pretty good natured until it started to hurt and interfere with life. Not driving...that dependency makes me feel less of a real person, can trigger despair.

I know men sometimes have a harder road with it, but he is so not alone. That is meant both ways. So many have MS...and he has you.

Wishing him the best

[ismnotwasm]

136. Not many know of the connection between Trigeminal Neuralgia

And MS. He doesn't suffer from that thank god--does have tinnitis. I'm a nurse and I remember doing a paper on it in nursing school. I understand it's horrible pain, and difficult to treat.
Thanks for the well wishes. And we return those wishes right back to you!

[Bravo411]

93. Being disabled is ...

having your job outsourced to another country.

[Traveling_Home]

95. Great - I'll steal parts for later use

If you're rich and have a chauffeur you're envied
If you're disabled and have a driver you're dependent
(cook, cleaner, laundress,etc.)

If you're disabled ya gotta have attitude to be a hero

Here's a beautiful bunch of heroes (Save URLS if bandwidth is exceeded)

http://adapt.tnet-hosting.com/gallery/displayimage.php?album=random&cat=10002&pos=-74

http://adapt.tnet-hosting.com/gallery/displayimage.php?album=5&pos=2

http://adapt.tnet-hosting.com/gallery/displayimage.php?album=5&pos=7
==========================================

http://www.adapt.org/freeourpeople/aar/wdc05/

www.adapt.org

[jbnow]

135. I tell my doctor

that if I were a princess I wouldn't really have problem.

I'd have people to do all my chores, bring me food, carry or drive me around. No one would notice.

I am waiting but am still not a princess, so instead am just disabled.

[KoKo]

97. True....but it's more important to Max One's Credit Card to buy Overpriced

Real Estate in Florida, SC and NC near the Ocean because the Gubmit is going to take care of you.

What you say is correct...but most folks don't think "THAT" could ever happen to them...and that's why we are what we are these days.

Thanks, MoPaul..for a timely post to remind us...those disabled and unenabled and enabled and all inbetween.

[Traveling_Home]

99. Being disabled means you can be

President Franklin Delano Roosevelt
http://www.its.caltech.edu/~asa/dc_pics/dc_pics-Pages/Image16.html


Read about FDR - "Splendid Deception" by Hugh Gallagher
http://www.abipropub.com/fdr.htm

[Just Me]

100. Being disabled requires strength to get past being disadvantaged.

I am fortunate to be without a disability. I doubt I'd have the strength to get past such a disadvantage because I've had to struggle so hard without being disabled to grow through this crazy life.

:hug: to all those who are forced to cope with being disabled. I admire your strength!!!

[mopaul]

101. good point, i was born this way, but to suddenly become crippled...

is probably a terrible shock, i've always felt that i too couldn't handle that.

[Just Me]

102. Honestly, Mo,....from what I've seen of you, here,you are notably "abled".

You have a unique talent to communicate. A part of me really envies that,...a greater part of me admires and appreciates it. You have touched and inspired me and my life in so many ways: provoking both my thinking and my feeling about a slew of issues and situations.

In other words, I guess, in MY WORLD,...you are an exceptionally "abled" person because you are far more active in touching my humanity than those who hold a fame/fortune that is completely detached from my/our existence.

:hug: Thank you for that!!! :hug: Thank you!!!

[mopaul]

104. thanks jm

being mostly homebound gives me lots of time to read and postulate, and at 54 i don't see any point in holding back my feelings, and damn the consequences.

i'm so glad to have this forum to read, rant, and share. and to meet all the fine people in here, even if only in cyberspace.

and to occassionally run into those who love a good debate, arguement, or into those who disagree with me too. like with ray charles, if one sense is missing, the others kick in more powerfully.

cyberhugs all around.

[Traveling_Home]

103. Disabled at 2 1/2 - long time ago

I always thought there was a big difference between being diabled young vs. later in life

I had Polio when I was 2 1/2, now its 52 years later.

I was always broken and they finally quit trying to fix me
vs
I used to be ok and then I became broken.

My selfimage is as a person with a disability - a proud person with a disability. I have no before.

For others, their self image is that they were an able-bodied person and that now their broken.

One of my heroes
http://adapt.tnet-hosting.com/gallery/displayimage.php?album=4&pos=9

Big difference from a Psych perspective (Rehab Psych too)

[mopaul]

107. you and i got polio at about the same time, right before the vaccine

we are the last and youngest polio victims. i rarely meet fellow polio survivors. i assume you have post polio syndrome like me too.

it's rough on kids, but growing up disabled is less of a shock than sudden disability.

[Traveling_Home]

111. Just an Old PPSer

First diagnosed with PPS in 1996 but was able to keep working until 2001. Then went onto SSDI, etc. Not alot of us left, thanks be, but new cases arise from a spread from Indonesia via the Haj, and another in Nigeria. Almost had it eradicated before religious politics got involved.

Let's see FDR, you, me, Ed Roberts, Justin Dart, Mia Farrow - pretty odd company.

Check out the heroes pictures I posted from ADAPT. I luv us.

[Just Me]

119. I've witnessed how that plays out,...

,...watching a close friend of the family suddenly have his body seemingly betray him. He always portayed the epitome of strength, hiding his struggle until he could hide it no more. I was so pissed at the way so many, especially in his own family, practically abandoned him because,....because,...the "pillar" needed help?

:cry: I still get upset reflecting upon the abandonment of such a caring, generous human being,...by his own incredibly weak family,...after all he burdened, physically and mentally, without complaint, to successfully care for them. :cry:

[mopaul]

120. i know a guy who got very sick, & his wife couldn't handle it & left him

i can't imagine a worse hell than that

[Traveling_Home]

105. Is it a compliment

Is it a compliment to be told "You do such good work, I never think of you as disabled"?

How about "You do such good work, I never think of you as a woman"?
How about "You do such good work, I never think of you as black"?


Spelling Edit: complement -> compliment

[mopaul]

108. i assume it's a compliment, anyway, i take it as one

but i see your point

[Traveling_Home]

115. Nope

Kind, well intentioned, meant as a compliment but you and I and the person who wrote "the compliment" would be embarrassed as hell to be caught saying "You do good work - I never think of you as black".

That embarrassment is an acknowledgment of the patronizing and condescending attitude embedded in their "compliment". It gives a great opportunity to educate or berate depending on your mood.

You are, I presume, a highly competent person with a disability. Competent and disabled are not opposites any more than Competent and Female or Competent and Black - although Competent and Social Worker might be.

;-)

Spelling Edit: Complement -> Compliment

[graywarrior]

109. Thanks fot this thread. I volunteer for a group that services the disabled

by designing their newsletter.

I also have a disability that is hidden. I am not on disability, although I have a right to be, but it is too difficult to go through the process. It has affected me my entire life.

[mopaul]

110. hopefully you'll never have to deal with the various agencies

and i agree, try making it without them, they are a pain in the ass, and often humiliating to the max.

[graywarrior]

112. I have dealt with agencies here in Florida

It was enough to make me stay on my own, faking it, pretending I can work (which lasts about 3 months before my disability takes over)and living a sub-standard life.

Part of my disability is denying I have one...just recently came to complete terms with it after putting myself and my partner through hell for 25 years.

[mopaul]

113. i still try to deny it

every day, but every day it becomes more pointless. this often leads to injuring myself by overdoing it physically, then regretting it for weeks.

denial, not just a river in egypt.

[graywarrior]

114. Oh man, is that ever true. I do the same thing

I actually believe I can still run on a treadmill or use a stairmaster. Even yoga sometimes brings on a 3 day migraine. Then I get caught in a web of depression that lasts until I exhaust myself into another depression.

Vicious cycle of one disability that triggers another one.

[alfredo]

117. Being disabled, but not visibily disabled is

a strange fortune. At times you feel the need to justify your disability. Sometimes you forget only to miscalculate and have reality slap you in the face. Sometimes you just want the pain to end. Sometimes life is good.

Tomorrow I will get up, have some tea and oatmeal. Maybe my arms will work well, maybe they won't.

[graywarrior]

118. I helped a disabled vet get a job today

Someone mentioned that a non-profit was looking for a receptionist for 6 weeks. They wanted a disabled person. I call the disabled agency I do volunteer work for. They called the vet. He called the non-profit and got the job.

Funny thing is, none of these agencies know I have a disability.

[Just Me]

121. I call that, healthy medicine.

:hug:

[graywarrior]

123. Yeah, I'm still feeling good about that one.

Another related thing is I just finished editing a story about this vet for the newsletter and I included a photo of him. I never met him before, but sort of stands out. So, Im' at Big Lots today, and who's in line but this vet.
I introduce myself and he turns out to be one of the nicest guys I have met in ages. Made my day.

[mopaul]

122. alcoholism

i suppose i drink to lessen my anxiety, and i suppose i smoke dope to do the same, but it does seem to help. although i feel like i should try to live soberly, it's difficult, and i try to keep it under control.

have so far avoided all psychotropic drugs for anxiety, etc., but i don't look down on those who need a crutch.

[graywarrior]

125. Same here.

Sober...Son of a Bitch Everything's Real. Going on 20 years. Hard to overcome, but here I am.

[Traveling_Home]

132. Many of us

Alcoholism and drug abuse are rampant in the disability community though smoking dope doesn't count.

I decided!!

Actually, I'd qualify for Colorado's medical marijuana program. Yes, I'm aware of trhe latest Fed Ct ruling and no I wouldn't sign up before that either - I just qualify.

[Dave243]

126. My youngest child was born with a lot of troubles

I am not sure what will ever happen to her and how it will go for her. We are not going to teach her that she is "disabled" though. We are going to teach her to do her best. I am going to teach that child to shoot to, just like her sisters so that she will not be an easy victim. Once you have a handicapped child you learn a lot of stuff you wish you didn't know. We are going to do our best to keep her from feeling sorry for herself. Everybody's life is hard and hers I'm sure will be harder but every day above ground is a good day.

[mopaul]

127. i always pack a rod

being paranoid of being taken advantage of.

the problems of having a disabled child are inumerable. very stressful on the parents.

[graywarrior]

128. Hey, welcome to DU

[Dave243]

129. Thanks

I've lurked here a long time. I'm not as liberal as some of the folks here, but I was raised by real Yellow Dogs.

[otohara]

130. Being Disabled Did Not Make Me Special

like my mom said it would - but it did make me cynical, and that's OK!

[expatriate]

137. Great thread, Mopaul!

And as the sister and adoptive mother of people with disabilities, as well as being disabled myself, I have a few to add.

Being disabled is having people who have read "inspirational true" books about people with disabilities that are actually fictionalized and sanitized and often preach the author's particular religious belief, being sure they know everything there is to know about disabilities. These books include the ancient and fictionalized Karen and With Love From Karen from the 1950's (she lived a MIRACLE! - at least according to her mother, Marie Killilea who minimized her daughter's severe disability to make the story more palatable and depicted the family as a bunch of saints, which in reality, they were not), Todd: A Father's Story from the 1960's (a blatant advertisement for Glenn Doman's controversial "treatment" for brain injury and very, very rose colored with the outcome deliberately left vague), and Son Rise from the 1970's, (Barry Kaufmann's completely misguided attempt to depict autism as a "choice" children make, and how they can be "cured" with extra attention, with lots of emphasis on his own particular religion, something he calls "Option".)

Being disabled is having people who have read these and similar books tell you that you just have to work really hard and always stay cheerful, and you will be okay.

Being disabled is having people tell you (or one you love) that God must love them very much to make them so disabled. This one has brought me close to killing some people. That kind of love I can do without, thanks.

Being disabled, when your disability is "invisible" (emotional illness, heart disease, chronic pain, lupus, early stages of MS, etc), is having people tell you that you just don't try hard enough/it's all in your mind/you're malingering.

Being disabled is being told that your heart condition is your fault because you ate too much junk food - even when you were born with it. Or telling you "just have a transplant and you'll be fine!"

Being disabled is, when you have a condition that could worsen without taking extreme care, such as losing your eyesight should you engage in rough sports or sustain a blow to the head, people will say things like, "well, maybe you should just go ahead and live a full life and lose your sight, so you'll have it over with." No, I'm not making this up, this was said to my brother many times. Thankfully, he still has what remains of his sight.

Lastly, being disabled through severe mental illness means, unless you are rich, that you will never receive institutional care if you need it, particularly if you need it for the rest of your life. You will, unless you commit a crime and are put in a facility for the criminally insane, end up being continually released from institutions to manage your life and your medications on your own. And this means in almost all cases, that at best, you will have a marginalized life - at worst, you will live on the streets. This policy is supposed to be "humane".

[jillan]

138. What is the purpose of this thread? To feel sorry for people that are

disabled?

I have a daughter that is mentally, and visually disabled.
Other than the fact that she will be dependent on others for her whole life, I don't view her life as tragic as this thread makes it out to be!

I have never known anyone to enjoy life as much as my daughter.
She has a wonderful way of looking at this world.
If someone is sad, she will go out of her way to make them laugh.
She is a joy to all those that are open enough to let her into their life. She has taught me patience, and not to take things so seriously.

I am confident that she will find love and happiness wherever life takes her, because she brings so much love and happiness in whatever she does.