Ever had to use a wheelchair? What was it like?

[Philosoraptor]

I'd like to hear some personal stories.

[soothsayer]

1. because....?

[Philosoraptor]

2. Curiosity.

Sparked by this story:

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=389&topic_id=730043&mesg_id=730043

[EST]

3. Yes, it's not fun, but you get used to it.

I don't currently have to depend on the chair or crutches, but I've been through it, more than once.
I had a broken back, dislocated and hyper-extended shoulders, broken leg, cut partially off, and some other stuff.

Had to have a chest brace, rigid back chair, and a few other assists.

When you have been very active, doing everything for yourself, from putting in a septic tank to taking care of lots of animals, earning a living, and so on, it is very difficult to depend on other people. And that is probably the most difficult of the challenges.

You have to learn not to boss people around. You can ask for something to be done, even give advice, if is really necessary, but you have to recognize that you are on wheels and let other people do things their way or not at all.

If you have a big house, it's not too bad. Going outside under your own power requires ramps, not too difficult a task, and all barriers inside must be removed or changed.

There are now available reach extenders that allow you to grab things that are out of reach, which is practically everything. You'll learn to arrange things so that all the stuff that you have to do, yourself, are easier, with the common items that you use put on lower shelves, or middle drawers, because reaching too far up or down can be painful and make you unstable.

Usually, when one has to become wheelchair bound, either temporarily or for a much longer term, there are physical therapy specialists whose business it is to understand and teach you how to do things-pay attention to them; they know what they are talking about and you'll be learning a lot.

There are other little things that I could help you with, but that's enough for now. Let us know if there are other questions--DU has an amazing breadth of talent and experience.

[Philosoraptor]

4. I'm pissed that there are so many places I can no longer get in.

And so many places where the rest rooms are not accessible.

[EST]

9. I'm not sure if this post is a joke or an unconscious play on words.

Either way, it's amusing.
Many places have thoughtfully recognized that good business requires some consideration for folks who are not necessarily as able as a healthy sixteen year old.
In the community represented by people who have to use assists to get around, there is a term "tabs" for those who can get around without. It means, "temporarily able bodied."

It takes only one zig when the best option was zag and there you are, a broken toy, with the prospect of putting your life back together and nothing being like it used to be. I read the thread you pointed to you and was stunned at the insensitivity and callous disregard posed by the idiot featured.
It is delicious to think people like that are going to get their just rewards, but often they do not, going through life, hated and ridiculed--behind their backs, most likely-- because such nasty examples are often such sharks that they will succeed at material wealth with never an Ebeneezer Scrooge moment.

I am currently totally, permanently disabled, although I can usually drive myself and can get around some. I don't go much of anywhere, don't dance and I am a very self sufficient person, happy when I'm alone or with somebody. I have a basement but don't get down there much and love the woods, my critters, and the quiet country life, having little need to confront the lack of public facilities for people with disabilities.

[Philosoraptor]

10. You seem centered.

And at ease with it all. Not everyone is stoic about it. Permanent for me too, and lifelong, and I admit, it makes me cranky sometimes.

I went to get a physical once for SS and there were 16 steps up to the doc's office. Needless to say I had to see another doctor.

[EST]

11. Yeah, I know you are cranky, sometimes-

I've posted with you, before.:toast:

I did, perhaps unfortunately, assume you were an able bodied person with a bit of thoughtful curiosity, so please forgive me if I have been offensive or unnecessarily teacherish.

I'm usually pretty stolid about it all, except for when I have to do a prednisone flush-that much steroids makes me very emotionally unstable. I used to think " 'roid rage" was just a made up term for people who were just inconsiderate and whacked out, anyway, and was a result of long term steroid abuse, if anything. Now, I know that the second or third day of sixty milligrams of prednisone will have me freaked out with a soppy story on TV. Dealing with real people under those conditions can be iffy, so it's easier for me to avoid communication until I can assure myself of being reasonable.

I'm lucky to live where I do and whatever doctor business I have to contend with is mostly in small towns, around, with the worry about multiple steps not being much of an issue.

When I have to go to a big city-like St Louis-it's to a big hospital or some such and there are elevators and ramps to ease the way. Of course, having a wonderful wife helps a lot, too.

Seems like most of my life I got pushed around by pretty girls, so I don't really want that at this point.:)

[Ezlivin]

22. We flew to Acapulco, checked in and found out our room wasn't fully accessible!

We ended up suing the travel agency that booked the flights and the rooms. (We won.) This was back in the 80s. My wife and I wanted to have a nice vacation. We went to a travel agent (there were no travel agents who specialized in wheelchair accommodations at the time) and told them that we would like to vacation in Mexico. Money was no object. Was it possible?

"Yes". And we were told that the "sister" hotel to the Acapulco Princess, the Marquis (de Sade, I think) was accessible and there would be no problem.

It was f**king insane. Steps in the airport in Mexico City, no boarding wheelchair (I had to be wrestled and dragged to my seat on the aircraft). When we landed in Acapulco they rolled a staircase to the plane. Four burly men carried me down and one pushed me across the blistering hot tarmac. A five minute ride past desperate poverty to the hotel. Exhausted and ready for vacation. Then my wife asked about our room. "Oh no," the clerk said. "Only the grounds of the hotel is accessible."

Good thing my wife was not carrying a gun.

[Philosoraptor]

23. I went on local t.v. last year to complain about this type of crap.

And the 8 nightclubs that I can no longer get in haven't fixed a damn thing.

On a recent trip to Tiajuana I found almost everything accessible. But things are improving I guess.

[AuntPatsy]

5. My mother in law was wheel chair bound but refused to live with anyone

so we rented her a place that was wheel chair accessable to get to a local medical clinic if no one was around, though she didn't survive her last attack and passed away, she was in a hospital setting surrounded by her family and not alone which might have happened if she was unable to get to some outlet of help, she was able to get herself out her door and across the street in her wheel chair when I was unable to get to her quick enough, I don't believe she would have survived waiting by herself for an amublance.

I honestly believe more places should implement wheel chair accessibility to their establishments, you never know when you yourself might find yourself in need.

[Philosoraptor]

6. Most people know someone in a roller.

And this is usually the only way that the able bodied might get a hint as to what it's like.

[blm]

17. After 6 months of it post Earthquake, I had a whole new level of disgust for the

way this country and its cities and its retail developers ignore the basic needs of the wheelchair user, especially with their sidewalks and maintenance of those sidewalks.

I have maintained links to the disabled community and their political activities.

[SoCalDem]

7. I didn't but my son did after knee surgery. he did quite well with it

but of course he knew it was not forever, too.

I would drop him off at school and the "crew" of cheerleaders would be there waiting for him. he loved the attention of girls wheeling him around all day .

He only needed it a few weeks, but he did not like the fact that it was a hassle with stairs & doorways.

[Philosoraptor]

8. I've often thought of having girls wheel me around.

And other things.

[thecrow]

12. When my knee broke down in Canada

I had to get home fast but couldn't walk the miles in the airport terminals.
The airlines offered me door to door wheelchair service to get home. Yes, I went through security in a wheelchair! They wanded me! It was kind of fun for a while (not having to walk or carry luggage) but then I noticed the faces of the other people in the terminal....

You know how when (most people) you are passing someone in a public place, how you give them "everything's good, life is good" kind of look, maybe a smile? I was giving these looks to people and they would look at me and then ... divert their eyes. Like if they shut me and the wheelchair out, they wouldn't be touched by misfortune. I thought it was just one or two people, but after about an hour of this, I realized it was mostly true of anyone looking my way.

Then in between planes, I was corralled into a holding area where all the wheelchair people were kept. I had to keep sending my beloved off on forays for coffee, food, etc.
At one point I actually got up out of the chair and walked to the ticket counter to check the plane status.
Then I got stares from the wheelchair crowd, like what's up with that?

I realized through my experience that it is very lonely in a wheelchair because of other people's reactions.

I try to give every wheelchair person I see nowadays a smile and a how are you... and then I listen.
I think if I had to do it again I would choose one of those electric doohickies, though. It was hard to get around,.

[Philosoraptor]

13. It makes folks uncomfortable.

I know exactly what you're talking about, but it's just human instinct. It's the ultimate minority group.

[kskiska]

14. I had crutches once for a broken ankle

People, especially children, would stare at me. Most were helpful, opening doors, etc., but some were embarrassingly overhelpful, wanting to help in restrooms, which in my case was unnecessary. One woman in my office made a point of letting doors close in my face behind her as I approached. I never did figure that one out. A trip to the supermarket was exhausting. I hated to depend on people to drive me around. It was an experience I haven't forgotten.

[DarbyUSMC]

15. I'm in a motorized wheel chair when I go out to "run" errands and such.

(A rather long answer to a short request.)

People here in this town, (population approx. 10,000) have been extremely helpful and pleasant. The sidewalks are a big problem as they are uneven and sometimes dangerous so I have to ride in the road at times, but drivers give me a wide berth even though I ride as close to the curb as possible. I have to use a manual wheel chair whenever I go in a car as well as to the airport. The airline personnel have been super in their care and transportation of me to gates etc. Getting through screening is done as gently as possible although nine times out of ten my number comes up to be thoroughly checked possibly because I have a one way ticket and a goofy last name. They unpack my suitcases at the ticket counter but repack them better than I had them packed. They're apologetic but I've never gotten looks of pity or been looked at as if not there. At home in my tiny apartment I have everything I need and whirl around in my office chair or use a walker if I'm able. The motorized chair has let me be as independent as possible. I never drove so didn't know what true freedom was like, although I've imagined what a miracle it must be to get into a car and go on a road trip. Even if I could drive, it could never be a spontaneous road trip due to being obligated to go to the bloodletting three times a week. (Dialysis).

Here's the thing...... Although because of where I live I don't get out much in the winter due to ice/snow, I find people to be 98 percent great. A lift van takes me to and from treatments. I've used the wheelchair since having two broken hips, a broken pelvis and osteo that has taken me from five foot six to five foot. After over fourteen spontaneously broken ribs, it is almost impossible to walk more than a few feet without more pain than usual. Also, I have no balance and when I stand I tip over. I apparently am not a Weeble.

One thing I've learned during the twenty years of bloodletting is that for the most part, what you put out there, you get back. That's no "Secret". Smiles are met with smiles and humor is a saving grace and one that most people respond to because it puts them at ease around people who are not on the same "level" ;) as themselves.

Ah, some of you may be too young to know what a Weeble is......"Weebles wobble but they don't fall down."

[Philosoraptor]

16. Same here.

Most places are good at being accessible, my motorized chair goes almost anywhere, but it's a pain loading it in and out, I too use a folding one for assisting with that.

There are about a dozen buildings here in K.C. that I used to work in that are not accessible because they don't have to be and are too cheap to make improvements. They are older buildings with 'grandfather' clauses and 'historically significant', which is utter bullshit.

[Tyler Durden]

18. It sucked the rat's ass. Get it fitted, no matter how long you're going to use it.

I assumed since I was using a lightweight fairly expensive one the family had and I was only going to use it for two stretches of two months each, I didn't need to pay to have it fitted.

WRONG.

I now have permanent nerve damage in the lower back, and numb spots on the leg that wasn't even injured.

[Tyler Durden]

19. Sorry if that seemed insensitive!

I forget sometimes that some of us get to wheel it permanently!

DO make sure you get regular fittings (I was told after the fact).

[illinoisprogressive]

20. my son just broke his hip and has to use a walker.

he was rushing in the basement to grab a shirt from the dryer and as he took the corner, down he went on his hip. luckily he is in his early 20s so he will heal fast.
But, the walker is a pain. hard to get around with, bulky and clumsy.

[Philosoraptor]

21. He'll have trouble in his later years too.

Old football injuries as they are sometimes called can come back to haunt you.

Walkers are notoriously hard to get through most bathroom doors with.

[RFKHumphreyObama]

24. I've been in a wheelchair several times

I was born with a disability that impacted my feet and had to have several operations to correct it which meant that I was unable to walk for considerable periods of time –hence I was confined to a wheelchair. Usually it would be two-three weeks at the most in the post-surgery recuperation period. During the longest period of time, I was in a wheelchair for 4-6 months

At that time I was a teenager in school. We also lived in a two-storey house that had an upstairs living area and no real way of accessing it other than stairs. When I returned from the hospital, my poor father had to wheel me up a steep hill leading up to the house and this was not an easy task. It began impacting on his back, which was never good to begin with, so eventually I was forced to slide my way up the stairs to the upstairs with my parents steering the wheelchair up separately. Not easy days, although I loved my old house

School was a challenge. Since I was in a wheelchair for five-six months, I couldn’t attend classes that were situated in upstairs classrooms. I went to a Christian private school and the headmaster and the school leadership team were absolutely wonderful and bent over backwards to try and make sure that my education wasn’t affected and that I was comfortable. They organized my best friend (who was more than willing and in fact volunteered) to help me with my wheelchair and he assisted me in reaching classes that I could attend on the first floor. When I had classes upstairs or they did PE, I was placed in the school library and given work to catch up on. Generally the classes I missed, the teachers would make sure I was kept updated in some way.

Incidentally two years later the school had another student who was permanently in a wheelchair. My headmaster actually went as far as to build an elevator-style device to assist him in reaching classes upstairs and made many other changes to make the school more wheelchair-friendly. The school became much more amenable to wheelchair-bound students because of the experiences the school authorities had with both him and me

I had great support from family and a group of wonderful and supportive friends and teachers who got me through that time but it was challenging and it did isolate me at various times. I gained some appreciation and understanding of what people permanently in a wheelchair go through

Last year, I hurt my leg and was in a wheelchair again for two weeks. It was somewhat easier in terms of living because I resided in a wheelchair-friendly house

[Philosoraptor]

25. ...........

[Pastiche423]

26. After being a wheeler for more than twenty years, I can honestly say

it fucking sucks! The only good thing about it, is that no matter where you go, you always have a seat.

I've been in a manual all these years, but my shoulders are close to being shot and I will have to buy a powerchair in the near future. The problem w/that is the new (definitely not improved) Medicare rules state that powerchairs can only be used indoors!

WTF good is it if you can't go outside to run errands or any fucking thing?

It's been almost seventeen years since the ADA was signed and I wager only 25% of America is in compliance.

Btw, there is a ton of difference between using a w/c temporarily and using one for life.

Sorry Phil, I'm having a crabby day.

[Philosoraptor]

27. Medicare rules state that power chairs can only be used indoors?

Jeezus! How restrictive can you get?

I fucking hate dealing with those people, I've had great success with Voc. Rehab getting me my electric chair and computer software, even college.

Shoulders or any joints will wear down after many years of repetitive motion.

I've always liked the old 'try it for a day' bit, where they tie someone's legs up and send them out in a roller and see how it goes. I'd like to have a cameraman follow me to some of these inaccessible places and put it on youtube.

[Pastiche423]

29. That new Medicare rule applies

to those using Medicare to pay for the chair. A big brouhaha arose several years ago when scooters were advertised (remember the one about being able to the Grand Canyon in your new scooter?)

I was getting emails from Justice for All when this happened. They were begging people to send in their stories to stop this stupid rule. It passed anyway. Of course this passed under El Mono's reign.

:mad:

[DarbyUSMC]

31. The Power chair that I have was obtained

through Medicare and my secondary insurance. The instructions that came with the chair are ridiculous. Do not sit in this chair when being transported in a vehicle, for instance, and do not use outside. Well, duh, The representative "confirmed" that I did not intend to use the chair outside of my home. I do not believe that, as of yet, we have people from the government monitoring people in power chairs as they speed down the sidewalk drag racing with kids on skateboards. At least I hope not. Rascals are meant for outside use, so the info states, but hardly anyone could use it in their home. The ads on TV show people driving around in power chairs outside but someone, somewhere must have tipped over in one and therefore a new government rule was written.

[Behind the Aegis]

28. Not in a wheelchair.

I have done diversity presentations where I have students get into wheelchairs and try to get around for just an hour. Needless to say, most get very frustrated. Though not exactly what you are looking for, I was walking around the French Quarter last week with my doggie in his stroller. It was a colossal pain in the ass! The sidewalks are a mess, and many of the curbs don't have ramps into or out of the street. Most buildings didn't have any type of access (not unusual for buildings as old as many of them are). As I strolled about I thought how difficult it would be for someone in a wheelchair, or even someone needing assistance to walk (canes, crutches). I have seen a few people in wheelchairs in the Quarter, but most just use the street and don't bother with the sidewalks. Besides, as bumpy as they are, I would imagine they'd need a Dramamine just to prevent motion sickness!

[CrispyQ]

30. I was in a wheelchair for 4 months of the worst fucking year of my life.

I lived in the second story of an old historic home - a steep switchback staircase to get in & out of my place. :eyes: It was quite a challenge when I wanted to go out. If it hadn't been for the wonderful support of a couple of very good friends, I don't know how I would have managed. One friend was an absolute doll. She would devote an entire day to helping me get to my doctor & then she'd insist on taking me to the mall just so I wouldn't have to go home to the same old four walls. She was fit & able, but even so, we encountered many places that simply were not equipped to deal with wheelchairs.

That was an eye opening year for me. It really put the old saying, "If you've got your health you've got everything" in perspective. In my current life I'll sometimes go on a pity party but then I remember that one year in my life & I realize I have everything to be thankful for!

[Ecumenist]

32. Yep...On and Off for 4 years due to severe

rheumatoid arthritis. It was difficult, especially for a teenaged girl in a VERY small rural town in central California. It was hell getting into classrooms and restrooms and just ggetting around. I was lucky in that I was able to come out of that chair with hard work, therapy and remission.

It didn't help that I had a psychopathic father who seemed to think that it was his charge to go around and tell people that I wasn't really sick, (in spite of diagnostic testing, ongoing doctor's appointment and medical therapies), causing even more problems from teacher and fellow students who seemed to delight in torturing me by actually closing doors and going out of their way to attempt to turn over the chair. Yep, it was a dream com true.:sarcasm:

[Philosoraptor]

33. I feel so bad about all the returning vets that are just learning about this shit.

[Ayesha]

34. All my life

Thanks to a negligent obstetrician.

Yeah, it sucks a lot of the time, but the U.S. *is* getting more accessible and people's attitudes are changing. I grew up in the Midwest, but live in California now and the accessibility is far better here.

I had supportive, even pushy parents, who wouldn't let me use my disability as an excuse not to succeed in life. I've always had my moments of self-pity, and as an adult I've realized it's ok to be angry sometimes, to grieve for the "normal" body I'll never have. My body image is not very positive, especially since I gained weight in the past 2 years. But overall, I have accomplished a lot, and I don't let my disability hold me back.

I use a power wheelchair and find that it gives me much more independence than a manual ever did. It actually makes me less disabled in a practical sense because I can keep up with other people. I have an accessible van (and keep my old one as a spare) so transportation is not too big of an issue. I have also found that having a service dog increases my independence and improves people's attitude towards me. They see the dog instead of the wheelchair, and it's a great social icebreaker.

My partner is also disabled. She has fibromyalgia and uses a scooter for long distances. She was healthy until 2 1/2 years ago, and it has been a big adjustment for her emotionally. Her struggle is compounded by the fact that she appears "normal" most of the time, and people often don't understand that she is in pain and often has no energy to accomplish even basic tasks.

Hope this has been helpful to you. Please feel free to reply or PM if you need to talk.