A Little About My Experiences While Using A Wheel Chair

[Stace915]

(I wasn't sure if this belonged here or in the other forum section). I am actually writing from an airplane! I didn't know there was now internet access on some flights... so cool.

Anyways I am on my way home from a weekend in Orlando where I was visiting my sister. I do not do well in the heat and humidity so I waited until the coolest time of year to visit her. My sister is an intern for disney so she really wanted me to go to the theme parks with her... of course I was really hesitant due to the heat, humidity, tons of walking and rides. Our first stop was the Magic Kingdom... I could not even make it from the parking lot to the main gate so I swallowed my pride and agreed to use a wheelchair. Wheelchairs have been something that I always avoid because I feel like I need to push myself and push and push and that I should not be in a wheelchair no matter how I am feeling because I am letting my illness win and it makes me feel broken and helpless... and I didn't want to deal with ignorant people staring because I look fine and do not look sick. Well as our day went on, I realized that I had been making a big deal out of using the wheel chair for no reason, I was able to be out with my sister all day and even go on rides because of the wheel chair and without it I wouldn't have been able to do anything and I quickly got over my "fear" and hesitation of using one.

The first hour or so I encounter a group of teenagers staring and me and whispering and laughing, I also encountered many people looking at me and then looking at my feet and looking annoyed (I guess they were looking for a cast or injury or something)... Seeing all of this started to get me annoyed. I look like a normal twenty-something year old but there could be so many illness, injuries problems that someone has that requires the use of a wheel chair and I couldn't believe that people were so ignorant and laughing and little did they know that I literally could not stand up and walk without either passing out or having severe tachycardia...it made me wonder how these idiots act when they see someone with a mental disability.

As the day went on I was absolutely disgusted with people! I had MANY people walk directly in front of me while my sister was pushing me in the chair, a ton of people literally just stop walking directly in front of me when they clearly saw me there. I had one woman actually try to squeeze around me with a tray of food rather than walk around when there was plenty of room next to her and she pushed me and the chair looked and me and walked away (my sister had left me "parked" for a minute). You would not believe how many people had a complete disregard for the fact that I was in a wheelchair and gave zero respect to a handicapped person. I kept my mouth quiet about it because I figured there was no use in complaining but then my sister said something to me about it... oh how about the guy that was holding the door for his wife saw me, looked right at me and proceeded to let the door slam on me! I could go on and on... but I think I made my point! I am getting aggravated just thinking about it. My point is that is was truly amazing and disgusting the way that most of these people acted and made me embarrassed of the human race.

I hope that those of you that use wheelchairs, whether it is occasionally or everyday never have to be treated in such a discriminating, disrespectful and terrible way...and for those of you reading this who may have feelings like I did about using the wheelchair and it making you feel defeated, I can say it really was not a big deal. It made it so that I was able to spend 4 days in Florida. Yes I still felt terrible but it was the only way I could have made the trip and was absolutely worth it!

[juliegee]

I'm so glad you were able to spend time with your sister. (My niece is an intern at Disney now too!) Good for you for using the chair! It makes me very sad to see how you were treated. When I see someone in a wheelchair, I always make a point of smiling or saying hello- just acknowledging them. I see too many people totally ignoring handicapped folks. I think, as a whole, we are probably a more compassionate bunch due to living with invisible illnesses. However, this was a wake up call for me to make sure I am extra courteous.

[Guest tearose]

If you need the chair you should not think twice about it. Let go of those comments/looks/poor skills of small minded people. Try to see past them. You are to live your life the best you can and you should not let them get to you.

We have the uneasy blessing of "not looking disabled" so we get more looks and questions. As if having no leg or a broken leg would make people care more? Judge less? People can be hurtful and just plain mean.

I am glad you got to have some special time with your sister.

[bkweavers]

My daughter also gets lots of stares when she is in her reclining wheelchair. It seems the older the person, the longer they stare! My daughter doesn't get bothered by little kids staring or when people come right out and ask her questions. I figure it is one more person who knows about POTS.

I'm so sorry that you seemed to get the worst of the human race. We've had some rude people but we've also had people who went out of there way for my daughter. We went out to eat this summer at a restaurant for the first time in over 2 years. Liz wasn't in a wheelchair but I went ahead and explained to the hostess that we would need a booth for her to lay down in and could it be close to the door so she didn't have to walk too far. Right away, they found the perfect place for us and many of the waiters and waitresses made a point of talking to her during our time there. When we were done eating, the manager made a point of asking us if we would like to use the emergency exit because it was right by our booth. She couldn't have been more accommodating and nice. It brought tears to my eyes.

I guess the bottom line is your going to get rude people sometimes but know that there are people out there who do care. I'm very glad you got to spend time with your sister and I hope you get to have more good times with her and other experiences with a wheelchair.

Brenda

[Maxine]

How awful. I know the wheel chair was actually a good thing making your trip to Disney World possible, but it makes me feel sad too that you were treated like that. I usually chalk up those kind of people as not very intelligent, and their thought process doesn't go very deep.

I totally understand why you want to push as far as you can------I do he same thing. We went to the lights before Christmas at the Zoo the day before Thanksgiving, and I was giving out before we made it over the entrance bridge. My son and his wife walked ahead of us with our granddaughters, and I couldn't see the looks on their face when they saw the pretty lights. I really felt like I was in heart failure, then my face went numb. Both my POTS and spine issues were in full swing. My adrenaline started to go crazy, but in a way this helped me stay up and walking. However, it wasn't fun---I was miserable. I was happy I made it through, but I paid for it dearly. The Zoo is much, much smaller then Disney World-------------it's a good thing you got the wheel chair. I wouldn't have made it. It's going to be hard that first time I have to use one.

People already give me dirty looks for parking in handicap spots because I get out of the car with my motor running just fine, then about 20 minutes after it starts to shut down. It's like a switch just goes off. Sometimes I get the pleasant surprise of my motor running a little longer. I'm glad I have the handicap pass, and use it when I need it----especially hot days, or real cold days. My body can't adjust to temperature extremes. It makes a difference between me getting out or not.....the automatic car starter helps too...

Some people are just ignorant.

Maxine :0)

[ladyt]

hi...

I am happy u swallowed your pride and used a wheelchair. I am sad about how u was treated. I got my first one yrs ago (about 9 i gess). i was then bedridden. And the first chance i had i didnt use it. But it limited my life gratly. And when i got worse again i started to use it somthimes. My first one was very heavy and nor easy for me to handel. And it looked like the one in hospitals. About 2 yrs ago i got a new one. Actually i now have 3 difrent, one indoors, one el, and one manuell.

The new manuell is easy to handel, and in malls i am abel to wheel my self around a lot. And that is ust so great. And the wheelchair looks better than my old one. i got more steared at in my old. I had to be pushed around in that one. Now i gess many people think i have been in an acsident.

People have weird idees about what sort of people use wheelchairs. My wheelchairs are aids, that make it posible to do something and have some life outside my reclainer/bed.

And i have grown to sort of love them.

But others people reactions is somthimes very rud and anoing. And i dont think about children staring, that i think is funny, spesaly when the parents gett embarrest...=)

But getting in to a store and they turn to the one whit me and ignoring me. When I am feeling rater ok i ust make a point of catching peoples eyes so they have to talk to me, and talk desievly.

In some stores i gett a lot of help others non at all. Mostly I have some one whit me, so i gett the help from them. But if i am on my own (mostly when tha person whit me is in a nother store etc), i mostly gett totaly ignored.

I have notic this, and found it weird. because thats when i need help getting stuff from shelfs etc. I gess i somthimes is harder to see since i am lower, but..

And there are people that are very helpfull and understanding. But u do gett treated difrent, both negatvie and positive way.. And the staring i deal whit by staring back (when feeling to potsy i gess i ust sitt there..)

The ting i dont totalrat is people asking in a rud tone why are U in a wheelchair.. ust happy most people are not that rud..

they ust ignore me insteed.. But i have actually been puched away by strangers, that is rud rud..

[MommytoSJEA]

Some people are just plain rude! Im glad you got to have a great time with your sister. Thats all that matters. I have had that experience with the wheelchair before but it wasnt due to POTS. I was pg with my 3rd child and I was on complete bedrest. Well I got this bug in me to knit a baby blanket ( I didn't even know how to knit!!) and I made my mother take me to Wal-mart to get yarn. I used one of the motorized chairs, and only being 6 mo pg did not have a big baby belly, and people were just statring and shaking thier heads. Ignorant people.

~Kelli

[Stace915]

Maxine- I have a handicap parking tag also and I use it the same way that you do, on days I really can't walk and when I am up to walking I don't use it. I have gotten used to elderly people giving me dirty looks when they see me get out of the car and walk and probably assume that I am using someone else's parking tag (I also have a remote start and it is so so so wonderful!) and I actually went to the zoo in September and I ended up missing 3 days of work the following week because I pushed myself too much and had to recover.. now I wish I would have used a wheel chair at the zoo as well! I guess regardless of where you are, you will run into ignorant and obnoxious people!

Honestly the thing that my experiences at Disney made me think about the most was not that I was treated poorly but that so many DINET members are in wheelchairs full-time (and so many people in the world in general) and it is terrible that people have to deal with being treated this way everyday of their lives! It really made me angry for them... Since I can't change the rest of the world, I know I will be even more courteous, helpful etc when I see someone who is disabled.

[scarfgirl]

Sorry your wheelchair experience wasn't so pleasant.

I found using a wheelchair very freeing as far as crowds are concerned. When I'm walking on my own, or with a cane, I tend to get ignored and knocked about quite a bit. But with a wheelchair, people have to get out of MY way. If they don't, they unapologetically get their ankles clipped.

I do get stared at sometimes, but it doesn't really bother me and I have no trouble staring right back.

[flop]

For quite a while I used a wheelchair whenever I was out of the house. I was lucky to get funding for a modern light-weight sports type chair in order for me to carry on working. I think because the chair looked funky and I looked at home in it (not lost in a big heavy chair) it helped me to feel confident about myself.

People at work found it very odd for me to use the chair but out and about most people treated me well. I was surprised how many people went out of their way to open doors etc - including a group of dodgy looking youths hanging about in a car park.

I found my chair is most helpful in places like supermarkets and malls where there are flat smooth floors. Self-propelling on wonky pavements is really hard work!

Flop

[tilly]

It is a sad state of affairs when some people do not understand about disability .. .. i had a rough time when i was first introduced to a mobility scooter, i felt so concious that people where looking at me and judging me ... i had not been anywhere for two years, i was house bound and did not know how i was going to get about anymore, because of the severe tachycardia, it was life changing,

i can only manage to visit one shop if i am lucky and now i too have to use a wheelchair in the shop, i did have empathy with people in wheelchairs before all of this happened to me ...... but never ever thought that i would one day find myself using one, or that i would be so compromised by the server tachycatrdia, and indescribable fatigue and tiredness and how it affects you, making it virtually impossible to sustain any activity ... but i have swollowed my pride and know i have to use them and i am glad that some stores supply them ... my world has shrunk massivly since having pots and ist ....

[persephone]

I feel your rage, sister!

I got so worked up by my own wheelchair experiences, I decided to not get mad, but get even.

If people stare at me now, I say loudly "Would you like an autograph? A picture?" and smile with MASSIVE SCARY BULGING EYES.

My scooter in 2005 was the best- I would just shout "I'm coming through, you have to move!" at people who had looked at me, and not moved. Especially the ones who stopped right in front of me.

Turn it into a game- a laugh! And see how you can turn it around.

I know it's hard, though. *hugs*

[poppetkazutaka]

I never know how to act around wheelchair people! XD

Am I acting too nice? Not nice enough? Am I looking too much, not enough?! AHHH!

I'm always so nervous around disabled people, even though technically I am one!

So I figdet and look down at the ground like I'm ashamed and get real shy and try to ignore them and stay out of the way unless they try to talk to me. I get scared because I'm afraid I'm going to offend them! Especially if I can't see anything wrong with them.

I dread the day I have to get a chair, but also fear for the people around me because I'm heck on wheels! [mows people down] I was in a chair once, and I had way too much fun getting around, not caring a spot what people thought. XD

[janiedelite]

Honestly the thing that my experiences at Disney made me think about the most was not that I was treated poorly but that so many DINET members are in wheelchairs full-time (and so many people in the world in general) and it is terrible that people have to deal with being treated this way everyday of their lives! It really made me angry for them... Since I can't change the rest of the world, I know I will be even more courteous, helpful etc when I see someone who is disabled.

Yes, I'm so thankful I don't need a wheelchair full-time like many other folks here. One the days when I feel the need to use the automated carts at the store, or my disabled parking tag, it reminds me of how much function I have in comparison to many others. It certainly does make me more aware of those less able.

[Stace915]

Persephone-

Thats awesome, I would have loved to see peoples reaction!

It seems a lot of people just do not have any common sense (shakes her head in disbelief)... I should add that although my experience with other people visiting the theme parks was not very pleasant the staff at Disney was really accommodating. The second day there my sister told me that I could get a special access pass (I don't remember exactly what they called it), but we went to guest services office and I expected that I would have to give a long song and dance and explain the illness and even have them speak to one of my doctors... however as soon as I started to explain the illness the guy helping us stopped me and said I don't need to know what your illness is or any details, my job is to help you..so you tell me what can I do to make your experience here easier. I was shocked and I said oh well, I can't be in the heat for long periods of time or standing for more than a few minutes once I get out of the wheelchair so if there is anyway that I can move to a different line for each ride or move somewhere that I am at least out of the direct heat that would be great. He handed me a pass that allowed us to by-pass all of the lines, they wheeled me as close to the ride as they could and helped me from the chair onto each ride and had the chair waiting for me when we exited. At least there are some courteous people left in the world

Time to try and get some sleep... good night all!!

[ladyt]

hi..

poppet jupp alot of people gett nervous around visible disabeled people, i did somthimes before and somthimes now also..

So when people flicker etc that doesent bother me, i know its unsertendy. peolpe givning me the sort of evil stare i try to ignore or stare back as strong as i can.

Yesterday (finaly, after been homebound most of des) i whent whit famlily to do gift ecahnging. In my chair ofcourse, my lovlye easy wheeling wounder.

I whent to this dvd store to do some echanging. But the only place i could get to was the caounter. I entered the shopp alone. There was few people there. the two people working there ust looked, didtn ask to help or any thing. Then my friend come and we tryed again to gett to the dvds, no luck. So i asked to gett a giftcard for the amunt. And i told them i couldnt gett around even a litle in there store. they dud ust said yeah, thats ust the way it is. and now hi had a kid in a stroler hi know how anoing that was... yeah rigth..

They could have moved one of the selfs a litle and one could have entered a bitt of the store at least.. But they have a store in a nother mall, and i think i will be abel to gett to some of the dvds there.

And I also got the we dont se you and snik in line yesterday.. they do so se me, since they hit thery feet on my chair.

But this sweet lady was so apolegetic, she was oo u go a head of me etc etc.. she was before me, but some sniky snikers outlined both of us... ..

sorry my spelling is all over the wrong to day, and the words are ust not in my brain.. thats to say, they are lost somewhere there in the for i gess...

[tilly]

Stacie and Persephone ... this is a really good thread to keep going because it is highlighting how we have difficulty in sustaning our activity ....

To give an example of my shopping trip to the sales yesterday ... Well! when I say shopping trip it was to one shop only, it was our local clothing outlet .. I always think I can manage but the reality is always different ? I was with my husband and he waited in the car for me ... I picked up a trolley at the door and walked what could only have been 20 yards or so ... the tachy was already present ... in my excitement of spending money in the sale I was looking left then right, Iv?e not actually put anything in the trolley yet but already needing to sit down so I am now not thinking of my shopping.. I am thinking how I am going to cope with the worsening situation ?.. the tachy is taking over yet again, I am also getting hotter and need to take my jacket off i am sweating ....

I am now looking for somewhere to sit ... no seats to be seen anywhere only in the fitting room but this is approximately 100 yards away and I am having difficulty now wondering if I should make a sharp exit or struggle on ... I know I can not struggle on and ignore the tachy as it will lead to me passing out or going home in a ambulance ... I am now stuck with a dilemma .. also not wanting to bring attention to myself .... ( I am sure you have all experience of this ) ....

now to get out of this dilemma I am in inside of the store ... I had to ring my husband on the mobile, who came to my rescue with a wheelchair ?... I abandoned my shopping treat in a ball of frustration .. headed home ward with no goodies and spent the rest of the day having to rest .... Feeling let down again by my health ?.

Now if people want to give us funny looks and make comments ? then they are very welcome to come and spend the day in my body ?.. this would make them think twice ?..

two years ago I would have been around the town, the city, in and out of every shop " shop till you drop" ... and still be up for a night out ....... but my world has shrunk down to one task per day and one shop if I am lucky .?.. Now if that?s not life changing I do not know what is !!!..

[Tammy]

My brother was born with celebral palsy and has always been in a wheelchair. I always was the one who took him shopping, on outings, etc. before getting POTS and I know exactly how people react to those in wheelchairs, even when it shows there is something wrong, as CP is not in invisible illness. This is why I am homebound and unable to do anything now, because I would need a wheelchair to do more than very small tasks. I know exactly how people treat those in wheelchairs and would rather live secluded from the world, than to have to be treated as badly as my brother always has been. However, someday I would like a scooter because than if someone looks at me wrong, I can just place it in high gear and run them over!!!

[tilly]

My brother was born with celebral palsy and has always been in a wheelchair. I always was the one who took him shopping, on outings, etc. before getting POTS and I know exactly how people react to those in wheelchairs, even when it shows there is something wrong, as CP is not in invisible illness. This is why I am homebound and unable to do anything now, because I would need a wheelchair to do more than very small tasks. I know exactly how people treat those in wheelchairs and would rather live secluded from the world, than to have to be treated as badly as my brother always has been. However, someday I would like a scooter because than if someone looks at me wrong, I can just place it in high gear and run them over!!!

Hi Tammy ... I was house bound for the first two years of getting POTS . I was in and out of the hospital ... terrible tachycardia it was relentless .. I could not walk anywhere not even stand or get up for the tachy ? I still have it but have had to learn to live with it ?..

it was a massive shock to my system one minute normal and rushing around everywhere and then

Bam! ... Something?s gone wrong with me I do not work properly anymore .... the frustrations where immense .... but nearly three years have passed and I still feel it is surreal what has happened to me ...

I was introduced to the mobility scooter first, through a neighbour, it was so hard to accept that this is going to be the way to extend my boundaries, I was so self conscious ... my husband was quite enthusiastic about it and he said he would have a go it looks fun !! ... but I wanted to say to you Tammy, please don't give up on ever using one or a wheelchair because you have to live your life as best you can under the circumstances .... very hard I know, but once I got out it was a breath of fresh air .. I am learning to ignore anyone who looks at me now ... maybe they wonder what is wrong ! or they are sympathetic !... I do not know .. ? I have never had any one be rude to me .. I think in my case it is my own self consciousness I have to get over ..?.

We are looking into the possibility now of getting a wheelchair, as I do not want to keep struggling every time I want to go to the shops ...

[Stace915]

I just had a thought, what if we carry a nerf gun or some kind of toy gun that shots something soft (so we don't hurt anyone) and whenever someone gives us a dirty look or is rude we can just shot them lol. It would catch them off guard and make us feel better haha!

[persephone]

Brilliant idea. I love it! Where do I get one?! I still highly recommend the comments and smiling with scary bulging eyes option- works a treat for me.

In my experience, if you know you're not feeling 100%, best to take a wheelchair and feel you've got too much energy than risk going without it and then get stuck.

Tilly your cardiologist can prescribe you one on the NHS. That's what happened to me. Or you can self refer to local NHS wheelchair centre for an assessment

[ladyt]

hi..

tammy i did feel like u for a long time.. But i love my wheelchair.. Whit out it i would be totaly homebound, and chair bound.. my litle indoors and out doors wheeling wonders makes life more easy. Still i am mostly in my recaliner, but not all the time like before.

So yeah people can be rud and lack understanding, but life befor and after my wheeling aids are to diffrent things. i prefer the rud looks..

[tilly]

Here - Here everyone ?...

let's hear it for people who need to use wheelchairs ... One thought that I had in dealing with people who are rude enough to blatantly blurt out ?

" what?s wrong with you " ? is this .?

We could wear our DYSAUNTONOMIA sweat shirts and carry a big pointer and just point to the shirt and reply, .... ?well if you have a few hours to spare let me fill you in? !!!!!.. ha ha ...

my husband thought this was funny ... they would run a mile .... can you imagine them yawning ! .. and trying to get away from you ... Then say, " oh don?t go there?s more? well you did ask ! !!!! ?

[futurehope]

Stace915,

I had the opposite effect than you when I was in Sea World and Cypress Gardens. I did not use a wheel chair. I rented a motorized scooter for the day (usually rented when entering the park). Everybody gave me special privileges, like sitting in the front row, getting out of my way, just being nice. I could thoroughly enjoy my day. I used the basket in front to hold my water. I carried an umbrella to keep the sun off of me. Next time, I will have a squirt bottle with water to cool me off when needed.

I would recommend what I did to other POTsies. It was well worth it to me.

[flop]

Getting a wheelchair was first suggested to me by a friend who has spina bifida. He could see how much I was struggling with being upright. I felt like a fraud because my legs work fine (well minus a few EDS problems) and I can walk fairly quickly - the problem is if I have to slow down/stop eg to look at something in a shop or to cross the road.

I think that self-confidence has a big part in how others react to you being in a wheelchair. If you are able to look people in the eye and give them a big smile they mostly relax and treat you like a normal person.

I found that when people stop in front of me or are blocking my path I call out loudly "learner driver coming through, watch your ankles", it usually has the desired effect and makes people smile.

I have a friend with a totally different medical condition who had been loaned a wheelchair as she was in too much pain to walk. We had arranged to meet at a big shopping mall (Trafford Centre) but she did not want to use her chair as she was self-conscious about it. I said that I would use my chair too (I don't really use it much at all these days). I persuaded her that if we were 2 wheelchair users together that it wouldn't be too bad. Afterwards she was so grateful that I had got her to use the chair, she realised that she would never have managed on her crutches.

I see my wheelchair as a means to an end - when I was still working all of my energy was spent at work. Getting the wheelchair allowed me to keep working for 18 months longer than I would have been able to. It also allowed me to still have a life - I had enough energy left over to meet friends for coffee or go to a quiz night (previously I had been asleep within 30 mins of leaving work and was sleeping up to 14 hours a day).

Wheelchairs are not for everyone (and many of us don't need them regularly) but for getting through bad patches or enabling you to get out of the house they can be an invaluable tool. Don't be put off by some people's bad experiences.

Flop