15 replies to this topic

[KarenFerguson]

Hi, I'm new to this forum. I probably should have joined sooner considering I've been disabled all my life.

(You can skip this next part if you want)

I was born 3.5 month prematurely and had bleeding in my spine. The result was a L3-L4 injury to my spine. The good news is that I had sacral sparing and have bowl and bladder and complete feeling - yay for me! However, I've basically been in a wheelchair all my life. I had one of the first Quickie chairs. When the company was still in a quanset hut in Fresno they made me a custom chair when I was 3. It was so cute and tiny, I wish I still had it. Now I'm 26, married, have a BA in interior design & basically have a really great life. So that's my little disabled "story".

(Continue here)

The great thing is, I have a person in my life who completely understands what's it's like to be a disabled person - my wonderful husband. He's a C5 quadriplegic and was injured at a construction site when he was 19. He's the sweetest man and I'm proud of him every day (but not in a special olympics way).

Both of us use manual chairs so "walking" around our neighborhood can be fun to say the least. I don't know how many times fellow walkers or people puttering around in their gardens have asked us or just yelled at us: "Hey! Are you two racing?" "Who's winning?" "Wow, she's beating you!". This just makes my head want to explode! Would you say this to a "regular" married couple taking a walk? I don't think so. I suppose it's just odd to see TWO disabled people out on a "walk", people's heads must not comprehend this information and blurt out the first things on their mind. So, no we're not racing. And thanks for pointing out the fact that we're disabled, I had forgotten for a moment.

We also drive an accessible Honda Element so we get a lot of stares everywhere. Either parking our car, getting out of the car and subsequently leaving the car. Just yesterday I was sitting next to the car ramp when a man ran over to me and asked it I needed help. He almost started pushing me up the ramp. I basically screamed at him to "BACK OFF, I DON'T NEED HELP!" Do I look like I need help? He did leave and I proceeded to easily push myself up the car ramp where hubby was in the car ready to drive us. Yeah, like I parked here with no way to get back in the car.

So, that's my little vent. Feel free to vent as well. I think I'll also check out the parenting section of this site. Hubby & I are trying to have a baby as well so you can imagine my nerves are pretty shot.

[gsp23]

I have only been disabled a year and am with an AB so I dont deal with the "are you racing" comments on a day to day basis but it seems like when I pass someone in the mall, on the street, etc that is in a wheelchair someone is just waiting to make that comment so I have heard it just not to the extent you have.

I have had a couple of times where someone just started pushing me up a hill/ramp because they thought I needed the help, even without asking me they just said that they were going to help me and started doing it. I read a great story online a while back that went something like this:

"A person in a wheelchair was going up a hill and someone came up behind them and said that they would help (said, didnt ask) and just started pushing them. Not wanting to be rude, the person in the wheelchair didnt say anything at all. When they got to the top of the hill, the person in the wheelchair looked at the guy who had just pushed them up to the top and said... while I appreciate you desire to help me out, how wuold you feel if you were walking up the hill and a passerby saw you walking and thought you looked tired so they just came right up to you and picked you up and carried you up the hill? It would be a violation of personal space and a bit demeaning too to just assume you couldnt walk up the hill right? Thats the way that I and most other people in wheelchairs feel when well intending people assume that we need help and just do so without asking if we need or would like the help."

On the note of annoying things in public though I had the most annoying thing happen to me last week...

I was at a store where they sell hunting supplies and wheeling around when a guy who works there said hi to me and was asking how I was doing, real friendly not proding about how I got to be in a wheelchair just normal people greetings. Anyways, after a minute he looked at me and said "Oh I have something that you really need!" (at this point my boyfriend walked up to witness this). I said oh really, expecting him to have something that would genuinly help a wheelin hunter. Next thing I know, he reaches on this shelf in front of me and pulls out this little kids plastic firemans hat and puts it on my head! I sat there a minute in shock not knowing how to even respond. I looked back at the guy and my boyfriend was standing in silence not knowing how to react or how I was going to react and I looked back at the guy working there and said "I need this?" and he says yeah. I asked why I would need it and he just laughed. I took it off my head and just said, I really dont think I need a childs hat and I put it back and rolled away. I dont know if it was the mentality that I was in a chair so he could talk down to me or if he thought my brain was in my arse or something but it was the must humiliating thing I think has been done to me thus far. And to leave me in silence and shock like he did you know that has to be true cause normally I would have told someone like him off for doing that.

[KarenFerguson]

gsp23, on Sep 7 2007, 09:39 AM, said:

I have only been disabled a year and am with an AB so I dont deal with the "are you racing" comments on a day to day basis but it seems like when I pass someone in the mall, on the street, etc that is in a wheelchair someone is just waiting to make that comment so I have heard it just not to the extent you have.

I have had a couple of times where someone just started pushing me up a hill/ramp because they thought I needed the help, even without asking me they just said that they were going to help me and started doing it. I read a great story online a while back that went something like this:

"A person in a wheelchair was going up a hill and someone came up behind them and said that they would help (said, didnt ask) and just started pushing them. Not wanting to be rude, the person in the wheelchair didnt say anything at all. When they got to the top of the hill, the person in the wheelchair looked at the guy who had just pushed them up to the top and said... while I appreciate you desire to help me out, how wuold you feel if you were walking up the hill and a passerby saw you walking and thought you looked tired so they just came right up to you and picked you up and carried you up the hill? It would be a violation of personal space and a bit demeaning too to just assume you couldnt walk up the hill right? Thats the way that I and most other people in wheelchairs feel when well intending people assume that we need help and just do so without asking if we need or would like the help."

On the note of annoying things in public though I had the most annoying thing happen to me last week...

I was at a store where they sell hunting supplies and wheeling around when a guy who works there said hi to me and was asking how I was doing, real friendly not proding about how I got to be in a wheelchair just normal people greetings. Anyways, after a minute he looked at me and said "Oh I have something that you really need!" (at this point my boyfriend walked up to witness this). I said oh really, expecting him to have something that would genuinly help a wheelin hunter. Next thing I know, he reaches on this shelf in front of me and pulls out this little kids plastic firemans hat and puts it on my head! I sat there a minute in shock not knowing how to even respond. I looked back at the guy and my boyfriend was standing in silence not knowing how to react or how I was going to react and I looked back at the guy working there and said "I need this?" and he says yeah. I asked why I would need it and he just laughed. I took it off my head and just said, I really dont think I need a childs hat and I put it back and rolled away. I dont know if it was the mentality that I was in a chair so he could talk down to me or if he thought my brain was in my arse or something but it was the must humiliating thing I think has been done to me thus far. And to leave me in silence and shock like he did you know that has to be true cause normally I would have told someone like him off for doing that.

I think it's the whole "wheelchair = child" phenomenon that many people seem to believe. I can't tell you how many times I've had my back patted or been smiled at in such a way as you would a toddler. I think what you did in that situation was brilliant. You were calm and just wheeled away. Hopefully your actions had an impact on "stupid clerk guy". What an ass.

[Somebody]

I Karen, I'm Karyn too (sometimes called Kay)
Welcome to the board!

I love your optimism and your attitude!
You may have a disability but you're not disabled.

Good luck with the baby!

Post often~

[KarenFerguson]

Somebody, on Sep 7 2007, 10:03 AM, said:

I Karen, I'm Karyn too (sometimes called Kay)
Welcome to the board!

I love your optimism and your attitude!
You may have a disability but you're not disabled.

Good luck with the baby!

Post often~

Ah, you're one of those 'y' Karen's. I've come across some interesting spellings of our name. I had a classmate that spelled her name Karin. And I actually was asked if I started my name with a 'C' once. Hee hee.

Anyway, thanks for the reply and for thinking I'm optimistic. Most of my life I've been referred to as an pessimist. Maybe the glass is really "half full?" Hee hee. And, I'm planning on posting when ever I can.

Cheers!

[wheeliebear75]

I've gotten some of that kinda stuff. My Mother works for a company that does IHSS and a bunch of other things too; they've got her doing OT work (she's certified) and also daily living, all the IHSS kind of stuff. Well Mom sometimes has to go for 3 or 4 day stretches at someone's home. If I want to see my Mom while she's "on the clock" we go out to lunch and she brings her client along. Well you can't have TWO chairs with out there being a "day program" involved. Yeah do I look like I need one? Well I don't think I do....but obviously not everyone shares that opinion.LOL And I have no idea what people think the link between leg function and brain function is..........but I can tell you I've seen some pretty stupid people in my day.......and they were NOT sitting in a w/c.

[Nichole]

I have people ask me if I need help all the time! You know I really have to say though that I think it's really nice. I know it can be super annoying when you're totally capable of doing something yourself, but it really makes me smile to know that their are still people in this world willing to help a complete stranger. I usually have at least a few people every week ask me if i need help getting into my car lol. I don't have a ramp or anything though, I just have a little two door car, so i get in, take the chair apart and sit it in the seat next to me. This really surprises people, and I've had complete strangers tell me they are amazed I can do it. I've also had people in parking lots ask me if the can watch me because they have a friend/family member in a chair and they want to know how I do that all by myself.
Anyway that's just my opinion....just trying to look on the sunny side of things.

[smokymtn memories]

The stigma has got to the worst in a chair, but believe me, there are those that are ignorant enough to want to help me "walk" with my cane. And, I'd like to have a dollar for everytime the fools have tried to take my hand holding the cane to help! Sweet Jesus! That's just setting me up for a fall!

Then you have the ones who want to take my cart for me, "Hello", I'm holding onto the darn thing like a walker!

Ever had the ones that talk to you like you're deaf? Lord save me from well meaning people who have'nt got a clue!

[KarenFerguson]

Nichole, on Sep 8 2007, 05:43 AM, said:

I have people ask me if I need help all the time! You know I really have to say though that I think it's really nice. I know it can be super annoying when you're totally capable of doing something yourself, but it really makes me smile to know that their are still people in this world willing to help a complete stranger. I usually have at least a few people every week ask me if i need help getting into my car lol. I don't have a ramp or anything though, I just have a little two door car, so i get in, take the chair apart and sit it in the seat next to me. This really surprises people, and I've had complete strangers tell me they are amazed I can do it. I've also had people in parking lots ask me if the can watch me because they have a friend/family member in a chair and they want to know how I do that all by myself.
Anyway that's just my opinion....just trying to look on the sunny side of things.

Yeah, I have the same thing happen all the time. I drive a Prius with hand controls when I'm out and about by myself (with out the hubby & the accessible Element) and I've had people just stare or ask if I need help with putting my chair in the car. I know they mean well & I'm glad there are still kind people in the world. However, I just can't help but wonder why they would think I'd drive somewhere by myself and not be able to get back in my own car? Puzzling.

Oh and does any one's blood boil over the dreaded scenario that goes something like this:
"Do you need help?"
"No, I'm fine thanks!"
"Are you sure?"
What!?! Of course I'm sure. UG!

[smokymtn memories]

It's the truth Karen, I get the same thing, am I sure, hell no, I'm not sure, I would'nt have left the house, for heaven's sake, if I could'nt do it by myself.

I guess they beat the heck out of the rude ones, though. I love the ones that block aisles and etc and expect me to walk around while they stand there talking or gawking.

[edlee]

I, too, appreciate the gesture when someone asks if I need help. I think it makes them feel better to have offered.

In fact, I often feel bad when I am forced to tell them that their toes/legs/butts are in the way when they try to open doors for me. They're doing the best they can.

I like the idea of making people happy,,,, if I can. So, if it allows them to feel good about themselves for a few minutes by letting them "help" me,,, why not? I have nothing to prove to anyone but me.
ed

[rkzenrage]

Being given a lolly-pop, being talked to like I'm three, etc drives me nuts.

[Georgia7]

I thot i was over sensitive over nothing bt its consoling that almost evryone gets offended when help is offered unnecessarily.Sometimes i wld be taking a stroll(my fav evening routine) when suddenly from nowhere someone springs into action and cruises the chair like he's possessed,ladies rarely dares to push chairs so i ve noticed.Now that is maddening!!!It does not only disturb my peace bt the flow of my thots.The other times are when getting in a car,there's this urgency in wanting to lift me,gosh,do i hate that?At times i feel people create dependency tendencies in us which they cannot keep up with and end up complaining abt hw dependent we are on them.They create scenarios in their heads of hw it's going to be on a daily basis even before they get to see for themselves our strengths n' weaknesses.No wonder people go screaming abt hw they will manage when disaster strikes without even knowing the limitations of whats happend.When i reported on my first day at work our human resource director first asked me hw i was going to cope instead of giving me a chance to explore my limitations n' possible solutions.Kinda irritating and really funny sometimes.

[Mike (c4-5) & Lorena]

I think the big issue is that most people do not, and will, not understand all the different types of disabilities out there. I have been wrong in both ways myself. I saw a guy in an e-wc who looked like he was struggling so I asked if he needed help. "No! Mind your own damn business." Another time I saw a lady in a wc having wc issues but I just ignored her. She belted out "Can't you see I am having trouble." And I thought it was hard to read my wife's mind.

Some disabled people want it both ways an expect everyone to completely read and understand the issue. I do feel, see and hear how disabled people have super high expectations of those around us who are not.

People see me cruise around are amazed at all what I do. I drive, I work full time, I take our kids are, heck I am married. So, it is great to let people know that because I am in an e-wc I can still have a great life. Most people can not dream of a life without being able to walk, etc. Just because some people ask the wrong question, or smile at you with a sense if disbelieve dose not make it better if we act stupid to boot.

My mom way back when I was first injured had so many worries and misunderstood thoughts. She was having a hard time learning about what my life could and could not become. She sees a quad t the local mall and just had to ask him a few questions. Not asking the questions in the correct code or knowing the secret hand shake the guy tore into my mom. The guy was a total ass in my book. My dad also. He saw an e-wc guy driving a van. He knew I loved to drive before my accident. So, he approached the man as he would any person to learn what type of controls, van, etc he used. The guy went assholedome.

Why? Humans by nature are curious. All of us. I bet we would all make the exact same mistakes if we had never been disabled. I don't know all of the types of disabilities and I am disabled.

We need to use the stupid questions that people ask as a learning experience and not attack those who smile at us "funny". Plz! Taking our frustrations out on those around us will not help anyone.

Mike

[Ms Rachy]

I was in the supermarket awhile ago and trying to decide on something banal like what flavour pasta sauce to choose, and by the time we had chosen one and started making our way up the aisle I noticed a little baby in a pram had been watching me, I just smiled because the baby was cute, and then the mother smiled at me and said "she's probably just jealous because yours is bigger"

Uh, ok.

[graphic]

Not really a stupid comment, more of a stupid regulation. In the UK different power companies charge different rates for power. I decided to change my supplier to N-Power. The girl that visited my home was very pleasant and after I'd completed the form she asked if I was registered disabled. When I said that I was she said she'd need someone to witness my signature. When I queried this and explained that I had a physical disability which in no way impaired my ability to make a considered decision she replied that it was the law. I rather think that this is just a company policy as I've never needed my signature witnessed before other than on my marriage certificate and my will. I was tempted to tell her what she could do with her forms and her power supply, but because she'd spent time with me and would have lost her commission I politely explained the absurdity of the regulation and had my wife witness my signature. After she'd left I vented my anger and frustration on myself, which just made me feel worse After writing this I think I'll get in touch with N-Power and give them a piece of my mind...but I doubt if they'll listen as they'll probably think 'another disabled nutter, good job we had his signature witnessed'.