19 replies to this topic

[Patty1]

Hi
I am in a Masters program for psychotherapy. I am taking a class on Diversity. I wanted to understand the issues of being in a chair. But I don't want to do it on this site, if it isn't appropriate. If anybody feels like answering back, I am interested in any info you are comfortable sharing. Particular challenges? How do people respond to you? Any particularly good books or films you would recommend? Thanks in advance for any help.

[nomis]

I'm happy for anyone to learn anything they can about SCI. You should be able to lose yourself for a few days in the archives of this site and by then you'll know what questions to ask. Personally, I'm open to trying to answer any genuine question put to me.

[Gecko]

Hi
I agree with nomis about the info on the forum.

also that I am available to answer any questions you may have.

cheers

[Ches]

Im willing if any questions directed towards woman should arise...

[Kwag_Myers]

That's why we're here.

I'd like to recommend that you watch 30 Days In a Wheel Chair, too. We've been discussing it here, and there's a link to a webisode. I think it's a good intro to what we've been through as far as the challenges of being in a chair.

[doublelibra]

When I was in the Graduate Counseling Program I gave the presentation in Multicultural Counseling class on disability issues. The suggestion to read the messages in this forum is a really good one. You might also consider arranging a presentation for your class. I think most communities have a local CIL, i.e. Center for Independent Living. Ours is called the League of Human Dignity. I participated in some panel discussions for students and some for faculty at the University and at the community college. The panel consisted of individuals with a variety of disabilities, and we received very positive feedback about our contribution to an understanding of our issues. Just ask if there's anything you want to know!

doublelibra

[Mike (c4-5) & Lorena]

Patty1, on Jun 17 2008, 10:54 PM, said:

Hi
I am in a Masters program for psychotherapy. I am taking a class on Diversity. I wanted to understand the issues of being in a chair. But I don't want to do it on this site, if it isn't appropriate. If anybody feels like answering back, I am interested in any info you are comfortable sharing. Particular challenges? How do people respond to you? Any particularly good books or films you would recommend? Thanks in advance for any help.

Can I make a suggestion? Start by answering your questions of what you think is a general answer. Then post your answers. Everyone here has a different look at life being SCI. Some take theirinjury very hard, others take it as a life challange. Think how you would feel, your family and friends, work, etc. Then our replies may make better sense.

L

[Patty1]

Patty1, on Jun 17 2008, 10:54 PM, said:

Hi
I am in a Masters program for psychotherapy. I am taking a class on Diversity. I wanted to understand the issues of being in a chair. But I don't want to do it on this site, if it isn't appropriate. If anybody feels like answering back, I am interested in any info you are comfortable sharing. Particular challenges? How do people respond to you? Any particularly good books or films you would recommend? Thanks in advance for any help.

I hope this will show up as one of the replies. I am new to chat rooms. Thanks for all the posts. I have been reading a lot of the posts on the site and it has been really helpful. I was also struck by what a supportive community you have created for each other. I did go to the site for 30 days in a chair and I couldn't figure out if I could actually view the show from there. If you know, let me know.

My most general question is how do people respond to you? Also, is there something that you would like from people when they interact with you? Something that gets under your skin. I did go out several times in a chair and had varied responses but a few afternoon excursions certainly are not the same as your experience.

[azx43]

Patty1, on Jun 19 2008, 06:37 AM, said:

Patty1, on Jun 17 2008, 10:54 PM, said:

Hi
I am in a Masters program for psychotherapy. I am taking a class on Diversity. I wanted to understand the issues of being in a chair. But I don't want to do it on this site, if it isn't appropriate. If anybody feels like answering back, I am interested in any info you are comfortable sharing. Particular challenges? How do people respond to you? Any particularly good books or films you would recommend? Thanks in advance for any help.

I hope this will show up as one of the replies. I am new to chat rooms. Thanks for all the posts. I have been reading a lot of the posts on the site and it has been really helpful. I was also struck by what a supportive community you have created for each other. I did go to the site for 30 days in a chair and I couldn't figure out if I could actually view the show from there. If you know, let me know.

My most general question is how do people respond to you? Also, is there something that you would like from people when they interact with you? Something that gets under your skin. I did go out several times in a chair and had varied responses but a few afternoon excursions certainly are not the same as your experience.

In my experience how people respond to me depends entirely on their own experience and educastion regarding wheelchair users. I personally am very outgoing aND also very sensitive; I "pick up" how others feel whether I want to or not. On the other hand, I definitely have a rebellious streak, too! I almost take pride in being what and where I'm not expected to be. I 'm a 27 yr old woman who uses a wheelchair; I look so ''normal'- whatever that means-; and there's a big difference between me and the 95 yr old guy in a chair. I also live in a community where there are not a lot of other active wheelchair users, so I'm accostomed to being the only one in the crowd. Not that seeing another person who uses a chair can't happen or something, it does and it usually makes me happy!

I've also found that having my service dog along is a wonderful ice-breaker! People smile at me more; want to talk with me about him; it's generally a good thing! The power of another species is amazing, and I'm sure many folks here can vouch for that!


I'm a regular person and like to be treAted that way. I can't stand and almost think it's funny/sad when it seems like all people can see is the chair, and that's all they can talk about. No, I do not want to hear about your cousin's roommate's friend's brother who's in a wheelchair, and the bad stuff they go through on a daily basis. No, I do not want to be pointed at,stared at, yelled at, or made such a big deal of. I like to laugh at (mentally) people who, upon seeing me, get this panicked look on their face and make a huge deal of passing me or being nearby me inside a store, etc. How would they like it if I treated them that way?

I'm very willing to answer any genuine question asked of me! Like the other's said, that's what we're here for!

Edited by azx43, 19 June 2008 - 04:54 PM.

[ruth]

If you are doing this as part of a course of study, dont forget that we are NOT representative of most disabilities (the 'disabled' sign is a wheelchair although actually very few disabled people even use a chair!)

SCIs also tend to have different issues / outlooks than many disabled people coz we have been through a quick, dramatic event usually instead of a long term illness or a condition we have have from birth. (I think many other disabled people think we have a chip on our shoulders coz we feel we have so much to bear - hope that makes sense!)

Particular challenges? Toileting is interesting and I found the hardest thing to live with

How do people react to me? Dont notice, dont really care either

This site is probably a good place to read info, especially the pschological effects of an SCI and the day to day problems we can encounter. I would also recommend going to a rehab unit and chatting to the newly injured, old hands, nurses, physios and OTs.

[Yong]

Reply to ruth's comment.... brief yet very profound. I totally agree with you in all aspects of your post.

Here's a smiley face for you...

[Kwag_Myers]

Patty1, on Jun 19 2008, 09:37 AM, said:

I did go to the site for 30 days in a chair and I couldn't figure out if I could actually view the show from there. If you know, let me know.

Just go to Webwych's post (here) and click the link. You should get a new browser window and the video will start automatically. Try it and let me know.

Patty1, on Jun 19 2008, 09:37 AM, said:

My most general question is how do people respond to you? Also, is there something that you would like from people when they interact with you? Something that gets under your skin. I did go out several times in a chair and had varied responses but a few afternoon excursions certainly are not the same as your experience.

Read this thread. There's 17 pages of pet peeves.

[Patty1]

Kwag_Myers, on Jun 19 2008, 04:56 PM, said:

Patty1, on Jun 19 2008, 09:37 AM, said:

I did go to the site for 30 days in a chair and I couldn't figure out if I could actually view the show from there. If you know, let me know.

Just go to Webwych's post (here) and click the link. You should get a new browser window and the video will start automatically. Try it and let me know.

Patty1, on Jun 19 2008, 09:37 AM, said:

My most general question is how do people respond to you? Also, is there something that you would like from people when they interact with you? Something that gets under your skin. I did go out several times in a chair and had varied responses but a few afternoon excursions certainly are not the same as your experience.

Read this thread. There's 17 pages of pet peeves.

Thanks. I checked out the video and read through 7 of the 17 pages. I need to go to bed but it is amazing all the things that wouldn't have occured to me.

[azx43]

Patty1, on Jun 19 2008, 09:32 PM, said:

Kwag_Myers, on Jun 19 2008, 04:56 PM, said:

Patty1, on Jun 19 2008, 09:37 AM, said:

I did go to the site for 30 days in a chair and I couldn't figure out if I could actually view the show from there. If you know, let me know.

Just go to Webwych's post (here) and click the link. You should get a new browser window and the video will start automatically. Try it and let me know.

Patty1, on Jun 19 2008, 09:37 AM, said:

My most general question is how do people respond to you? Also, is there something that you would like from people when they interact with you? Something that gets under your skin. I did go out several times in a chair and had varied responses but a few afternoon excursions certainly are not the same as your experience.

Read this thread. There's 17 pages of pet peeves.

Thanks. I checked out the video and read through 7 of the 17 pages. I need to go to bed but it is amazing all the things that wouldn't have occured to me.

That's a pretty awesome video, and I wish that more ABs would do something like that. (I also found it on iTunes!)

I just want to say that I think your project for your degree is great! I absolutely agree with ruth on that people with different types of disabilities can have completely different perspectives. Even people with the "same" disability (deafness, blindness, etc.) can have totally unique outlooks depending on whether they were born with or acquired their disability, their current lifestyle, etc.

I myself am a survivor of head injury that was the result of illness, so many of the issues that I have are different from some people with SCI. I use a lightweight manual wheelchair, but can also walk slowly with crutches. I have truly been inspired by my participation in this forum, and by meeting all of you!

One thing I wish many folks would remember is that not all people that use wheelchairs are created equal. Two people in chairs can have completely different abilities, and the only thing that's the same about them is the fact that they both get around on 4 wheels. :-)

[Patty1]

azx43, on Jun 20 2008, 07:17 PM, said:

Patty1, on Jun 19 2008, 09:32 PM, said:

Kwag_Myers, on Jun 19 2008, 04:56 PM, said:

Patty1, on Jun 19 2008, 09:37 AM, said:

I did go to the site for 30 days in a chair and I couldn't figure out if I could actually view the show from there. If you know, let me know.

Just go to Webwych's post (here) and click the link. You should get a new browser window and the video will start automatically. Try it and let me know.

Patty1, on Jun 19 2008, 09:37 AM, said:

My most general question is how do people respond to you? Also, is there something that you would like from people when they interact with you? Something that gets under your skin. I did go out several times in a chair and had varied responses but a few afternoon excursions certainly are not the same as your experience.

Read this thread. There's 17 pages of pet peeves.

Thanks. I checked out the video and read through 7 of the 17 pages. I need to go to bed but it is amazing all the things that wouldn't have occured to me.

That's a pretty awesome video, and I wish that more ABs would do something like that. (I also found it on iTunes!)

I just want to say that I think your project for your degree is great! I absolutely agree with ruth on that people with different types of disabilities can have completely different perspectives. Even people with the "same" disability (deafness, blindness, etc.) can have totally unique outlooks depending on whether they were born with or acquired their disability, their current lifestyle, etc.

I myself am a survivor of head injury that was the result of illness, so many of the issues that I have are different from some people with SCI. I use a lightweight manual wheelchair, but can also walk slowly with crutches. I have truly been inspired by my participation in this forum, and by meeting all of you!

One thing I wish many folks would remember is that not all people that use wheelchairs are created equal. Two people in chairs can have completely different abilities, and the only thing that's the same about them is the fact that they both get around on 4 wheels. :-)

Hi
Thanks for the info. I loved your earlier post about your service dog too. I'm a dog person and can relate to their amazing impact on our lives. Just lost mine, so I am feeling very sad...P

[fatdave]

I am willing to share my story, and my experiences with you.

I am a 24 year old male from Valley park missouri, U.S.A. my injury is a result of doctors not listening, bad genetics and obesity. I i suffered from what my doctors called sciatica like symptoms. I suffered with these symptoms (EXTREME pain and swelling and loss of the ability to walk or sit or lay) for 2 years until one day after suffering from a new symptom, my right foot feeling like it was stuck in a fire, i went to the emergency room with my mri report in my hands saying i was suffering from severe spinal stenosis, and 3 slipped and ruptured disc. The attending doctor told my i couldnt be in that much pain and told me to leave, that i wasnt getting any narcotics. The next morning i awoke and found that i couldnt feel anything below about my waist.

The next day i had surgery to relieve the pressure on my spinal cord, and was told i'd probably never walk again. I was then transfered to the rehab center and spent a month there learning my new life. I was taught how to take care of myself and they worked on teaching me strengthening and how to transfer and do everything that was so simple before.

In the time i've been home i have since began standing and working on taking steps with the use of a walker, i have also regained the use of my bladder.

I i have learned to ask for help, instead of being bullheaded and i have learned that even though i cant walk, and have to spend my life in a wheelchair my fiance is still going to be here and i can still be a father to our son. with this forum i have learned the things that rehab didnt teach me, and that if i try i will find a way to do anything i want

The level of my injury is low, and i was told i was lucky. i didnt understand that until i looked around the people in my rehab, and read the stories here. I can tell you more if need be, just send me a private message.

People look at me, and see an obese lazy person in a wheel chair. they do not ask, they just assume. thats the only stigma i have and i wish people would just ask.

[Patty1]

fatdave, on Jun 20 2008, 10:46 PM, said:

I am willing to share my story, and my experiences with you.

I am a 24 year old male from Valley park missouri, U.S.A. my injury is a result of doctors not listening, bad genetics and obesity. I i suffered from what my doctors called sciatica like symptoms. I suffered with these symptoms (EXTREME pain and swelling and loss of the ability to walk or sit or lay) for 2 years until one day after suffering from a new symptom, my right foot feeling like it was stuck in a fire, i went to the emergency room with my mri report in my hands saying i was suffering from severe spinal stenosis, and 3 slipped and ruptured disc. The attending doctor told my i couldnt be in that much pain and told me to leave, that i wasnt getting any narcotics. The next morning i awoke and found that i couldnt feel anything below about my waist.

The next day i had surgery to relieve the pressure on my spinal cord, and was told i'd probably never walk again. I was then transfered to the rehab center and spent a month there learning my new life. I was taught how to take care of myself and they worked on teaching me strengthening and how to transfer and do everything that was so simple before.

In the time i've been home i have since began standing and working on taking steps with the use of a walker, i have also regained the use of my bladder.

I i have learned to ask for help, instead of being bullheaded and i have learned that even though i cant walk, and have to spend my life in a wheelchair my fiance is still going to be here and i can still be a father to our son. with this forum i have learned the things that rehab didnt teach me, and that if i try i will find a way to do anything i want

The level of my injury is low, and i was told i was lucky. i didnt understand that until i looked around the people in my rehab, and read the stories here. I can tell you more if need be, just send me a private message.

People look at me, and see an obese lazy person in a wheel chair. they do not ask, they just assume. thats the only stigma i have and i wish people would just ask.

Thanks for telling me your story. Must be hard to accept that that doctor's incompetance and suspicion might have kept you from getting help in time. I am glad that you have your fiance and son in your life. There are people who can see beyond the weight. I have struggled with weight at different times in my life and I am always amazed at the people that judge you on that basis alone. But then I chose not to have them in my life. Good luck with your rehab.

[azx43]

[/quote]

Hi
Thanks for the info. I loved your earlier post about your service dog too. I'm a dog person and can relate to their amazing impact on our lives. Just lost mine, so I am feeling very sad...P
[/quote]


Hi Patty1!
I'm so sosrry to hear about your dog.

There's a photo of my 4-legged in my avatar, under my name. We are also on the K-9 Drill Teaz together, and perform at parades,shows, and other events. It's a lot of fun, and definitely a challenge, but a good challenge.

[wheeliebear75]

I would be willing. I just don't know what it is that you're looking for. ;) I think a big difference is that when I was able to walk around........I blended in........I stick out like a sore thumb; it's not the same as a famous person.......but most people don't have a dozen+ people staring at them eat lunch or dinner at a restaurant........we do. Sit in a wheelchair and you'll discover why I say "wheelchairs are made of a special ocular magnetic alloy......they're eyeball magnets". ;) I don't know if it makes any difference or not.........I along with a few others here don't just have SCI we also have other disabilities as well. I'm legally blind, have a spinal cord abrasion (partially paralyzed) @ L2, and I have a TBI (Traumatic Brain Injury).

[gsp23]

I dont think anyone here would mind answering specific questions since you were up front to begin with about who you are and why you are here. That honesty is the most important thing off the bat. A lot of the questions you are trying to get to the bottom of on how we respond to people and how they respond to use can be seen if you read the posts here What Annoys You About Being Paralyzed. Its 17 pages long but each one is worth the time to read.

Edited by gsp23, 24 June 2008 - 10:39 PM.