Brown University Student looking for an Interview from a SCI patient - Page 2

duceno1 · 04-23-2003, 12:34 PM

I'm with cjo on this one, I could care less what designation I am assigned. Are there not bigger concerns than if someone mistakenly uses the word 'patient' when referring to us? At least she was taking an interest in educating herself on the lives of individuals with SCI, but instead after being bashed by some, she will more than likely hold a negative view of us as being over-sensitive, nit-picky whiners. Just the portrayal I've always wanted.

"I will drive the lane,
I will drain the three,
I will finger roll,
but the one thing I will not do is FADE AWAY"

Clipper · 04-23-2003, 04:43 PM

Quote:

Originally posted by Green Machine:

I'm with cjo on this one, I could care less what designation I am assigned. Are there not bigger concerns than if someone mistakenly uses the word 'patient' when referring to us? At least she was taking an interest in educating herself on the lives of individuals with SCI, but instead after being bashed by some, she will more than likely hold a negative view of us as being over-sensitive, nit-picky whiners. Just the portrayal I've always wanted.

There will always be "bigger concerns" no matter what subject is discussed. But I would hope that part of this student's learning process would be gaining an understanding of what "lingo" is deemed offensive by those of us with SCI. Obviously, some people find the use of certain words to be offensive. Others do not. I don't think it's being "nit-picky" to voice an opinion either way if the student has a real desire to learn and not just complete the assignment.

SCI-Nurse · 04-23-2003, 05:57 PM

Patient implies you are sick, which is different than having a disability. Being sick perpetuates the medical model of disability, vs. the independent living model.

I think it is especially important that students (who should be using this as a learning experience) do some serious re-evaluation of the power and meaning of language. It does make a difference.

(KLD)

duceno1 · 04-24-2003, 06:35 AM

While I personally am not offended by the use of the word 'patient', I can completely understand why some would be. My problem was not that some had concerns over the terminology used, but instead how some chose to voice those concerns. Granted this person used an inappropriate term, but more than likely their exposure or experiences with an individual with SCI is limited, therefore the "correct" terms to identify one with a disability may be unknown. Would it not be better to educate this person, as KLD has done, rather than resort to attacking her? In the end I think it would benefit us all by resorting to the former.

"I will drive the lane,
I will drain the three,
I will finger roll,
but the one thing I will not do is FADE AWAY"

mattcorregan · 04-24-2003, 09:12 AM

i'm not really overly sensitive....for the most part. just sometimes have a bad day, people parking in handicap spaces, leaving grocery carts in them, no accessible doors, excessive nerve pain, constipation, the antithesis of constipation, etc., etc. just felt like bashing a poor uneducated soul, probably a bad idea. would like to hear a valid reason for excluding quads, since we deal with a large amount of common issues with paras.

Curt Leatherbee · 04-24-2003, 10:34 AM

Are you still around Kim? I would be willing to help you out if you want, I am a t-4 complete 22 years post (Chronic, no longer a Patiant, lol) and live near Providence. I found the Nerve Regeneration info on your Brown.edu site very interesting. Hopefully Brown will produce many sucessful researchers for the future.

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

antiquity · 04-24-2003, 11:26 AM

Kim, just out of curiousity, why aren't you interested in interviewing persons with quadriplegia? Do you think future treatments for spinal cord injury would exclude those with quadriplegia?

Thanks.

Curt Leatherbee · 04-26-2003, 10:19 PM

Just e mailed you your survey Kimberly, hope this helps out.

Curtis

Seneca, I believe she was refering the term "Paraplegic" as a term for SCI in general. I have seen a lot of people use this type of terminology in the past when refering to the group of SCI people.

One thing that did kind of bother me on the Survey was the last question. "If you were given the opportunity to be completely healthy for the rest of your life, how many years of your life would you be willing to trade? (for example, if you are 50 right now and are expected to live 27 more years with SCI, how many of those would you be willing to trade to be completely healthy for the rest of your life?)"

Heck, I've already had one real crappy thing happen to me in this life, now I am suppose to start giving away years of my life???

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

[This message was edited by Curtis on 04-27-03 at 04:03 AM.]

SCI-Nurse · 04-27-2003, 11:30 AM

I sent an e-mail to the original poster on 4/13 inviting them to come back to this forum and review comments and respond. Apparently since the school assignment date is over, they are not interested in feedback.

Regarding Curtis's comment, again using the independent living model, disability is not an illness, so if you are not "sick" in addition to having a disability, I guess you don't have to give up any years!!!

(KLD)

Curt Leatherbee · 04-27-2003, 11:39 AM

Thanks KLD, I have given up enough already. How do people come up with these questions? Its as if they think there is some evil God that put us in these chairs and we have to make a deal with the devil to get out of them?

I guess Kims assignment is due tomorrow she said in her e mail. The original person who was suppose to answer the survey never got back to her after she sent it to them so I figured I would help her out when she e mailed me. Perhaps they were so insulted by the last question I quoted that this could be the reason. The rest of the questions were legit questions regarding medical facts, Stem Cells, History, etc.

"Life is about how you
respond to not only the
challenges you're dealt but
the challenges you seek...If
you have no goals, no
mountains to climb, your
soul dies".~Liz Fordred

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04-23-2003, 12:34 PM	#11
duceno1 Senior Member Join Date: Apr 2002 Location: Gilbertsville, Pa. Posts: 143	I'm with cjo on this one, I could care less what designation I am assigned. Are there not bigger concerns than if someone mistakenly uses the word 'patient' when referring to us? At least she was taking an interest in educating herself on the lives of individuals with SCI, but instead after being bashed by some, she will more than likely hold a negative view of us as being over-sensitive, nit-picky whiners. Just the portrayal I've always wanted. "I will drive the lane, I will drain the three, I will finger roll, but the one thing I will not do is FADE AWAY"

04-23-2003, 05:57 PM	#13
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,349	Patient implies you are sick, which is different than having a disability. Being sick perpetuates the medical model of disability, vs. the independent living model. I think it is especially important that students (who should be using this as a learning experience) do some serious re-evaluation of the power and meaning of language. It does make a difference. (KLD)

04-24-2003, 06:35 AM	#14
duceno1 Senior Member Join Date: Apr 2002 Location: Gilbertsville, Pa. Posts: 143	While I personally am not offended by the use of the word 'patient', I can completely understand why some would be. My problem was not that some had concerns over the terminology used, but instead how some chose to voice those concerns. Granted this person used an inappropriate term, but more than likely their exposure or experiences with an individual with SCI is limited, therefore the "correct" terms to identify one with a disability may be unknown. Would it not be better to educate this person, as KLD has done, rather than resort to attacking her? In the end I think it would benefit us all by resorting to the former. "I will drive the lane, I will drain the three, I will finger roll, but the one thing I will not do is FADE AWAY"

04-24-2003, 09:12 AM	#15
mattcorregan Senior Member Join Date: Mar 2003 Location: Sanford, NC Posts: 116	i'm not really overly sensitive....for the most part. just sometimes have a bad day, people parking in handicap spaces, leaving grocery carts in them, no accessible doors, excessive nerve pain, constipation, the antithesis of constipation, etc., etc. just felt like bashing a poor uneducated soul, probably a bad idea. would like to hear a valid reason for excluding quads, since we deal with a large amount of common issues with paras.

04-24-2003, 10:34 AM	#16
Curt Leatherbee Moderator Join Date: Jul 2001 Location: Florida Posts: 9,338	Are you still around Kim? I would be willing to help you out if you want, I am a t-4 complete 22 years post (Chronic, no longer a Patiant, lol) and live near Providence. I found the Nerve Regeneration info on your Brown.edu site very interesting. Hopefully Brown will produce many sucessful researchers for the future. "Life is about how you respond to not only the challenges you're dealt but the challenges you seek...If you have no goals, no mountains to climb, your soul dies".~Liz Fordred

04-24-2003, 11:26 AM	#17
antiquity Moderator Join Date: Jul 2001 Posts: 14,540	Kim, just out of curiousity, why aren't you interested in interviewing persons with quadriplegia? Do you think future treatments for spinal cord injury would exclude those with quadriplegia? Thanks.

04-26-2003, 10:19 PM	#18
Curt Leatherbee Moderator Join Date: Jul 2001 Location: Florida Posts: 9,338	Just e mailed you your survey Kimberly, hope this helps out. Curtis Seneca, I believe she was refering the term "Paraplegic" as a term for SCI in general. I have seen a lot of people use this type of terminology in the past when refering to the group of SCI people. One thing that did kind of bother me on the Survey was the last question. "If you were given the opportunity to be completely healthy for the rest of your life, how many years of your life would you be willing to trade? (for example, if you are 50 right now and are expected to live 27 more years with SCI, how many of those would you be willing to trade to be completely healthy for the rest of your life?)" Heck, I've already had one real crappy thing happen to me in this life, now I am suppose to start giving away years of my life??? "Life is about how you respond to not only the challenges you're dealt but the challenges you seek...If you have no goals, no mountains to climb, your soul dies".~Liz Fordred [This message was edited by Curtis on 04-27-03 at 04:03 AM.]

04-27-2003, 11:30 AM	#19
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,349	I sent an e-mail to the original poster on 4/13 inviting them to come back to this forum and review comments and respond. Apparently since the school assignment date is over, they are not interested in feedback. Regarding Curtis's comment, again using the independent living model, disability is not an illness, so if you are not "sick" in addition to having a disability, I guess you don't have to give up any years!!! (KLD)

04-27-2003, 11:39 AM	#20
Curt Leatherbee Moderator Join Date: Jul 2001 Location: Florida Posts: 9,338	Thanks KLD, I have given up enough already. How do people come up with these questions? Its as if they think there is some evil God that put us in these chairs and we have to make a deal with the devil to get out of them? I guess Kims assignment is due tomorrow she said in her e mail. The original person who was suppose to answer the survey never got back to her after she sent it to them so I figured I would help her out when she e mailed me. Perhaps they were so insulted by the last question I quoted that this could be the reason. The rest of the questions were legit questions regarding medical facts, Stem Cells, History, etc. "Life is about how you respond to not only the challenges you're dealt but the challenges you seek...If you have no goals, no mountains to climb, your soul dies".~Liz Fordred