The BPI Community Needs A Spokesperson
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: The BPI Community Needs A Spokesperson
spokespeople for particular conditions are not often someone who actually suffers from the condition. I know that for myself, no matter how rich and influential I was I would not be comfortable in a role that constantly focused on my disability, which in fact hardly affects my life-or at least, doesn't affect it in as meaningful a way as other things also in my life.
If I were that influential I would probably be campaigning on some of the issues Martin sheen and Al Gore are involved with, which to be honest worry me more than my arm. And if I were rich I would seek to establish an adult centre similar to the Shriners childrens clinics where people injured in adulthood (and birth injured people who are adults) who would otherwise have no access to specialist treatment can be seen. There are a lot of totally untreated tbpi out there without hope as anyone who follows the tbpi board will know.
BUT....I do care very much about bpi and I am doing my bit despite being a nonentity in the most remote country on earth. Next semester I'm starting to study to become a Childbirth Educator. I will be able to help parents make informed decisions about birthing position, outline the risks of interventions like induction of labour, epidural etc. I am looking forward to it. If my efforts prevent one birth injury I will consider it worthwhile.
Jen NZ
If I were that influential I would probably be campaigning on some of the issues Martin sheen and Al Gore are involved with, which to be honest worry me more than my arm. And if I were rich I would seek to establish an adult centre similar to the Shriners childrens clinics where people injured in adulthood (and birth injured people who are adults) who would otherwise have no access to specialist treatment can be seen. There are a lot of totally untreated tbpi out there without hope as anyone who follows the tbpi board will know.
BUT....I do care very much about bpi and I am doing my bit despite being a nonentity in the most remote country on earth. Next semester I'm starting to study to become a Childbirth Educator. I will be able to help parents make informed decisions about birthing position, outline the risks of interventions like induction of labour, epidural etc. I am looking forward to it. If my efforts prevent one birth injury I will consider it worthwhile.
Jen NZ
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: The BPI Community Needs A Spokesperson
Yeah Jenny! You are more important than some popular spokesman... The people you will reach will be the ones who most need the information about child birth injuries.
Wish you could set up a clinic for all of the adult bpi who do not get the medical attention we need.
Now could you please strike it rich... LOL..
Kath robpi/adult
Wish you could set up a clinic for all of the adult bpi who do not get the medical attention we need.
Now could you please strike it rich... LOL..
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: The BPI Community Needs A Spokesperson
Mandie
Since you asked... she is either loved or hated depending on how you see her.
That would not work to spread Awareness...
It may create controversy and not about us but about her...
It would be better to have someone most people have a very positive attitude towards.
I believe people wrote to her years ago when she had the Rosie show and did not get a response.
Just my opinion
Kath robpi/adult
Since you asked... she is either loved or hated depending on how you see her.
That would not work to spread Awareness...
It may create controversy and not about us but about her...
It would be better to have someone most people have a very positive attitude towards.
I believe people wrote to her years ago when she had the Rosie show and did not get a response.
Just my opinion
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: The BPI Community Needs A Spokesperson
just asking...thanks for explaining lol
Re: The BPI Community Needs A Spokesperson
hi jenny,
I think the main goals in having a spokesperson or celebrity "sign on to your cause" is to: 1) gain a whole lot of awareness through media outlets and their notoriety; and 2) as the article mentioned, it helped this couple raise a great deal of $ for their cause and awareness...as hard as I try...I can't think how that would be bad for UBPN.
I hope and pray we don't get a celebrity sign on because of an injury to their child or a family member's child, but because someone really wants to help put an end to OBPI's. Either way, having that kind of help spreading awareness would be welcome.
A thought...what about Brad and Angelina?
I think the main goals in having a spokesperson or celebrity "sign on to your cause" is to: 1) gain a whole lot of awareness through media outlets and their notoriety; and 2) as the article mentioned, it helped this couple raise a great deal of $ for their cause and awareness...as hard as I try...I can't think how that would be bad for UBPN.
I hope and pray we don't get a celebrity sign on because of an injury to their child or a family member's child, but because someone really wants to help put an end to OBPI's. Either way, having that kind of help spreading awareness would be welcome.
A thought...what about Brad and Angelina?
Re: The BPI Community Needs A Spokesperson
I tried Rosie on her blog a few months ago...nothing!
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: The BPI Community Needs A Spokesperson
Hi Ben's Dad
Yes, I know it would be fantastic for UBPN and bpi in general to have a famous spokesperson for the reasons you mention. My point was that it's not very likely that someone with the injury would want to do that. If a celebrity couple did have an obpi child then you might get something, but I don't think that will be Brad and Ange, she has c-sections like so many celebs do. Plus, like Sheen and Gore they are involved with "big" issues like child welfare in the Third World which kind of eclipse things like bpi-unless your child happens to have one!
Interestingly I was once reading here with a friend who has a Downs daughter. She was really interested in all the awareness stuff and info because she is an advocate for natural birth, but when she saw the bit that says "obpi is more common than Downs" she saw red-she said to even talk about the two conditions in the same sentence was insulting, and that the reason more was known about Downs than bpi was because it was obviously a worse condition (her opinion, please note, not necessarily mine, but when she pressed me I had to admit that if I had to make the choice between the two conditions in any of my babies I know which I'd choose) and she also said that in fact most non Downs specialist doctors (ie most doctors) know nothing about Down's either. The fact that obpi is totally preventable and Down's isn't was something else she said, but that's of course where Awareness comes in. The uk Erbs Palsy group direct their awareness at the medical profession and run workshops for birthing professionals, I'd be much happier to have myself 'used' in that way rather than putting my arm 'out there' for the general public.
This is a difficult subject and one which has come up before, nobody wants to be defined by their condition yet for awareness it's the condition that needs to be focussed on. I find myself taking offence at the most unexpected things, such as a bpi hospital website that used to say that an unresolved bpi would severely impact on the life of the person who had it. I would still dispute that, and I took it up with the hospital involved asking them to at least change the word 'would' to 'could'-they didn't reply but have since removed that section from their website. For someone with a bpi, weighing up the possible benefit to all sufferers of using yourself for awareness against making a point of publicising the condition is a hard choice. Hats off to those who can do this, to me it feels unnatural and forced because I've never thought of myself as anything other than completely normal despite not getting my tbpi until I was 21. It's normal for me to have no use of my right arm, just as it's normal for my sister to be totally disabled by hay fever 4 months of the year, and she sure suffers more than I do!
Today I got talking to a teenage girl who was pregnant and found that she's had no information at all about birthing positions, and that when she asked about pain relief in labour she was told not to worry, if it got too bad she could have an epidural. There was NO mention of the risks. She is now fully informed and has gone back to her ob/gyn with a giant list of questions
Yes, I know it would be fantastic for UBPN and bpi in general to have a famous spokesperson for the reasons you mention. My point was that it's not very likely that someone with the injury would want to do that. If a celebrity couple did have an obpi child then you might get something, but I don't think that will be Brad and Ange, she has c-sections like so many celebs do. Plus, like Sheen and Gore they are involved with "big" issues like child welfare in the Third World which kind of eclipse things like bpi-unless your child happens to have one!
Interestingly I was once reading here with a friend who has a Downs daughter. She was really interested in all the awareness stuff and info because she is an advocate for natural birth, but when she saw the bit that says "obpi is more common than Downs" she saw red-she said to even talk about the two conditions in the same sentence was insulting, and that the reason more was known about Downs than bpi was because it was obviously a worse condition (her opinion, please note, not necessarily mine, but when she pressed me I had to admit that if I had to make the choice between the two conditions in any of my babies I know which I'd choose) and she also said that in fact most non Downs specialist doctors (ie most doctors) know nothing about Down's either. The fact that obpi is totally preventable and Down's isn't was something else she said, but that's of course where Awareness comes in. The uk Erbs Palsy group direct their awareness at the medical profession and run workshops for birthing professionals, I'd be much happier to have myself 'used' in that way rather than putting my arm 'out there' for the general public.
This is a difficult subject and one which has come up before, nobody wants to be defined by their condition yet for awareness it's the condition that needs to be focussed on. I find myself taking offence at the most unexpected things, such as a bpi hospital website that used to say that an unresolved bpi would severely impact on the life of the person who had it. I would still dispute that, and I took it up with the hospital involved asking them to at least change the word 'would' to 'could'-they didn't reply but have since removed that section from their website. For someone with a bpi, weighing up the possible benefit to all sufferers of using yourself for awareness against making a point of publicising the condition is a hard choice. Hats off to those who can do this, to me it feels unnatural and forced because I've never thought of myself as anything other than completely normal despite not getting my tbpi until I was 21. It's normal for me to have no use of my right arm, just as it's normal for my sister to be totally disabled by hay fever 4 months of the year, and she sure suffers more than I do!
Today I got talking to a teenage girl who was pregnant and found that she's had no information at all about birthing positions, and that when she asked about pain relief in labour she was told not to worry, if it got too bad she could have an epidural. There was NO mention of the risks. She is now fully informed and has gone back to her ob/gyn with a giant list of questions
Re: The BPI Community Needs A Spokesperson
I think Montel would be a good one he is involved with the PPA (partnership for prescription assistance) and generally seems to be interested in helping people.
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: The BPI Community Needs A Spokesperson
I think he would too but he has MS and I'll bet he is very involved with that cause.
The drugs for MS are so over the top it is impossible for some people to get them.
I'll bet that is why he is involved with getting drugs for people who need them.
People can't afford to buy the drugs to help keep the flare ups to a minimum.
Kath robpi/adult
The drugs for MS are so over the top it is impossible for some people to get them.
I'll bet that is why he is involved with getting drugs for people who need them.
People can't afford to buy the drugs to help keep the flare ups to a minimum.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
