Why not education?

[Mindy]

I am wondering why TBPI and OBPI are now seperated onto two boards? I know there has been a recent heated discussion between the two groups but why didn't UBPN try education first. This site has very little on TBPI which did not help. As a TBPI it was very upsetting and frustrating to have someone tell me my injury was not that bad because I had not had it since birth. Why can't there be more articles on TBPI so people are aware of what we go through both physically and emotionally.
I truely think TBPI injuries are now being minimized even more by UBPN's actions to create two boards. I doubt anything will be done by what I wrote but at least I know I tried...

[hazell]

i fully agree mindy & am personally very insulted by this action, after meeting many others with bpi wherever it came from, suppose you cant please all the people all of the time, yes lots of differences between obpi & tbpi but ive got as much support from obpis as i have tbpi & was fascinated to talk & meet people who had a similar injury but were born with it called an eye opener & yea education thought that was important, obviously not that important.

i suppose the only thing to comment is theres no money in tbpi especially if your a brit, free health care & shit so shove us to the back burners.

ok off to find a new interest online cos not feeling to welcome round here these days, bye hazel.

[lizzyb]

Hi mindy;
Good point you have raised...it's something some of the people with a tbpi tried to do something about, or at least get started on, by joining the last awareness committee...many hours of work were put into trying to produce a set of documents on line...(and in print for the Outreach magazine...) that would have been relevant and informative regarding adult tbpi's, but for several reasons, the documents you see on the awareness section of the UBPN site do not, in my opinion, go anywhere near addressing the desparate need for useful info. for and on behalf of any adult with a tbpi, particularly someone who is newly injured, but believe me, we did try...speaking for myself, I was completely disheartened by my experinces on the committee, so much so that I am VERY reluctant to tell newly injured people looking for support, about UBPN.

..I tend to agree with you that separating the message board into two (Obpi/tbpi) seems a bit of a thoughtless, kneejerk reaction...but I can see why whoever decides these things thought it might be best...but there is nothing, presumably, to stop each 'set' (sorry, couldn't think of a better word...!!) of people posting on each board? I must admit, I am also cheesed off with the whole thing now....and am wondering if there are some people who want to see all the tbpi people go somewhere else.....
Paranoia??.....maybe...

[Mindy]

I live in the US and a lot of people think that means we have awesome health care when that is not the case. After my accident I am almost ashamed to call myself an American.
In the US if you do not have health insurance you do not get treatment! As a result of my accident my entire family is now without health insurance! If I can not pay with cash or a credit card my family cannot see a doctor. I know there are people out there who think there are state and federal health programs that are there to help but news flash you cannot get on those programs! I have tried every month for twenty-two months and have been turned down!
As for the US and TBPI treatment... I was sent home and spent six months traveling up to seven hours in a car to see "specialists" before I was diagnosed. To date the only treatments my arm has recieved is a nerve block injection, casts, an OT who showed me ROM exercises, and more doctors than I will ever even admit to myself that said, "Your arm is fine it is all just in your head". Until I found this site I thought I was all alone.
As for Lizzy's suggestion I think we need our own site. More importantly though we need people who are willing to start screaming about the inhumane way we are treated. If we united our voices I cannot help but feel that some doctor in this world would listen and start working on new treatment options for us.
If anyone has any suggestions on how I can do this please e-mail me.

[francine]

I'm not TBPI or OBPI and not on the UBPN board either but I wanted to address a few comments from what "I" know or understand because of my involvement with Awareness as last year's committtee co-chair.

There's something that people still don't get, so here it is once again in writing:

"what you DO is what you SEE"

"if you want something DO IT"

This means that if you want articles on TBPI - then find them and send them in and they will be posted. If there's something - a new area that should be created for TBPI - then get it together and DO IT.

Maybe you think that UBPN is some big organization with an office and people just sitting there thinking up things to do and doing it and purposely leaving TBPI stuff out but it's not like that at all. There's no conspiracy here. Everything on here is created by "the people".

When people complained when the awareness committee started working together that there wasn't enough adult information out there, we said "join the committee and make it happen" and a group got together and what you see in the Awareness section is what was created.

So, you don't like it, don't think it's complete? I can understand that, it IS incomplete! So - gather up a committee- a TBPI info committee and DO IT - get the articles together, get the data together, get any kind of information together about TBPI - and it will go to the new awareness committee and become part of this site.

Wanna get the message out about TBPI? Don't want to feel like 2nd hand citizens or be slighted? then get to work! Being proactive is one of the best ways to get out of slump or to get around angry feelings about what somebody else is NOT doing for you.

Now about the separate boards, I, personally think it's a great thing that this was done.... for tbpi's AND for obpi's. Why? Because from what I've been reading, the ONLY thing you guys have in common mainly is that in both cases, your brachial plexus nerves have been affected.

There are almost COMPLETELY different physical issues, emotional issues, and psychological issues. TBPI's not understanding the OBPI's and the OBPI's not understanding the TBPI's. And guess what? NEITHER OF YOU understand what it's like to be a parent of an injured child either!

Education IS important for each group to understand each other.

So what's stopping you from crossing boundaries? And what's wrong with having honorable separation of space?
I go to the adult boards and read and post when I feel I should. But my HOME is on the general board with the other moms and dads.

You know... an OBPI doesn't know what it means to have something and lose it like the TBPI's do. And the TBPI doesn't know what it means to never have it and deal with it for life and go through the childhood stuff. Why shouldn't everyone have a bit of safe space they can call their own when sometimes they want their own issues to take the priority?

Let's just all be happy that this place EVEN EXISTS!
Let's look at the positive side!

Stepping off my soapbox and awaiting tomatoes being thrown at me,
francine

[jennyb]

mindy-i had that challenge thrown at me a while ago, 'If you don't see here what you want/need, do something about it etc etc' so i joined awareness.
It was the single worst experience of my bpi life. i have never felt so 'different' and unheard as then. sorry, i felt (and feel) that we let down our fellow injured peeps, but we couldn't possibly succeed in that atmosphere, and that's the reason there isn't much info here relevant to us.
i actually don't have a problem with the board division, i can't see how any tbpi will miss out on any relevant info, and newbies may avoid the treatment you got. i tend to support newbies by e mail anyway and i know other tbpi longtermers do that too. i am in regular contact with my bpi mates, whether they are parents of injured children, obpi or tbpi-i have good friends in all those groups. they may not understand what it is to have a tbpi, that doesn't mean they aren't interested-they are all caring people and are receptive to my views and experiences, including the negative ones, that's what support is about as far as i'm concerned, and it's a 2 way street. it's not so much 'you get out what you put in' as 'you get out what you need and give what you can'. i know that for you, what you need info wise isn't here, for which again i am sorry. emotionally, though, you will get all the support you need if you ask for it.

[francine]

Jenny- it certainly is interesting to read about your feelings about the Awareness committee especially when the adult team consisted of your 'mates'. In the three months the team had to get paperwork together, I was still begging for at least one document the very last day of the deadline.

It seems to me that everyone spends a lot of time pointing fingers and complaining and nobody wants to get to the real grind themselves. TBPI's still have every chance in the world to get what they need.

So you don't think that the Awareness Committee worked for you? I agree! The daily arguing and slamming didn't work for us either! So form your own committee - form your own forum - it's free in yahoo or delphi and do it totally independently and then submit it for inclusion. OR - if the whole concept sucks, then start your own website and message board and get all the information you want to include in your own space.

If you REALLY want it to happen then it will and you will get EVERYTHING you need and the support you are all crying for.

What's stopping TBPI's now?

[Bridget]

First of all, I would like to apologize on behalf of UBPN for the way the division of the message boards was brought about...it would have been best to post a message on the board stating that the division was to take place, when, and why. I'm sorry that did not happen. I am a firm believer that communication can really help avoid misunderstandings, as in this case.

The message boards were divided after UBPN received numerous requests from our community to do so. The division was not meant to "separate" people, but to provide more focused forums. Of course everyone is encouraged to move between forums and post wherever they have an interest.

From my personal perspective, the main reason that there is so little information about TBPI provided on this site is that there is so little information actually out there anywhere on this topic.

Our sincere goal as an organization is to provide support and information to our community...regardless of the causation of the injury. If the information is out there, we would welcome the knowledge and would welcome the chance to share it with our community. Please forward any information on TBPI (or any other BPI issue) to info@ubpn.org and we will do our best to help others have access to it.

Or, you can email me directly (as the Editor of Outreach) and we can look at the information for possible inclusion in a future issue of that publication.

As far as our role as an organization is concerned, we are not in a position to actually create/author medical articles on any topic. We can, however, encourage the medical community to turn their attention to this matter, and our efforts in this arena have been positive to date...for the first time ever brachial plexus injuries are now in line for federal research dollars. UBPN (Sharon Gavagan and Bob Dole in particular) was instrumental in bringing this about.

We have applied for the status with the IRS that will allow us more lobbying freedom, and we plan on continuing our efforts in this area of influence. We have many lofty plans that we would love to see come to life to help our community, to provide real research on topics of vital interest to us, to work towards methods of repairing these injuries and relieving pain. Please keep in mind that we are a strictly volunteer organization, very young, and while we do have high expectations, we also have limited funds, limited time and limited influence. I am sure that over time all of this can change, with your support.

Thanks for caring,
Bridget

[lizzyb]

Thank you Bridget for posting the reasons why the message boards were split, although I personally still can't help wondering what actually brought it about. I agree that communication can not only avoid misunderstandings, but is fundamental in building up trust and friendship between people from all walks of life who have a common goal.

This I personally feel is the single most important factor that was almost entirely missing in the Awareness effort, and that is why I and some of the others who were in the adult team feel the way we do about the whole Awareness 'experience' and then, from that, inhevitably, toward UBPN.

There is plenty of information out there for TBPI; I have been collecting it since joining Awareness, but stopped submitting it to the committee after all, if not most, of our (the active members of the adult team) efforts were either completely ignored, or altered almost beyond being recognisable as anything we had worked on. By the start of Awareness Week, there could have been a solid 'core' adult information section on the site, and for Outreach, which would have contained plenty of relevant and useful info. if only we had been encouraged and not actively discouraged by unhelpful interference and non-constructive criticism. I can only speak for myself, but I would have willingly carried on way past Awareness week working on the adult info. (I suspect this is true for several of the others also...)if I had been left and trusted to get on with it.

I and others are well aware that UBPN is a young volunteer led organisation, and that as an organisation, has plans and expectations for the future, and these claim to include welcoming more participation from injured adults, from all over the world as well as the USA.

This is a very tall order, and one that, as a relatively small organisation, UBPN WILL need help with, from people who KNOW about all the different aspects and problems RELEVANT to their situation; in other words, IF UBPN is serious in this quest, those who know what it is like to be in a certain situation (e.g;injured Brit) should be allowed to prepare/submit relevant info FOR people who are in a similar sitution.

What I am trying to say is; there was an oppurtunity missed by UBPN, I haven't seen anything since Awareness week to change MY mind about not taking an active part in providing info; everything will be altered to fit UBPN's version, how they perceive things are for an tbpi adult, and I cannot agree with that.

I am way ahead of you Francine where a new website is concerned; hopefully it will be live very soon in the new year. I started it a long time ago, during the first few weeks of joining the committee.

UBPN has ALWAYS had my support, and up to a point, always will... unfortunately, it or rather some of its community have not supported me, or others like me sometimes, but I will always be deeply grateful for the true friends I have met here.

Liz .

[Bridget]

Lizzy,

Thank you for your comments.

As the Communications Chair for UBPN and an Awareness Committee member this year (I organized the event last year) I have played a large role in shaping the communications materials for UBPN since its inception. By profession I am a writer, editor and graphic designer. I take my work (and my volunteer work) seriously, and I try to have very high editorial standards. Sometimes the material that is submitted to me needs to be seriously altered to a) meet editorial and professional standards; b) protect the organization from legal issues; c) avoid conflict and redundancy with other information sources.

Sometimes the author of one particular piece of information might not have access to the other 20 or so pieces of information that make up the whole, and therefore they may not understand some of the editorial changes deemed necessary. However, in this organization as in all others, at some point editorial decisions must be made, and I take full responsibility for all documents/information that have passed through my hands.

I have been working in the BPI area for seven years, and I base my decisions on my knowledge of this topic, the community and the legal issues that we must constantly be aware of as board members of a non-profit organization. Perhaps someone else doing the same job might make different decisions given the same set of circumstances. My personal apologies if any editorial decisions that I have made were offensive to you, but again, I am continually trying to use my best judgement with a view of the big picture.

I do not know the details of your participation on the Awareness Committee this year, but I am sorry that it was not as fulfilling an experience for you as it was for others. I know that the two years I have participated have been both extremely frustrating and extremely rewarding.

I encourage you to continue your efforts towards awareness, regardless of if is through the auspices of UBPN or not. I regret that you seem to have some negative feelings towards UBPN, and I hope that in the future your interactions with our organization are more positive.

If you are interested in sharing the information you mention having gathered directly with me, I am open to that discourse.

Best wishes,
Bridget