An open letter from SueM

[SueM in MN]

I spent the whole day today doing disaster preparedness training with people from other hospitals; planning what we would do and how we would handle it if a disaster struck.
We spent the afternoon doing a 'tabletop' exercise to apply what we had covered earlier in the day. Our 'disaster' was a blizzard and ice storm (yes, in the middle of June) and our scenario had us losing all power in the hospital from our regular and back up generator, with no idea how long it would be out. In our 'pretend hospital' for the scenario, we would have 30 patients with ventilators breathing for them when the power went out. As we worked out everything - trying to think how long a ventilator battery could possibly last and how long the staff could last if they had to manually pump the patient's lungs, I had the sobering thought that I work in a hospital where we actually do have 25-30 patients on ventilators on an average day. And that if we did have a long power outage, a great number of our patients would probably die as a result. And, we could probably do very little to prevent it.

A few weeks ago, we had another disaster training exercise - that one was bioterrorism with Plague - aren't we a cheery bunch!

On my way home today, I heard the news stories:
12 more US troops killed in Iraq
Missing pregnant woman still not found
and close to home,
a 5 yr old girl with autism found dead in a pond just across the street from her home after she wandered away.
I thought of what it must be like to live in a situation where your 5 year old has no sense of danger and you have to be always vigilent to the possibility of her getting out. And what those parents must be going thru tonight and how they are going to live in that house (even stay there tonight) knowing that the pond that their DD drowned in is just 300 yards from their front door.

Those are the types of thoughts that I came to the DIS Boards to escape from.
The DIS Boards were my "happy place" where I could come to share a special place and ways to enjoy that special place with others who maybe thought the 'magic' was out of their reach.
But the DIS Boards have not been so happy. This has not just been one thread, it has been several over the past few months.
When I've come here lately, I've found things like:

• "they lied to me"
• "people know things and won't tell me"
• "people on the board are treating xxxxxxxx disability better than yyyyyyy."
• "some people are prejudiced"
• "no one will list exactly what the GAC does"
  (If you don't know what GAC stands for, post 6 of the disABILITIES FAQs thread talks about it).
• "No one will let me post exactly how things work"
• "people only care about people with permanent disabilities."
• "people are PMing me with information that is different than what most people are posting"
• etc. etc. etc

This sounds so much like the bickering that my brothers and sisters did while we were growing up that it's not funny. It makes the board an un-pleasant place to come and because of the general arguementative attitude of some posters, many posts are being taken in a negative way when there was NOTHING negative about them.
Negativity creates more negativity.

So, some reminders:

• If you come here with a chip on your shoulder looking for the negative in people, you will probably find it and YOU will be contributing to the negative views of others.
  If you assume that other people are honestly trying to help (and most are), you will find help.
  
• When reading replies, keep in mind that seeing things in writing only gives part of the message the person was trying to convey. Something that sounds 'snarky' or rude when you read it, might sound very different in person, when you also have other clues to the meaning, like tone of voice and facial expression.
  
• Remember that other people reading your message might not understand it the way that you meant it (see # 2).
  
• If you post "I plan to go to WDW in August and I have xxxxxxxx. What kind of GAC should I ask for?", no one is going to tell you what kind of GAC to ask for. They will tell you to go to Guest Relations and explain your needs.
  One reason for that answer, is that we don't know what Disney will offer. As one poster wrote (edited a little):
  

  "I have no clue what Disney will offer her based on HER condition, even if something was offered for someone with xxxxx, which may be similar to what you feel she needs, Disney may give you another, maybe better option for HER. They may suggest things like she use a Wheelchair, they may suggest a waiting area while one waits on line, they may say 'try it and see how you do first', they may offer something we are not aware of that is more geared to her needs.. "

  If you go in and are able to explain what your issues are, you will be able to get assistance. If you feel you are not getting what you need, ask to speak to a supervisor.
  
• If you post "I plan to go to WDW in August and I have xxxxxxxx. What should I do", you will get advice from
  -people who have been to WDW with xxxxxxxx and would not go again as long as they have xxxxxxxx
  -people who have not been to WDW with xxxxxxx, but have been in August and would not go again
  -people who have never been to WDW, but had xxxxxxx, and can't imagine going
  -people who have suggestions for dealing with xxxxxxx
  -people who have suggestions for dealing with xxxxxxx at WDW
  
  They are giving their opinions. If you don't like them, you don't have to follow them. Some of the people responding may know a great deal about xxxxx, but don't know anything about WDW. So if they don't tell about WDW, they are not trying to keep information away or prevent you from going - they just don't know anything.
  
  But, most are trying to help, not upset. So, take what is helpful to you and assume the other information was given with good intentions, even if you don't feel it was helpful or was what you wanted to hear.
  
• Whatever board you go on, different people will have different experiences. That doesn't mean any of them are not telling the truth.
  You will find threads on the Theme Parks Board where someone says they used Fastpasses after the 'window' time and someone else says they were told they could not do that.
  Or opposite experieces about height restrictions, tickets or being asked to show room keys for Extra Magic Hours.
  On the Resort Board, someone will post that the CM told them the limit was 4 people in one room and someone else posts a CM told them 5.
  None of that means that anyone was lying - just that they had different experiences.
  
• And one to add this morning; if you have been given information or a link that seems overwhelming or that you don't understand, it's your responsibility to let people on the thread know that. It was probably very clear to the person who wrote it but, but if you don't say anything, they won't know that, and no one can help you to clarify things.

As Cheshire Figment noted on another thread, all the Moderators on all the Boards are volunteers. We put hours into moderating the boards with no pay and sometimes a lot of grief.
We generally do it because we felt like we had something to offer and enjoyed doing it.
Even though it might seem like we are always on the boards, we do have lives outside of the DIS Boards. When people are doing things that cause the boards to take more of our time, it is taken from other parts of our lives.

And, since it's 12:50am (at least on my computer) now, I'm tired and I'm not sure I'm even making sense anymore, I'll end with
this last, final advice for all posters from Thumper's mom,
"If you don't have nothing nice to say, don't say nothing at all."

 

[Linda Bell]

As Cheshire Figment noted on another thread, all the Moderators on all the Boards are volunteers. We put hours into moderating the boards with no pay and sometimes a lot of grief.

"If you don't have nothing nice to say, don't say nothing at all."

Linda

 

[sadeeyore]

 

[RNMOM]

I appreciate your post.

 

[SueOKW]

I have something to say - so I will!

Nicely said, kiddo!

 

[madenon]

That was a hard enough day, Sue!

I know how hard it can be to log on every day and see a board get less friendly or of a less quality, especially if you put your hart and soul into it. That is what you are doing; putting hart and soul into this board. It easy to say "don't let it affect you", but it simply doesn't work that simple if you've got so much invested in a board.

Unfortunately some things and some people will never change. It's up to you to find a way to deal with that. I truely deeply hope you all find your ways in that. I'm only new here and did notice things you are mentioning. But I also noticed something else; a lot of people -not in the least place the mods- very willing to help and patient with us newbe's. If I see you on here every day, answering a lot of the same questions over and over again with never anything else but patient in your postings, I can only call you a true angle for the disABILITIES.

You help us every day, do al sorts of things for all kinds of people you don't even know, nor will ever meet. If I only look at myself, you've made my trip that greater, even before I'm there. You helped me out so much, the pre-trip fun is so much more. Because of the info you shared with me, those staying at home are a lot less worried about me travelling alone. And I'm not even one to really worry or not do anything out of fear or "might not be able". Makes you think about how much impact you could have on those who are reluctant to travel with a disability because of "what if". It's time for Sue now. If you can take the crap; great! But if you can't or need a break; please also think about yourself.

If you ask me, it's about time we started expressing our positive feelings about the work you guys do. I know there must be more out there like me who really appreciate it. If someone is not happy, you'll more than definately hear all about it, so it's about time we start telling you when we do appreciate you guys. Am I going overboard if I'm thinking about a new topic in which we support the mods and tell them what they mean to the board and it's users?

 

[maestro]

Well said Sue
I for one really appreciate all your (and the other Mods) hard work. This forum is a very valuable resource for everyone, but particularly from my point of view as we come from the UK and it is hard to find reliable information from so far away.
Could I just add that occasionally I have to do a "double take" on some replys as although we speak the same language, many laws and customs are different, and sometimes the same word can have a completely different meaning For example in the UK the word Handicap is seen as insulting.
It may be worth a glance just to see where a poster lives before assuming that they meant to be rude etc as it could well be that it is unintentional.
Thanks again Sue
Ceri x

 

[dclfun]

Well said! I'm not a moderator but I have belonged to this board for quite some time and am proud of what I've done here which is to try and help other people and to learn more from others- give and take. To the new folks, none of us here are experts or have any say whatsoever in Disney's policies, procedures or how they are administered. We don't know everything. We are just people who love WDW, want to share the things we *do* know, and try our best to help others to enjoy themselves at the parks with their special needs family member. Those who post here are dealing with a wide variety of special needs which are each very personal and unique. No "one size fits all", thus no reply may "fit all" either. Some have visited WDW many times, and some have never made their visit but are responding to questions that relate more to the special need. As Sue mentioned, if a question is responded to, the person responding may be answering from several different perspectives.

One thing about the ADA and Disney is that they are compliant and offer way more assistance and adaptations than many other vacation destinations a person could choose to visit. They do way more than they "have" to do by law and are only required to make adaptations for people who are disabled as defined by the ADA...so way more people are considered and accomodated to make their vacation a good one than is required- they truly try to treat each guest as an individual and respond to the needs we have. Nothing is perfect and it may turn out that someone's expectations cannot be met. If that is the reply a person gets, then it's reality...not that someone is lying. For myself, I'd rather know the realities of what I will be facing and the limitations rather than to think there's a GAC that will allow me to do XYZ, when XYZ is not possible. One example is the request for an alternate waiting area- there often is no alternate waiting area for an attraction- Space Mountain is one that comes to mind. Everyone must go through some sort of queue there and it's in the dark- no way to avoid it even with a Fastpass or a GAC that allows an alternate waiting area since it doesn't exist.

I know what Sue is saying and I've felt it too. If things go the way they are, then I know I'll be afraid to post anything for fear of someone taking it the wrong way when my intentions were to be helpful. Let's all keep Disney and this board a "happy place"!!! Thanks Sue!

 

[debbiemomto4]

Well said Sue!

 

[Selket]

I've been reading the disboards for a long time (7+ years I think) and I think this board is the nicest - hands down - because of Sue. I read the other forums but I don't post there as much as I post here. She does an awesome job of keeping an open mind, realizing that the same disabling condition for one person can be different than for another person, and giving great advice.

I think many times when people post here they probably have a lot of fear and/or frustration with a disabling condition of their own or a loved one (perhaps not even being able or wanting to express all of that on a post on a disney board) and it is easy to feel offended if they aren't taken seriously, etc. I appreciate Sue's efforts to make everyone feel included and helped.

 

[Kirlinale]

I needed to read this today! I agree , this is the 'Happy' place were people come to put Dinsey on there radar when oridnarly it would be impossible!!




and THANKS - that post made me feel better and I appreciate the time you and Cheshire put in here!

 

[Tissa]

I really do appreciate all the hard work you have put into this site Sue, and Cheshire as been terrific too in answering questions. I really appreciate the time and effort you put into the FAQ. Anytime someone has a question that I can not answer on another board I send them over here to read your FAQ. It really answers a lot of the standard questions that people have.

Keep up the good work!!!

 

[alizesmom]

Sue, I'm new to the board but appreciate what you are doing. It must take a lot of your time to scan the messages and add the neccessary information or to bump up an older thread. I'm sorry when people are less than kind or even more those who use your information for their own selfish reasons. Some people are like that and will never change. Please do not let them ruin the good thing you do. Karen

 

[SueM in MN]

Cheshire as been terrific too in answering questions. Keep up the good work!!!

And, I don't want to leave Cheshire Figment out of this.
He and I have had PM and phone conversations about how to sensitively handle some of the things that have come up recently.
He had been active on this board for many years before he became a moderator. He was always a kind source of good information and calmness before he was a moderator and has continued to be so since he took over as the co-host in the 'disABILITIES living room'.
If it was not for his help (especially, his help) and the many helpful people who hang out,
give of their time and energy to try to answer questions,
just come for a one time visit and
lurk on the boards, only 'de-lurking occassionally,
I would probably not still be here.

 

[kimysbug]

Well said

That you to all the monderators you have been so helpful to me & my family

Hugs
Kim

 

[Beccabunny]

I've only been posting here for a few weeks, and I want to offer my sincere apologies if I in any way added to the growing negativity in the GAC threads. When I started posting here, I found it very hard to believe people would lie, manipulate the system, or commit fraud in order to obtain the GAC or find a way to avoid the lines. Very naive of me, I know, but I guess I'm just too entrenched in my daughter's autism world and I just couldn't understand why anyone would want to fake a disability or cheat the system. And I didn't understand why certain information wasn't available. I not only advocate for my daughter but for others as well on a volunteer basis, and I tend to have trouble getting out of advocate mode. I want to see everyone who has a need get some assistance, and maybe I'm too trusting. Boy, have I ever received an education over the past few weeks! Maybe it was seeing the GAC for sale on ebay. I think that really did it for me. But seeing the kinds of threads that have been here lately had an impact too. Now I am beginning to be really afraid that Disney is going to have to make it harder to obtain a GAC, and that is going to impact those who truly need one. There are so many truly sincere people who are just trying to help their kids. I've received some PM's from some, and I feel they and others will lose out because of the abuses. And I really feel for Sue and the other moderators who are dealing with these contentious and sometimes bizarre threads. Again, I am sorry for anything I have said that was negative. I truly apprecaite the very helpful information that is available here. It bothered me to see people posting with some helpful tips, only to be told that that wasn't the kind of help that was needed. Lately I have avoided jumping in on any thread I thought was started with the purpose of being argumentative. Like Sue and many others, I want this board to be my "happy place." I am probably going to stick with things like the birthday cake thread or MNSSHP. Can't get into too many arguments there!

 

[Belle1997]

I am so glad you posted that message. I have really enjoyed being apart of this board. Though my disability is only over a year old. The many caring people who have answered my questions have been awesome.

When I saw the threads that were happening I was gettting disguested. "You lied to me" .... hit me hard. Just what the person was saying was hurtful even to people who did not post. I know when I post I may not get all my questions answered. I have never thought that people were intentionally holding information back. That sometimes people who may know the answers have not been on line or have not posted.

That is what the search is for. 95% of the time it has already been asked

Thanks for reminding us. And you are right so many of us struggle each day with a disability or a loved one with one that we need a safe place were we can get a little pixie dust and encouragement for our disney dreams.

If it was not for this board I would not have had know about the things I could do at Disney having my mobility problems. Thanks you all

 

[Database]

I'll end withthis last, final advice for all posters from Thumper's mom,
"If you don't have nothing nice to say, don't say nothing at all."

Amen!

I made the mistake of trying to lighten-up a thread once on another board. Wasn't well received and taken out of context. Result was like throwing gasoline on a fire. (Apparently I'm stupid and condone torture.) Lesson learned.

Hope your open letter wakes us up that we all LOVE Disney and just want a fun safe place to share and learn!

 

[MarieS]

I just wanted to say thanks to Sue and the other moderators for all their hard work on the DIS! I really appreciate all the helpful info--especially about the first aid stations.

 

[yorkshiregirl]

Thank you Sue for your help and advice and well-balanced mature outlook.