An open letter from SueM

SueM in MN

combining the teacups with a roller coaster
Moderator
Joined
Aug 23, 1999
Something that is a long read, but worth it....
I have a link to a trip report in my signature you might be interested in and I copied it here:
http://www.disboards.com/threads/driving-6000-miles-for-the-magic-a-miracle-trip.1427306/

It is an old report, from 2006, so some attractions are not the same any more and some don't even exist. The writer was using a power wheelchair and was ventilator dependent. She has since died, but her writing skills and overall delight in life deserve to live on, which is why I kept the link in my signature.

Even though you may not get much useful information from her trip report, you will get a lot of knowledge and enjoyment.
 

SueM in MN

combining the teacups with a roller coaster
Moderator
Joined
Aug 23, 1999
REMINDER:

FOR READERS:

Most people are generally trying to post helpful information. Some have better skills at stating things in a helpful and tactful way than others.
Some have more difficulty. The information is often helpful, but the delivery is off-putting or could be perceived as rude.
Keep in mind also that 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, with other clues to the meaning, like tone of voice and facial expression. Often, something that looks rude was actually an attempt at humor that went wrong.
So, take the information for what it's worth and ignore the delivery or report the post if you feel it needs input from a Moderator.

FOR POSTERS:
Please read over your post and think how others might interpret it before hitting the Post Reply button.
You (the general you) might have good information to share, but the way the information is delivered may make others not read it at all or not be able to see the information because of the delivery.

If you (the general you) think it might come across as rude or snarky, I can pretty much guarantee that others will think the same thing. You (general you) may be meaning something to be humorous, but it can come off MUCH differently to readers.
So, think and edit before posting if there is any question regarding whether what is being posted might be rude or negative.
 

SueM in MN

combining the teacups with a roller coaster
Moderator
Joined
Aug 23, 1999
People make choices and decisions all the time. For many people with disabilities, the 'easiest' and 'safest' choice would be to do nothing.
Not leave home. Never take chances. Never live life.

But, that's not what most people want. To take a quote from a character in Steel Magnolias,
"I would rather have 30 minutes of wonderful than a lifetime of nothing special."

Many of the people on this board are just trying to find a way to have their "30 minutes of wonderful".

This board was created to give people information so they can make informed decisions and choices.
So, that they can make the safest and best choices for themselves and their families.

Some people take the information and decide that the 'cost' of this particular wonderful is more than they are willing to 'spend'. And, they end up not going.
Others use the information to make things work for them, and choose to go, knowing there is some 'cost', but deciding that the 'choice' is worth the 'cost'.

'Choice' is the important word. It's the person/family's choice to make.
Would all of us make the same choice, given the same circumstances?

Probably not, but it's not our choice to make.
I have a Facebook friend whose daughter is on a ventilator. She has gotten mucous plugs multiple times, which clog the ventilator and stop her from being able to breathe. This makes her heart rate go down and unless they can get the mucus cleared and get her heart rate up, she will die. They just changed her advance directives to DNR, which means, one time (who knows how soon), they will not be able to bring her back and she will die.
They are at WDW right now, realizing the risks and doing what they can to mitigate the risks.
Would I choose the same?
No. Never. I am not as brave as her and her mom.

But, her child loves WDW and has a smile like the sun, so who am I to say that they can't/shouldn't go and experience the things that create that smile.

There is a link in my signature to a trip report from a family who looked at the roses in life instead of the thorns. The writer of that trip report is dead now, but I am happy to say that she was able to get many '30 minutes of wonderful' in her life.
 

ember303

Mouseketeer
Joined
Nov 20, 2011
That momma is taking her baby to enjoy disney no matter what costs. To see her happy is probably worth any risks! Good for that momma! Thanks for sharing!


People make choices and decisions all the time. For many people with disabilities, the 'easiest' and 'safest' choice would be to do nothing.
Not leave home. Never take chances. Never live life.

But, that's not what most people want. To take a quote from a character in Steel Magnolias,
"I would rather have 30 minutes of wonderful than a lifetime of nothing special."

Many of the people on this board are just trying to find a way to have their "30 minutes of wonderful".

This board was created to give people information so they can make informed decisions and choices.
So, that they can make the safest and best choices for themselves and their families.

Some people take the information and decide that the 'cost' of this particular wonderful is more than they are willing to 'spend'. And, they end up not going.
Others use the information to make things work for them, and choose to go, knowing there is some 'cost', but deciding that the 'choice' is worth the 'cost'.

'Choice' is the important word. It's the person/family's choice to make.
Would all of us make the same choice, given the same circumstances?

Probably not, but it's not our choice to make.
I have a Facebook friend whose daughter is on a ventilator. She has gotten mucous plugs multiple times, which clog the ventilator and stop her from being able to breathe. This makes her heart rate go down and unless they can get the mucus cleared and get her heart rate up, she will die. They just changed her advance directives to DNR, which means, one time (who knows how soon), they will not be able to bring her back and she will die.
They are at WDW right now, realizing the risks and doing what they can to mitigate the risks.
Would I choose the same?
No. Never. I am not as brave as her and her mom.

But, her child loves WDW and has a smile like the sun, so who am I to say that they can't/shouldn't go and experience the things that create that smile.

There is a link in my signature to a trip report from a family who looked at the roses in life instead of the thorns. The writer of that trip report is dead now, but I am happy to say that she was able to get many '30 minutes of wonderful' in her life.
 

docsoliday1

DIS Dad #834 Cubs, Dolphins fan forever
Joined
Mar 12, 2008
Well said Sue :grouphug:
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. :love:
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 :rotfl: 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

I realize this is an older thread, but very true. Culture does have a lot to do with it and that even goes for different regions of the same country. For instance, in some parts of the US, pop means soda. In the south, it's a coke whether it's actually a coke or not. ;-)

I remember studying the differences when I was going to be stationed in the UK
boot = footwear in US, trunk of a car in UK
bonnet = headwear in US, hood of a car in UK
garden = place where vegetables are grown in US, grass or shrubbery in UK
fag = derogatory term for same gender attraction in US, cigarette in UK
chips = thin sliced potatos in US, french fries in UK
tube = part of an automobile wheel in the US, subway in the UK

I know there are many more, just did these because a) I remember them and b) good sampling. (Mostly a) :tongue:
 

SueM in MN

combining the teacups with a roller coaster
Moderator
Joined
Aug 23, 1999
Food for thought from Facebook......
This came up on my Facebook feed and seems like good food for thought to Wish Merry Christmas and start the New Year.

As I was pulling into work, I was following this car. The sign in the back window says, “Learning stick sorry for any delay.”

Knowing this information, I was very patient with their slow shifting, and honestly they were doing pretty well for still learning. Then I asked myself a tough question: Would I have been just as patient if the sign hadn’t been there? I can almost definitely say no.

We don’t know what someone is going through. We don’t wear signs that illustrate our personal struggles. You don’t see signs taped to people’s shirts that say, “Going through a divorce”, or “Lost a child”, or “Feeling depressed”, or “Diagnosed with cancer”.

If we could read visually what those around us are going through we would definitely be nicer. But we shouldn’t have to see signs and have reasons to treat strangers with kindness. We should do it anyway, whether we know what is going on or not. Whether they deserve it or not.

Let’s give everyone an extra dose of patience, kindness, and love. And have a Merry Christmas.
 

MaryAnne220

Earning My Ears
Joined
Mar 13, 2009
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.
I just read this post, for the first time.
And I cried, because we know Kaylie....and her mom, dad and sister....her Aunt is my best friend. I remember that phone call, I remember arranging my life for my children so I could drive my friend home(we live in NE). I remember holding these people in my arms....and I remember the butterflies....that found us all for months after...

It's been almost 11 years....healing has come, but there are still tears....we still miss her.

I just had to comment....Keep that family in your prayers still....there is still more healing needed.
Mary Anne
 

SueM in MN

combining the teacups with a roller coaster
Moderator
Joined
Aug 23, 1999
I just read this post, for the first time.
And I cried, because we know Kaylie....and her mom, dad and sister....her Aunt is my best friend. I remember that phone call, I remember arranging my life for my children so I could drive my friend home(we live in NE). I remember holding these people in my arms....and I remember the butterflies....that found us all for months after...

It's been almost 11 years....healing has come, but there are still tears....we still miss her.

I just had to comment....Keep that family in your prayers still....there is still more healing needed.
Mary Anne
((((Hugs)))) :butterfly :butterfly
That was such a sad situation. We walked our dog past that house very often, but didn’t know the family.
We live across the woods and across a pond from them.
There were people walking all through the woods, police cars and helicopters that day. It was so sad.
The information that came out later was that the family had arranged and prepared very well to prevent her from getting out of the house and wandering off, but she somehow got around all their precautions in the few minutes the mom was busy (as I recall, in the bathroom). Very sad.
 

chaoscent

<a href="http://www.wdwinfo.com/dis-sponsor/" targ
Joined
Aug 18, 2000
Sue - just read your first post of this thread.. I was happy you are still a moderator and sharing your knowledge. I got off of the boards for a while due to a variety of medical problems and the negativity. But I am back on today planning a family trip and looking for advice from this thread. I just wanted to say thank you from the bottom of my heart for all the past support, knowledge and advice. I know I don't post thank you enough, but I send people to this forums and this one in particular a lot. Take care and thanks, Penny
 

KellyHonos

DisneyDivaxo
Joined
Feb 27, 2018
I know this is an older post, but it has aged well. The take-away message is timeless. I love my job but I also work in an environment that can be somewhat depressing at times. I think I hold Disney so close to my heart because it reminds me of simpler times where I didn't have many real concerns. Some people may not understand why I'm in my mid twenties and still visiting, but that's okay, because I know why--it's a break from reality. We are so often forced to "act our age" and "grow up". Just because fully grown adults enjoy Disney World does not mean that they don't pay their bills or take care of themselves, etc. I've always said that there's a major difference between being CHILDISH and being child-like. There is nothing wrong with being a child at heart and enjoying some carefree time when you're able to. And that's what is nice about the boards too; you can connect with people with the same interests as you and discuss things like this and other topics that other people just may not understand in your everyday life.
 

Dezign

Earning My Ears
Joined
Apr 29, 2018
We are planning a large family trip in December 2019. In our group will be 4 first timers, including children that will 7, 6 and almost 3. There are other children that will be 13 and 9 and have been before. I'm the grandma. :love: ( And chief trip planner, head cook, and bottle washer. My field of expertise: herding cats--good thing! )

I came to the disABILITIES board not because we needed advice; we do not have any challenges of the kind discussed here, but because I have been with my 13 and 7 year old DGC many times at WDW and know that over the years they have had questions about the scooters, as well as the "extra" attention those with challenges sometimes require. And although I explained as matter of factly as I could, and urged our DGC to practice understanding and patience, I know my 7 and 6 year olds will have questions (my 7 year old DGD in particular is not exactly the soul of patience) so I wanted to have a better understanding of the challenges facing our disABLED fellow park goers. I'm hoping by understanding this better myself, I can help them relate with empathy rather than impatience.

Hey. Just in general, life practiced with an attitude of gratitude is a much happier life--and huffing about having to wait while ECVs are loaded is just too sad for words-- I hear the grousing at the bus stops and inwardly cringe with embarrassment for the complainers.

And hey. Maybe there are people that take advantage and game the system. So? That's between them and God. As my little DGS says, "worry about your own back yard".

So thank you, SueM in MN and everyone else that takes the time to put this info down for us all. Bless you to everyone that comes here seeking advice and information in dealing with the logistics of a disABILITY, seen or unseen, temporary or permanent. If people are unkind, understand that not all disabilities can be seen. Some of us suffer terribly from IUHS; Ignorance and Ungrateful Heart Syndrome. It can be recognized by the symptoms: General Huffiness, Foot Stomping, Eye Rolling, a face like this :mad: in the Happiest Place on Earth, and a general air of cynical self-entitlement.

I am very glad Disney does all it can to make the parks accessible to everyone. Even, I suppose, those with IUHS. :flower1:
 

disneyseniors

DIS Veteran
Joined
Jun 2, 2014
Sue, I wanted to say a big Thank YOU for helping me in the disabilities section. Your comments were full of common sense and appreciated.
I hope you will stay on the boards and not let the negativity get to you. I think people are more upset these days with Disney in general, and it gets reflected on the boards.
I would hope that the disabilities section would not reflect that side of things.
Your presence on the boards have been an immense help to me and to others. :)
 

chaoscent

<a href="http://www.wdwinfo.com/dis-sponsor/" targ
Joined
Aug 18, 2000
Dezign - wow, you just put in eloquent words exactly how I feel about these boards and most specifically, this thread. when I first started coming on the DIS I was able to navigate the parks with no problems. At the time, I was an administrator of a school for children with challenging behavior and developmental disabilities. Ergo, I decided to check out this thread. Since that time I am now retired and use a scooter. I continue to come to this thread for updated information. I am a DVC member and normally stay at Boardwalk. I stay there so I only have to get on a bus to go to Animal Kingdom. I have only been to Downtown Disney once since it became Disney Springs, again because I hate using the bus in my scooter. I cringe and apologize to those who have to wait while I get on the bus. So your post just made me smile. I am going to the D23 event in November. I am staying at the Boardwalk because I couldn't get in BLT. I am dreading using the bus to get to the Contemporary, but I don't want to miss any of the event. Hopefully people will be as understanding as you are. Thank you for making me smile, and Sue, thank you for this site. Penny
 

bababear_50

DIS Veteran
Joined
Feb 5, 2007
Dezign - wow, you just put in eloquent words exactly how I feel about these boards and most specifically, this thread. when I first started coming on the DIS I was able to navigate the parks with no problems. At the time, I was an administrator of a school for children with challenging behavior and developmental disabilities. Ergo, I decided to check out this thread. Since that time I am now retired and use a scooter. I continue to come to this thread for updated information. I am a DVC member and normally stay at Boardwalk. I stay there so I only have to get on a bus to go to Animal Kingdom. I have only been to Downtown Disney once since it became Disney Springs, again because I hate using the bus in my scooter. I cringe and apologize to those who have to wait while I get on the bus. So your post just made me smile. I am going to the D23 event in November. I am staying at the Boardwalk because I couldn't get in BLT. I am dreading using the bus to get to the Contemporary, but I don't want to miss any of the event. Hopefully people will be as understanding as you are. Thank you for making me smile, and Sue, thank you for this site. Penny

Hi Penny
For people who don't know *Chaoscent* Penny was a moderator down on the DIS SISign forum. I know myself and many people miss you so much.
:love1: I often think about your kindness to everyone who visited the forum. :flower3:I hope you have a Magical Wonderful Holiday and am sending positive thoughts your way!
STOP apologising to people--you are teaching them patience Hon!
the-greatest-power-is-often-simple-patience-quote-1.jpg


Miss You
Hugs
Mel:flower1:
 
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chaoscent

<a href="http://www.wdwinfo.com/dis-sponsor/" targ
Joined
Aug 18, 2000
Miss you all also. I still lurk, mostly on this forum and the DISign forum. take care all.
 

HappyDisneyWife

Powered by pixie dust... and espresso ;)
Joined
Jan 5, 2020
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! :scared1:

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):

    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."

I know this post was written a very long time ago, but thank you.
 





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