I have been spending a lot of time recently contemplating my disability, my illness, and my situation. (It's amazing how much time I have now that I am out of work!)
Since I am the new moderator on this board, I figured I would both give a little more background on myself, and post my thoughts on a question I seem to be answering a lot recently...
My name is Katy and I currently live in Anaheim, CA. My MIL is a current DL cast member (she's been at DL 25 years next March), and my wife is a former cast member. I got married last October at Disney World (Sea Breeze Point is beautiful).
I have a genetic condition called Ehlers Danlos Syndrome (Hypermobility type), an undiagnosed autoimmune condition which acts like Lupus (and likely is Lupus), and a neurological/sensory condition. I use both a manual (Quickie 7) and power wheelchair (Quantum Q600) (basically I use the manual chair everywhere I can't get the powerchair to). I also have a cane, forearm (Canadian) crutches, and a rolling walker. As a child I had few health problems that impacted my life. I started using a cane at 21, crutches at 22, a manual chair at 24, and now a powerchair at 25.
I have traveled to Disney World and Disneyland in almost every season (except the truly busy weeks) since I was 5 years old. I live with a Cast Member, so when I post Disney policies, I generally check with her first - it is nice to be able to check with a good source.
You will have seen I generally post on those questions having to do with mobility and occasionally sensory problems. I am just now starting to have experience with doing Disney gluten-free, since my wife cannot have gluten.
So enough about me...
Lately I seem to have answered a lot of questions about accepting the need for a mobility aid at Disney. There is nothing wrong with those questions, and I completely understand the difficulty in facing the need for more assistance. Here are a few words of advice I have learned after three years on this board:
1. There is nothing wrong with getting a wheelchair, walker, or ECV and only using it part-time. I know a lot of people feel like they are "cheating" if they park a wheelchair or scooter and walk, as if other people are judging them. The important thing to remember is that YOU know your body best, not the random strangers. Use a wheelchair when you need it, and walk when you don't.
2. A wheelchair is a tool, not a judgment. Using one in Disney is NOT a reflection of your disease or your daily needs. Most people walk 6-10 miles a day in Disney, and a vacation is NOT like your daily life. Therefore, using a wheelchair is Disney does NOT mean you have to use one at home.
3. I hear a lot of the time how using a wheelchair is letting the disease win. And I always argue, NOT using the wheelchair is letting the disease win! If I stayed at home in bed all day because I was afraid or ashamed, if I did not go to Disney and enjoy my honeymoon, then THAT is letting the disease win!
4. A lot of doctors will urge people not to use a wheelchair, to keep walking, because that is better for the person's health. And the doctors are likely right. However, if you speak to most doctors about Disney and 6-10 miles a day, they will suggest using a wheelchair! They are giving advice for daily life, not for a commando vacation! Always follow doctors' advice, since an unneeded or improper mobility device can do more harm than good, but if you need something, then use it!
5. Most important: There is a difference between surviving your Disney vacation and enjoying it! In daily life, you will "push through" pain or discomfort, because it is important to maintain as active a life as possible. Vacation, however, is NOT the time to be in pain! There is no shame in asking for a stronger prescription for the vacation or using a wheelchair to avoid pain or distress. You want vacation to be a time you spent with family having a wonderful time. Your most vivid memory should be of your favorite ride or finally meeting Mickey Mouse, not the evening you spent in the hotel room in incredible pain while the rest of your family went out.
In this list I have used the word "wheelchair" because that is what I use. You can easily substitute "scooter," "ECV," "walker," "GAC," or whatever assistive device you use.
If you have read this far, I commend you! I did not mean to write a novel, but these are things I have been thinking of for a while.
Does anyone else have any important things to remember while accepting the need for a mobility device or other assistance?
Since I am the new moderator on this board, I figured I would both give a little more background on myself, and post my thoughts on a question I seem to be answering a lot recently...
My name is Katy and I currently live in Anaheim, CA. My MIL is a current DL cast member (she's been at DL 25 years next March), and my wife is a former cast member. I got married last October at Disney World (Sea Breeze Point is beautiful).
I have a genetic condition called Ehlers Danlos Syndrome (Hypermobility type), an undiagnosed autoimmune condition which acts like Lupus (and likely is Lupus), and a neurological/sensory condition. I use both a manual (Quickie 7) and power wheelchair (Quantum Q600) (basically I use the manual chair everywhere I can't get the powerchair to). I also have a cane, forearm (Canadian) crutches, and a rolling walker. As a child I had few health problems that impacted my life. I started using a cane at 21, crutches at 22, a manual chair at 24, and now a powerchair at 25.
I have traveled to Disney World and Disneyland in almost every season (except the truly busy weeks) since I was 5 years old. I live with a Cast Member, so when I post Disney policies, I generally check with her first - it is nice to be able to check with a good source.
You will have seen I generally post on those questions having to do with mobility and occasionally sensory problems. I am just now starting to have experience with doing Disney gluten-free, since my wife cannot have gluten.
So enough about me...
Lately I seem to have answered a lot of questions about accepting the need for a mobility aid at Disney. There is nothing wrong with those questions, and I completely understand the difficulty in facing the need for more assistance. Here are a few words of advice I have learned after three years on this board:
1. There is nothing wrong with getting a wheelchair, walker, or ECV and only using it part-time. I know a lot of people feel like they are "cheating" if they park a wheelchair or scooter and walk, as if other people are judging them. The important thing to remember is that YOU know your body best, not the random strangers. Use a wheelchair when you need it, and walk when you don't.
2. A wheelchair is a tool, not a judgment. Using one in Disney is NOT a reflection of your disease or your daily needs. Most people walk 6-10 miles a day in Disney, and a vacation is NOT like your daily life. Therefore, using a wheelchair is Disney does NOT mean you have to use one at home.
3. I hear a lot of the time how using a wheelchair is letting the disease win. And I always argue, NOT using the wheelchair is letting the disease win! If I stayed at home in bed all day because I was afraid or ashamed, if I did not go to Disney and enjoy my honeymoon, then THAT is letting the disease win!
4. A lot of doctors will urge people not to use a wheelchair, to keep walking, because that is better for the person's health. And the doctors are likely right. However, if you speak to most doctors about Disney and 6-10 miles a day, they will suggest using a wheelchair! They are giving advice for daily life, not for a commando vacation! Always follow doctors' advice, since an unneeded or improper mobility device can do more harm than good, but if you need something, then use it!
5. Most important: There is a difference between surviving your Disney vacation and enjoying it! In daily life, you will "push through" pain or discomfort, because it is important to maintain as active a life as possible. Vacation, however, is NOT the time to be in pain! There is no shame in asking for a stronger prescription for the vacation or using a wheelchair to avoid pain or distress. You want vacation to be a time you spent with family having a wonderful time. Your most vivid memory should be of your favorite ride or finally meeting Mickey Mouse, not the evening you spent in the hotel room in incredible pain while the rest of your family went out.
In this list I have used the word "wheelchair" because that is what I use. You can easily substitute "scooter," "ECV," "walker," "GAC," or whatever assistive device you use.
If you have read this far, I commend you! I did not mean to write a novel, but these are things I have been thinking of for a while.
Does anyone else have any important things to remember while accepting the need for a mobility device or other assistance?
. Maybe I will start a thread with my story, or certainly Joshua's as he is autistic, I am not personally disabled. My comments and experiences are based upon many trips to Florida and life with a special needs child.
Thanks for posting them!
But overall I realized that it wasn't that hard to drive and it sure did make my experience much easier. And the really good news is that a rental ECV is much easier to drive than the ones in the stores. So if you can do an okay job at them you will be fine.
Just what I needed to be reminded of for my upcoming trip. Thank you.
