Editor’s Note: This letter was addressed to Disney Cruise Lines for their poor and disappointing customer care of a mother and her child with Type 1 diabetes. After Beyond Type 1 asked if the T1D community could show their support of the family by tweeting and/or emailing Disney Cruise Lines, tens of thousands rallied on social media. This advocacy effort has paid off, and in response to the T1D’s community outrage, the Disney Cruise Lines Company responded with an apology to the family and a vow to correct their conduct in the Special Services department. You can sign up for our newsletter News Drop to receive more information on T1D advocacy campaigns like this one.
Hello Disney Cruise Line,
My son and I just came back from a cruise on the Disney Wonder. I wanted to notify you of some issues we had on the cruise with disability accommodation for Type 1 diabetes. Type 1 diabetes is a serious autoimmune disease, which is protected under the Americans with Disabilities Act.
Before we cruised, I spoke with the Special Needs Coordinator to make sure I had everything in order. We discussed the kid’s clubs and she stated that since my son is 12 years old and able to treat himself independently, that he could attend the kid’s clubs without any problem, and advised for us to both carry the Wave phones in case of emergency.
She put in a request for a sharps container for the room, we discussed medical center on the ship, and I inquired about bringing snacks and/or low blood sugar supplies. I informed her that my son carries packs of Starburst and fun-size Skittles for low blood sugar treatment. These are most effective for him, lightweight, and the packs are waterproof so he can keep them near the pool while swimming. She informed me that this would be fine, but to make sure they are in original packaging (not ziplock baggies or other containers) for Customs purposes.
On the first day of the cruise (March 30, 2017) we attended the open houses for Edge and Oceaneer’s Clubs. My son was very excited. He spent some time in Edge the first night of the cruise and had a great time.
The second day of the cruise (March 31, 2017) we looked at the daily schedule of events and he was very excited to see that they were making “space goo” in the Oceaneer’s Club. He had been wanting to make slime at home for months and we hadn’t been able to, so this was top of his list for the day. He headed down to the Oceaneer’s Club when it was time and I went to Senses for a scheduled massage. He called me about 10 minutes later to let me know that he was going to go to Edge instead. The conversation was as follows:
Son: Hey, I just wanted to let you know I’m going to Edge instead.
Me: You don’t want to make the goo anymore?
Son: No, I’m not allowed.
Me: Why not?
Son: They said I can’t have Skittles in my bag because someone might have a food allergy. I told them I needed them for low blood sugar and they said I could put them back in the room and if I had a low blood sugar, I could go to the room and get them.
Me: Did you tell them that if you are having a low blood sugar, you won’t physically be able to walk to the room?
Son: Yes, they said if I changed my mind I could come back later. It was really embarrassing. Just forget it, I’ll go to Edge.
I thought that there must be some kind of miscommunication so I called the Oceaneer’s Club on the Wave phone. The woman I spoke with said that there was no misunderstanding. My son couldn’t have Skittles in the club because of possible food allergies. I explained to her why he would need them, and I asked if they could keep his supply bag which had sealed Skittles at the check-in counter and if he needed to treat a low, he could go in the hallway to eat them. This would allow his medical condition to be accommodated and also avoid any food allergy issues inside the club. She said, no. I asked her what he was supposed to do if he had a low blood sugar while he was there, and she did not have an answer and told me a manager would call me.
A few minutes later, the manager called. I explained why it was absolutely medically necessary that he be able to treat a low blood sugar without being expected to walk back to his room. A low blood sugar for a Type 1 diabetic is an urgent and life-threatening situation. Finally, she agreed that this was necessary and said that if he had a low blood sugar, they would give him apple juice. I called my son to explain to him the solution and he said he just didn’t want to go to the Oceaneer’s Club again. He was very upset and discouraged.
I went to get him from Edge and we went back to the room to talk about what happened. He had tears in his eyes as he explained that he was already wearing the lab coat and excited to make goo when they said he had to leave. He said he didn’t want to argue with a grown up, but he explained that he had to have his supply bag with him. When they told him he had to leave, he said he was so embarrassed and felt like they were really mean. He said, “I understand food allergies are serious but why don’t they understand that Type 1 diabetes is serious, too? I’m just going to go to Edge, I don’t want to go back to that one. I hate that I always have to be left out.”
After seeing how upset he was, I went to Guest Services to explain what had happened and see if they could speak to the Cast in the Oceaneer’s Club to avoid this in the future for other children with disabilities. The woman I spoke to was very understanding and said she would talk to her manager and he would follow up with us. She took our Stateroom Number.
Nobody ever followed up.
The person I spoke with at Special Needs prior to the cruise should have let me know that Skittles would NOT be allowed in the Kids Clubs. Since that didn’t happen, the Cast Members in the Oceaneer’s Club should have been trained to accommodate this disability by letting my son know that he could not have Skittles, but that he could stay and participate and apple juice would be provided if he had a low blood sugar that needed treatment. Instead, they turned him away and made him feel embarrassed and excluded.
The second instance I would like to bring to your attention occurred on the last night of our cruise, April 1, 2017. We were going back to our room after the evening show, and our room attendant was in the hallway. He greeted us and said, “Oh by the way, I saw that you have a diabetic in your room so I haven’t left any chocolates.”
I was unsure what he was talking about and when we went in the room, my son said, “Oh, all the kids kept talking about having chocolate on their pillows and I wondered why we didn’t get any. First, the Kids Clubs, and then this. I hate always having to be left out.”
I don’t know why a room attendant would take it upon himself to exclude our room from special activities. I understand that a piece of chocolate may not sound like a big deal, but to a 12-year-old who had already felt excluded and different from the treatment of the Oceaneer Cast, this was very upsetting.
Many people confuse Type 1 and Type 2 diabetes. Type 1 is a very serious autoimmune disease where the pancreas does not make insulin. There is no cure. And my son will never grow out of this. He has to wear an insulin pump 24/7 to administer insulin and a glucose monitor to alert him to high and low blood sugars. Untreated high and low blood sugars can result in death. Type 1 diabetes does not mean he cannot have a piece of chocolate. If anyone had bothered to speak with me about this, I could have let them know and my son could have been treated like all the other children on the ship.
- Special Needs Coordinator should not have misinformed me that Skittles would be an allowed treatment of low blood sugar.
- Oceaneer’s Cast should have made every effort to not exclude a child due to their medical condition. It should not have taken multiple phone calls to have them finally offer to let him treat his low blood sugar with apple juice.
- Guest Services should not tell a guest that they will have someone follow up if they are not planning to do so.
- Room attendant should not have excluded my child from any special room activities, and if for some reason he felt this was necessary, he should have spoken to me about it FIRST (not on the last night of the cruise) and NOT within earshot of my child.
This was our first cruise. We specifically chose a Disney cruise instead of a competitor because we felt that they would be most accommodating to special needs and medical conditions. I am very sad to have learned this wasn’t the case. When dealing with a child with a disability, all efforts should be made to include them and make them feel as special as the other children on board.
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