Doing Disney with Disabilities

Thoughts from a family trip with my brother with Down Syndrome

Disneyland with our family of 5 and my brother Leif

Last month it was mid winter break from school in Seattle, and I took my brother Leif, who is 50 years old and has Down Syndrome, to Disneyland with my husband and our three children. Leif is a huge Star Wars fan - with an affinity for the Dark Side - and loves Spiderman. He had some money saved up and has enjoyed family Disney trips in the past, so I wanted to give him that experience again.

I was excited, but also nervous about tending to Leif’s needs while traveling in addition to our three children. His needs are higher than the average person with Down Syndrome that we often see portrayed in the media. His verbal skills are limited and he has OCD. Imagining how I would juggle everything required when it came to his medications, mobility, and physical care in a high-sensory environment gave me some anxiety.

At first I resisted the idea of bringing a staff person along to help. I thought about how my mom always traveled alone with the two of us, so certainly my husband and I should be able to do it, right? Shouldn’t I be able to handle bringing my own brother with us on vacation? It felt like a sign of weakness to consider bringing a dedicated caregiver along to ease the burden.

In the end, I thought about the possible complications, particularly hotel arrangements and the ratios for pairing up to go on rides, and caved and asked to have a staff person who knows Leif join us on the trip. Which brings me to the first lesson from this experience.

I am so glad I fought off my own instinct to not ask for help.

Yes, apparently I need to keep learning this one over and over. I’ve swallowed the female family caregiver cool aid for too long, internalizing the idea that it is my job to be able to take care of everyone else with a smile on my face and without the need for support.

However Leif really does require 1:1 care. Frankly, I now realize that the trip would have been so much more exhausting and difficult with out support - not just for me, but for everyone. There would have been more stress and points of tension as I tried to balance everyone’s needs and preferences.

We spent most of the days and all our meals altogether as a group of seven. However, there were many times throughout each day when we had to split up for a bit based on ride preferences, needed breaks, etc. Having a staff person along allowed me to enjoy the trip with Leif and my whole family in a way I now realize would absolutely not have been possible.

I found myself feeling so thankful that we had made the choice to bring an additional able-bodied adult, and imagining how different I would have felt had we not. Some of that joy, magic and gratitude could have easily been edged out by exhaustion, stress and frustration.

As others have pointed out in this situation and previous ones, having more support allowed me to enjoy the trip as Leif’s sister, not just his carer. We could all be a little more present in each others’ company without the full care responsibilities for Leif and three children on me and my husband alone.

We all had so much fun experiencing the Rise of the Resistance and Cars rides for the first time. Leif got to load up on Star Wars shirts and swag, and even built his own light saber! We braved the line for the Spiderman ride twice, shared churros and enjoyed Goofy’s kitchen buffet while saying hi to Goofy and Minnie.

I also empathized with my younger self for all of the challenges I faced in my family growing up.

This trip brought back memories from my childhood, and the feelings that went along with them. There were funny and also challenging moments. Leif has some interesting habits, and people stare. He can get triggered and go from happy to overwhelmed quickly, and his OCD means that if routines are interrupted it causes distress. If not handled well, he can become aggressive. He yelled several times on both flights - either joyfully singing along to movies with his headphones on, or upset because his ears hurt - and a couple other times he became agitated when overwhelmed.

Having a very disabled brother and the two of us being mostly raised by my single mom who had her own mental health challenges was not a typical or easy childhood. I had to grow up and learn to be a carer too fast, and take the backseat when it came to getting attention and care from my mom.

Every one knew our family in my small town and while we had a decent community, I always felt people thought we were weird. We definitely stood out. Leif’s verbal skills are limited but he makes a lot of noises. My mom is intense and quirky and has a temper. People were often kind, but also often stared and kids giggled. I will forever have a fierce visceral reaction to the R word.

I have no shame or discomfort about any of it now, but what stood out on this trip is the compassion I felt for my younger self. I never felt like a normal kid, I was protective and defensive of my brother, but that doesn’t mean that it wasn’t hard or that the stares and insults didn’t sting. I didn’t get to just be a kid; I was expected to be helpful or I was trying to hide from unwanted attention.

I was reminded of the time we were on a flight with my mom as adolescents, and Leif stuck a gum wrapper so far into his ear that a doctor had to be called during the flight to help extract it. It’s a funny story now, but at the time it was just another all-too-common moment of stress and drama. At a point on our trip a few weeks ago, when he became angry and yelled after a long, overstimulating day, I was reminded of my teenage years when Leif became violent and hit my mother. This was the “normal” stuff of my childhood. A space was opened for me to fully acknowledge that my upbringing was tough and allowed me to do some healing around it.

The Most Magical Place on Earth has typical families’ needs dialed in to make things fairly easy, but it could do better when it comes to supporting people with a wide range of disabilities.

I looked into what accommodations were available and that we might need before we left. Physical accessibility and ADA accommodations are available at Disney, including ride transfer devices for wheelchairs. Leif did an incredible job walking throughout the two days, even though he lives with back pain and scoliosis. Leif moves slowly, but even after taking a fall after missing a step, he answered with a hard no on being pushed in a wheelchair.

I also looked into the option for “invisible” disabilities. It turns out the DAS program has been quite the subject of controversy in recent years. Prior to changes made in 2024, disabled guests who needed to skip the line could do so. Apparently there was rampant abuse of this program, including paid “guides” that helped people skip lines using a fake DAS qualification.

Rather than dealing directly with the abuse, Disney significantly narrowed the criteria for qualification to those with a verified developmental disability, such as autism or similar, for whom waiting in line would negatively impact their own and other guests’ experience. In addition to the narrowed scope, there are several hoops to jump through to take advantage of the program. You must first have a virtual meeting with Disney cast member to explain and prove your disability. Then, for each ride you must actually go and join the queue, flag down a cast member, and get a return time equivalent to the length of the line, and you can only hold one at a time. For many, including me, this sounded like more hassle than it is worth.

And sure enough, a quick google search unearthed story upon story of being denied qualification (even with diagnoses), and even humiliating experiences of being questioned by cast members for each and every ride, and the difficulty of having to go all the way to a ride and then come back two hours later. Many caregivers found it to be unhelpful at best. Disney’s response is to push people to purchase lightening lane passes, which is what we did, but disability advocates rightly point out that accessibility should not cost a premium.

Again I was reminded on this trip that as caregivers, we too need all the support available to us. Whether that is another set of hands or truly inclusive accommodations in public spaces. For me, having the help of someone to accompany Leif and being able to purchase lightening lane passes made all the difference in our experience. And we are privileged to have access to those things. Others should be able to have the same opportunities.

Overall, it was a wonderful family trip. It was heartwarming and healing for me. I loved seeing my kids continue to figure out how to interact with their uncle Leif, which isn’t particularly easy. I saw them get excited to do the things that they knew he would enjoy, and it warmed my heart when they said they missed him when we got home. Most of all, I am proud to see them learning to be accepting, compassionate and loving humans at a time of such division.

Do you have an experience with Disability accommodations at Disney or other public spaces? What are other accommodations that are helpful to you but not always available? I’d love to hear your experiences and ideas.