One summer morning.
I am a 5-year-old boy.
Today it’s hot. Mom has been in a weirdly good mood since morning. Mom and dad seem to be having a fun conversation.
Mom gives me a bath, and today she dresses me in cool clothes. She also looks fancier than usual. Dad is also dressed up. They both seem restless, and dad says, “We’re going out today.”
My 3-year-old sister has been in a good mood since the morning and is bouncing around. She’s also wearing a cute dress and laughing cheerfully.
Dad puts me in the car, and we’re off! I watch as the sky whizzes past. The blue sky is so pretty.
After about 30 minutes, we’re here! Dad picks me up out of the car.
Hey, my friend is here! “Hello,” says my friend’s mom. I respond with my usual “hello” by squinting my eyes and moving my hand a little in greeting.
What’s that? I can hear some fun music.
Hey, I just noticed — My friend is wearing the same cool shirt as me! I turn to my friend, and my mom takes my hand and says her usual greetings.
My sister says “hello!” to absolutely everyone. Something about everyone being so cheerful makes me happy too.
The place me and my friend’s family had all arrived at was Tokyo Disneyland.
It seems my mom had invited them because they had never been before.
For our family, Disneyland was so close yet so distant. The first time we came we had been a bit nervous, so another friend’s family who was more used to it came with us. My mom, knowing that my friend’s mom wanted to visit Disneyland, enthusiastically decided she would be the one to bring her!
Disneyland with my close friend’s family. What could be more fun!
Mom and dad had made sure we got there in time for the Electrical Parade so that we could all enjoy the sounds, lights, and fun atmosphere together.
Oh! Here’s the parade viewing area! We can all watch it together!
Huh??? Mom looks worried… What happened?
Huh? Dad and my sister have disappeared.
What’s happening? I can’t see mom either. Where did mom go?
I can hear her voice, but I can’t see her.
Wait, the parade has started. The fun music and twinkling lights are so pretty.
But dad isn’t here. And I can hear mom’s voice but I can’t see her anywhere.
Dad, mom, where are you?
Ah, the parade’s over.
I’ve finally found mom and dad! OK, let’s head home and go to sleep.
But mom, dad, and my little sister seem kind of sad.
When dad and mom are sad, I’m sad too.
It’s now time for bed.
This little boy’s family, and his friend’s family, all ended up having to watch the parade separately. Why is that?
It’s not as though they wanted to watch it separately. They had looked forward to this day and had dreamed about watching the parade together.
The reason is that these two little boys were in wheelchairs.
This is a true story that happened in Tokyo Disneyland. I’m the little boy’s mother, Aki.
Due to accidents at birth, both of our sons were diagnosed with encephalopathy, which decreases blood flow to the brain. They can’t move, walk, talk, and laugh the way they want to. They breathe through a hole in their throats with tracheostomy tubes. Our friend wears a respirator at all times.
The two of them use big wheelchairs that have to be pushed by someone.
My son wears a machine on his leg that measures his oxygen saturation level. He cannot swallow his saliva, so when he is having difficulty, he lets us know through the machine. When this happens, someone has to aspirate the saliva with a suctioning device. The numbers on this machine measuring oxygen saturation are my son’s voice. We have to judge by the look of his face and the numbers on the machine whether he’s having difficulty with his saliva, whether he’s hot or cold, whether he’s in pain, or anything else.
I don’t know for sure whether our son can see with his eyes and hear with his ears; doctors say that he can’t. But, when he saw fireworks, he was scared and cried. When he saw lights at an illumination, he was restless in enjoyment. For us, his family, we think his eyes can see and his ears can hear. That in itself is a miracle.
We have spent years going above and beyond with childcare, and spent countless days giving 24-hour medical care. I thought, “One day, I just want to go to a dreamworld.”
In Japan, Disneyland is called “dreamworld” (yume no kuni). You can forget the problems of daily life, and lose yourself in the fantasy world of Disney, making you feel like you’re in a dream.
It’s a world where anyone can live their dreams. A world where everyone is happy.
There are some wheelchair-accessible attractions, but due to safety issues, in reality, that number is very limited. Even though we can’t ride the same rides as everyone else, we pay a lot of money, and it is true happiness to be in that same atmosphere with everyone.
That is why the parade is the one and only time that families with disabilities don’t feel like they are losing out, and can enjoy the event together, just like everyone else.
We called Disneyland’s information desk in advance to see if we could watch the parade with our family, and as instructed, we went to the wheelchair priority area. We had come to see the Electrical Parade, but when we arrived, we were told the wheelchair user must sit in the front, and only one caregiver could be with them, standing behind them. Other family members had to watch from a separate area.
To be able to give our sons medical care for their breathing challenges, we have to stand to their side. I told the staff that, and they said, “You can go to his side when you need to do that, but please don’t stand. Other than during that time, please sit behind him.” For us, this was a life-threatening situation, because our sons’ wheelchairs are not like most wheelchairs. They are large wheelchairs that cover them from head to toe. Sitting directly behind my son, I wouldn’t be able to see his face or the oxygen monitor on his leg. What if his condition suddenly changes while I follow Disneyland’s instructions? Would Disneyland do something to help? For us, their medical caregivers who watch them 24/7 for any changes, not being able to see their faces brought with it nothing but anxiety and fear.
Think about it, they’re little 4- and 5-year-olds. Even if they have disabilities and can’t move around, even if they express their emotions differently from other children, their hearts are the same as children without disabilities.They feel joy and sadness, they get lonely, they get excited and feel other emotions just like anyone else. When their mother sits behind them, they can’t physically turn their heads around to see us. They can’t see their mom. It would make any child upset and anxious to not be able to see their parents for an hour, to not see their loving mom, no matter how much fun they have at the parade. In that case, is such a small child really having fun at the parade? If it were a child without disabilities, they would be crying out “Where’s mom?” Just because our sons cannot cry in the same way, does that make it acceptable for us to sit behind them? No. Did my son just look forward and enjoy watching the parade alone with no family around him? It hurts me to think that in my wish to make him happy, I may have made him feel lonely.
And what about his sister?
His sister always says, “We’re all together. Dad, mom, brother, me, the dog, our family of five!” She loves her family, and the five of us go out, sleep, bathe, and have fun all together.
She’s a 3-year-old girl who loves Disneyland, watches Disney movies all day, wants to be a princess, and always plays with her Mickey and Minnie stuffed toys.
For her, the Electric Parade sparkles brighter than it could for any adult. She loves Disney and wanted to see the parade together as a family.
When she found out she had to be separated from her brother and mama, she cried and screamed. Even though we were sitting far away from each other, I still could hear her cries. She wanted to be with her family. This time, it was my little daughter’s heart that I broke.
Next, let’s look at this from a sustainability perspective and Disney’s philosophy.
Nowadays, the major focus worldwide is on creating a society where minorities are not left behind. Inclusive education is also becoming a popular topic of discussion. However, Japan is still not a country of diversity, and education is far from being inclusive.
I feel that is one of the reasons for what happened here. This issue of “wheelchair users not being able to watch the show together” is not limited to Disneyland, but is also common in Japan when watching sports, plays, aquarium shows, and more. In Japan, it’s normal for only one caregiver to be allowed to stay in the wheelchair area, and the rest of the family must sit separately. Although the facilities may seem “accessible” because they have wheelchair areas, wheelchair users are, in fact, not allowed to share the excitement, surprise, and happiness of the moment with their family and friends.
This is something that I also realized through this event: “Just because there is a priority seating area doesn’t mean that it’s accessible.” By simply using the dedicated priority area, you can’t live out your hopes of watching the show together with the people you came with. Please take a moment to think about whether this is really something that “just can’t be helped.”
There seems to be a prevailing feeling of “We’ve given you a special seat, so you should accept it.” And most people in that situation do accept it. But I strongly believe that this system of segregation of people with disabilities is what subconsciously instills the idea that “separating people with disabilities can’t be helped.” My children are exposed to this mind control. For my son I think, “Even with your disabilities, I don’t want you to give up on life. I want you to live a strong and happy life.” But by accepting the current status quo, it’s the same as teaching him “You have disabilities, so please give up on the idea of having fun together. It can’t be helped, so just accept it.” This directly contradicts my educational ideals.
Disneyland stands at the frontline of Japan’s hospitality. There are a lot of people who follow and learn from Disney’s example, but, regrettably, I believe that Disney is going against what the world is doing. I believe that Disney definitely has it in them to realize this. It’s important that they embrace diversity and lead Japan towards it as well.
At the root of Disney’s concept is “family entertainment.”
Do you think that has been accomplished here?
Oriental Land (OLC Group), the company in charge, lists out “The Five Keys,” a set of behavioral standards that the staff and cast must work by to achieve their promise of “We create happiness.”
One of those Five Keys is “Inclusion.” There, it says “Welcoming and respecting different viewpoints and people. Placed at the heart of all the Keys, it is deeply connected to any of the other Four Keys.”
Did the rules and warnings we received follow this concept from the OLC Group?
They must feel like their job is done after creating their wheelchair area.
I’m dreaming of a Dreamworld where other wheelchair users are able to share their happiness in the same way as others do in Disneyland. This time it was our family, but if we were a group of adults, what would have happened? Would we have had to watch everything completely separately?
What if a person in a wheelchair entered the park knowing that it would be the last Disneyland trip of their life? It would ruin the memories of their last visit to Disneyland.
We did not just want to see the parade; We wanted to share the excitement and joy, see our children’s happy and excited faces, and spend time together hand in hand.
The memory from our friend’s first family visit to Disneyland ended up being “the family was separated.” In this supposed dreamworld, we were unable to make any dreams come true. They can never have their first experience again.
And this kind of unhappiness is not specific to just our families. As of right now, many people have expressed similar feelings to me. I truly hope that what has happened here will reach the ears of Oriental Land, the company in charge.
From the bottom of my heart, I hope that it can become a dreamworld for everyone.
Here’s to a world where everyone can be happy.
After receiving a setter from Aki explaining the situation and the family’s disappointment, she received a call from a staff member at Disney saying that they were sorry to hear of her experience.
Though they can’t provide specific proposals right now, they promised to discuss within the parade department how to:
- Allow families (or groups) to watch the parade together.
- Ensure medical care and other necessary assistance can be provided during the parade.
They also mentioned they would like to meet Aki directly the next time their family visits Disney.