Hi! This is Madeline. Here to tell you about what sailing with a 170 Ib immobile man is like.
Roxy and Madeline went to a magical place last summer. A place where people cared for one another. A place where you slept in tree houses and played in the Vermont sun. A place where you choked with laughter at almost every meal. A place where you wake up every day sleep deprived but too excited to stay in bed a moment longer. A place where it was cool to have a disability and lame to not have one. This place is called Zeno Mountain Farm.
If you'd like to know more about Zeno, I suggest you watch Becoming Bulletproof. This is a documentary made about the making of Zeno's movie Bulletproof. In it, you will meet the founders of Zeno Mountain Farm and get to know a few of it's members. Zeno is the best cult ever. You enter their secret hide out in the mountains of Vermont and your world is instantly turned upside down. Madeline wiped a grown man's ass within minutes of her arrival to Zeno. Roxy pushed someone's wheelchair with her own. "Liability", "disability", "work", "care taker", "money", "payment", "rules". All of these words have been removed from the Zeno vocabulary.
If you watch the documentary you will get to know the story of AJ, a 33 year old Zeno man who has Cerebral Palsy. AJ has been going to "camp" at Zeno Mountain Farm for some years now. He has found the salvation of his artistic soul right there at Zeno and credits them for changing his life. After the documentary was released, AJ began to get a lot of attention. Conferences started asking him to show up and give speeches, screenings flew him out to partake in Q&As, and despite his physical and financial limitations, AJ has been traveling all over the world to attend every bit of life he can.
An organization called Buddy Cruise asked AJ to come on board for the week to be their ambassador speaker. Buddy Cruise was founded by an unstoppable couple from Florida who thought it was a good idea to bring a bunch of people of different abilities on board a cruise ship for a week once a year. And they thought right.
AJ emailed me a month ago asking if I was interested in joining him on the cruise and facilitating his care. And if I was, if I knew of another person who could come along to help out. I remembered AJ from camp. He was kind, funny, extremely social, and irresistibly intelligent. I checked my calendar and when I saw that I was free, I called my girlfriend, Belki, and pitched the idea to her. The conversation went something like this:
Me: "hey! Do you want to go on a cruise ship?"
Belki: "you said you hate cruises..."
Me: "I do but AJ said he's gonna be a big star on this ship but could use some help with his care"
Belki: "what does that entail?"
Me: "well I'd imagine it involves getting him dressed, getting him in and out of bed, bathing, pushing him around the ship, eating, brushing his teeth, going to the bathroom, and anything else that one would need movement to accomplish"
Belki: "im in".
Belki is a good one.
After a few emails with AJ and his mom, the trip was finalized and we were off to meet AJ in Fort Lauderdale, Florida. We got on the boat and the madness began.
AJ is a big dude. And when you lift him, he's dead weight. A lot of the attempts to lift ended in cackling fits. Some of them ended dangerously close to the floor. At the end of the cruise we were so proud to call his mother and proclaim "he's not dead!"
On Buddy Cruise, the caretakers were mostly family members with loads of experience. Belki and I were nubes and it showed. We just weren't able to keep up with all of the superhero moms. We'd show up late to conferences and shows and AJ's beard would be covered in food. We'd bump him over cracks in the floor and walk him right into corridor walls. It was shameful. But AJ had a great sense of humor about it and chose his battles wisely.
I want to dedicate a moment to these superhero moms. Their unconditional love for their children was life-changing to witness. One mom in particular. I won't use her real name but let's call her Charlotte and let's call her baby girl Sydney. Sydney has just turned 18. She had a massive stroke in the womb and most of her brain became useless. Some call this nearly "brain dead", though that term was never used. She lies in her wheelchair with her mouth gaped wide, eyes unfocused, with a tube in her throat. Her hands are naturally curved up in a scoop shape, they look like a baby's hands. Soft, pale, never used.
Charlotte pushed her baby around, bringing her to all of the conferences, shows, and social events the ship had to offer. She introduces her daughter as "the beautiful redhead in the chair" as she gestures over lovingly. I had the privilege of spending time with this pair. The caretakers who have people who are completely physically dependent on them usually get bunched together in the back of the theatre's wheelchair section, the edges of the dining room tables, the front of the conference rooms, on line for the family sized bathrooms, and in accessible taxis at the ports where the ship would stop. Charlotte would sit there, looking lovingly onto her daughter, stroking her hair and adjusting her posture. She said something completely remarkable. "She's my baby. I wouldn't have it any other way".
Charlotte is a very personable, intelligent, even keeled person. She works as a highly ranked scientist and as a teacher. At home she has nurses come to take care of her daughter during the day while she works. Then every other moment outside of work, she is looking after little Sydney. Charlotte gives Sydney everything a child could ever want. She has her own bedroom, private schooling, art therapy, and the constant medical attention she needs. The love of a mother can be the most powerful force on this planet.
Buddy Cruise throws the most epic dance parties. To put it bluntly, kids with down syndrome will dance circles around any chump on the floor. They seem to be the first to strip a piece of clothing, start a Congo line, and hop up on the stage to grab the mic from the MC. There is something magical that happens when a group of people with different abilities come together. They raise the "be yourself" bar and they never discriminate against anyone in the room. One of the finer moments I witnessed was Mia, a teenager who loves to party, taking Sydney by the hand at 80's night and dancing with her for at least 3 songs. No one is more worthy than another. We aren't people with different abilities. We are all just potential life long friends.
But it wasn't all honky dory. The ship culture was a little less community oriented than one would find in the magical lands of Zeno Mountain Farm. Every staff member on the cruise was terrified of touching anyone with a disability. Sounds strange, right? Well, America's culture of law suits has created a culture of fear and stifled our instincts to help one another. At one point, our room attendant nearly cried when we asked him yet again to help us lift AJ. He wanted to be of service, but also was sure that if anyone found out he touched AJ, he would lose his job. Another time we asked a passenger to help and he immediately said yes. Then an uninformed employee at the spa overheard the conversation and recommended the man to refuse to help. She told him it could get him into trouble and when I tried to explain that he is as entitled to help as much as Belki and I are, he said he will listen to the staff and deny our request.
I understand there are liability issues. I also understand that I hate that word when it comes to assisting your fellow man in a moment of need. The man we asked to be on the lifting squad was not an employee. He was not on the clock for any major company. He was just an able bodied being who ignored his natural pull to be of service because a misinformed employee gave him paranoid, poor direction.
The one suggestion I would make for Buddy Cruise is to create a more united culture among the "buddies" and the "caretakers". There seemed to have been a line dividing us. Buddies were meant to have fun and caretakers were meant to facilitate that.
Unfortunately, several times when we asked someone in the Buddy Cruise group for assistance, we heard something along the lines of "that's your job". We knew from the start that this trip was for AJ and we were happy to make it possible for him. What we didn't know is that we would be seen as "caretakers" instead of helping friends. The founders and leaders of the group did help us. But they were extremely busy so it was hard to track them down. Meanwhile, there were families of 15 in the group tagging along with one differently abled member. Instead of making it an "every woman for herself" experience, why not coordinate with the entire group and see who has time to come check in with the people who have larger, more demanding responsibilities? Perhaps a list of volunteers' room numbers that we can call on in moments of need. And instead of asking the buddies 10 times a day if they were having fun, why not check in with the caregivers? After all, the air mask must be put on yourself before you help someone else with theirs. No one asked us if our air masks were secured.
My final warning is that cruises are more wheels friendly than they are New Yorker female friendly. We received comments from people inside and outside of the buddy cruise that made our insides mimic feelings of sea sickness. We were laughed at as the "harem" who pushes AJ around. We were called "hot", "smokin'", and gawked at by various mansplainers. We were told that our PDA (kissing on a cruise) is causing a disturbance to several mothers among the buddy cruise crowd. And at one point, our relationship was mocked and the word "faggot" was used in a "playful" manner. All in all, the feminists in us screamed out loud but no one heard.
Every organization is entitled to their own artistry. Buddy Cruise is an exceptional organization and I am happy to say, I think every single buddy had the time of their lives on that ship. However, I missed the time when I didn't use the word "caretaker". We are a team. As they said in our 10 hour stop in Jamaica, "we are all one love". And to enjoy this aching pun, we are all in the same boat. No matter what your abilities are or aren't, you matter and you are important.
AJ's Beauty Salon