The earnest voice of his Tumblr blog, Aaronverse, caught the attention of Tumblr's 27-year-old chief executive, David Karp. In June, Mr. Karp met with the young blogger at the company's office in the Flatiron district for an hour and a half, to talk about his blog and his life with cerebral palsy.
As the meeting drew to a close, Mr. Karp clicked through Aaron's Tumblr site and asked, "Do you like public speaking?"
Aaron answered, "No, not really." At school, being on stage had been humiliating for him. "One time, during a class dance performance at school, we went over, 'Make sure, at the end of the dance, Aaron gets wheeled with you guys offstage.' The teacher went over that again and again. But the dance performance ended. No one wheeled me off. I got left on stage," he said.
Mr. Karp said he was very sorry to hear that. He then invited the boy to address his entire staff, on Tuesday. Despite his past embarrassment, Aaron thanked him and said yes. Mr. Karp did not respond to a request for an interview and a spokeswoman did not provide any information regarding how and why he had been drawn to Aaron's blog.
Aaron's family lives in subsidized housing in the Bronx, but their relative poverty is a recent development. "I was born 12 years ago, a premature 7-month baby on the beautiful island of Antigua. I was so tiny, that my parents had to cut newborn pampers in half just to fit me," he wrote in an email. "Wow, I was an ant."
In Antigua, his father was a customs officer and his mother worked for a utility company. When Aaron was a toddler, his cerebral palsy emerged. "His left side was already folded in. His neck was down to his left shoulder and his leg was pulled in," said Lydia Philip, his mother.
Antigua provided only limited care for children with cerebral palsy. When Aaron was 3, the family decided to seek more extensive medical care for him and so split up, with he and his mother emigrating to New York and leaving behind his father and healthy little brother, Aren. But after Aaron's mother used up her six-month leave of absence from work, she returned to Antigua, switching places with Aaron's father, Petrone Philip.
Aaron and his father moved into a homeless shelter in Manhattan in 2010, where they lived until they were able to move to their Bronx home last year. Aren then joined his father and brother in the new apartment. His father works in a school cafeteria and recently earned his American citizenship.
"My family are like a group of candles lighting a room. There are only three candles in the room, which light up the room partially," Aaron said. "In order to fully illuminate the room, we need a fourth candle. That fourth candle is my mother."
Despite his father's diminished income, Aaron has been able to get the treatment he needs: A double-hip surgery was paid for by state-subsidized insurance, and at his school, Public School 333, he is assisted by a paraprofessional and an occupational therapist, Debra Fisher, who has been working with him for the last seven years.
Ms. Fisher first met the boy as a kindergartner. On their first excursion out of the school, she escorted him as he rode in his electric wheelchair along a sidewalk on the Upper West Side. He blurted out, "Refinance. Bikini Bootcamp." She feared that in addition to his physical disability, he might be mentally disabled. "Easy money, easy money," his deadpanned, looking straight ahead. It took her a minute to understand: he was reading the surrounding shop signs aloud. Though just starting kindergarten, he had already taught himself to read on his Leapster, an educational tablet.
I first met Aaron earlier this year, on his final day of sixth grade. It was a clear June day. We were in the Blue Sky Room, a therapy space in his school where he develops his motor skills three times a week. It resembles a compact gymnasium crowded with thick mats, pull up rings, and big inflatable balls. Ms. Fisher works with him on grasping, raking, and releasing small objects, training his muscles to function so that he can hold a pencil to write and draw like other students.
He types with just one finger, swooshing it from key to key to compose Aaronverse, which mixes childish enthusiasm with candor and the metaphors he is constantly inventing. "When I read, the biggest moment pops up like a hologram in the sky, and I have a locker in my head, and I lock that image up," he said. As he spoke, his small elbow got trapped in the space between his lap desk and his wheelchair; Ms. Fisher removed it. "When I'm done, I just want to lie there for days to recover. I'm exhausted. And then my brain has to return to my body," he said.
In the living room of Aaron's home, Skype, the Internet videoconferencing service, is perpetually on, revealing the family's home in Antigua with the ramps and widened doors that were built to accommodate Aaron's wheelchair. "On the western side of our house there is a beautiful view of the Caribbean Sea," Aaron's father said, of the house he hasn't entered in seven years. "It's a small inlet with a mangrove swamp. The most beautiful."
His mother walks through the home, on-screen and off. She steps out of view to prepare a meal and do the laundry. She comes back into the picture to help her two sons with their homework. For Aaron, the Skype connection is not enough. "I wish that I was sleeping peacefully,'' he wrote in an email. "I hear my bedroom window collapse into crystals. I look around abruptly, until I see feathers on the ground. Then, I look up. It's a lady with wings. It's not just a lady. It's my mother. She flew from Antigua. She shows me her visa. I automatically know that the pain and suffering is gone."
On Monday, Aaron, now a seventh grader at Public School 333, was back in school, preparing his remarks on life with cerebral palsy and creating art about disability, despite his disability, for the coders and designers of the website he shares his stories on.
http://cityroom.blogs.nytimes.com/2013/10/28/a-boys-life-with-cerebral-palsy-revealed-in-tumblr-aaronverse/?src=recg
Aaronverse:
Hi there! I'm Aaron, and I have a disability called cerebral palsy. In this blog, I'm writing about my life due to my disability, and how it makes things different for me. I also post drawings, Frederator things, Pusheen stuff, Adventure Time and anything interesting to me.
THIS ABILITY IS NOT A DISABILITY.
http://aaronverse.tumblr.com
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Sunday, November 3, 2013
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