People with Disabilities Speak Up at “Our Stories: FREE’s Disability Awareness Celebration”
Shouts of “You got this,” “Miracle Boy,” and “Go, Angelo!” echoed through the room at Family Residences and Essential Enterprises (FREE)’s Old Bethpage headquarters as Angelo walked up to the podium.
Dressed in a blue baseball cap, blue sweatshirt and black pants, the survivor of traumatic brain injury (TBI) read an emotional story he wrote about his life as he stood at a podium with the word FREE and its motto, “Reach high, achieve more,” on it, in front of about 50 people.
“I was confused and very lost,” Angelo said. “I had two needles in my right arm, one needle in my left arm, a trachea in my throat and a catheter. My mother came over and held my hand. I felt like a baby all over.”
Angelo spoke at FREE’s March 23 event, “Our Stories: Disability and TBI Awareness Month Celebration.”
He continued to recount undergoing a life-saving surgery after his mother signed papers allowing the operation, going into a coma, and waking three weeks later in another hospital.
“TBI doesn’t define who I am,” Angelo said. “The only thing that defines me is A, N, G, E, L, O. That’s my first name.”
Angelo was among nearly a dozen speakers with various disabilities who told their stories, offering their perspectives on what it’s like to live with a disability.
Artwork by people with disabilities and a performance by FREE’s drum and bugle corps also showcased skills of people with disabilities.
“All of this is a way of telling your story. All of these pieces are a part of you,” said Jaime Crispin, who organized the event and leads FREE’s Speakers Bureau, composed of disabled people trained to speak to the public. “Each time you tell your own story, draw or create a collage or a painting or write a poem, you are telling a part of who you are.”
Sam, who helped train the drum corps and performed at the start of the event, said he loves working with the band of drummers.
“We have a great time learning a lot of stuff. It’s a dream come true to be working here and doing music,” Sam said. “I’m glad to be here, working with good people and great workers. I feel like I finally found my place.”
Sam, like many others at the event, talked about moments in their life that inspired them. In his case, that was seeing Rent on Broadway.
“I remember it like yesterday when my dad and I went to the theater and watched the show,” Sam said. “It was an incredible, life-changing event.”
He talked about being inspired by the lyrics of “No Day But Today,” which he said mean you should “live your life to the fullest.” Although Jonathan Larson died before his musical reached Broadway, Sam said the music and lyrics of Rent continues to energize him and others today.
“It’s still inspiring people to do what I do,” Sam said. “Everybody has great stories. I’m very happy to be here.”
Change in the air
Ian, who has struggled with depression and addiction, talked about his efforts to turn his life around by modifying behaviors.
“That dark time made me want to change my life. Without going through that, I would not be where I am today,” he said. “A lot of my friends were not positive influences. My friends then did not have my best interests in mind.”
He said he began focusing on himself by turning to “hard work, therapy, [and] positive thinking.” He focused on a healthy body and mind. “It was necessary for me to concentrate on exercise and getting physically fit,” Ian said.
Meanwhile, Bradley talked about being called into the principal’s office at the Elwin Institute, a school in Pennsylvania for people with learning disabilities.
“I said to myself, ‘Oh, my heavens, am I in trouble? Did I cheat on a test or say something I shouldn’t say?’” he said. “The principal said, ‘I have two things I need to discuss with you.’”
After he asked what they were, he was told he would find out only after he sat down.
“You won the principal’s award,” Bradley was told once he sat. “This is the first time that a person with disability or mental illness got that award here.”
After being named valedictorian, he wrote a speech designed to convey a message that people with disabilities are important and valuable, even if some people bully and treat them badly.
His family – including parents, grandmother, grandfather, aunt, and cousins – all attended graduation, where they got a surprise.
“I never told my parents that the valedictorian gets to lead the class in,” Bradley said. “My brother said, ‘Hey, mom, look.’ And mom starts to do what? Cry. Mom was very proud of me.”
He described some of the content of his speech, meant to inspire others with and without disabilities, in the face of obstacles.
“One of the things I mentioned in my speech is no matter what people think of you, you’re the best,” he said.
Hope, help, healing
Others offered uplifting messages, such as Jimmy, who read “Hope After Head Injury” by Cristabelle Braden, a kind of rallying cry. “I will not stop living. I will stay strong,” he read. “I move forward.”
Rebeccah read “My Voice, My Life,” a poem she wrote calling for recognition and respect and injecting reality into misconceptions some have of people with disabilities.
“I do not need help thinking. What makes you think I don’t have an independent mind?” she asked. “I have dreams, I have wishes and opinions.”
Rebecca said, “I have a voice. It’s my voice” and “There is no normal,” but rather each person is an individual with their own way of being. “I look at it as no one has a disability,” she said. “Accept everyone for who they are.”
Others read poetry, told stories, and showed their artwork at this event designed to let people with disabilities be heard. Peter in a poem he wrote described “the people we meet as they help us out of a hole so deep.”
“The world is a little brighter,” he said. “And my shoulders a lot lighter.”
Angelo, though, gave the most detailed account of how he recovered, after being told by doctors he would need occupational, physical and speech therapy to learn “everything all over again.”
He made progress that would eventually lead to his speech at this podium. “I began to learn how to walk, talk, use my brain all over again,” he continued.
He stayed in rehabilitation for a year and 10 months, recovering after emerging from a coma. “It wasn’t easy,” he said, “but it wasn’t impossible either.”
Angelo talked about how, after suffering from a condition known as AVM or arterial vein malfunction, he values every day of his life.
“It was out of my control. They say it was there since I was born. I never had any symptoms,” he said. “Every day above ground is a plus.”
Crispin hopes to send members of FREE’s Speakers Bureau, which includes various people from this event, to speak to other audiences, spreading the word about the reality and need for respect for people with disabilities.
“We hope to go to colleges, schools, organizations and present various topics,” Crispin said.
Jonathan, a participant in FREE’s theater program, talked about how performance builds confidence.
He described participating in a drum competition in Williamsport, Penn., as a moment he still remembers. “It was the best experience of my life,” he said with a smile.
The event, at least briefly, led to treatment of the participants as celebrities amid a wave of congratulations. “Autographs will be given outside the room,” Angelo said before pizza was served.
“Can I have your autograph?” someone in the audience shouted. “Great job, Angelo!”
Ian, however, may have given the most inspirational speech, leaving audience members with a call to action, whether or not they have a disability.
“When faced with adversity, don’t be discouraged. Be more determined to keep going. You have purpose,” Ian said. “It doesn’t matter what other people think. What matters is what you think of yourself. If you have a dream, go for it. If you love something, do it. Don’t put limits on yourself.”