‘My parents were told I would be in a vegetative state for the rest of my life. I never gave up.’
“When I was 11 years old, I got hit by a car and died on the spot. I had a garden that summer, and so I was bringing my grandparents some tomatoes after school. On my way, I stopped to talk to some friends on the side of the street. A car was speeding and hit me. There were 20-foot streaks in the road. An ambulance came and resuscitated me. I was brought to the hospital. I wasn’t conscious. They drilled a hole in my head to drain the blood and relieve pressure.
“I was in a coma for four months. Nobody expected me to come out of the coma, and if I did come out of it, my parents were told I would be in a vegetative state for the rest of my life. I proved them wrong. I never gave up. I was in therapy after, and I had to learn how to walk and talk again. I had to learn how to do everything again. I was comatose. After I got the physical and occupational therapy to walk again, I needed to go to another rehab to learn cognitive skills, like how to talk and make conversations. After that, I went to school for people with disabilities. I didn’t have a good experience at that school. My brain was still dealing with a lot, and I would have these behaviors that I couldn’t control. I didn’t know how to handle certain situations, and they would just restrain me. I came home with bruises on my legs and back from being restrained as a way to calm down. They dragged me by my arms down a flight of stairs.
“Some people’s parents are controlling, but mine have been so supportive and amazing. They want me to live the life I want to live. I am so thankful for their guidance and for never restricting me from doing things that I am allowed to do. They have been there for me through it all. I have a great support system. My friends, mentors, and the people who run the organization I’m with now have been so great and supportive as well.”
I advocate for people with disabilities, like me.
“A lot of programs and schools for people with disabilities couldn’t handle what I needed; I also had diabetes. A few years later, when I was 15, I went to a brain injury school in Massachusetts and lived in a residential group home. It wasn’t a good experience. I was underweight at only 89 pounds. I left when I was 19 and came back to Long Island. I moved into a group home and then to an intermediate care facility. It’s the best option for me because they have around-the-clock nursing. I have epilepsy, which developed over time from the brain injury. I had the seizures under control for a while, but then the medication dosage wasn’t enough. It was difficult to manage, but in 2011, I got an implant in my chest called a vagus nerve stimulator. It’s a wire in my chest that’s tied to my vagus nerve. It’s connected to the cerebellum in my brain, which is where most of the seizures come from, and it goes off every three minutes to stop a seizure. I still have breakthrough seizures, which are caused by stress, but now they are only once or twice a month, compared to having them about five times a day like I used to.
“I’ve been in my current group home since 2016, and the staff is great. It’s run by AHRC Nassau, and I am in Citizens Options Unlimited. I have a paid job within AHRC Nassau as a training assistant. I also volunteer with the agency. I advocate for people with disabilities, like me. I take advantage of the fact that I have one. I can walk in their shoes. I know the experiences they go through. There are some people who can’t advocate for themselves. They can’t talk or express how they feel. They can’t stick up for themselves. I want to help the people who need it most. It’s a group of us who advocate for them. We have weekly meetings on how to advocate for yourself. I also volunteer in other places like food pantries. When I’m not advocating or volunteering, I knit and crochet in my downtime. I sell what I make, such as hats, scarves, teddy bears, and I’m beginning to sew pillows. I donate a large majority of the money to juvenile diabetes research. I’ve been doing this for over 10 years and, so far, I’ve donated close to $15,000.”
It’s nerve-racking to rely on others, especially when you’re capable and just need a bit of support.
“I used to go up to Albany with the Self-Advocacy Association of New York State to talk to the legislators and senators about making new laws. Since SANYS is across the state, they are low on staff, or they’re sometimes called direct support professionals. One of our ideas is to raise their pay. We want the staff helping us to be paid well. They do so much for us. We need them. They make sure we take our medications. They cook for us, they bathe and feed some people. They even physically move some people every half hour into different positions.
“My agency supports over 2,000, maybe even 3,000 people with disabilities. I want to be treated equally, and I want people with disabilities to be treated equally. We don’t get treated equally. We have a big label on our heads, and it isn’t fair. We get treated with respect within my agency, but there are some agencies out there where people with disabilities don’t get treated right. I have the option that if I wanted to, I could move out and get something called self direction. It’s funded through Medicaid, but the funding could run out after a few years, so I’m afraid to use it early on. Some of my friends had to opt out of it because their funding ran out. Also, in an agency, you always have a backup to the backup. There’s a pool of substitute staff that each group home gets.
“With self direction, if someone has an emergency, there is a backup step called paid neighbor, but if that person doesn’t get to you in time, then there’s nobody else to help. I am very capable, but I need help with my medications. I tried self direction once on my own, and I know I can so I could get self direction if I wanted to, but it’s a lot of responsibility. I would be nervous that I would mess it up, and it’s a lot to carry on my shoulders. If I get nervous or make a mistake, my heart rate and anxiety will spike, causing a breakthrough seizure.
“It’s nerve-racking to rely on others, especially when you’re capable and just need a bit of support. That’s something people with disabilities have to deal with – always relying on others. I would like to be a spokesperson or present at conferences regarding advocacy for people with disabilities. That’s a dream of mine. That’s where I want to be headed.”
Interviewed by Melanie Gulbas