I have a twin brother, Matt. Here’s why that’s important.
In my household we speak two languages: one that probably sounds like your day-to-day conversations with your family, and one that’s pulled from the Office for People with Developmental Disabilities, the Department of Social Services, our fiscal intermediary, brokers, doctors, and the sound of my brother Matt asking what’s for dinner (at the perfect time, every night).
Matt has autism and a visual impairment. He is my twin. He is the funniest, warmest, sweetest guy you’ll ever meet. He plays basketball on the court in our backyard until it’s dark and will nuzzle his head onto my shoulder while we watch a movie. He hates waking up before noon. He will eat anything that involves chocolate. He is my best friend.
Matt has informed my career as a journalist
I’ve been writing about Matt since I was in elementary school, and I will write about him for the rest of my life, even if my stories and services aren’t directly about him. Matt is my window into a world that runs parallel to my own: the world of living with a disability. Matt has helped me see outside myself throughout my life.
I’m studying social journalism at the Craig Newmark Graduate School of Journalism at CUNY, and my mission is to take the world Matt has shown me, listen to the people who live there, find the work they’re doing to advocate for themselves, and lift it up. Another part of my mission? To make this world less shadowy for anyone who doesn’t have a Matt in her life.
I decided to go to journalism school on the heels of 1.5 years at a parenting magazine, where I spoke to parents of kids with disabilities about the unique challenges and triumphs they face in special education, with Medicaid and other social services, and more. But the more I paid attention on social media, and started listening to disabled activists and leaders in the community, the more I realized I should be working with disabled people themselves. Parents, caretakers, and siblings are all important members of the disability community, but they do not identify as disabled. They cannot speak for a disabled person. Their lived experiences, while different than the average person’s, are still not the lived experience I want to focus on. CUNY is giving me the space to focus on talking to disabled people in New York City and figure out what they need, which I don’t think reporters do enough of—and people in the community have told me reporters don’t do enough of.
Once I decided I wanted to talk to disabled people and build my work around what they have to say, I had to figure out where I most wanted to focus. There are so many aspects of living with a disability that deserve a platform. From my work at the magazine, and my 24 years of life as Matt’s sister, I know special education is complicated and nuanced; I know social services are difficult to navigate; I know people with disabilities can be overlooked. To get a better sense of what my community is feeling, I started reaching out to people in New York City’s disabled community to see what they are most frustrated with, and why.
There’s a lot to be frustrated by when you have a disability
And I don’t mean being frustrated with the disability itself, although having any disability, some people say, can be frustrating. Most often, people have told me they’re frustrated with living in a world that is purposefully not made for them — or where accessibility is an afterthought. Here are just a few of the things disabled people have said they’re angry about:
- The residential system for adults with intellectual or developmental disabilities, where people say violence can run rampant
- Inaccessible activism — lobbying, for example, might not be accessible for someone with a physical disability
- Inaccessible or barely accessible information about changes to social services
- Doctors who don’t take Medicaid patients or allow Medicaid patients to pay out of pocket
- Low or no access to care in certain NYC neighborhoods
- People who think disabilities can be “overcome”
- People who think disabled peoples’ needs are “special,” instead of simply human
- Caretakers, parents, or other relatives speaking for disabled people — and getting it wrong
In the past six months, since I made the decision to consciously include more disabled voices on my timelines, I have seen that people with disabilities are often frustrated with how they are portrayed by the media. Some common issues I’ve seen people discussing happen when journalists use improper terminology, are infantilizing or patronizing, use disabled people for “inspiration porn,” or don’t take the time to understand what the community needs. I started asking my sources, “What do you see journalists getting wrong?” and people have a lot to say, because journalists have a lot to improve upon. One thing I learned from a source a few days ago? People who have autism, much of the time, prefer to be called “autistic,” instead of saying, “this person has autism.” This was not something I was aware of, and I made that mistake within the conversation. The source corrected me—and I appreciated that.
As I set forth to cover this community over the next year and a half, I vow to make sure my sources are guiding the way I describe them and service their communities. People have the right to set these parameters themselves—all people. I also vow to use the skills I learn in school and as a person to avoid the mistakes other journalists have made. Our social journalism program is all about listening, figuring out what a community needs, reflecting that need back to it, and then helping provide a solution to that need. That is what I’m going to do.
Disability rights are human rights
I want to hold institutions accountable and get disabled people the information they need, the way they need it. Most importantly, I want to amplify the work disabled people are already doing to tell the public how they live and just how NOT helpless they are. I was talking to a fellow Social Journalism graduate who reported on NYC subway accessibility a few years ago, and he gave me the piece advice I’m holding top of mind. First: I have to listen to the community without imposing what I think it needs, on it. And second: just because we don’t see disabled people in public spaces, whether that be on a certain subway, in our apartment building, in our doctor’s office, or marching in a protest, doesn’t mean disabled people aren’t fighting to be there.
Often, after I talk to a source, I think about Matt and all the places he deserves to be. Not because he’s my brother, but because he’s human. And sometimes I think about all the people in this world who might not think Matt deserves all the same rights as someone who doesn’t have autism or a visual impairment. There are, as insane as it seems, people like that. Who believe people with disabilities are less, should be “othered,” should be excluded. And that’s not right. It’s just not.
Through my reporting, I want to help more people get into the spaces they deserve to be in as human beings, and out of the spaces no human being should be in.
Let’s talk. You can find me on social media at @jacquineber, you can email me at jacqueline.neber15@journalism.cuny.edu, and you can comment on this post. If you’re frustrated, you want to let me know how I can cover disability issues justly, or you just want to chat, I am always available and can’t wait to listen.
