Cara Liebowitz

For the Disability Community, Authentic Representation Makes a World of Difference

Posted on May 19, 2020June 14, 2023 by Cara Liebowitz

When I was in sixth grade, I started a scrapbook of articles about disabled people. Each article was carefully cut out from newspapers and magazines, or printed out from the early 2000s Internet, and slipped into a page protector in a large three ring binder against a backing of colorful cardstock. Extended family members would often cut out articles to save for me. My scrapbook was my pride and joy. But the scrapbook fell into disuse as I got older. It gathered dust in a closet until recently, when I pulled it out in the middle of a cleaning spree.

Opening my scrapbook for the first time in years felt like a weird form of time travel. Most of the articles were pure inspiration porn. I can’t even count how many followed the general theme of “disabled person exists! And has a job/is an advocate/did something wholly unremarkable!” Some portrayed the parents of disabled children as heroic saints. The activist in me cringed as I flipped through the pages, but my heart ached at the same time. I recognized that I had collected these articles as a preteen in a desperate attempt to find someone, anyone, anywhere, who looked the slightest bit like me.

Growing up with a physical disability, I was fully included alongside my nondisabled peers in school from kindergarten onward. While I absolutely believe this was the right thing for me, it also meant that I didn’t meet many disabled people until my teen years, when I started going to sleepaway camp for children with physical disabilities. I didn’t become friends with many people with non-physical disabilities until even later. I was acutely aware from a young age that I was different, and though my childhood was generally happy, there were moments of profound loneliness. The Internet was still in its infancy, and though I had some limited moments of connection with other disabled people on old-school message boards, it was no substitute for real, authentic representation.

Now, of course, it’s different. The disabled preteens and teens of 2020 can go on Facebook or Twitter or Instagram and find people who look like them with just a few clicks. Disabled people are authors and activists and models. Perhaps more importantly, they’re people. A quick search through any of the disability-related hashtags (like Keah Brown’s #DisabledandCute) reveals thousands of disabled people living ordinary, unapologetic lives. That’s the kind of content I needed growing up. It’s the kind of content that I’m happy exists today.

I don’t need to make my own scrapbook to find people like me anymore. I’m grateful for that, because representation matters, for the disabled child I was, the disabled children of today, and the disabled children that are yet to come.

Disability History and Culture, Media

About

Cara Liebowitz

Cara Liebowitz is a disabled activist and writer currently living in the Washington, DC area. Cara works at the National Council on Independent Living as their Development Coordinator, fundraising for programs that help people with disabilities live in the community. She’s passionate about science fiction, knitting, and cats (sometimes all three together!). Cara blogs at http://www.thatcrazycrippledchick.com.

About Rooted In Rights

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Reminder: Non-Disabled People Aren’t the Only Ones Affected by COVID-19

Posted on March 10, 2020June 14, 2023 by Cara Liebowitz

The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice.

In the midst of the COVID-19 pandemic, I’ve been staring at graphics that show how to wash your hands “properly.” I’m pretty sure my hands and wrists just don’t move like the graphics say they should. Have I been doing my best to follow the recommendations of the Centers for Disease Control and the World Health Organization? Of course. But it’s hard not to feel like a bad pandemic prepper when I can’t even do something as basic as washing my hands the “right” way. That’s just one example of how disabled people have been excluded from the messaging around the COVID-19 pandemic — exclusion that could very well lead to deaths.

“Wash your hands and you’ll be fine” seems to be the refrain, the magic bullet that will prevent us from getting COVID-19. But how are physically disabled people supposed to wash our hands when we can’t even get into a public bathroom? When we can’t reach a sink, or the soap dispenser, or the paper towel roll? How many of us are being exposed to even more germs because we need to touch things like grab bars and automatic door buttons? 30 years after the Americans with Disabilities Act passed, accessibility is no longer just a nice thing to have. It could mean the difference between life and death for many of us, especially those who are at more risk of complications from getting sick.

And yet, I’ve seen so many people, even some medical professionals, claim that only the elderly who have pre-existing medical conditions are at risk for serious complications. “If you have this virus, those are the people who should isolate from the elderly.” Dr. Jeremy Faust opined on CNN. Once again, disability and chronic illness are thought of as things only elderly people experience, and youth is correlated with health.

I’m young and I’m disabled. I have asthma. Many of my friends and loved ones are immunocompromised. When people say “only the elderly and those with pre-existing health conditions will have serious effects from the virus,” what they actually mean is “‘normal’ people don’t have to worry.” The system is not set up for disabled people, and during a pandemic, that’s even clearer.

I’m tired of COVID-19. But what I’m even more tired of is the way disabled people have been excluded from messaging around the pandemic. Many of us are the ones who should be the most worried, but media outlets, health agencies, and other leaders barely seem to acknowledge that we exist.

When you talk about COVID-19, remember this: disabled people are watching what you say. We’re subject to this pandemic too. We refuse to be your acceptable losses. We will not be collateral damage.

COVID-19, Emergency Preparedness, Health

About

Cara Liebowitz

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Why A Teacher Carrying a Disabled Student on His Back Shouldn’t Be News

Posted on October 16, 2019June 14, 2023 by Cara Liebowitz

Once again, an abled person recently went viral for including a disabled person in everyday activities. That means it’s (*checks calendar*) a day ending in Y. This time, a teacher is being lavished with praise for volunteering to carry Ryan Neighbors, a student with spina bifida in a specially designed backpack on an inaccessible field trip.

From the original post on Facebook, made by Ryan’s mom, Shelly:

“If i haven’t bragged on my kids school enough – well, listen to this. They are going on a field trip to Falls Of The Ohio today. Obviously, NOT accessible. I was preparing for an “alternate field trip day” when a male teacher reached out and said “I’m happy to tote her around on the falls all day!’”

The post included several photos of Ryan grinning ear to ear in the backpack carrier as the teacher carried her around the Falls.

I get it. When I was Ryan’s age, I probably would have embraced being toted around in a backpack instead of being left out of yet another field trip. As someone who grew up with a physical disability, I vividly remember being excluded, huffing and puffing behind everyone else as they climbed terrifyingly steep staircases, and having my mom patiently explain to my teachers that it might be a good idea to keep an eye on me while crossing busy parking lots, as I was likely to be behind the group and at risk of falling over. When my eleventh grade physics class took the legendary field trip to Six Flags, I considered going for all of half a second before discarding the idea as just too complicated.

These experiences continued as I pursued my bachelor’s degree in Education. When the third grade class I was working in took a field trip to a museum, I was stuck being pushed around in a manual wheelchair by a parent chaperone, and felt more like another student than a teacher. I know what it’s like to feel like a burden on field trips, both as a student and as a teacher. I’m glad this teacher was able to provide a solution that afforded Ryan at least some participation in the field trip.

What troubles me is the overall situation and the reaction to it. First, I have to ask, why was an inaccessible field trip planned at all? Not only is planning an accessible field trip the right thing to do, but also it is actually illegal to exclude a student with a disability from a field trip. According to the regulations for Section 504 of the Rehabilitation Act, a public preschool, elementary, or secondary school “shall provide non-academic and extracurricular services and activities in such manner as is necessary to afford handicapped students an equal opportunity for participation in such services and activities.” The regulations don’t explicitly name field trips, but do name “recreational activities” as an example of non-academic services. In Ryan’s case, the teacher and school were actually doing the bare minimum required by law.

I think we can argue that while carrying Ryan in a backpack carrier included her on the trip, it didn’t actually “afford [her] an equal opportunity for participation” as she was unable to independently participate to the extent that (presumably) her other classmates did. I mean, imagine being tethered to an adult every time you want to explore something or talk with your friends? That doesn’t sound very equal to me. The Interpretive Center, a museum within the park, is wheelchair accessible according to the Falls of the Ohio website. It would have been easy to simply take a trip to the museum instead of hiking the paths.

The teacher who carried Ryan is, like so many others, a decent human being being lauded for simply doing the bare minimum to include a person with a disability. His story has been featured in numerous news outlets, including People Magazine and USA Today. What is that saying to Ryan and other kids like her? That including them is somehow noteworthy? That they shouldn’t expect to participate in activities with everyone else? That anyone who includes them is automatically a hero?

When stories like this go viral, it reinforces the idea that people with disabilities are second class citizens, beholden to abled gatekeepers who have the power to decide whether or not we get to participate. That’s not why people with disabilities occupied the Department of Health, Education, and Welfare headquarters for weeks on end or crawled up the Capitol steps. That’s not what I fight for every day. But unless and until we deconstruct these feel-good stories and call them out for what they are – inspiration porn – we’ll never achieve that vision of equality we’ve been working towards. I dream of a day when a student like Ryan can go on a field trip, in her wheelchair, and access the same activities as everyone else – and there’s absolutely zero news coverage of it.

Education, Media

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Cara Liebowitz

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Why I Believe Cerebral Palsy “Awareness” is Important

Posted on March 24, 2017June 14, 2023 by Cara Liebowitz

I had to explain spastic diplegia to my doctor a few weeks ago. It’s the particular type of cerebral palsy (CP) I have, and it’s also the most common type. I’ve long since given up hope of any general practitioner (GP) I see knowing what CP is, despite the fact that it’s such a common physical disability. This doctor, my new GP after a recent move, was no different.

“So it’s just your legs?” she asked in some confusion. I sighed.

“Okay, my formal diagnosis is spastic diplegia. That means that my legs are affected more than my arms,” I said patiently, feeling like I was explaining something to a toddler for the hundredth time. “However, it affects everything for me – my legs, my arms, my speech, eyes, everything. And at this point in my life, I see myself more as quadriplegic, because everything is affected more or less equally. Without the surgery I had when I was five, my legs would probably be more affected.”

I’m still not sure she understood, but I gave it my best shot. After all, it’s part of the process of raising awareness.

I have mixed feelings about the concept of “awareness,” but since March is Cerebral Palsy Awareness Month, I feel it’s important to talk about it.

On the one hand, awareness can be useless and even dangerous, like those Facebook status games for breast cancer awareness, or these videos from autism “awareness” organization Autism Speaks that paint autism as some sort of bogeyman and feature a mother saying – IN FRONT OF HER CHILD – that if it wasn’t for her non-disabled child, she’d put her autistic child in the car and drive off a bridge. On the other hand, awareness can be good to educate people about what disabilities like CP actually are.

Because there’s still so much misinformation out there, I feel like we can’t fully denounce “awareness” until everyone gets their facts straight.

Can we have the good parts of awareness without the bad? I think so. Take this example, for instance. As a teen, I went a summer camp for kids with physical disabilities, most of whom had CP. One day during a fall mini-session, we went to a pumpkin farm where one of the attractions was “corn shooters,” loud cannon-type things. I, like many other people with spastic CP, have a startle reflex that causes me to jump in response to sudden noises, touch, or even light. A startle can be uncomfortable, embarrassing, and painful for my muscles especially if there’s several in a short period of time. So, the corn shooters freaked me out and I started panicking. My counselor asked me what was wrong and I told her about the startle reflex. She had no idea.

“You’ve been working at camp for two years,” I said in amazement, “and you had no idea about the startle reflex?” She shrugged.

“I’ve noticed that some of our girls are a little jumpy, but I thought that was just because our bunk is loud.” I laughed, but it felt good to know that the counselor now knew about the startle reflex and would probably keep it in mind in the future.

Learning about the startle reflex didn’t make that counselor see me or any other people with CP differently. There was no fear-mongering or pity involved. (Pro-tip: CP is not terrible or tragic). The counselor was simply educated about something about CP she hadn’t known before. It’s literally that easy to raise awareness.

So, this CP Awareness Month, I still believe in the importance of awareness. But we must fight against harmful “awareness” and take back the term for ourselves. True disability awareness is the first stop on the road to acceptance. It just might take some time to get there.

Activism and Advocacy

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Cara Liebowitz

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