Looking at “Independence” Through the Lens of Disability

Photo of a book with pages lifting out of it to fly free.

After my first day of college classes, I wanted to quit.

I felt out of place and overwhelmed. As I sat with my mom in a local diner, I rattled off my fears – class sizes were bigger, the workload was intense, and my physical disability made maneuvering around the sprawling campus seem overwhelming. What if things weren’t accessible? What if the school was too big?

She was quiet as she listened, letting me voice my first-day frustrations, and then, she looked me in the eyes and without missing a beat, she said “You can do it,” in her trademark matter-of-fact tone.

She was sure. I, on the other hand, wasn’t as convinced.

While many of my peers were brimming with excitement to dive into the college life experience, I was terrified. To my classmates, college signaled freedom and the chance to do what you want, when you want. To me, though, college meant navigating the world alone for the first time.

Could I do it, I wondered? Was I even ready? I was born with Freeman-Sheldon Syndrome, a genetic bone and muscular disorder and have had more than 25 surgeries. Growing up, my mom and I were a matched set. Ours was a mother-daughter bond made even stronger because of my physical disability. She was there when I took my first wobbly steps at four, wearing braces that made my legs feel like weights. She was there as I zoomed down the sidewalk in my first motorized wheelchair at seven. And she was with me in those scary moments before I was wheeled into the operating room. Our bond is unbreakable.

As I got older, I relied on my mom in a way that my able-bodied peers didn’t – everything from showering and getting dressed in the morning to cooking dinner in the evening. In high school, that pivotal stage when teenagers get their first tastes of independence, I’d see my able-bodied classmates go on overnights or spontaneously make plans to hang out at the mall, and I remember feeling those familiar pangs of jealousy. This independence thing seemed so easy and effortless for them and I often wondered what exactly that felt like. My road to independence had taken quite a different path than my peers’, and this is the reality for many people with disabilities.

The teenage years are all about discovering who you are, full of eye-opening moments and experiences that shape the rest of your life. And as much as I was grateful for all the help my mom gave me, I felt like my burgeoning sense of self was floundering; it often felt like this elusive concept I just couldn’t grasp. Who was I? Who was I apart from being my mom’s disabled daughter? And, perhaps the scariest question of all, the one that I kept turning over in my head: How would I navigate the world, a world that wasn’t made for people with disabilities, without her?

It hit me on that January day as we sat across from each other in the diner: For the first time, my mom wouldn’t be right there next to me. She wouldn’t be the one who made sure the classrooms and busses were accessible. She wouldn’t be the one who visited my class to talk to my classmates about my disability. She wouldn’t be my #1 advocate anymore. That person would now be, well, me.

I’d be starting this new chapter completely on my own. I was terrified. But I went to class the next day. And the day after that. As the semester rolled on, I started doing more on my own. I got a job as a copy editor on the student newspaper, where I often stayed late proofreading pages. I also began taking an accessible bus around town to go out to eat and enjoy an afternoon of shopping. It was my first taste of independence, and with each new activity, I felt like I was exploring a whole new world. A world in which I didn’t need my mom to lift my wheelchair in her car and drive me where I wanted to go. I could get myself there, and it was a type of pride I’d never felt before.

The world seems huge and overwhelming when it’s not built for you. If I could tell young disabled people one thing, it would be this: Don’t be afraid to go at your own pace when it comes to seeking independence. Dip your toes in just a little, see how it feels and then adjust accordingly. Our society is so focused on a timetable of when and how we should become self-sufficient beings, but guess what? That timetable is ableist. It’s based on the able-bodied world and fails to take into account the needs and comfort levels of disabled people.

For that matter, we need to rethink our definition of independent altogether. This is something I never thought of until I got older. Andrew Pulrang, a disabled writer and activist, described a new way of looking at independence for the website Parents that makes a lot of sense: “Real independence is about being your own person, living life on your own terms, not about complete self-sufficiency. Independence isn’t about doing everything for yourself, the same way everyone else does. With the right tools and support, and adapting the usual ways of doing things, people with any kind of disability can achieve meaningful independence, whatever it may look like for that given person.”

Independence isn’t one-size-fits-all. In the end, it looks different for everyone. I wish I could tell my teenage self those wise words. May the next generation of people with disabilities hear that message loud and clear! You will get there – on your own time and in your own way.

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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Facebook Avatars Are Fun…But They’re Definitely Not Disability-Inclusive.

A side by side image of Melissa's Facebook avatar and an actual photo of her, as described in the blog post.

Like many people, I’ve been spending a lot of my quarantine time mindlessly scrolling through Facebook. Amidst the cute cat photos, career updates from writer friends, and selfies of at-home haircuts, I noticed a new trend last week: People were posting their Facebook avatars.

Imagining yourself in cute cartoon form is a great way to take your mind off the state of the world, right? So, I decided to give it a try. It was fun at first. Hair color? Red. Type of shirt? Polo shirt, of course. Eye color? Dark gray. The avatars even got as detailed as letting me choose the shape of my eyes and chin. When my creation was complete, I looked at it for a moment and my first thought was, “Well, that’s nice, but, really, it’s just not me, is it?”

Because, frankly, it wasn’t me. For all the detail given to face shape and hairstyle, Facebook left out one key detail: Disabilities. I was born with Freeman-Sheldon syndrome, a genetic bone and muscular disorder, and I use a wheelchair, but here I was in avatar form, standing straight and tall. My wheelchair is a huge part of who I am; it’s how I live such a full life. So to see myself without it, even if it’s just a silly, fun avatar, was disappointing. In fact, there weren’t any options to add assistive devices of any kind, such as walkers or hearing aids or crutches, which makes these avatars not at all inclusive and actually pretty ableist.

I reached out to Facebook to see about their plans for inclusion. They’re working on it, said Amit Fulay, product manager for Facebook Avatars.

“It’s important to us that all people can personalize their avatar in a way that they feel represents their authentic self,” Fulay says. “We’ve heard and appreciate the feedback about this product and have been actively listening to requests for more diversity in the number of options available for Avatars – including people with disabilities. This is just the beginning, and we’ll continue to improve the customization options available.”

Unfortunately, people with disabilities have long had to fight for inclusion in the digital space. For instance, a set of disability-themed emoji wasn’t introduced for iPhone until last year

As it turns out, I wasn’t the only one less than thrilled with the lack of disability options in emoji. Caitlin Goerlich lives in New Jersey and became a paraplegic after having complications in surgeries due to kyphoscoliosis, an abnormal curvature of the spine. She’s also an adaptive athlete, aspiring author and runs her own YouTube channel. Last year, Goerlich went to update her Bitmoji to match the spring season and realized there weren’t any wheelchairs – or any options for any disabilities. She decided to speak up and created a Change.org petition to get the word out.

“I was first sad then angry because what about us? Why aren’t we represented like everyone else?” she said. “To me, ‘inclusion’ should include everyone, which also means disabled people, but sadly this was just another conversation where we were left out.”

So when Facebook Avatars were introduced, Goerlich edited the petition to include Facebook and then re-shared it. She hopes the petition, which currently has almost 7,000 signatures, will help people see the importance of disability inclusion.

“Disabilities do help shape us as I can honestly say without my disability, I wouldn’t be the person I am today and I’m proud of who I am. Every disability is different and disabled people deserve to be represented just as everyone else,” said Goerlich.

Indeed, disabled people deserve to be represented just like everyone else. All too often, disability inclusion is an after-thought – things become more inclusive only after disabled people speak up and demand change. It would be great to live in a world where this inclusion is part of the plan from the very beginning.

Facebook Avatars may seem like a small thing, but making them more inclusive will show people with disabilities in a better, more accurate way. We’ve got places to go and things to do and our walkers, canes, and wheelchairs help us get there. Those devices deserve just as much prominence as our hair color or eye color.

I’d wanted to create the best version of myself with my avatar, but as it turns out, that was impossible. Without my wheelchair or any representation of my disability, that redheaded, polo shirt-wearing woman just wasn’t me at all.

The day after I tweeted my disability-less avatar, though, something pretty wonderful did happen. Thanks to the talents of one of my Twitter followers, my wheelchair is now included in my Facebook avatar! Yes, I felt seen. Yes, I felt like the real me. And, it reinforced the one thing that I hope everyone understands: Representation matters, even in avatar form!


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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Ali Stroker’s Tony Nomination Puts Disability Center Stage

Photo of Ali Stroker, a blonde-haired white woman in a wheelchair.

Disability representation is taking center stage. Literally. And as a woman with a disability, I’m here for it.

This year’s Tony nominations were recently announced, and they signaled a historic moment: Actress Ali Stroker became the first performer in a wheelchair to score the coveted Broadway honor for her role as Ado Annie in Oklahoma!

This certainly isn’t the first time Stroker has wowed audiences with her talent. I first discovered her on The Glee Project, the 2011-2012 reality show that saw contestants competing for a role on Fox’s hit TV show, Glee. She was so forthcoming and open about her story: she was only two years old when she was injured in a car accident and has been a wheelchair user ever since, and, perhaps even more important, how she didn’t allow people to underestimate her. It was one of the first times I saw a woman speak so honestly about living life in a wheelchair, and, needless to say, it was incredibly refreshing.

At the time, I had just turned 30 and found myself navigating my world as a woman with a disability and trying to find my place in a world that wasn’t exactly built for me. But here was Stroker, on television, showing the entire world that she was bound and determined to challenge society’s expectations when it comes to disabilities. She was going to make the world fit her life, instead of the other way around.

Nearly a decade later, she’s continuing to change society and paving the way for the next phase of disability inclusion. She made her Broadway debut in Deaf West Theater’s production of Spring Awakening in 2015, earning her the distinction of being the first actor on a Broadway stage who uses a wheelchair.

Now, continuing her Broadway career as Ado Annie, Stroker is coming into her own sexual power. To see an overtly sexual character with a disability is huge, especially in a society that typically sends the message that women with disabilities are asexual beings.

“Especially growing up and as a teenager, I was always looking for role models who were in chairs. I always felt like a sexual person — I just didn’t know how to always portray that, and I never really was sure, as a kid, if being in a wheelchair could be sexy,” she recently told Vulture. “So, to arrive at this point is so exciting — more than exciting, it’s like a relief in many ways. Because finally we get to see someone who is so real.”

To pair disability with sexuality is nothing short of revolutionary. It’s not something we’ve necessarily seen so overtly on Broadway or quite so mainstream, and it’s sending the very-important message that, yes, women with disabilities can be sexy and can lean into their own sexuality just like nondisabled women. So often, disabilities are thought of as negative – sometimes even repulsive – and they’re virtually never included in mainstream conversations about sexuality. Or even in conversations about relationships in general, for that matter.

The assumption that women with disabilities are asexual beings is all at once hurtful, misguided and damaging. It’s an assumption that further puts us in the “other” category and fails to see us as whole people and all our identities instead of just part of us. And, it’s an assumption that should have been debunked decades ago.

Maybe that’s why I’m so thankful to see Stroker in the spotlight in Oklahoma! as a character who is a woman who embraces her sexuality and just happens to be in a wheelchair.

“Performing for me has been a moment where I felt like I was my most powerful self. I became hooked,” she said. “Growing up in a chair, I was used to people staring and looking at me, and that was difficult. And then when I got onstage people were staring and looking at me for the reason that I wanted. And I felt powerful.”

Powerful. That’s something people with disabilities have longed for — power over their life and power to change society’s perception of what it’s like to live with a disability. Stroker’s nomination comes at a time when, more than ever, the disability community continues to advocate for more accurate, well-rounded, positive representation in mainstream media. People with disabilities are living on their own terms, rather than conforming to any sort of expectations about how society thinks they should be.

Stroker’s monumental nomination is helping to normalize what it means to be disabled in 2019, and her role on Broadway is not just a bit character in the background. To see her so outspoken, unafraid and unapologetically confident will hopefully help other people with disabilities see themselves the same way.

I also hope that the able-bodied world really listens to what Stroker is saying and work to erase those disability stereotypes from their minds. People with disabilities aren’t living cloistered away and bedridden like in the old days. It’s a new day in the world of inclusion and we need those without disabilities to join the revolution too.

Ten years ago, a disabled actress wouldn’t even have been considered for the role of a woman exploring her sexuality — now, not only is Stroker embodying that character, but she’s also being recognized with the highest honor in the theater world! This is such a win for the disability community and a sign that inclusive representation is the way of the future.

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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Here’s What Dr. Phil Got Wrong in His Episode on Interabled Relationships

a man pushes a woman's manual wheelchair, helping her towards a car with the door open

I’ve spent a good portion of the last week thinking about a recent episode of Dr. Phil that featured an interabled couple and more ableist tropes than should ever be allowed in 2019. I watched the episode. I read articles about it. And I’m left with one major question: Why are we still buying into the “burden” narrative when it comes to people with disabilities?

Because I don’t recommend watching the episode, here’s the gist: The show featured couple Bailey, who has quadriplegia, and his girlfriend Harley. The two met on Tinder and have been dating for a few years, with Harley being Bailey’s primary caregiver. According to the couple, this has caused tension and frustration in their relationship. I genuinely felt for the couple, who were clearly struggling and trying to figure things out, but it was Dr. Phil’s treatment of the topic – and of disabilities in general – that was just unforgivable.

In fact, the entire episode played out like a lesson in how not to treat people with disabilities. Within the first 10 minutes, Dr. Phil asked Harley, in all seriousness, “You’re a young, single, attractive female. Out of all of the people that you could choose, why choose someone in a wheelchair?”

Oooh, the horror! From the way Dr. Phil phrased his question, you’d think that a wheelchair was the worst thing in the world. It’s a loaded question in itself, and in just asking it, there’s an implication of what the answer should be – that wheelchairs are bad, to be avoided and that no one in their right mind would actually choose someone in a wheelchair, right?

It’s that question that made my jaw drop the most because the assumptions behind it are alarming and troubling. As a woman with a disability (and who’s in a wheelchair), I hear that question and these are the subtexts that I hear…

“People with disabilities are burdens”

“People with disabilities are unworthy of love”

“People with disabilities are less than”

The theme of people with disabilities as burdens on their loved ones kept coming up throughout the rest of the episode. When Dr. Phil first spoke with Bailey, he said, “You hate being a burden.” Sure, he could have been mirroring Bailey’s thoughts and emotions, but at no point did he try to reassure Bailey that, no, he is not a burden. Instead, Dr. Phil just reinforced the archaic disability trope that all disabilities are simply “too much.”

And the grand revelation by the end of the episode? Dr. Phil concluded that a relationship in which one person is disabled and that involves caregiving will ALWAYS fail. Always, as in 100 percent of the time.

“This won’t work,” he said, referring to Harley and Bailey’s relationship. “100 out of 100 times, this won’t work.”

So by that logic, relationships that involve cancer wouldn’t work. Nor would relationships that involve Alzheimer’s. Or mental illness. The list goes on. It doesn’t have to be so black and white, does it? It doesn’t have to be all or nothing, and to say that any amount of caregiving will automatically set a relationship on the path to failure is incredibly narrow-minded.

Thankfully, the public agreed and were just as outraged with the episode as I was. People quickly took to social media to share their own stories of successfully navigating an interabled relationship. The hashtag #100outof100 on both Twitter and Instagram pushed back against Dr. Phil’s erroneous statistic, with photos and stories of people in love. The proof is in the tweets and ‘grams – YES, interabled relationships WORK.

For example, take Shane Burcaw and Hannah Aylward, whose YouTube channel shows first-hand that it is possible to be in an interabled relationship. Last week, the couple posted a video about their experience being asked to be on that Dr. Phil episode and why they ultimately declined. Yes, Shane has spinal muscular atrophy and requires care, but in every other way, the two are just like any other couple.

And here’s something important that Dr. Phil seems to forget: There are different types of “caregiving.” It’s not just about the physical. I may require a lot of personal care from my family, but that doesn’t mean I can’t care for them as well, especially when it comes to emotional caregiving. The episode is a perfect illustration of the sort of ableism people with disabilities encounter on a daily basis. People are surprised when I tell them some of the things people have told me and sometimes, I wonder what’s worse: Their surprise or the fact that I’m not surprised by any of it.

It’s because of ignorant statements like Dr. Phil’s that I’ve dedicated so much of my career as a writer to writing about disabilities. I want to tell real stories about the realities of life with a disability. I want to shatter stereotypes that uphold ableism. Because in just 40 minutes, Dr. Phil proved exactly why I needed to write a recent essay for Glamour about people assuming they’ll be nothing but caregivers in a relationship with someone who’s disabled.

For someone who claims to be a doctor with years of experience, Dr. Phil’s “insights” were nothing short of appalling. To conflate caregiving with being a burden is not only short sighted, but also wrong. To see a supposed doctor treat the topic of disabilities with such disrespect and carelessness is unacceptable. People with disabilities have fought long and hard to erase these stigmas, and with one episode, Dr. Phil did more harm than help. Of course we need more visibility when it comes to disability, but not if what’s presented is inaccurate and rife with ableist rhetoric. It is beyond irresponsible to present this narrative of disability. People with disabilities are not burdens. We’re human. And we deserve to be treated with dignity.

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

Click here to pitch a blog post to Rooted in Rights.