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Fitness coach and child with cerebral palsy inspire each other through long-distance mentorship

"I want Colbie to know that she can pick up the phone and call me for whatever reason."

CBS Mornings|YouTube

Fitness coach and child with cerebral palsy inspire each other.

Everybody needs someone who can relate to them; it's one of the things that connects the human experience. For a 5-year-old New Jersey girl named Colbie Durborow, that connection came just in time. Colbie has been noticing people staring at her lately as she gets around using leg braces, a walker and sometimes a wheelchair, and she told her mom that she doesn't like it when people stare.

"She said, 'Mommy I don't like when people stare at me. Mommy, I don't like it, I want them to stop,'" Colbie's mom, Amanda Durborow, told CBS Mornings.

Colbie was born 17 weeks early and has cerebral palsy (CP), a group of disorders that affect balance, mobility and posture, according to the Centers for Disease Control and Prevention. Her mom connected with former CrossFit trainer Steph Roach on Instagram, and the two became friends.

Roach also has CP and uses a wheelchair, but she defied the expectations of others by becoming a fitness coach, CrossFit instructor and author.

"When I saw Colbie and I saw the way that Amanda was guiding Colbie through life, it was just like we were meant to be friends," Roach explained to CBS Mornings.

The two women and Colbie got to know each other online, and before long, Roach was acting as a mentor for the little girl. They were all finally able to meet in January, and the author got to teach Colbie how to navigate some uncomfortable situations.

"Colbie realizes that people are starting to look at her and see her maybe a little bit differently, so we've had some big conversations about how that might make her feel," Roach said.

She went on to encourage the little girl that it's OK to tell people that she doesn't like it when they stare and to offer to answer questions people may have. The exchange was very sweet. Roach later admitted that she thought that Colbie could do anything, and said through tears that if she could go back to her 5-year-old self, she would tell her to be proud of herself.

It's clear that these two have developed a special bond through their connection with CP. Thanks to having Roach in her life, Colbie is learning that she can do things that exceed expectations. You can watch their adorable bond below:

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6 things you wanted to know about my cerebral palsy but were too afraid to ask.

When I meet new people, I know they have questions about my life. But all too often, they’re too afraid to ask them.

When I was about a year old, I was diagnosed with cerebral palsy.

I don’t know much about the day I came into the world or what caused my cerebral palsy because I’m adopted. I was born on the streets of Seoul, South Korea, presumably without proper prenatal care. Someone, who I’m assuming was my birth mother, had enough sense to drop me off at a police station with a note that read: “Please adopt her to a family that can raise her.”

A few months later, I joined my very large family in America. I was almost 11 months old.

My family! All photos from me, used with permission.

Upon my arrival, my parents slowly went down the line of people in my family, explaining my disability. Eventually, everyone in my life knew about it. Some people were more accepting than others at first, but eventually they all came around. But still, they all had assumptions and questions they were too afraid to ask — like, “What exactly does Erin have?”

When I meet new people, I know they have questions about my life. Often, they’re too afraid to ask them. So today, I’m going to answer them.

In fact, I think this has been the story of my life so far: helping others get to a point where they realize that a disability isn’t something to fear or stay quiet about.

Here are six things you probably want to know about my cerebral palsy but are too afraid to ask:

1. How does your disability affect your everyday life?

CP is a condition that can affect everything from brain function to motor skills. I use a wheelchair because my legs aren’t strong enough to carry me.

CP affects every aspect of my day-to-day existence, from getting out of bed in the morning to getting in the car to go somewhere. But while there are a lot of things I‘m not able to do independently, my CP has never stopped me from trying to do things “the Erin way” before asking for help, regardless of how much time or energy it takes. Writing is something I can do completely on my own — and that’s been a gift that literally keeps on giving.

2. Has having a disability made your life harder?

Yes. But believe it or not, it’s also been an advantage. I learned a long time ago that if I was going to get anywhere in life, I needed to come to terms with what I have. I know this is something that will always be a part of me, so I’ve found ways to turn it into positive energy — mainly through my writing. When I let go of all the negative thoughts and hardships that come with being disabled, I was able to let the power of words and writing set me free.

I started writing at a very young age, out of a personal reaction to my situation. My CP made it difficult for others to understand me when I spoke — and it still does, to a degree. I just wrote how I felt and people slowly started to respond to that. In turn, it eventually let them know that it’s OK to be honest about disability. I’ve used that energy to build a platform where I can now share my thoughts with the world and help people to feel more comfortable around others with disabilities.

3. Can you die from cerebral palsy?

I get asked this a lot, and thankfully, the answer is no. I’m incredibly fortunate that my diagnosis of CP isn’t as bad as it could have been. This is a disability that can be caused by a lot of factors, like a lack of oxygen and/or prenatal care, as is likely in my case. But for other folks, CP can present itself in different ways, from something as small as a limp to something as severe as brain damage from a car accident. For me, the silver lining in all of this is that while there’s a laundry list of characteristics and contributing factors that can end up being fatal, the disability itself is not.

4. Is CP contagious?

This is another question I’m asked a lot. The good news is the answer is still no.

5. Are there any perks to living with CP?

If I had to pull something positive from this, it would be that I’m grateful for kind and generous people who let me go in front of them in long lines, and free admission at my local movie theater — even though they did away with that perk a while ago. It was fun while it lasted.

6. Do you ever get tired of living with a disability?

Yes. But I‘ve learned to put my time and energy into things that truly matter. I can’t fight every fight there is or solve all the world’s problems. Some battles aren’t mine to fight, but CP is my battle to fight. I’m grateful that my life will leave some kind of impact for people who meet me and read my stories.

Me with the book I wrote.

As a wise man once told me: “Everyone has a disability. Some you see, others you can’t.”

It’s easy to stop asking questions and let your own fear and assumptions form your opinion of someone or something that’s different, like me.

But please, keep asking questions. Throw away your assumptions. Look at me for my abilities, not my disabilities.

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How ABC's 'Speechless' is changing attitudes about disability.

'Speechless' matters because inclusivity on TV promotes inclusivity in life.

Over six decades ago, a disabled character starred on a TV show for the very first time.

She was a woman and a wheelchair-using attorney, and she starred in "Martinsville, U.S.A." The program, a 15-minute soap opera, featured actress Susan Peters. In the storyline, she had moved back to her hometown of Martinsville, Ohio, to begin her own law practice.

Use of the wheelchair — unlike later instances, like Robert T. Ironside (a former cop who became a consultant for the San Francisco Police Department after being paralyzed from the waist down after getting shot in the line of duty) — wasn’t simply a plot device. Peters, who was paralyzed due to a hunting accident just a few years earlier, used a wheelchair both onscreen and off.

"Miss Susan," the show’s original title, was one of several planned soap operas in the early days of television that aspired to "spread sweetness and light and an optimistic philosophy" while shying away from the more “over-the-top storylines” that dominated radio waves in 1951.

Fast forward 65 years, and we get "Speechless" — a new sitcom from ABC.

Photo via ABC/Bob D'Amico.

In "Speechless," which premiered  on Sept. 21, 2016, the first thing disabled teenager JJ DiMeo (played by legitimately disabled actor 18-year-old Micah Fowler) does is flip the bird at two slackers — cerebral palsy style, amplified by using four fingers instead of one.  Call it a comedic accommodation, but the message is funny, unexpected, and crystal clear.

My, how things have changed.

In the show, Fowler stars as a nonverbal teen in a family of five.  But that doesn’t mean the character has nothing to say.

Most of the talk around the show has been positive, especially from the disability community.

According to Stephanie Hydal, who co-organized a premier event at the Westside Center for Independent Living in Mar Vista, "Speechless"did what it needed to do with its first episode.

“'Speechless' introduced audiences to major concepts rooted in the disability experience: inspiration porn, parental roles in advocacy, the role of support providers, and the importance of disability advocacy and self-direction,” said Hydal, who noted that viewers in attendance were impressed by how the show humorously highlighted the difference between compliance and accessibility, which she says is a new concept for most people.

By the end of their screening, Hydal says she witnessed budding non-disabled allies engaging with disability stories told by disabled people, and it felt like an important and rare occurrence.

Social issues aside,and perhaps most importantly, "Speechless" is also genuinely funny.

For a comedy show, “Is it funny?” should be first priority, and "Speechless" really is. Not in a mocking, stereotypical way, but in a way that draws from real life, resonates, and invites people in.

The real life approaches used in "Speechless"are perhaps nowhere more apparent than in the ways JJ communicates. "Speechless" creator and "Friends"alum Scott Silveri based JJ’s communication technique on the method developed and used by Eva Sweeney, who has cerebral palsy herself.

Photo via ABC/Tony Rivetti.

Early on, Silveri met with Sweeney to discuss the concept for the show. When he saw Sweeney and her aide communicating with a letter board and laser pointer, he immediately changed the script to insert a human aide in the story, rather than computer-voiced communications, opening up additional avenues for storylines.

Now a paid consultant for the show, Sweeney reads every script “to make sure nothing is completely off or offensive about having CP” and to make sure that the show accurately depicts what being nonverbal is like.

“This doesn’t necessarily make the show better,” wrote Sweeney via email. “But it offers a different and new perspective into how people with disabilities can communicate.”

Plus, the creators brought in actors who actually live with disabilities daily.

Maysoon Zayid, a comedian and actress with cerebral palsy, said "Speechless"is noticeably different when it comes to casting methods: “I love that it makes non-disabled actors playing disabled characters look clownish and offensive.”

Zayid, whose popular TED Talk currently totals over 7 million views, suggested another reason for the show’s success: its authenticity.

“Overbearing moms are definitely REAL for a lot of us," she said. "Being broke is very real too. Disability is not cheap. I love how from the opening scene, JJ shows that nonverbal isn’t the same as infantile. 'Speechless' also champions the inclusion of disabled and non-disabled students together in school which in my case, was life changing.”

"Speechless" matters because inclusivity on TV promotes inclusivity in life too.

“For once, it is nice to see something happening on camera that I have experienced in my own life,” said Dominick Evans, a trans disabled film director and creator of the popular #FilmDis weekly Twitter chat on entertainment and media issues.

Photo via ABC/Tony Rivetti.

Where should the show go next? Evans said he’d “like to see JJ’s mom [hilariously played by Minnie Driver] move from Mama Bear protector mode into teaching JJ how to be a great self advocate, and 'Speechless' has the potential to do just that... It can do a lot of good by showing the world disabled teens are just as capable of being annoying buttheads as any other teen out there.”

Or, as Zayid put it, “I'd really love to see JJ date.”

When its stacked up against where we’ve been, ABC’s "Speechless" lands solidly in the “win” column.

Thankfully, audiences seem to agree. The series premiered to universally positive reviews and solid opening ratings (2.0, 7.3 million in Live+same day). It held up so well, in fact, that the network just announced a rare early full-season order just a week-and-a-half into the season.

But don't think we're all the way there just yet. When it comes to bringing more authentic disabled talent to the screen, a lot more work needs to be done.

A recent study published by the Ruderman Family Foundation reports that less than 1% of TV characters have disabilities — and 95% of those roles are played by actors without disabilities. Even fewer disabled people have established careers as writers, producers, or directors, despite census data that suggests over 56 million, or roughly 1 in 5, Americans are disabled, within every demographic — rich, poor, gay, straight, female, male, trans, person of color, or white as newly fallen snow.

In 2016, disability is a cultural and political identity, a diverse community, and entire libraries of compelling, outside-the-box stories that, by and large, haven’t been widely told — yet.

Hollywood take note: Whether it is creative input, audience cultivation, or hiring practices, the disability community — however one defines or understands it — can no longer be ignored.

Photo via ABC/Richard Cartwright.

If your ideas about disability are stuck in 1951 and you get it wrong, disability advocates, artists, and influencers are going to call you out.

Get it right and you might just have a hit television show like "Speechless."  

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A letter to my able-bodied partner.

Dear able-bodied partner,

At your predecessor’s apartment, I always took my shoes off as soon as I walked in. It wasn’t a house rule, but an effort to speed things along. My orthotics make shoe removal a complex procedure involving clasps, straps, and — much less sexy — a foam pad that looks like a Pringle. (If you don’t flinch at the Pringle, you’re a keeper.) It’s a clumsy detour to take once you’re making out so, as usual, I thought ahead.

That’s a habit cerebral palsy forced me to form.

The ultimate mood-setter. Photo via iStock.

One night, I forgot until we were already in her room. She waited on the bed while I sat on the floor to unlace my sneakers, and I’d just pulled the left Pringle free when I heard, "Um … do you need help?"

We need to talk about that question, and all the ones like it that I imagine you have.

What if you say the wrong thing? Do you acknowledge my disability right away or not at all? Should you just ask? Is that weird? How much are you responsible for? And where is it OK to touch me? Should you even want to? What does it mean if you do? Or if you don’t?

Do you need help? Thought so.

There are expectations for couples like us. Namely, that I will be grateful, that you will protect me, and — most importantly — that we will "overcome disability" together because that is what love looks like. No one says as much outright, but they reinforce it in smaller, sneakier ways. I can guarantee, for example, that you will earn praise for being with me. The truly bold (usually strangers or well-meaning relatives) will actually tell you how "nice" it is that you’re dating "someone like her." But more often, your friend will get too honest one night, admit "I don’t know if I could do that," and then ask you "what it’s like."

Someone will admit, "I don't know if I could do that." Photo via iStock.

Your panicked questions, the constant pressure, and those backhanded compliments all imply that my disability is a problem I need you to solve. That’s kind of the only language we have for when able-bodied and disabled people get together. And I, for one, am pretty bored of it. So let me offer an alternative:

I don’t need you to save me. I need you to see me.

Notice what I did not say just now. I didn’t ask you to "see me, not my disability" or to "see past cerebral palsy."

Lots of people are on the "see past" bandwagon, and I understand why. Being disabled can feel like not even having a shot at independence, connection, or being taken seriously, so of course there’s an impulse to distance yourself. That’s what happens when the world caters to somebody else. But personally, I don’t want you to separate cerebral palsy from who I am. Because (you ready for this?) it is who I am. I don’t even know how it’s possible to "see past" something so fully baked into my experience. Instead, I need you to work a little harder and understand disability as part of my value rather than a caveat on it.

What does that look like? The best answer I have is that it looks like letting go. Instead of putting my disability in a vice grip, accept that it takes up space. Don’t try to defeat it; that is neither possible nor your job. Reconsider the assumption that I don’t want it and that you shouldn’t either. Because if you want me, you want it, too. There is no me without it. The fact is that vilifying cerebral palsy doesn’t make it count less. So acknowledge that it matters, and that’s not a bad thing.

Instead of putting my disability in a vice grip, accept that it takes up space. Don’t try to defeat it.

On a practical level: Maybe don’t ask if I need help with something I’ve been doing without you for 27 years. Trust that if I want help, I will say so. I’ll tell you right now: You will need to carry the drinks to our table, offer your arm when the stairs have no railing, and hold my hand through at least one major medical event. If you want to be the hero, there’s how. Otherwise, though, back off and listen. Give my body the room and time it needs. (It’s been through some things.) Find a better compliment than "you’re not like most disabled people." When you tell your friends, resist the urge to clarify that I can walk. And most of all (this is the hard one), let me fail.

No one likes to see disabled people struggle. I think it’s just too much, like watching a turtle get stuck on its back.

But when you respect someone, you let them make mistakes in front of you.

Photo via iStock.

You let them try things you’re not sure will work — or that you’re sure won’t. You let them drop the defenses, screw up, and speak honestly. And that, more than any kind of help, is what I need from you.

That, to me, is what love looks like. Respect.

I don’t want to take my shoes off first thing anymore. I don’t want to apologize for my body or downplay its uniqueness. I don’t want to worry about whether or not you are afraid. I want to be all of myself. And I don’t want you to "love me anyway."

I want you to love me because.

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