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How to Be an “Upstander” for Those With Facial Differences

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treacher collins-facial difference-sarah cooper-myface-bystander-bullying
Charmaine Cooper

Charmaine Cooper, an accomplished nurse and sister of comedian and actor Sarah Cooper, talks about her experience living with facial difference as a result of Treacher Collins syndrome, and why organizations like myFace are critical for a kinder world.

What is the exact disorder that caused your facial difference?

I was born with Treacher Collins syndrome (TCS). When my mom was pregnant with me, she was very; they weren’t even sure I was gonna make it.

She was on bed rest. She couldn’t take food or anything — they had to feed her through the IV. So, she was very sick and that’s probably what caused my TCS There’s no one [else] in my family who has Treacher Collins — it can be hereditary, but in my case it was not.

So when I was born, the doctors didn’t know what was wrong with me. I mean, I was quite deformed when I was born. They didn’t know what was wrong with me. They weren’t sure if I was gonna make it. But, you know, here I am, 50 years later.

So, with Treacher Collins, basically you’ll see a deformity of the facial bones. You’ll see underdeveloped cheekbones, the chin, the jaw, there’s downward slanting of the eyes. I was born with cleft palate as well. I was also born deaf. So those are some of the things that you see.

The cleft palate and deafness, how were those reversed over the years?

I had surgeries to restore my hearing, and I had to kind of think about which ear I could hear from; my left ear.

So what happens with Treacher Collins is you don’t have an outer ear canal, so I don’t have that and I don’t have the ear lobes as well. So I have no opening, no ear canal, no ear lobes, nothing to hear with.

So, what the doctors did, and it sounds kind of barbaric, but they basically drilled a hole in my ear. They took skin grafted from my leg to create a sort of ear canal. So, they drill the hole. It’s kind of blind because if you go too deep, you basically hit the brain and cause a stroke — thank God that didn’t happen.

I wore what’s called bone conduction hearing aids for quite some time. I was able to have some hearing in my left ear, and they were gonna try to do the same procedure in my right ear, but because I had so much nerve damage from the Treacher Collins, they did not do the surgery on the right ear.

So, I’m still completely deaf in the right ear. And I wear hearing aids, which helps me to hear. When I tell people that I was born deaf, they find it hard to believe because the first thing they’ll say is, well, “You don’t sound deaf.”

With the hearing aid, I’m able to hear, and I’ve had many, many, many years of speech therapy to help me to speak, because I didn’t speak properly because of the speech delay.

That’s incredible.

It sounds crazy. And that surgery was done in London. I’ve also had surgeries in Jamaica — I think my first surgery was when I was a baby, and it was in Jamaica, but that failed. So they took me to London, which is where I had those surgeries to restore the hearing in my left ear. It was a pretty dramatic surgery, and I had that when I was 3 years old.

Throughout your lifetime, what have been your highs and lows of having this syndrome?

Being born with Treacher Collins was definitely a challenge growing up. It impacted all areas of my life. Thank God I have a very strong, supportive, loving, family, particularly my parents and my siblings.

Growing up with Treacher Collins was not easy at all, because kids are naturally curious, so they’ll stare. And I would know if they stared, and they made fun of how I looked. And I come from a very strong Christian family, so we believe God has blessed us tremendously, regardless of the challenges we have gone through.

I think a lot of times people look at you and they make assumptions about you. Some of the people, even to this day, have gotten it right, and some of the people have gotten it wrong. Particularly in school, teachers would look at me and think I’m not smart. They just have those assumptions about you.

In college, I decided I wanted to become a nurse largely because I had so many surgeries growing up and now I want to help people. I’ve had some phenomenal nurses that helped me, so it was my way of giving back to the community. And I think that’s part of the reason why I’m the type of nurse I am today because of the experiences — especially bad experiences.

I had a lot of bad experiences, a lot of pain so I know that’s not what patients want. I have the empathy and the compassion it takes to really help patients. Being born with Treacher Collins, and all of the surgeries I’ve had, pretty much defined me as a person, and not just as a person, but also as a nurse. I can’t escape having Treacher Collins — it’s who I am. But it doesn’t really define me; what comes out of it is what defined me — a great nurse.

I’m doing well in my profession and I have a wonderful and supportive family. It’s been a challenge. Growing up, I didn’t just see anybody who looked like me,

It was definitely isolating at times, being different, and I have to laugh because I was not an easy kid, especially with my parents. I was a bad kid — I didn’t kill anybody. I didn’t do drugs. I didn’t smoke. Nothing like that, but I was a bad kid, and sometimes I wonder, “Gosh, if I had a child, like me, would I still love them the way my parents, my parents love me? No matter what?”

So, yeah, I was definitely a challenging child, but I would hope my parents think that I’m a much better person now and they’re proud of me, and God has been so good to me.

What are some of the common questions you get about your facial difference?

It’s funny, I’ve had people come up to me, and they kind of make an assumption. They would say, “Oh, were you in a car accident?” And I said, “No.” And then I would tell them, “You know, I was born this way. My mom was sick,” and I would tell them about Treacher Collins. Then, when I tell them I’m a nurse or that I’m in grad school, people are sometimes surprised. There was one person who was like, “Oh, wow, you’re in graduate school. I’m in grad school.”

So, they make assumptions, that I was either in a car accident or I was a burn victim. But this was probably more so the case a few years back —I have not had anybody come up to me in the last year or two.

But, at the same time, I’m OK with it. Come up to me and ask questions. I have no problem with that, as long as it’s coming from a good place. But what I just really would like is for the adults to be role models for their kids. You know, we don’t want kids making fun of people just because they look different, because a lot of times the adults are worse than the kids.

I get really nasty stares from adults — more often than from kids. So, I just hope that the adults would take a moment, if you’re gonna look, look, but just do it for a second, smile, and then look away.

When you say adults can be ruder than their kids, what kinds of behaviors do you wish they would model for the younger generations?

Yeah, that whole dynamic really is such a shame. I would be in meetings at work — this was before the pandemic — and I would look around, and I’m smiling, and then I see adults staring at me and they make faces.

And, to me, that is just so disheartening. You know, they’re making a face, and I just feel like you’re disgusted by the way I look. And that’s very hurtful, so I just want people to understand that people with facial differences have feelings, too.

Treat everyone right, not just people with cranial differences. Everybody should be treated with respect. Every single person deserves to be treated with respect and kindness.

What do you wish people knew about your difference, or what do you wish people could do without you having to tell them?

Just be kind to people and really be the model. If you have nothing nice to saym, just don’t say anything.

My sister, Sarah Cooper, introduced me to this organization, myFace. And the funny story is when she first told me about it, maybe a couple years ago, she had been involved in it for quite some time before she told me about it.

At first, I thought it was like a camp, where you have kids and they paint faces. And I thought, “Oh, that’s really cute, Sarah, you know, that’s nice.” And she’s like, “Yeah, we should do a podcast. You know, we should do something with myFace.

And I was like, “Yeah, sure. OK.” But then as I got to learn more about it, and I did a podcast with Sarah Cooper, and with the director of myFace Dina Zuckerberg, I was blown away with the resources that are available now. And not just for children and adults with a range of facial differences, but also their families and their support systems; their loved ones.

So I just want everyone to check out myFace, Google Dina Zuckerberg, learn more about this wonderful organization that is out there to help people with facial differences and their families.

I just can’t thank them enough for the services they’re providing to people out there. And also, just donate whatever you can donate to this wonderful organization.

What’s something you’d like to tell a young person who’s dealing with a situation that’s similar to yours?

Speak up. Say something. If you’re feeling down, tell somebody. I know growing up, I didn’t really speak up or say anything — I guess my way of dealing with my facial difference was being a bad kid to my parents.

I’ll be honest, I was a handful. But my parents, they just loved me no matter what. They’re just so wonderful. But for anybody struggling right now, say something, whether it’s to your parents, an adult, a teacher, a coworker, a friend, a police officer, somebody — say something to them.

I hear these horrific stories about bullying that’s going on today and kids are dying — they’re committing suicide. It’s horrible.

Anyone who’s out there that is seeing someone being bullied now, I think people are afraid to jump in. Not because they don’t want to, but because of their safety. So if they see somebody being bullied and if they don’t feel safe to intervene, say something, tell an adult.

I’m gonna steal Dina Zuckerberg’s line: Don’t be a bystander, be an upstander.

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