Life and Living Challenges

This week, we’re presenting stories about overcoming obstacles and breaking down barriers -- whether those barriers are institutional or written into our genetic code.

Part 1: Aletha Maybank's childhood experiences with institutional racism inspire her work to combat structural barriers as a physician.Aletha Maybank, MD, MPH currently serves as a Deputy Commissioner in the New York City Department of Health and is the Founding Director of the Center for Health Equity.  The Center’s mission is to bring an explicit focus to health equity in all of the Department’s work by tackling structural barriers, such as racism, ensuring meaningful community engagement, and fostering interagency coordination in neighborhoods with the highest disease burden. Prior to this role, she was an Assistant Commissioner in the NYC Health Department and served as the Director of the Brooklyn Office, a place-based approach.  Dr. Maybank also successfully launched the Office of Minority Health as its Founding Director in the Suffolk County Department of Health Services in NY from 2006-2009. Dr. Maybank serves as Vice President of the Empire State Medical Association, the NYS affiliate of the National Medical Association. 

 In the media and on the lecture circuit, she has appeared or been profiled on Disney Jr.’s highly successful Doc McStuffins Animated Series, ESSENCE Facebook live and their Festival’s Empowerment Stage, MSNBC’s Melissa Harris-Perry show, and various other outlets. She has also advised on the award-winning documentary Soul Food Junkies by Byron Hurt and Black Women in Medicine by Crystal Emery. For her accomplishments, she has won numerous awards.

Part 2: Joselin Linder shares a unique and deadly genetic mutation with just fourteen other people in the world -- and must make a difficult choice as a result.

Joselin Linder's work has appeared in The New York Post, as well as on Morning Edition, Joe's Pub, and Life of the Law. er book, The Family Gene, comes out in paperback on June 12, 2018.

When I was four years old, someone asked me what do I want to be when I grow up.  I replied, “I want to work a cash register in a grocery store.” 

Now, my mother was standing close by and she overheard but she didn’t let me know anything at the time.  But that Christmas, Santa brought me a Fisher Price toy doctor’s kit and I wanted to be doctor ever since then.  So I say that my destiny with science actually began as divine intervention from my mother. 

Science was a strong suit for me.  I love science.  I remember my big first science fair that was in sixth grade.  I chose to grow sugar cubes.  I’m very clear at this point in my life you can’t grow sugar cubes, but I didn’t know that. 

So three days before the science fair happens, I have like this gooey mess on strings and I had to figure out what in the world am I going to do?  So I find some Styrofoam in my home, I cut it up in a cube, literally, dip it in glue, dip it in sugar, tie a string around it, hung it from a glass and, voila, sugar cubes. 

The night of the science fair, I’m standing by my desk.  Teachers were passing by, parents, my mother was passing by and I am so sure somebody is going to figure all of this out.  So the night comes close to an end and nobody did.  So nobody knows that you can’t grow sugar cubes, clearly.  I ended up actually getting an A on the project. 

I thought the night was over and this was great.  So we’re walking out of the school to my mom’s car on our way home and all of a sudden I hear a loud, familiar voice of one of my classmates yell, “Chocolate world,” at my mom and I. 

Now, to provide a little context, I grew up in the suburb of Harrisburg Pennsylvania and everything Hershey, Hersheypark, Hershey Chocolate World, Hershey Hotel, you name it.  Hershey was about 15 minutes from my house. 

And the neighborhood that I grew up in was predominantly white.  We were the only black family.  The school at that particular time I was one of the only black kids in the sixth grade class.  So clearly, my skin reminded this little boy of chocolate, which may not seem like a totally big deal, and I want to say that that’s not the worst that I had been called in school, but to a 12-year-old little girl who just wanted to fit in, it was. 

This wasn’t the first time that he called me it.  It was like the hundredth time.  And each time it was at the indifference of teachers, each time I was utterly embarrassed and I just wanted him to stop.  This time was the first time that my mother was with me.  I wasn’t alone and I wasn’t unarmored. 

So my mom grabbed my hand, darted back into the school, down the hall, into the classroom and found him underneath a desk.  He peered out from the desk and my mom bent over and she said, and I don’t mean this toward you, but, “How would you like it if I called you white trash?” 

Now, I had no clue what white trash meant at the time, and I didn’t think it was really important.  I was just happy that I had somebody with me to defend, to speak up, and to advocate on my behalf.  This wouldn’t be the first time or the last time that my mom came to rescue my dignity.  It actually became quite habitual out of necessity. 

There were multiple times in which she had to go to the school and she was very clear that the educational system was undermining and underselling my own potential.  There were letters and phone calls and visits for things like, “Why is Alethea placed in the remedial reading group,” or telling the guidance counselor, “She is going to apply to more colleges than just those safe schools that you recommended.”  Or in twelfth grade her having to sign a letter stating that if I failed AP English it wasn’t the school’s fault, and no other parent had to do that.  This kind of advocacy and interaction happened until the very end of school. 

A week before my senior year was over, it was announced that we would have our first multi-cultural day in high school and I was super excited.  We had never had a day like this before.  I was even more excited because they asked me, the leadership, to organize the African-American table. 

The day came and myself and two other classmates of mine organized the table.  It was great.  With the exception of the watermelon plate that was placed in our table without asking us, it was all good. 

We had this flyer on the table that said, “Racism still exists.  Beware.” 

A few students came to me and said, “Hey, can we have copies of this?”  And I said, “Sure.  Sounds great.” 

I go to the secretary’s office, I ask her could she make copies.  She says yes.  She doesn’t ask me any questions.  She makes the copies, I take them and I put them back on the table. 

The next morning, I got called to the principal’s office out of that same AP English class and was told to sit down.  The principal told me that skinheads came to him and said that if they are not allowed to pass out their materials and paraphernalia, why are they allowed to pass out theirs?  So the principal thought that the most equitable thing to do was to give me in-school suspension for failure to get permission to make copies. 

My mom tried to fight it at the superintendent level but lost.  So while most seniors are very excited at their very last day of high school, my very last day of high school I sat in in-school suspension very confused, upset, and very clear that I would never step foot in that school again. 

I wasn’t a problem child.  I was considered a leader in many ways.  But what I did learn is that no matter how good I was, that if there is a more powerful, more privileged system and people who thought I wasn’t good enough, they were going to tell me so and they would do whatever it took to block my own blessings. 

I learned that fear silences people.  There were many opportunities where parents, teachers, and other students could have spoken up and advocated along with my mom that this wasn’t right, but they didn’t. 

And I also learned that advocacy does not always yield the results we want when we want them.  But what I mostly, mostly learned was just really from watching the courage of my mother in that moment. 

So I went on to college.  I graduated from one of the top universities in the country with a concentration in natural sciences, public health.  I went on to medical school and then I went on to residency, pediatric residency.  I chose pedes because I love children.  There's no real profound reason except for I just really love children. 

But every Thursday when I was a resident, I would have to travel from the affluent area of where my hospital was for residency to a poorer neighborhood in New York City.  It was predominantly black and plagued with the same familiar ills that most poor neighborhoods are that have experienced and have gone through cycles of disinvestment. 

On this one particular Thursday, in the usual fashion, I walk up to the door.  I take off the chart, and I walk into the room.  All of a sudden, I’m physically struck by the physical size of the family that’s sitting in front of me.  It’s a mother and her two kids, one girl, one boy.  The 13-year-old girl, she weighs probably about 240 pounds and the boy weighs almost the same.  He's 10 years old, weighs about 239 or 238 pounds.  The mom I couldn’t weigh her because she's not my patient, but she would have been identified at morbidly obese. 

When I looked down at the chart, I could see that there had been recommendations for sending these children off to a weight loss intervention several times.  But then there was another note that said the insurance doesn’t cover it, which was Medicaid, so essentially there really was no plan for this family. 

As a doctor, in doctor fashion and what we do, I said, “Well, let’s figure out a plan.” 

So our plan consisted of eating healthy foods, how we’re going to do that, and then also how we’re going to do more physical activity.  Then I thought it would be really good if we brought them back every single week and did weight checks. 

The next week, the week after that and the week after that, they came back.  We did the weight checks but, of course, there was no weight loss.  What was revealed to me with every single visit was how clueless I was into the realities of this family’s lives, because I didn’t grow up in that particular neighborhood. 

And with every suggestion that I provided, there was a counterpoint by the mother that absolutely made a lot of sense of why she couldn’t follow through, such us, well, the fresh fruits and vegetables really weren’t that much in the neighborhood.  She couldn’t afford them.