Braille Monitor                                                 November 2012

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My Journey to Genetics: Changing What it Means to Be a Blind Genetic Counselor

by Ronit Ovadia-Mazzoni

Dominic and Ronit Ovadia-Mazzoni and their son AlexFrom the Editor: Ronit Ovadia was a 2005 NFB scholarship winner and is a former member of the National Association of Blind Students board. She currently lives in California with her husband and son. In this article, which first appeared in the Summer 2012 Student Slate, she talks about her unique career choice and the techniques she uses to accomplish her goals.

The first question people always ask me when I tell them I am a genetic counselor is "What is that, and do you counsel genes?" The next question is "And how do you do that as a blind person?" Before I talk about being a blind genetic counselor, I'd like to give a quick description of what a genetic counselor does. We are healthcare professionals who talk to patients about genetic risks for themselves and their family members. There are three types of counseling: prenatal, pediatric, and cancer. In prenatal counseling pregnant patients are told of the risks for birth defects for their child, and, if there is a test which indicates a higher risk for a genetic condition, counselors educate them about these risks and offer further testing. In pediatric counseling children with developmental delays or medical problems suggestive of a genetic condition are evaluated and tests are offered. In cancer counseling families are evaluated for a possibility of a genetic predisposition to cancer.

I found out about genetic counseling in high school, and, after job shadowing a genetic counselor to learn more about the profession, I decided that I wanted to pursue this as a career. In college I majored in biology and psychology to prepare myself for a master’s in genetic counseling. I went to Northwestern University for my master’s and spent two years rotating through various hospitals and clinics getting my training. I then worked for two years in a prenatal clinic in southern California before deciding to take a short break to stay at home with my son, who was born last year.

So how do I perform the visual parts of my job? Actually, genetic counseling is mostly nonvisual; however, some things do make it a little more challenging. For example, genetic counselors obtain family history information from patients and are expected to draw a pedigree, which is a visual representation of this information. The pedigree has circles representing females, squares representing males, and lines connecting the people to show relationships. Text is written to describe any medical problems that may be present in the family. In order to do this, I asked my now husband, who is a computer programmer, to write me a program to create these drawings for me based on the text information I enter. The program creates a drawing which can be printed out and put in the patient's chart.

The only other issue that sometimes comes up is obtaining information from patient charts. Depending on whether the chart is electronic or on paper, I use a combination of technology, scanning, and hiring a human reader to read to me. During my two years at my first job, I hired a reader who helped me with this task. I worked at a very busy clinic, seeing twelve to fifteen patients a day, which is quite a lot for a genetic counselor.

The most challenging part of being a blind genetic counselor is not the logistics of the job itself. Rather, it is convincing others that I am capable. Disabled people who work in healthcare are not very common, so most people don't have a lot of experience with capable disabled people. In addition, the medical model is to cure disabilities, so naturally most people think that a blind person would not be able to work in a healthcare setting. In addition to wondering about how I use computers and read charts, people are always curious about how patients react to having a blind genetic counselor. This has been a positive for me because I am able to provide details from my own life which help patients realize that disabled people can live full, productive lives.

Constantly having to convince others that I am capable can get exhausting, and I often have to step out of my comfort zone and act confident even when I don't feel it. However, I always try to keep in mind a few things. First, I always have the National Federation of the Blind as a support network. Second, I never lose sight of why I entered the field in the first place: because I love science, and I want to help people understand their medical situations and make informed choices. Whenever I get frustrated, I remember that my determination has gotten me further than I ever thought possible, and I want to be a successful genetic counselor more than anything. I hope that, after reading my story, you too will have the courage to dream big and have the determination to follow those dreams because as blind people we can do anything we set our minds to.

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