DNA Exchange Blog Post #4: Practicing What We Preach: Genetic Counselors, Disability, and Advocacy

Below is my most recent DNA Exchange blog post. Practicing What We Preach: Genetic Counselors, Disability, and Advocacy

If you want to follow the comments/discussion on this blog post go here.

Disclaimer: I do not consider my deafness a disability, however, society defines it as a disability. Therefore, I utilize quote marks and refer to it as “disability.”

As genetic counselors we are trained to respect and advocate for patients. We are also trained to not to make pre-assumptions about their strengths, skills, and weaknesses. Our training doesn’t always seem to apply outside of the counselor-patient setting.
As a deaf person, I knew it would be a difficult journey when I first applied to genetic counseling programs. Little did I know how difficult it would be as a deaf person to find my place in this profession. Genetic counselors learn about many different genetic conditions and work with many people who have various genetic conditions. Oftentimes these genetic conditions fall under the category that society labels “disabilities.” Even though I do not consider myself to have a “disability,” other genetic counselors sometimes took a different view.
Here are just a few of the barriers I have faced in this field because of my deafness:
• I have been rejected from genetic counseling programs solely because I was deaf.
• When I was invited for interviews for genetic counseling programs, I didn’t always have an interpreter available for the whole interview.
• I was told by rotation supervisors that deaf people should not be genetic counselors.
The list goes on and on but my personal struggles are not the main focus of this post. I just used some of my personal experiences to serve as examples.
Fortunately, these attitudes are not universal among all genetic counselors. I have had some positive experiences during my brief career. For example, I have never had people advocate for me as much as some groups within this field have. It wasn’t until I started graduate school that, for the first time in my life, I truly felt like there were people out there who did want to see me succeed and were willing to go out of their way to advocate for me.
The barriers I have faced within this profession has made me question how genetic counselors truly view people with “disabilities.” It has made me question if genetic counselors feel equal or above their patients who have “disabilities.” Do genetic counselors serve as advocates because of some sort of deep need to help “poor unfortunates” or do they like being in the helper role and not because they truly want to see their patients be successful? This is a very difficult question to ask of the profession and of ourselves.
I am playing the role of the devil’s advocate here. This is not intended to be an attack against the genetic counseling profession. Rather this post is intended to hopefully encourage genetic counselors to question why they may advocate for a person if they’re a patient but not if they’re not a patient. What does it tell us about ourselves? Why does it appear that the role of serving as advocates have boundaries? Where are those boundaries? Should there even be boundaries?
Does it mean society’s attitude towards people with “disabilities” is so powerful and ingrained in us that we have to be specifically trained how to advocate and be on neutral grounds when counseling patients? Does it mean our training is not good enough for it to cross over in all other aspects of our profession?
Is it that “disability” seems to go hand in hand with being a patient and it’s hard to separate those two? Is it time to change our perspectives of people with “disabilities” to more than just patients?
I know it is possible for genetic counselors to pull together and advocate for other people. My question is why doesn’t this happen on a more consistent basis?
Do genetic counselors need to analyze their perspectives on “disabilities” more thoroughly? How can this be done? I would love to see this profession become more welcoming to those with “disabilities” instead of constantly questioning their ability. Oftentimes what one may see as a “disability” is that person’s strength.
I have seen this profession make attempts to make this field more diverse. Usually diversity is thought to include people from different socioeconomic, ethnic, and religion background. Why can’t diversity include people with “disabilities?”
I have learned so much from people within this field who have pulled together to advocate for me when the profession tried to work against me. I want to make this field more accessible to people with “disabilities.” I want to pay forward what I have been given.
I genuinely want to hear your opinion regarding this topic. It’s the only way I can start to understand why there are so many barriers within this profession and why we only seem to apply our training in certain settings (e.g. patients vs. professionals).
Changes won’t happen until we understand. To understand something, we need to explore and question things.

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