Practicing What We Preach: Genetic Counselors, Disability, and Advocacy

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.


Filed under Kelly Rogel

15 responses to “Practicing What We Preach: Genetic Counselors, Disability, and Advocacy

  1. Ronit

    Great post, Kelly! I, as you know, have had very similar experiences during my training and quest to find my place in the genetic counseling profession. Because of my blindness, it has often been assumed by healthcare professionals that I cannot be a genetic counselor because of my blindness. Yet, there have been many people who have advocated for me and who have worked with me to help me advocate for myself. I am grateful to these people. I think you bring up a good point though about how do genetic counselors really view disabilities? How do they view themselves in relation to people with disabilities? I think alot of the problem is that genetic counselors and other people too, don’t know enough about what it is like to live with a disability. Fortunately, trainig programs now are including this as an important topic in their training but this was not always the case. I think we still have a long way to go in educating our own profession about what it is like to live with a variety of different disabilities. Having this knowledge makes it more accessible and I think will make genetic counselors view disability differently and will encourage them to advocate for people with disabilities more. It’s hard to dispel a lot of negative ideas about having a disability, but I think being a genetic counselor is one way that I am trying to do that.

  2. Meghan

    Thanks for posting this Kelly, and I think Ronit hit the nail right on the head. Most people, including genetic counselors, don’t know what it is like to live with a disability. Perhaps this needs to be utilized better in our training as GC and become a mandatory part of the criteria for accreditation. How can we advocate if we have only a faint idea who we are advocating for? Some (but very few) programs have implemented this type of training beyond that of having a single family talk about their trials and tribulations of raising a child with a disability. There is a definite need to expand our perception and knowledge about disabilities to better ourselves as genetic counselors and as human beings.

  3. Megan

    I can only think of one reason someone might think that a deaf individual would not make a good genetic counselor, and that is the rapport that must be built with a patient. I am not trying to imply that you or any other deaf individual would not or could not build just as much rapport with a patient as I could as a hearing person, but using an interpreter during a session always put some strain/limits the relationship that is built. I would assume (always a bad idea) that that same strain on the relationship would be there whether the interpreter is needed for the patient or for the genetic counselor. Just a thought.

    I also feel, however that receiving a genetic counseling from someone with a disability, whether it be physical or not could definitely be an advantage especially in a pediatric setting where families are often discussing issues regarding their child’s future (or adult setting). We always try to discuss with families that no one should put limits on what their child is capable of doing and actually seeing a professional adult with any type of disability, I think can be very inspiring for parents.

  4. Stephanie

    Thanks so much for sharing your insights, Kelly. I appreciate the opportunity to have this discussion. I am the parent of a child with a disability, and it has been an amazing journey to “be on the other side” so to speak. One thing that shocked me was the view of the disability community regarding genetic counselors. I hate to tell you this folks, but as a group, we are not generally well thought of. Particularly among parents of children with disabilities, there is a common perception that genetic counselors exist to make sure that no more children like theirs are born. I would love to see genetic counselors become more involved in their disability communities outside of a work setting – adovocating, volunteering and learning from these families. We are compassionate professionals toward the families that we serve; let’s take it the next step and get to know our disability community better.

  5. Heather

    As a disclaimer, I must admit that I am a graduate of the Indiana program and am a huge fan of Dr. David Weaver and the training he provided for the genetic counselors in that program. One of the most vivid memories I have is a series of three weeks of our clinical prep meetings. The first one we had to conduct the meeting with earplugs in. The next, we had to conduct the meeting with glasses that restrict vision. The third we had to use both. By that third meeting, nothing of any consequence got done because we were all struggling with our limited senses. It did teach a powerful message of how you can be an intelligent person and have a “disability”. It also taught me how much I take for granted everyday. This lesson has helped me through the years to better understand, sympathize with, and care for families with “disabilities”. Thank you Dr. Weaver (for this and many other things!!). I agree with Stephanie that we are often not well regarded in the disability community and there is good work that can be done through outreach.

  6. Ronit

    Yes, echoing what Stephanie and Heather have said, when I told the blindness community that I wanted to become a genetic counselor, many people were upset and worried about this decision. I had to defend why I wanted to do this, it was not to make sure no other people with disabilities were born, it was to help advocate for people with disabilities and most of all to educate others. I agree that we need to do alot of outreach as genetic counselors to the disability community in order to help dispel negative views about our profession.

  7. Kami

    We all have many things (gender, race, religion, culture, personality, abilities, etc.) about us that may keep us from developing rapport with certain patients, and other things that may help us. It is essential that we continue to diversify our profession so that we are able to best serve patients from all communities. While having a “disability” may make rapport building difficult in some settings, it can be a huge help in other settings. What if a family with deafness only wanted to see a provider with deafness and there was nobody in the genetic counseling profession to provide that service?

  8. Sarah

    I’m a Genetic Counsellor from Australia and found this post really thought provoking and interesting. I’ve only had one Deaf client and found the session interesting and difficult, although the interpreter was lovely. (For me eye contact was a big barrier as the client was watching the interpreter and not me!). It was a real challenge. I think if a GC could do do that everyday because of necessity then they must a pretty amazing person. I also rely a lot on visual aids, so I think discussing how a visually-impaired GC runs an appointment would be really useful. You’ve defintiely given me a lot to think about!

  9. C

    I’m going to say something controversial, that many of us don’t admit publicly. We tend to be harder on students than anyone else, even when what they need are advocacy and guidance. My guess is that all of have been treated differently and with more respect and have received more support from our colleagues than our supervisors.

  10. Catherine

    This is a very interesting and important topic to discuss within the genetic counseling community. Not only to realize we need to do more to advocate for our profession and to show the public that we aren’t against any child with any type of disease or disability, but also to support the diversity of our profession. Counseling in general is built around conversation and rapport with others. It is possible that some people feel that the core of establishing this relationship with a patient is impaired when someone has to use a different form of communication. That being said, it is also important not to speak for our patients. It is very possible patients might feel they are at no disadvantage when speaking to a trained counselor who happens to need the help of an interpreter. As a field that is supposed to be based on advocacy, it is important to practice what we preach. If we are accepting of all people with all types of differences then that should be reflected in those who represent our profession.

  11. Kiana

    Kelly, Thank you for this interesting blog. I had a little time one day and peaked at your other blog and enjoyed reading about your experiences. I think you ask some great questions about “disability” and advocacy. I will be considering my thoughts on those for some time from now! I have hope that advocacy and awareness is increasing. I won’t forget the day in undergrad that our architecture profs assigned different students wheel chairs or crutches to bring home the message of making buildings easily handicap excessible. Campus looked different that day and my peers talked about that experience for some time. I guess in many ways we need to look at the “accessiblity” of working in and being a part of our profession. Anyway, Thank You!

  12. Tam

    Really enjoyed this read. I think this is a huge challenge. Diversity for sure. People practicing need to rethink their role and how they position themselves.. Do you write elsewhere Kelly?

  13. Ben

    Hi, I realize that this is an old post, but I figured i’d respond on the off chance its still monitored.
    Would you say attitudes towards disability from other GC’s have changed since this was written, I ask as I suffer from cerebral palsy (albeit mild compared to others) and intend to apply for GC training next year. I wouldn’t be surprised to hear that they haven’t, as I don’t think society truly understands disability, more often than not they see it as something to be pitied.
    Furthermore, how would you describe your experience counselling patients who themselves are disabled, as the literature I’ve read suggests that many in the disabled community are at odds with genetic counselling, believing that its intention is to remove disability. Obviously, this is not the case, but I imagine it would make the session difficult.

    Thanks, Ben.

    • Jessica Jonas

      Hi Ben, I honestly do not know if attitudes towards disability from other GC’s have changed since this post was written, but I would encourage you to apply to GC programs next year. I would hope that most (if not all) GC programs see the advantage of having a diverse class of students, and that diversity includes ‘disability.’
      When I counselled patients with a (known) disability, I found that the sessions went well when I did what I do with every patient: find out in the beginning of the appointment what the patient’s understanding is of why she/he is there, and what their goals are for the appointment. For instance, if a patient who has neurofibromatosis type 1 and is pregnant communicates that her understanding is that her doctor has referred her so that she can find out if her fetus will have NF1, but that she has no interest in this, it would be important to emphasize that we are here to give patients all of their options (and not just with regard to NF1), but that our goal is to have the patient decide what she does and doesn’t want in the way of screening and testing.

  14. Pingback: Anonymous Guest Post: Being A Genetic Counselor As Someone Affected by Mental Illness | The DNA Exchange

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