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

By: Kiana

Kiana — Thu, 28 Jan 2010 21:55:10 +0000

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!

By: Catherine

Catherine — Tue, 22 Dec 2009 13:38:21 +0000

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.

By: C

Thu, 17 Dec 2009 17:16:23 +0000

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.

By: Sarah

Sarah — Thu, 17 Dec 2009 03:57:06 +0000

Hello,
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!

By: Kami

Kami — Wed, 16 Dec 2009 19:37:00 +0000

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?

By: Ronit

Ronit — Tue, 15 Dec 2009 21:37:50 +0000

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.

By: Heather

Heather — Tue, 15 Dec 2009 16:57:11 +0000

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.

By: Stephanie

Stephanie — Tue, 15 Dec 2009 16:36:54 +0000

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.

By: Megan

Megan — Tue, 15 Dec 2009 03:00:15 +0000

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.

By: Meghan

Meghan — Tue, 15 Dec 2009 02:35:19 +0000

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.