Appropriate way to discuss genetic conditions in a large lecture?

Poking around the LPA website, I found a list of discussion groups. I think that making a post there would be an excellent way to get feedback from people with the condition and get questions about terminology, etc. answered. The best way to design sensitive education is with the input of the people who it affects. I would also recommend calling LPA and asking them if they have any reference materials that they would encourage you to read.

This essay about where to draw the line when it comes to eugenics, written by a little person, might be a good thing to read before talking about that topic.

This profile of a late Harvard Law professor who was a little person might be another good person to talk about as an example of someone who has led a successful life. However, you should be careful with the tone of stuff like that. You don’t want to present it as “look! Some little people can manage to lead regular people lives!”

There are several aspects to this:

• terminology

• how to show that when you're not talking genetics, you see the person first, and the genetic make-up second

• how not to put your foot in your mouth and inadvertently say something offensive

• how to be an ally

As the parent of a child with Tourette Syndrome (TS), when I go to scientific talks about TS, I'm listening with both intellectual curiosity and an ear for information that will be useful for me -- to improve our quality of life, help me advocate for my child, and help my child advocate for himself. I like it best when the tone is neutral. I hate anything that suggests that people should feel sorry for a person with Tourette. If the speaker is naturally a person who's good at seeing the humorous side of life, I enjoy that -- but it's not necessary.

Terminology: In general I like disorder, condition, trait and anomaly better than disease, but whenever I can I use the word difference. In his case it's a neurological difference. In some sentences the plural fits better (differences, neurological differences). When I'm advocating for his educational rights, sometimes I need to use the word disability because this word is effective in that context. Note that person with a disability sounds neutral to me, whereas disabled person has negative connotations.

I think it's fine to include images and short biographical sketches of famous people with the condition you're going to talk about, but I would put those in the beginning, where they will give your general audience a positive image of what you're talking about. If possible, try not to have only one famous person with achondroplasia.

You can also include images that differentiate between achondroplasia and other forms of dwarfism.

It might be interesting to talk briefly about how scientists' understanding of dwarfism has changed over time, and how medical management has changed. For example, you mentioned the lower probability of survival and reproduction. Have these probabilities changed over time? If so, what has helped?

If there are terms that hurt, that were used historically, I would advise you not to mention them at all, even if you're talking about how things have changed over time. Keep your language positive.

If there are any take-home messages from the science that would be especially interesting for those with a personal interest, they would give you a nice note to end on. But it's also okay to end with pure science ideas.

You mentioned you had a student with this trait in your classes recently. If there's enough lead time, perhaps you'd like to invite him or her to co-present with you. I mean, just ask if s/he would be interested -- with no pressure.