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I want to cover the topic of achondroplasia, the most common form of dwarfism, in a large introductory biology lecture. How can I discuss it in an appropriately sensitive way, one that respects people who have the condition or are close to people with the condition? I'm used to lecturing about sensitive but biologically relevant topics like race, incest, and "extra-pair copulation" [mating outside of a socially monogamous pair, which would be adultery in a human context], but these are topics that are applicable to a broad audience. In this case I'm more worried about offending or annoying particular individuals. (I may be feeling particularly sensitive about this because I've had a little person in a couple of my other classes in the last few terms.)

  • the talk page for the Wikipedia article mentions that what to call achondroplasia ["a medical condition, disorder, disease, disability, or none of the above"] is controversial; "condition" feels most neutral to me.
  • the online FAQ for the Little People of America doesn't say much more than

    Such terms as dwarf, little person, LP, and person of short stature are all acceptable, but most people would rather be referred to by their name than by a label.

    (this is in a section explaining that "midget" is considered offensive).

For what it's worth, I'm going to be discussing the rate of mutation in the gene responsible for the condition; the strength of natural selection against the condition; and how we can calculate the expected frequency of the condition in the population from this information. This does raise some potentially problematic topics (such as the lower probability of survival and reproduction). In the past when I've covered this topic, I have mentioned Peter Dinklage, a little person who has been both professionally (Emmy-award-winning) and reproductively (he has a child) successful.

The reason it's worth discussing achondroplasia in class is that it's a surprising example of a deleterious, autosomal dominant genetic condition that's maintained by pure mutation-selection balance (i.e., we don't know of any counterbalancing selective advantages that would have caused it to stay in the population).

Any suggestions?

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    I think this is a great question and I'm interested in seeing what others have to say. It might be helpful to know what aspect of biology you plan to address when covering achondroplasia and why you are choosing that particular example. And although you mentioned concern about offending or annoying particular individuals, I think the most likely pitfall is going to be the risk of singling out one individual - similar to talking about race in a room with 1 black person and 99 white. Thanks for all the time you've put towards helping SE users with mixed models and R and welcome to Academia.SE. – Bryan Krause Feb 9 '18 at 0:06
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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.

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  • This is all useful. A couple of quick responses: (1) this material only takes up about 5-10 minutes of lecture time, so going into more detail (e.g. achondroplasia vs other forms of dwarfism) might not be an option. (2) I did think about running this by my former student, but I thought it might be creepy/too personal to ask them about it (due to power imbalance, age difference, gender difference) ... – Ben Bolker Feb 16 '18 at 16:17
  • @BenBolker - (1) I see, I thought it was the topic for a whole lecture. (2) I would disagree if it were a longer chunk of time. In my case, I would jump at any chance to present to people about Tourette Syndrome. And I hate it when people see my age or my gender before they see me as a person. But the bottom line is that it's only 5 or 10 minutes, so I'm not sure if an invitation would make sense in this case. – aparente001 Feb 16 '18 at 16:23
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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!”

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  • Unfortunately, "was." Paul Miller passed away in 2010. – Azor Ahai -- he him Feb 9 '18 at 19:54

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