Thread by @sarahlovesears

This is a thread about accuracy of information in both academic papers *and* media reporting on academic papers, and it's going to open a can of worms. I'm afraid people are going to be angry with me. Please read the whole thread before you start eviscerating me. 1/22

Because of that, I'm going to state a few things upfront: 1) I come to this conversation from the perspective of a 3rd year AuD student. 2) I come to this conversation as a deaf person. I wasn't born deaf. I have a progressive hearing loss and was hearing for many years. 2/22

3) I'm a bilateral CI user, and I've had 2 very different outcomes with my 2 CIs, but I'm glad I have them. 4) I'm a (clearly non-native) signer, and I am in 100% support of deaf and hard of hearing children having full access to sign languages. Those are my relevant biases. 3/22

This morning, I saw a thread posted by a friend. The content was a claim I'd seen before but hadn't had time to research further until now. I've seen this claim a lot on social media recently: "47% of 20,000 deaf children implanted since 2000 no longer use CIs." 4/22

My friend quoted the following article from The University of Chicago School of Social Service Administration Magazine as a source for the claim:
ssa.uchicago.edu/ssa_magazine/s…

5/22

I looked up the journal article referenced in the magazine article. Citation:

Humphries, T., Kushalnagar, P., Mathur, G., Napoli, D. J., Padden, C., Rathmann, C., & Smith, S. (2016). Avoiding linguistic neglect of deaf children. Social Service Review, 90(4), 589-619.

6/22

Sure enough, the claim is right there in the article. Here's a screenshot. The article says, "In a survey of over 20,000 deaf children implanted since 2000, 47% had stopped using their CI (Watson and Gregory 2005)" (Humphries et al, 2016).

7/22

Logically, my next step was to look up Watson & Gregory (2005). Here's the citation for that one:

Watson, L. M., & Gregory, S. (2005). Non-use of cochlear implants in children: Child and parent perspectives. Deafness & Education International, 7(1), 43-58.

8/22

What Watson and Gregory (2005) say is that by the end of 2000, there were 20,000 pediatric CI recipients. Non-use for the Nottingham CI Programme was 3 of 320 at 5 years post-CI. They cite a 1996 study stating that 47% of pediatric CI recipients in the USA were non-users. 9/22

My next step was to look at the 1996 study with the 47% figure to see where it came from. Here's the citation for that study:

Rose, D. E., Vernon, M., & Pool, A. F. (1996). Cochlear implants in prelingually deaf children. American Annals of the Deaf, 141(3), 258-262.

10/22

Rose et al. (1996) describe a survey of residential day schools for the deaf where 70% of schools responded. The authors do not mention if oral/aural schools were included. At these schools, only 47% of the 151 implanted children were still using their CIs. 11/22

I am not assuming malicious intent at all, but I wonder how the authors of the 2016 article managed to get a survey of 20,000 kids from a survey of schools where only 70% responded and only 151 implanted kids were identified. 12/22

Evidence from the 1996 study's described survey is nowhere close to sufficient for making the claim that only 47% of 20,000 kids implanted since 2000 still use their CIs. Given where CI technology was in 1996 and earlier, the figure from the 1996 study should be surprising. 13/22

Think about when those kids were implanted and how old they must have been, given that pediatric CIs were new in the late 1980s and early 1990s. And again, the 1996 study doesn't mention whether oral/aural schools were included. 14/22

Providing correct information on CIs and CI users is incredibly important. When we don't, it hurts D/HH CI users, D/HH non-CI users, D/HH children whose parents are considering CIs, *and* our efforts to support sign language access. 15/22

The claim from the 2016 article is easily researchable, if one has the time and access to databases of scholarly articles. But not everyone does. Most parents don't. Giving them incorrect information when they don't have the resources to confirm or refute it isn't fair. 16/22

Again, I don't assume malicious intent on the part of the authors. I am 100% in support of sign language. If I didn't have ASL, my own life would be a *lot* harder. And this is coming from an adult CI recipient who has demonstrable CI benefit. I want D/HH kids to have ASL. 17/22

But there are ways to promote ASL access for D/HH children that do not involve the unintentional spread of false information about CIs. We have to do better. How am I supposed to make a case for ASL to my AuD colleagues if my go-to resources have false information? 18/22

I wrote this thread only because I've seen this coming up a lot on social media lately, and I believe people deserve to have correct information and to know where figures come from. I didn't want to open a can of worms on the Sunday morning of my spring break. 19/22

But I have to admit, I'm angry that I had to chase this information up for myself. I shouldn't have to do that. Other professionals and parents shouldn't have to do that. The authors of the 2016 article should have done it before publishing. 20/22

And yes, I realize that pro-CI articles can have misleading information too. I've seen plenty of those as well. There is no convincing evidence that sign language is harmful for CI users, and when I see those kinds of claims you had better believe I'll call them out too. 21/22

So I guess that's it. Now that I've written this, I'm really anxious and afraid. I don't want what I've said to be taken out of context. This is not a pro-CI, anti-ASL thread. This is a pro-correct information thread. Children and parents deserve that. 22/22

Also, if anyone wants these papers and doesn't have access to them beyond my screenshots, please DM me. I'm happy to send them to you so you can see for yourself.

Typo here. I meant to say "residential and day schools." The "and" got left out.

Another typo. Should NOT be surprising.

Lastly, there are a couple of typos in this thread. "Residential day schools" should read, "residential and day schools." And "should be surprising" ought to be, "should NOT be surprising."