Another special person talked with Chris Ulmer
What has Chris Ulmer caught on his camera this time?
Having seen him on the intertubes, some readers may recognize Christopher Ulmer as the creator behind Special Books by Special Kids. They’d be right. One might also recognize Nick Smith, because he has an intertubes presence; Mr. Smith is a 32-year-old adult who has microcephalic osteodysplastic primordial dwarfism.1
Mr. Ulmer is the unfailingly friendly, upbeat, and positive guy who’s reported scores of interviews with individuals with disabilities. In mid-August 2024, Mr. Ulmer published a new interview with Mr. Smith (and his mother) who has participated in previous interviews. Even if you’ve seen previous installments, this one is worth a watch.
Even though this video is not about a child nor about special education, it is about a person with a disability. Through Mr. Ulmer’s lens, one can see some aspects of Mr. Smith’s disability, but the overriding view is of Mr. Smith’s humanity. That view is quite consistent with one of the purposes of SET: helping readers understand that individual people with disabilities are people.
Some may object that there is something of the minstrel show inherent in Mr. Ulmer’s video interviews. To be sure, some of what we see is people showing off for the camera. I think that view just strengthens the case. People clown for cameras all over the world. Just watch the crowd shots at sporting events to get the idea.
For those who want to learn more about him, Mr. Smith has an Instagram presence called “theofficialnicksmith” (as does his mother, Patti Knick, on Facebook). Many news organizations have covered his story, too.2
Mr. Ulmer has amassed an extensive catalog of video interviews. After beginning by creating videos of students in his special education classroom, he founded a non-profit—SBSK—to conduct and publish additional videos.
Starting in 2016, SBSK is now a 501(c)3 organization that seeks to normalize the diversity of the human condition under the pillars of honesty, respect, mindfulness, positivity and collaboration. This multi-media movement supports the acceptance and inclusion of all members of the neurodiverse/disability community regardless of diagnosis, age, race, religion, income, sexual orientation, gender or gender expression.
To see additional videos in Mr. Ulmer’s catalog, see the YouTube entry for Special Books By Special Kids. Advocates and professors, especially, should find this resource quite valuable. Folks can learn more about Mr. Ulmer’s work from his own video about the history of the project (subcaptioned in French) and from a Wikipedia entry about him. If you watch the history video, you’ll even learn why the video series isn’t actually a book series.
Footnotes
Right. This disorder has a host of different names, including Majewski osteodysplastic primordial dwarfism type II, PCNT-related microcephalic osteodysplastic primordial dwarfism. It is frequently referred to by the acronym, “MOPDII” (or 2 in place of the Roman numeral). See Microcephalic Osteodysplastic Primordial Dwarfism Type II in addition to the reasonably good Wikipedia entry, Microcephalic osteodysplastic primordial dwarfism type II. There are multiple subtypes of MOPD, so see listing at the Rare Disease Database.
Here are two links to a older media reports: “Aged 21 but just 35 INCHES tall: The man with a rare form of dwarfism which makes him the size of a three-year-old” by Sarah Griffiths from the UK Daily Mail; “Primordial dwarf looks up to 6ft 5in brothers - who tower over his tiny 35 INCH frame: Despite being 21 years old, Nick Smith weighs only two stone and is the size of an average three-year-old, making him one of the world's smallest men,” by Natalie Evans of the UK Mirror;