Continuing my closer look at some of the news items from our recent news roundup, I now turn to three items that focus on the son of Cincinnati radio personality Jenn Jordan. The first is an April 10th interview on WLWT News 5 Today (a news station out of Cincinnati) entitled Son of Cincinnati radio personality defying the odds during Autism Acceptance Month.
The
focus of this interview is Jenn Jordan’s non-speaking, autistic son, Jakob, who
is described as “using his platform to defy the odds.” But even though he’s
right there, sitting next to his mother, Jakob’s platform does not include this
interview. Instead, Jenn is the one being interviewed. Jakob’s “platform “turns
out to be S2C, described here as “communicat[ing] through spelling.” During the
interview, Jakob is almost entirely silent. It’s hard to tell whether he’s even
attending: he rarely directs his eyes towards the interviewer or his mother.
And, for reasons that we learn only later in the interview, no S2C occurs here,
nor are there any letterboards in sight.
Referred
to mostly in the third person, Jakob is described as having been “diagnosed
with autism and apraxia.” And while there is little doubt autism diagnosis, the
basis for the apraxia diagnosis remains unclear. According to Jenn Jordan:
The
apraxia causes a brain-body disconnect. And so the body doesn’t do what the
mind wants it to, including speaking, including trying new foods. Refusing to
try anything new.
There
are various types of apraxia with varying diagnostic symptoms, but none of them fit Jordan’s
description. Being minimal speaker doesn’t suffice. Nor does apraxia
involve not being able to try new things. Finally, the notion that Jakob has
some sort of brain-body disconnect is belied by the 10-second clip we see of
him, 2 minutes into this segment, performing a series of complex dance
movements in synchrony with the people around him. In addition, at the end of the
video, we hear Jakob utter words that sound like “What date?,” and that his
mother interprets as Jakob intentionally asking when the movie he’s staring in
will come out (more on that below). Even Jakob’s speech, minimal though it may
be, appears to be under intentional control by Jakob’s brain.
Nonetheless,
in an eerie echo of Isaiah’s story in Disability Scoop (see my previous post on
that), Jakob’s S2C-generated messages informed his mother that:
he
was tired of eating the same old stuff, he wanted to try new stuff and he told
us exactly how to help him. Since then he has tried over 160 new foods.
It’s
interesting to see, both in this news item and the earlier one on Isaiah, a
purported apraxia/mind-body disconnect being used to explain, not just Category
A of the diagnostic symptoms of autism (the communication challenges), but also
Category B (the restrictive interests). Though this is the first time I’ve seen
restrictive interests re-analyzed as a motor disorder, it’s completely
consistent with the decades-long goal of FC-proponents to redefine all of
autism as a motor disorder.
Jenn
Jordan goes on to explain that “If you want different results you have to do
things differently,” and to recount how, after Julie Sando from Autistically Inclined (on our list
of S2C-providing organizations) introduced S2C to Jakob:
It
became very clear very quickly that the intellectual disability he had been
diagnosed with was completely a mislabeling.
And
thus, yet again, we see the deeply ableist, anti-intellectual disability
sentiments that underpin parents’ and proponents’ beliefs in S2C.
As
for Jakob, he doesn’t appear responsive even when the interviewer addresses him
by name—until his mother responds by turning to him and making physical
contact. She seems to do this reflexively each time the interview addresses her
son directly. Why doesn’t she instead hold up a letterboard for him and
facilitate out messages? Eventually we learn the answer:
This
is so very hard for him because there is so much in here that he wants to say
and someday he’ll be able to do it with me. We’re working on it.
The
reason there’s no letterboard or S2C here is that Jakob is unable to do it with
Jenn; or, perhaps more accurately, Jenn is unable to do it with Jakob. Why she
didn’t bring along Jakob’s communication partner is left unclear.
Jenn’s
inability to do S2C with Jacob recalls the Talia Zimmerman story (see here), in
which we learn that those subjected to RPM/S2C “are far more proficient at
spelling when they’re working with their professional partners than with
parents, siblings and others.” As I noted in that post, in comparison to most
facilitators, who bypically have months or years of experience cueing multiple
people, parents are comparative novices.
Towards
the end of the interview, we learn from Jenn Jordan that Jakob was
recently
contacted by a Hollywood casting director who saw his Cards by
Jakob page on Facebook and asked if he would be interested in auditioning
for a film.
Ultimately,
Jakob landed a leading role, and a subsequent news segment us more about
this—namely, a June 5th segment on a much more prestigious platform: NPR Weekend Edition.
This
segment, entitled Two
nonverbal actors star in a new opera — with an assist from AI, includes not
just Jakob, but a second non-speaking actor with cerebral palsy. And rather
than spelling out the details of how, precisely Jakob communicates, it focuses
instead on
- the novel
elements of the technology that converts Jakob’s “spelling” into
naturalistic voiced output, and
- the
supposed input regarding the technology by “the non-verbal community”
In
other words, this NPR report completely leaves out the fact that Jakob and
other members of the non-verbal community are being facilitated, and their
communications likely authored, by their FC/RPM/S2C communication partners.
It
was a five-year process. For the first two years, accessibility designer Lauren
Race queried the non-verbal community about what they wanted from a new
speaking device. She asked, "What do you want with this thing? What's
wrong with it? What do you love? What do you hate?"
"There's
this mantra that everybody in this community uses," said Prestini,
"which is 'nothing about us without us.'"
Or,
rather, “nothing about us without our facilitators.”
Or,
rather, “nothing about the personas concocted by the facilitators without the
facilitators who concoct those personas.”
Throughout
the piece, remarks about technological developments and the input of non-verbal
people continue to distract from the communication-rights-violating elephant in
the room. One caption reads:
Jakob
Jordan tries out the technology that allows him to add emotional content to his
speech by speeding it up, slowing it down, and adding pauses.
We
also hear the usual pro-FC/RPM/S2C conflation of FC/RPM/S2C and AAC
(Alternative and Augmentative Communication, evidence-based and not
facilitator-controlled). Here, the conflation is especially easy, given that
the role of the S2C communication partner is completely omitted:
Some
nonverbal people, like Jordan, use an augmentative and alternative
communication device, or AAC device, to talk. They type words into the device
and a voice reads them.
But
the voice sounds emotionally flat — like a robot. The team fed the AI some of
the natural sounds both Jordan and Zioueche made, and it created voices for
them.
Inevitably,
as well, we get the usual S2C-generated testimonials:
“As
someone who was not able to fully communicate for the first 22 years of my
life, it is mind-blowing to be in an opera and to be here sharing on NPR.”
And:
“When
I first heard the sound of my voice come to life, a new realization was
born," he said through the new device. "Dream the bigger dreams, you
know, the ones you dismiss and hide away because they seem impossible."
It’s
because of articles like this (and this
and this)
that I stopped donating to NPR. I now direct that money to the Internet Archive, which has kept alive an older
FC-critical
documentary from more journalistically responsible times of yore.
The
last piece about Jakob takes us back to Cincinnati, this time to Local 12 News. This segment, dated July 3rd, is entitled My
world has opened up': Son of local radio host changes life through tech,
therapy.
Once
again we learn about Jakob’s brain-body disconnect:
He
was using his device to share his favorite foods during a recent trip to Las
Vegas to see his favorite band, New Kids on the Block. Two years ago, such
communication would have been impossible for Jakob Jordan, who struggled with a
disconnect between his body and brain.
But
this time we learn more about Jakob’s first S2C session, which features, as so
many of these sessions do, the typing out of a sophisticated vocabulary word:
after
discovering that he could spell and read, his mother collaborated with speech
therapist Julie Sando to unlock his potential. The first word Jakob Jordan
typed was "analogy," and he understood its meaning.
As
I noted earlier, one of the main goals of the first lesson is to get the parent
coming back for more, and one of the best ways to do that is to dazzle them by
“unlocking” sophisticated knowledge or vocabulary that they had no idea their
child had acquired.
For
me, the most impressive things about Jakob are neither his purported vocabulary
and literacy skills, nor the fact that he has an S2C-enabled role in a musical.
Rather, what impresses me are the clip of Jakob dancing at about two minutes
into the first
segment, which I watched several times, finding it quite endearing; and the
pictures on the cards credited to him in Cards by Jakob, which I’m
assuming are his own authentic work. It seems reasonable to presume that Jakob
has the competence to control his body, and it looks like he has artistic
talent and enjoys using it. He also looks like a calm, happy person.
Let’s
celebrate all that—and, most importantly, celebrate Jakob for who he really is.
Posts
No comments:
Post a Comment