Should I Say “Disabled People” or “People with Disabilities”?

In this episode I unpack Sharif, McCall, and Bolante’s (2022) publication titled “Should I say “disabled people” or “people with disabilities”? Language preferences of disabled people between identity- and person-first language,” which summarizes findings from a survey on participant preferences for language around disability and an analysis on language in conference abstracts.

Welcome back to another episode of the
csk8 podcast my name is Jared O'Leary
each week of this podcast is either an
interview with a guest or multiple
guests or a solo episode where I unpacks
some scholarship in relation to Computer
Science Education in this week's episode
of unpacking a paper titled should I say
disabled people or people with
disabilities language preferences of
disabled people between identity and
person first language this paper is
written by ather Sharif Aiden L McCall
and Kiana R ballante apologies if I'm
mispronounce any names here's the
abstract for this paper quote the usage
of identity EG disabled people versus
person first language EG people with
disabilities to refer to disabled people
has been an active and ongoing
discussion however it remains unclear
which semantic language should be used
especially for different disability
categories within the overall
demographics of disabled people to
gather and examine the language
preferences of disabled people we
surveyed 519 disabled people from 23
countries our results show that 49 of
disabled people prefer identity first
language whereas 33 percent preferred
person first language and 18 had no
preference additionally we explore the
intra-sectionality and intersectionality
of disabled categories gender
identifications age groups and countries
on language preferences finding that
language preferences vary within and
across each of these factors our
qualitative assessment of the surrogate
responses show that disabled people may
have multiple or no preferences to make
our survey data publicly available we
created an interactive and accessible
live web platform enabling users to
perform intersectional exploration of
language preferences in a secondary
investigation using part of speech us
tagging we analyze the abstracts of 11
Chi assessing their adoption of identity
and person first language we present the
results from our analysis and offer
recommendations for authors and
researchers in choosing the appropriate
language to refer to disabled people end
quote writer summarizes paper into a
single sentence I'd say that this paper
summarizes findings from a survey on
participant preferences for language and
disability and Analysis classes on
language and Conference abstracts as
always you can find a link to this
particular paper in the show notes at
jaredleary.com or by clicking the link
in the app that you're listening to this
on paper is available for free I've
actually had it for a few weeks now but
it just got presented today actually
that the day that this released a couple
hours ago so thank you to the authors
for making this publicly available I
enjoyed reading through this particular
paper in the show notes you also find
some links to other podcasts that are of
interest for example I had some
wonderful conversations with Maya Israel
and Jesse rathgabber discussing
disability accessibility inclusion Etc I
highly recommend taking a look at those
episodes while you're in the show notes
you also notice that this podcast is
powered by boot up professional
development which is the nonprofit that
I work for if you haven't been to
boot.pd.org check out the free
curriculum and learn more about the paid
professional development alright so to
kind of re-emphasize what is stated in
the abstract the idea of identity first
language is you might say a disabled
person or like an autistic child which
contrasts with person first language
which would say people with this
disabilities or a child with autism
depending on who you're speaking to they
might prefer one over the other so it
might be considered disrespectful or
insensitive to use one over another so
the authors were looking at okay well
what's the general preference among
different groups in their and their
intersections or intersections so this
paper is going to explore that kind of
preference for discourse or label or
identity depending on how you look at it
so here's a quote from the introduction
and there is a slur in there and I will
read it as is quote words have power
they reflect attitudes that speakers
want to exchange they also shed light on
the sensitivity to matters involving
social justice and cultural awareness
especially for underrepresented and
marginalized groups such as disabled
people several terms such as [ __ ]
are now considered outdated as they
assert negative connotations on disabled
people and some pejorative terms such as
crippled and [ __ ] have been reclaimed by
the disability Community similarly the
debate between mean identity using
identity first EG disabled people and
person first language using people first
EG people with disabilities has been
active in ongoing discussion end quote
this from PDF page two now also in the
introduction in the next paragraph the
authors mentioned that there are
different protocols or recommendations
from like American Psychological
Association APA American Medical
Association American Psychiatric
association and the American speech
language hearing Association as well as
the Associated Press and how they all
use person first language so like a
child with autism but there have been
some studies that showed that some
people prefer identity first so like an
autistic child and so the authors wanted
to explore well what do different groups
think especially when it comes to
intersections of different identities
okay so from page two quote as of the
date of writing this paper our survey
had responses from 519 disabled people
representing nine disability categories
six age groups and 23 countries our
findings show that overall disabled
people prefer identity first language 49
percent compared to person first
language 33 end quote it's a really
interesting finding that will actually
explore a little bit later alright so
the next section is on background and
related work and so they have different
subsections on like identity versus
person first language and disability
studies a section on disability language
preferences surveys a section on
analyzing accessibility related academic
Publications so if any of those three
sound really interesting to you I highly
recommend checking out the paper but to
kind of highlight the main point of this
particular paper is some people view
identity first as dehumanizing because
you're saying autistic child and you're
putting the disability or the label the
medical label first rather than the
person first but then some people within
some communities as we'll find out
prefer identity first because they feel
that using person first language I.E a
child with autism downplays or minimizes
the disability so on page three of the
PDF the authors state that quote several
Scholars and researchers have identified
the need to utilize both appropriately
claiming that a singular linguistic
model is non-representative of the
entire disability Community end quote
which is that there is one like quote
that I can really use to State like a
main takeaway for this particular paper
it'd probably be that the idea that hey
you can't just go with identity first or
you can't just go with person first it
really depends on who you're speaking
with kind of like pronouns so I'm
non-binary I personally use they them
but any pronouns work for me so some
people use that a some people use he and
I've had a couple people use she all of
them work for me it's just a label but I
have other friends in the trans
Community Capital T trans Community who
experience emotional distress pain Etc
when somebody misidentifies them with
the wrong pronoun and so the same thing
can be done with identity in person
first using one over another May
unintentionally cause some kind of harm
to the person you're speaking with
alright so the next section is on the
preferences survey and so I highly
recommend taking a look at table 2 on
PDF page five this table breaks it down
into an overall column that displays
people who prefer identity first people
who prefer person first and people who
don't have a preference and then it also
breaks it down into my United States so
I'm going to read some of these off
because I think they are interesting and
I'm just going to read the overall
category if you're interested in the
United States specific findings check
out that table on page five okay so
overall identity first 48.6 preferred
that per person first 33 preferred it
and then no preferences 18.4 okay now in
order to try and make this a little bit
easier to understand from an audio
perspective because it's hard to
summarize like an entire table what I'm
going to do is read only the identity
first so people who prefer disabled
people compared to a person with
disability and so I'm going to read it
off for each one of the categories the
no preference category makes up between
reading off the identity first it
doesn't mean that the remaining
percentages is going to the person first
language but I'm only going to read off
the identity first just to kind of show
you how drastically different it is for
each one of the different categories
identities Etc okay so again so overall
the percentage was 48.6 but within the
mobility disability category it's 39.4
within visual disability category it's
category it's 71.4 within learning
disability 61.1 within neurological
disability it's 41.5 with an auditory
it's 58 within chronic illness
disability it's 43.6 within in mental
health related it's 57.4 and with other
it's 25 now when we get into gender
identity for women it's 37.4 for men
it's 39.4 for non-binary individuals
within Canada is 42.9 in h category is
year olds it's 40 then 51 to 60 percent
it's 31.8 percent and 61 to 70 it's 30.6
percent and within 71 and older it's
see how different each one of the
disability categories are in terms of
percentages we have a range from 25 to
all the way up to 71.4 percent but then
when we get an agenda identity we have a
range from 37.4 percent all the way up
to 81.6 now it didn't sound like there
was much of a difference but between
country so like United Kingdom is 40.2
and United States was 43. but if we
actually look at person first language
there's even a larger spread in there so
for United States it's 32.6 preferred
person first but for the United Kingdoms
is 53.6 so much larger spread and then
by age category if you're able to notice
because again it's hard to kind of hear
this with just audio instead of being a
look at the table the preference for
identity first language is more toward
younger age groups and then for the
older age groups the preferences toward
person first language which is really
interesting but it makes sense from my
limited understanding of the history of
disability language discourse is that
identity first came before person first
discussions so people typically used
disabled people before they use people
with disabilities so that makes sense
from again my limited understanding of
the history of discourse around
disabilities and identity now on page
six PDF page six there are several
different figures that can kind of
easily display the percentages you don't
want to look at numbers I do recommend
taking a look at that what is really
interesting to see the shifts across the
different identities and whatnot now if
we get into the next subsection it's on
quantitative evaluation and I don't
think this section would necessarily be
interesting to read out on a podcast
compared to the following subsection
which is on the qualitative evaluations
so I'm going to read off some of the
quotes that were interesting at least to
me I'm not going to read all of them but
just to select a couple of them so they
found three different kind of themes
that emerged one is that one size does
not fit all the other is that not
everyone has a preference and the third
one is that people can have multiple
preferences depending on what disability
category is being discussed Etc okay so
for the first one one size does not fit
all quote our first theme shows that the
language preferences of disabled people
can vary between different disability
categories for example as shown in table
prefers identity first language whereas
people with Mobility disabilities prefer
person first language end quote from PDF
page eight there's an interesting quote
from a participant that is is on the
same page page eight quote I'm not
ashamed of my disability I am who I am
there's no point in denying that person
with blindness just sounds wrong to me I
feel like person first language tries to
hide our disabilities it communicates
the message that even though you're
disabled you're still a person treating
disability is something wrong and
something to be ashamed of which is not
the way I feel about it end quote here's
another quote from another participant
quote it's not a deep loathing but I
just don't like it when disabled is
literally the first way a person learns
of me as in a disabled woman I work with
there I'm disabled before literally
anything else and it's really not one of
the most interesting things about me end
quote and here's one more quote it is
important to me that a person has said
first we are humans we have feelings and
deserve to be recognized as a person
before a disabled person end quote I
really like the Jack's position that
they have with these different quotes in
this particular theme now on the next
scene not everyone has a preference
here's a quote also from PDF page eight
quote our findings show that 18.4 and
overall and in the United States
respectively had no preference between
identity and person first language end
quote and then they provide three
different quotes from participants
here's one that I'll read off also from
page eight quote all I care about is
that people know I'm blind if someone
wants to say I'm an individual who is
blind or that I'm a blind person it
doesn't make a difference to me end
quote I can relate that to a certain
extent with not asking others to use my
own preferred pronouns regardless of
what pronoun you use it doesn't change
my gender identity which is why I'm kind
of indifferent with how other people's
label me and whether they affirm or deny
my gender identity really doesn't change
who I am at least for me and I know that
can be easier said than done especially
because I have a lot of passing
Privileges and whatnot people don't
really question my gender or even my
sexuality Etc because I'm married to a
CIS woman but either way it's important
to understand that not everyone has a
preference but some people do which gets
into the third theme is that people can
also have multiple preferences so if
somebody has multiple disabilities they
might prefer one or one of those
disabilities and another for another so
here's a quote also from page eight from
a participant quote I use both I often
use identity first language when
relaying the fact that I am autistic and
will use person first language to
explain that I have PTSD I do this as it
seems to be the preferential consensus
of self-advocates that I know and it
helps people feel comfortable if I use
the language they prefer I don't feel
very strongly about either one over the
other personally I think individuals
have the right to choose to use
whichever is most comfortable for them
end quote so that quote started on page
two more quotes on page nine from
participants quote depends with autism I
prefer identity first mostly because I
do not see my autism as conditioned I
don't want it treated like a disease
with the anxiety I prefer person first
the same is true of ADHD end quote and
one more quote from a participant quote
I code switch between the two depending
on my audience when speaking informally
are two groups of people with
disabilities I use blind person but for
professional settings I use person with
a disability end quote alright so the
next section is on accessible web
platform and so there are subsections
that talk about design considerations
intersectional and intersectional
Explorations accessibility and
implementation details so if you're
interested in that I'd recommend
checking that out I think that might be
more interesting for University
professors or for web developers but I
don't know if the audience for this
podcast is interested in it again this
paper is available for free check out
Pages PDF 9 and 10. if you are
interested in that section in the
following section is on language used in
Publications at assets in Kai this was
interesting for me to look at I did a
similar content analysis on the use of
the word talent in a research journal or
music educators did this many years ago
and it looked at like 50 or 60 years of
Publications and tried to see when they
use the word talent did it mean an
innate ability or did it mean an ability
that could be developed when it came to
musicianship or was it undefined the
findings for that study were interesting
because it revealed that a lot of
Scholars actually referred to Talent as
innate ability which for Scholars in
music education is an interesting thing
to consider because there has been some
debate on whether or not music education
should be for all or if it should only
be for those with Talent which I align
with the first one and not the second
one as somebody who was terrible when I
started and just practice a lot I got
significantly better than so-called
people who had talent but this is kind
of a random tangent just to say I
appreciate this kind of analysis it was
interesting to see that quote person
first language counts were higher 54.4
combined 52.6 for assets and 57.1 for
Kai then identity first counts 45.6
combined 47.4 for assets and 42.9 for
Kai End quotes from page 12. so that
actually differs from the analysis that
they did in the other part of this
particular paper so again identity first
combined was 45.6 it was a smaller
number compared to 54.4 but identity
first in the survey that they did was 49
compared to 33 for person first language
so it's interesting that the academic
discourse does not align with with the
survey responses which honestly doesn't
surprise me a lot of vernacular language
is different than academic language and
there is a tendency no offense for
Scholars to not necessarily be in touch
with what and how people identify
outside of scholarship I've especially
noticed that the deeper you go into some
discussions the focus is more on
demonstration of writing prowess than it
is demonstrating being in touch with the
participants you work with being able to
write fancy things using big words that
are often difficult to understand and
interpret but it looks cool even though
it might not at all relate to what's
going on like in K-12 context which is
where I think part of the issue of like
academics being judged as sitting on an
ivory Tower as somebody who's a scholar
and academic Etc I disagree but I can
understand when things like this are out
of touch so creates those like
stereotypes and whatnot alright so in
the discussion section there are
sections on diversity within disability
there's a discussion on
intersectionality and how that matters
because different gender identities
different age groups in different
countries had different preferences and
then they a conclude with some
recommendations and whatnot so I'm going
to read off the recommendation section
this is from page 13 PDF page 13. and
there are three recommendations quote
first and foremost we recommend authors
and researchers respectfully ask
individuals users for their language
preference EG during pre-study or
demographic questionnaires whenever and
wherever possible to convey to readers
that the language used reflects the
individual's preference authors and
researchers can clearly State their
processes at the beginning of the
article or inline when referring to the
individual EG P0 who preferred identity
first language while such additions can
increase the word count of the text they
contribute toward inclusivity and
cultural awareness around disability
related matters second we recommend
referring to the intended demographic
group using their self-identified
language preferences employing
intersectionality using the disability
category gender identity age group and
Country when referring to disabled
people as a group the overall language
preference EG identity first language at
present may be most appropriate authors
and research researchers can use our web
platform to stay up to date with the
language preferences of disabled people
finally we recommend that authors and
researchers keep themselves up to date
with the latest language preferences of
disabled people considering the
preferences may change over time we
intend to distribute our survey every
quarter and keep our data publicly
available through our live website to
assist authors researchers and
interested individuals in staying up to
date with with the latest preferences of
disabled people end quote Yeah so I
highly recommend checking out the show
notes I include a link to the website
that's referred there so if you're
listening to this a year or two down the
road hopefully they'll Continue to
update the data on there and you can see
what is the most up-to-date information
or preferences from these different
identity groups it's important to do
that as somebody who has collaborated on
some presentations and publications
related to trans Community again as a
non-binary individual the language
around gender identity has shifted quite
a bit over the years and so if you have
read scholarship from a decade ago some
of the things that are commonplace in
terms of identities or labels are now
considered to be insensitive or even if
offensive in today's standards so it's
important to contextualize things and
understand its place both in the past
and in the present now with each one of
these unpacking scholarship episodes I
like to usually end with some lingering
questions or thoughts so one of the
questions that I have is if different
people have different preferences how do
you go about navigating uncertainty of
language preference let's say you work
with a class with 30 people in it are
you going to ask each of them or if you
are somebody like myself who previously
worked with several hundred kids each
week I saw many many different classes
sometimes at three different schools
what do you do there and then another
question that I have as somebody who's
like really likes to nerd out on
discourse is when is a focus on language
use and academic debate and when does it
actually help people now some people if
you may have listened to this episode
may have been like I don't see a huge
difference I don't see what's the point
why would we even really focus on this
not causing harm people should just get
over it understand what the intended
meaning is that might be what some
people might think but having spoken
with some people both in the disability
community and then also in the trans
Community it can cause harm so for
example in the trans Community people
who have transitioned or are in the
process of transitioning it can be very
harmful to misidentify somebody's
preferred pronouns can trigger like some
PTSD like responses or just severe
anxiety depression Etc the same thing
with some people with eating disorders
depending on word choices that you use
it might trigger thoughts around
self-harm Etc so even though it might
not seem like a big deal to the person
using identity first or a person first
language to the person that it's
referring to it can make a huge
difference in their day-to-day life if
you use one over the other so it's one
of those things where it's like it
really doesn't take much time out of
your day to ask but it can make a world
of a difference to the person who's
receiving that so it's my opinion it's
better to error just on asking rather
than assuming but those are my opinions
and you can disagree that's okay but I
hope you enjoyed this episode it was a
good paper I do recommend taking a look
at it especially if you're interested in
the sections that I did not dive deeper
into and again you can find the paper at
jaredelary.com and just go to the
podcast tab click on the show notes if
you enjoyed this episode consider
sharing with somebody else or leave a
rating or review on whatever app you're
listening to this on stay tuned next
week for another episode until then I
hope you're all staying safe and are
having a wonderful week

Article

Sharif, A., McCall, A. L., & Bolante, K. R. (2022). Should I Say “Disabled People” or “People with Disabilities”? Language Preferences of Disabled People Between Identity- and Person-First Language. The 24th International ACM SIGACCESS Conference on Computers and Accessibility.

Abstract

“The usage of identity- (e.g., “disabled people”) versus person-first language (e.g., “people with disabilities”) to refer to disabled people has been an active and ongoing discussion. However, it remains unclear which semantic language should be used, especially for different disability categories within the overall demographics of disabled people. To gather and examine the language preferences of disabled people, we surveyed 519 disabled people from 23 countries. Our results show that 49% of disabled people preferred identity-first language whereas 33% preferred person-first language and 18% had no preference. Additionally, we explore the intra-sectionality and intersectionality of disability categories, gender identifications, age groups, and countries on language preferences, finding that language preferences vary within and across each of these factors. Our qualitative assessment of the survey responses shows that disabled people may have multiple or no preferences. To make our survey data publicly available, we created an interactive and accessible live web platform, enabling users to perform intersectional exploration of language preferences. In a secondary investigation, using part-of-speech (POS) tagging, we analyzed the abstracts of 11,536 publications at ACM ASSETS (N=1,564) and ACM CHI (N=9,972), assessing their adoption of identity-and person-first language. We present the results from our analysis and offer recommendations for authors and researchers in choosing the appropriate language to refer to disabled people.”

Author Keywords

Identity-first, person-first, language, disability, preferences, survey

My One Sentence Summary

This paper summarizes findings from a survey on participant preferences for language around disability and an analysis on language in conference abstracts.

Some Of My Lingering Questions/Thoughts

If different people have different preferences, how do you go about navigating uncertainty of language preference?
When is a focus on language use an academic debate and when does it actually help people?

Resources/Links Relevant to This Episode

Other podcast episodes that were mentioned or are relevant to this episode
- Accessibility and Inclusion in CS Education with Maya Israel
  - In this interview with Maya Israel, we discuss Maya’s shift from special education into CS education, the importance of universal design for learning (UDL) in CS classes, understanding the spectrum of accessibility for students with a diverse set of needs, the current status of accessibility and inclusion within the field of CS education, problematize deficit framings of students with disabilities, and so much more.
- Accessible CS Education through Evidence-based Programming Languages with Andreas Stefik
  - In this interview with Andreas Stefik, we discuss the importance of using evidence-based programming languages, problems with the lack of replication in CS education scholarship and academia in general, the importance of designing for accessibility and disabilities, lessons learned designing Quorum (an accessible programming language and platform), and much more.
- Empowering K–12 Students with Disabilities to Learn Computational Thinking and Computer Programming
  - In this episode I unpack Israel et al.’s (2015) publication titled “Empowering K–12 students with disabilities to learn computational thinking and computer programming,” which is a short article that provides some strategies to increase access and engagement among students with disabilities in CS education contexts.
- Exploring (Dis)Ability and Connecting with the Arts with Jesse Rathgeber
  - In this interview with Jesse Rathgeber, we discuss what educators should know about (dis)ability culture and research, person-first language vs identity-first language, suggestions for combating ableism through anti-ableist practices, how the arts and CS can come together and learn from each other (great for sharing with arts educators who might be interested in CS), and much more.
- How to Get Started with Computer Science Education
  - In this episode I provide a framework for how districts and educators can get started with computer science education for free.
- Planning K-8 Computer Science through the UDL Framework
  - In this episode I unpack Israel, Lash, Bergeron, and Ray’s publication titled “Planning K-8 computer science through the UDL framework,” which discusses the potential for using Universal Design for Learning (UDL) in CS classes.
- More episodes related to (dis)ability
- More episodes related to discourse
- More episodes related to discursive identity
- All other episodes
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