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


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



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