The Models and Language of Disability
There are different models of disability that influence our perceptions and shape our biases. We are often molded through our socialization, experiences, and the language we hear and use.
Brief Overview of Some Disability Models:
The Social Model looks at disability as a difference or diversity. The limitations perceived are a result of barriers in the environment rather than an individual's impairment.
The Medical Model focuses on the diagnosis rather than the individual.
The Biopsychosocial model marries the medical and social models. An example of this is The International Classification of Functioning, Disability, and Health. ICF is the WHO's framework focused on the health and function of an individual versus their disability exclusively.
The Charity Model views the disabled individual as a victim of circumstance/pity. The link to this brief 9-minute TED talk by Stella Young speaks to this https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en
The Human Rights Model advocates for an individual's full participation and inclusion in all aspects of life. http://www.daru.org.au/how-we-talk-about-disability-matters/introducing-the-human-rights-model-of-disability
Models and Language of Disability
Language
Language plays a large part in supporting our bias when it comes to describing disability. An excellent resource on how to discuss disability with your children is the following blog post recommended by Dr. Cara Whalen Smith, PT-https://godfreynanz.blogspot.com/2021/04/how-to-talk-to-kids-about-disability.html
Key Points to Remember:
Identify-first language refers to claiming the disability as a demographic for example using the phrase: the autistic child. Whereas person-first language will refer to the child with autism. Both language descriptors are regarded as respectful.
As disability awareness evolves so will our language. At present there is a movement to #say the word and to reclaim "disabled" as a neutral term that is neither good nor bad. To hear more about this listen to the following podcast.
Bio: Dr. Cara Whalen Smith is a public health physical therapist from Ohio who works to improve health equity for people with disabilities. She works at Ohio Colleges of Medicine Government Resource Center. Her work is centered on raising awareness of the different biases we may hold about disability and how we can change the way we think and talk about disability in order to improve the full inclusion of people with disabilities in our society.
Transcript
Marsh Naidoo (00:16):
Hi guys. Welcome to episode 45 of the Raising Kellan Podcast. My name is Marsh Naidoo and I blog at raisingkellan.org where we curate resources for special needs parenting. Today's episode is focused on the models of disability as well as the language of disability. I invite Carra Whalen Smith, who is a public health physical therapist working towards improving the health equity for persons with disability, Drake box of the podcast, the box factor, as well as Rebecca Rero, a pediatric physical therapist based in Bartlesville, Oklahoma, who is also sponsoring today's episode on behalf of her company Move Up Physical Therapy. As a side note, I do wanna warn parents listing that some parts of the podcast were exceptionally difficult to listen to as a parent, so please keep that in mind. Also, please be aware that the opinions today expressed are those of the participants and is meant to create open discussion surrounding the models of disability as well as the language of disability. If you would like to contribute to this conversation, please, you are welcome to contact me@raisingkalingmail.com. Without further ado, let's get into it. Welcome Cara.
Dr Cara Whalen Smith (01:57):
Thanks for having me. I'm really excited to be here speaking with you all.
Marsh Naidoo (02:01):
Joining us as well is Rebecca Renfro, who is a pediatric physical therapist at Move Up.
Rebecca Renfro (02:08):
Glad to be here also and I have the good fortune of hearing Cara talk at our combined sections meeting this year and it was a very worthwhile and excellent talk. So I hope everyone enjoys this the information that she has to share.
Marsh Naidoo (02:27):
And last but not least, Drake boxed on the box factor is joining us as well. Drake, would you like to say hello, sir?
Drake Box (02:36):
How are yall doing? It's really a pleasure. Be here. I always love coming on the show and I know we're gonna hear some great things today, so I'm here for it.
Marsh Naidoo (02:44):
Cara, would you like to open up ma'am, please with letting us know about the different models of disability, what they are and how they intersect with each other?
Dr Cara Whalen Smith (02:57):
Oh, absolutely. And first I'd like to disclose for your listeners that I do not identify as having a disability. I do have friends, relatives, colleagues with disabilities, and I worked in clinical practice for many years with many patients with disabilities across the lifespan. I consider myself to be a disability ally and advocate and as you mentioned, my work in the public health arena is aimed at improving health equity for individuals with disabilities. So all of these traits both inform and limit my perspective around the conversations we'll be having today. So yeah, I'm very excited to share these models of disability as they've evolved over the centuries. We'll note that these are just a few models of disability. They're certainly more out there particularly from a disability study perspective which others are probably better at speaking to than myself. But first want everyone to understand there are several different models of disability that have directly impacted how people with disabilities are viewed in society today.
(04:14):
So the first way in which humanity kind of understood disability was what's called the charity model. And for the general public today, I would still say that this is often the way in which most people still view disability. And according to this model, a person has a disability that disability is a problem in their body or mind. And we as good citizens without disabilities should feel pity for people with disabilities or inspired by the achievements of people with disabilities. And this model doesn't really focus at all on the rights of individuals with disabilities or their capabilities. So for example a program that would donate clothes or other goods to people with disabilities but not want to support those individuals and being fully included in society or having economic independence would be defined as a charitable approach. But the most common way that people without disabilities reflect this model today is through viewing people with disabilities as being objects of inspiration for non-disabled individuals.
(05:43):
I highly recommend that listeners look up the TED Talk by Stella Young. She speaks to this concept which she calls inspiration porn where people without disabilities objectify people with disabilities for their own benefit. So an example of this you'll find many images and stories about disability that fit into this trope that disability is inspirational or there's superhuman things that people with disabilities have to overcome for doing pretty ordinary things. You'll often see memes or posters that are aimed at people without disabilities to make them feel motivated or inspired to get through the daily challenges in their own lives with the implication that well, at least you don't have a disability. So that's obviously a pretty problematic way to view disability. Yes, An example of a poster would be a Paralympic athlete running a track marathon and the caption would be aimed at people without disability saying in quotes, the only disability in life is a bad attitude.
(07:15):
So obviously that's harmful to the disability community to be objectifying them in that way. Also, if you pay attention these types of stories are really pervasive and local news broadcasts whenever you see a story about particularly a child with a disability it'll likely contain phrases she didn't let her disability stop her. That overcoming type of thing, like just being alive, you have to overcome things confined to a wheelchair. If you saw him doing whatever activity you would never know he was disabled or defined the odds or a courageous battle or proving if you really try, you know, can overcome anything. So all of these have that implicit implication that people with disabilities are othered they have to overcome and that they're inspirational for the rest of us. And I think many people probably see these stories on the news and the initial immediate reaction is, isn't that wonderful that a person with a disability is being included in whatever this event, like an individual Down Syndrome getting to play for a few minutes on the football team and they're really trying to stop him from making a touchdown, but why isn't the person with Down syndrome a part of the team anyways?
(08:58):
Why is he being used as a token story? But this is just how we're conditioned to view disability. And I know in the past I got those warm fuzzy feelings when I saw those types of stories, but if you really reflect, it's very damaging to portray people with disabilities in this way. As a general rule, if you take disability out of the equation and it's not news, it shouldn't, shouldn't be a new story. So for example, a boy asks a girl to the prom is not news, but that's ordinary. People with disabilities go to prom all the time just like people without disabilities and it shouldn't be viewed as the super-human feat or source of inspiration for us. But the sad reality is we have those reactions because we know all the obstacles and the systemic segregation today still of people with disabilities, all the barriers in place in their society that makes this newsworthy.
Marsh Naidoo (10:11):
I'm just gonna play devil's advocate here for a second because Kara honesty, as a mom raising my son with a disability there are some challenges that are just exceptionally hard for us to work towards and there is always a glimmer of shall I say, pride or happiness or joy when certain milestones are met. So we do see that as a celebration, but to be honest mean that's from the mother's perspective. But I can see to what you are saying that as he gets older though, that would kind of not be the ideal situation for him. I mean it is hard actually accept hearing that as a mother, but I can see to where that would be detrimental, him having that tied exclusively his identity.
Dr Cara Whalen Smith (11:19):
Yeah, absolutely. And we should celebrate all of our children regardless of disability status, of whatever achievements they have in their personal life, but to exploit that for the greater society and to perpetuate stereotypes that children and adults with disabilities are not capable. That this is the exception, not the rule, that people who never encounter people with disabilities in their everyday lives are getting this messaging about it is ultimately very harmful. And taking it to the health professionals having these types of stories that we hear in the media about disability and what we think about disability that are really limiting in terms of erroneously thinking. People with disabilities don't have a high quality of life. They erroneously thinking that they have limited capacities and functions, limits a physicians treatment options that they offer to individuals with disabilities because of these learned biases and stories that we're told about disability.
(12:43):
As another example in the media, a common trope that you see is in movies for example, villains often have disabilities of some sort. For example, Captain Hook is an amputee Darth Vader is also an amputee. Freddy Kruger has physical impairments. So that the implicit association is that these types of impairments, these types of disabilities are to be feared, they're ugly, they're not natural when in fact disability is a very ordinary and normal part of the spectrum of diversity of human life. So come from our tales and our cartoons, just these stories that we're telling that we're not even aware of that is just so pervasive in our subconsciousness and in a movie, if they're not a villain, they're often a victim, Tiny Tim for example. And they're usually a one dimensional victim that we're just supposed to pity and they don't have any agency of their own in the story.
(14:04):
And I'll note that disabilities was still one of the only demographics where it's okay or it's considered to be okay that a person without a disability can play those roles much in the same way that it used to be okay for men, cuz only men were in theater to play women or people of different races playing a different race in their own and not understanding that disability is a demographic characteristic for millions of Americans and they're not getting to tell their own stories, their stories are being told from the point of view of nondisabled people. So our understanding is really biased and can be harmful ultimately, especially from the healthcare provider point of view. And what ultimately treatments are offered or not offered to individuals with disabilities that result in these health inequities
Rebecca Renfro (15:07):
<affirmative>. So Cara I definitely appreciate the insights that you're sharing. I do think it's challenging just as I think Marsh was saying how to balance it because there are achievements and there are things that people, whatever your challenges are do you feel like that maybe we stick people up on a pedestal, maybe out of fear of disability? Well I'm afraid I don't wanna have a disability. And then we were like, Oh well look, they were able to achieve such and such because our perceptions, it's not necessarily that we don't have to celebrate accomplishments, but maybe it goes back to our perceptions of why is that special? Not that it's not special, but why is it special? I don't know. What are your thoughts?
Dr Cara Whalen Smith (16:14):
Yeah, those are great points. And I think that the reason many people, myself included in the past felt that this is an really amazing achievement is because of the low expectations I've been conditioned to believe about disability. I cannot tell you how many times throughout my career as a physical therapist, patients and friends kept surprising me about they're able to accomplish and achieve and then I realized I was putting them in a box and in my treatment I was put in a ceiling on what I was offering or pushing or allowing them to achieve or do. So I think we're placing those limits from our own biases and secondly, our society in general is not accessible.
Rebecca Renfro (17:23):
Definitely not Disabilities, I would agree with you there and I'm thinking about the young woman that's just been on the news who has Down Syndrome in the golfer. I don't know if you watched her,
Dr Cara Whalen Smith (17:35):
But I am, I'm not familiar with that
Rebecca Renfro (17:39):
And it is an accomplishment. She actually played for her college and went to I believe the championships, but anyway went, was recruited and on a college scholarship. So that's an accomplishment for anybody regardless of whether you have Down Syndrome or not. However, how do you celebrate that accomplishment given some of the challenges she had to have that were different from challenges that someone else had to have to accomplish that? Do you understand where I'm coming from?
Dr Cara Whalen Smith (18:17):
I think you definitely can do that and especially if the individual with a disability has agency and the story that's being covered about them and they're not being used for inspiration but as a real achievement and not basically I got out of bed and went to school and mm-hmm <affirmative> like other children and it's a huge feat and being able to tell their own stories and we're not speaking on behalf of the community I think that that's one of the first steps that needs to happen. Yeah, it is a fine line.
Drake Box (19:06):
<affirmative>. So
Rebecca Renfro (19:08):
Go ahead.
Drake Box (19:09):
I'm sorry. Excuse me. So I just wanted, I've been listening to what's been said and I kind of wanna give my perspective on it as somebody that has a disability, whether it's mild or severe, but as I've grown up and I've learned what I've had and I've learned to deal with what I have and prosper with it, instead of just letting it, like you said, hold me back, is what the general consensus is that that's what it will automatically do. I don't necessarily agree with that because how am I supposed to know that what I have from day one is holding me back in the first place? You see what I'm saying? I've always had cerebral palsy, I've never had anything less than having cerebral palsy. So to me it's not holding me back, it's just an aspect of my life that I have to encounter in certain situations and learn from and grow from.
(19:59):
So like Ms. Cara said, I completely agree that's the main number one issue is that the disability card is pulled and slapped on our backs whenever we don't want it to be. Whenever whatever we accomplish is just what we wanted to accomplish. Because as people of society are able to do that whole with her going to college and competing in sports, that's not a big deal because I mean it is a big deal for her, but it's not a big deal because she's disabled. It's a big, because she was able to do that <affirmative>, there's nothing about the disability that had to be put in there and it still would've been a great story. So I think that's the main problem is they slap that tag on us when it's unnecessary <affirmative> and we don't even mention it. Most of the people with disabilities like that I know and myself included, I don't talk about it unless somebody asks me. You know what I mean? Don't not gonna sit here and say I'm a podcaster but I have cerebral palsy. No, I'm just a podcaster who happens to have cerebral palsy. So I just wanted to put my perspective on that for a second
Dr Cara Whalen Smith (21:04):
Thank you Drake, that, and that reminds me of another point, exactly what you alluded to. If you replace disability with any other demographic and it doesn't sit right, then it shouldn't sit for disability. So back to the example of boy, take scroll to prom. We know that's not news that happens every spring, but if you said Boy takes girl to prom, despite that she is black, despite she is Asian, despite she is poor, that would never be news. But I see every single spring someone is taking someone with a disability to prom and that's news. And I guess we need to ask ourselves as a society, why are we not as uncomfortable with that as we are with other demographics where we've agreed that that would be offensive and harmful to that community.
Marsh Naidoo (22:02):
So Cara, you talked about the charity model of disability. What are models? Are they out there? I mean I'm aware of the social model and the medical model, but are there some others that you can touch on please as well?
Dr Cara Whalen Smith (22:17):
Sure. So there are the medical and social models and we can talk about that in more detail if you're interested. But the human rights model of disability evolved beyond the medical and social models. And that's where the focus has really shifted to moving beyond removing barriers in society for disability, which is kind of a core tenant of the social model and argues that full participation in all aspects of life is a basic human and that it should and can be claimed by everyone. So the United Nations Convention on the Rights of Persons with Disabilities from 2006 really reinforces this framework and this model calls for the full inclusion of people with disabilities and for them to take control over their own. Previously in past models, people with disabilities were never at the table, had nothing to say about how they're being talked about or thought of or viewed in society. And the model that you may have heard that really exemplifies this model is nothing about us without us. So
(23:49):
Meaning people with disabilities need an equal or perhaps more than equal seat at the tables where decisions are being made that directly impact their lives celebrates disability as an ordinary aspect of human diversity, a demographic identity and says that all humans will likely experience disability at some point in their lives and it's an important dimension of culture and it is not a health problem. Yes, you could have secondary health impairments, but the identity itself is not a health problem that needs to be cured or fixed. And many disability self-advocates in fact reject certain medical treatments that would attempt to alter their behaviors to make them fit in with the rest of society. And that we really need to embrace for example, in the autistic, the neurodiversity of human life. And for example in the deaf community they may prefer to be called a deaf person rather than a person who is deaf.
(25:18):
It is a cultural identity and would reject any attempt at cochlear implants or any sort of other treatment because as Drake said, they are born that way. It would be asking me to change my eye colored as part of who I am. It's one aspect of my identity there's nothing wrong with it it's a beautiful expression of diversity. So I just wanna recognize that while some people with disabilities may want cures particularly maybe if they have acquired a disability not from birth but at some other point in life or one or seek rehabilitation or other treatments to improve participation in everyday life but others may reject that and all disability experiences are equally valid but the end of the day people, all people should have access to all of our basic human rights in society.
Marsh Naidoo (26:25):
You mentioned something which I already want you to touch on, and that was the language that we use or express disability with. I often hear of the term people, is it people first language? Can you delve into that a little bit for me?
Dr Cara Whalen Smith (26:43):
So what you were alluding to is often called either people first or person-first language. So all things in life, there are a lot of nuances and it will depend on who in the disability community you talk to. As a general rule of thumb people-first language does attempt to be respectful and unless otherwise specified by an individual is certainly fine to use. But many do, as I mentioned earlier, prefer identity first language. It is part of their cultural identity. So some examples may be what we call big D deaf versus little D deaf someone who was born deaf and or really identifies with the deaf community as one of their cultural identity would prefer identity, first language versus someone who may not have been born deaf or lives. And socializes most often with people who can hear would maybe prefer person-first language.
(28:00):
The main thing I wanna touch on with language is that kind of over the years as a well-meaning attempt to be respectful to people with disabilities to try to highlight capabilities, we've kind of moved towards trying not to say the word disabled or disability, it's a bad word and that it, it's negative and that's coming back from the models of how we're thinking about disability from all of our media representations, that it's a bad thing and we kind of wanna erase that as an identity and do everything we can not to say the word. And in fact, quite recently there's been an online movement with some disability that the hashtag is, say the word to reclaim the word and to encourage people to be not afraid to say a disabled person or a person with a disability. And in fact to try and lose language where we try to use euphemisms to do everything we can to not say disability.
(29:25):
And some of these terms we say quite frequently because we've just been socialized to say that for example saying things like differently abled or handy capable or don't. My ability in the play on words on that or special needs. And I know for many listeners who have children with disabilities, this may be a totally new concept and as I said, the use of this language for many come from very good well-meaning and intentions. So no one is a bad person forever using terms like this or preferring terms like this. We've been socialized to use these words, language evolves over time as our understanding becomes more sophisticated and we actually include people with lived experience in the conversation and some disabilities, self-advocates would consider these terms to be offensive because they feel that those terms stigmatize that which is different and are perpetuating these negative assumptions that disability is inherently a bad thing or a negative thing by trying to avoid saying the word.
Marsh Naidoo (31:01):
This is so interesting because the last podcast I recorded was with this mom, her name is Jessica Moxham and she's written the book The Cracks that Let the Light in. And this was a topic we touched on and she's very matter of fact when introducing her son Ben, that Ben is disabled. And to be honestly as a mom from my perspective is actually a relief because let's be concise and mm-hmm <affirmative>, let's say things as they are. And I think when it is presented this way to whether it's a parent or whether it is a parent introducing their child or whether it's a child introducing themselves as disabled, having clear -ut language aids or facilitates better awareness. I mean that's just my perspective.
Dr Cara Whalen Smith (31:55):
Absolutely. And we, we've gone to a place where disability, it's a neutral term, it just is, I have green eyes, that's neither good nor bad, I just do, that's part of me, that's a description of me and we've attached meaning towards through these stories we've been telling. So I would encourage listeners to not be afraid to use these really neutral terms. Don't try to use other language to try and replace it. A way to understand this would be special needs as an example, which is really prevalent in pediatrics. And I do want to highlight that it is perfectly fine to use that term when you're referring to an organization or a service like the Special Olympics or special education teacher.
(32:58):
I will note some organizations have started to change their terms though as language has evolved. So it'll be interesting to see if that field does as well. One example is Handicap International is now Humanity and Inclusion getting rid of some of the older language but back to special needs. So if you think about what that is saying, it's saying that people with disabilities need something different than the rest of us. All humans have the same basic needs. We all need to be loved, we all need food, we all need shelter clothes to get an education to a desire to be independent in our lives. People with disabilities are no different than that. That's not a special need that's different from the rest of us. But for example, if children need additional services to participate fully in school to reach their highest level of functioning in the classroom or quality of life it's not to do with the individual. It is more to do with our environments and systems that are not already universally designed to be accessible for them. So in reality, these services wouldn't need to be special if we were already able to accommodate everyone in society.
(34:30):
So yeah, its takeaway is don't be afraid to say the words if you're looking for more suggestions on appropriate language I recommend the Disability Language Style Guide from the National Center on Disability and Journalism. And I also recommend a great blog post recently entitled:" How to Talk to Kids about Disability Inclusion". That kind of speaks a little bit more to some of these concepts of appropriate language use and how to teach our children how to interact with other children with disabilities.
Marsh Naidoo (35:22):
Cara, thank you so much for that. That was insightful. I would like to end with closing remarks from Rebecca and Drake.
Drake Box (35:33):
I would just like to say that this whole podcast has been amazing. I've learned so much within these 30 to 40 minutes. We've sat and talked, but I think my main takeaway from this is just let people be them and whenever they have attached to them, acknowledge it but don't focus on it. You see what I'm saying? I talked about earlier, people don't automatically want their disability attached to their name. They just wanna be called Drake Box, the podcaster, not Drake box, the person who has cerebral palsy, who is a podcaster. So I think just the main thing is don't attach the disability to the name automatically and just let people be themselves. And if they bring it up, let 'em talk about it, understand it, but don't always focus on it.
Rebecca Renfro (36:20):
I certainly appreciate Drake and Kara and Marsh is all three of your perspectives and as a therapist who has had the great pleasure of having many friends, it's like even I don't call my friends patients, I call 'em my friends. And I have a really hard time saying that and I think our models language is evolving and it will continue to evolve. What's probably good today will evolve, as you said, we knew no more, but I really feel like we have to push forward towards inclusive communities. We have to make everyone's valuable that you are a valuable participant and your society. Until we reach that point, we really won't overcome. I think this fear and this isolation and this in a sense separate but equal. I recently went to lunch with a little friend who has cerebral palsy and we went into a new facility that was just built to have lunch and it was so unaccessible and I was shocked that we are still at that point that she would not have been able to access that restaurant without somebody else. So I would like to see us all, not miss great friendships from the diverse communities that are around us, the diverse people that are around us.
Marsh Naidoo (37:58):
Guys, thank you all for joining in on this conversation today.
Rebecca Renfro (38:04):
Thank you, Marsh. Thank
Drake Box (38:06):
You. Thank you, I appreciate it.
Marsh Naidoo (38:08):
We have come to the end of yet another episode on the Raising Kellan Podcast. Carra Smith has kindly put together a few resources as well as references to help us further research the models of disability as well as the blog post she mentioned on how to discuss disability with your children. This is by no means the end of this conversation. It is merely the start. From my personal perspective, I can see how the models of disability shape our perceptions of what disability is, and it has also gives rise to the way we use the language surrounding disability. A person first versus identity first choice of language. I would love to hear your perspective and you can reach out to us at raisingkiengmail.com. We would like to thank Move Up Physical Therapy for sponsor today's episode. And guys, until we see all the next time, remember get to the top of your mountain. This is Marsh Naidoo signing off.