Transcript: Talking About Disability Rights - An Interview with Andrea Dalzell, Disability Rights Influencer

​Liz Rohr:
I'm so excited to share this week's episode. So I interviewed Andrea Dalzell, who is a nurse, disability advocate. Turns out she's also in NP school, which I'm so excited about. And, what we talked about is a really wonderful conversation about how to best support our patients with disabilities and primary care, how to have conversations with patients, things to say, things not to say, resources that are available, and why this is so crucial for us to talk about in primary care. And one snippet spoiler alert, not really, but the true path to systemic change starts with inter- individuals, individuals, and interpersonal relationships.

So, without further ado, though, we'll, you'll hear more about it in the interview. But here's my interview with Andrea Dalzell.

Well, hey there, it's Liz Rohr from Real World NP and you are watching the Real World NP YouTube channel. We make weekly episodes to help save you time, frustration, and helping you take the best care of your patients.

Awesome, thank you so much for being here. Can you introduce yourself to the Real World NP community?

Andrea Dalzell:
Yes, my name is Andrea Dalzell, and I'm affectionately known as the seated nurse. I am the first registered nurse who uses a wheelchair to get through nursing school in the state of New York. That's been four years now. You know, it's crazy, how time is flying. But you know, the word is out and, and more and more people with disabilities are coming into the profession day in day.

Liz Rohr:
Awesome, beautiful. Well, we're, I'm just... I'm so happy you're here. Yeah, there are so many places we can go but a p- I think a place to start, like were, just to kind of get into the conversation, like, where do we even start when it comes to talking about disabilities in healthcare, especially in the primary care setting, as most of the people that, um, we serve with Real World NP are in primary care, but just generally speaking, what are your thoughts about that?

Andrea Dalzell:
Where do we start? That is the best question ever. You know what, it's kind of hard to always pinpoint where to start, but I think what we need to recognize first is language.

Liz Rohr:
Hm.

Andrea Dalzell:
We, as a profession, use language that can literally make or break a person just by how we introduce something, right?

Liz Rohr:
Mm-hmm. Yeah.

Andrea Dalzell:
A diagnosis, livelihood changes that will happen. When you use very restricting language, like bound, wheelchair-bound. It's like, wait a minute, am I, am I stuck to something for the rest of my life? Like, what, what does that language really mean? We gotta get to the nitty gritty of it, and how we portray something to people because, you know, healthcare and science, we have this bad habit of, of just using the terminology without actually understanding what that means in the livelihood of it.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
So when I say like wheelchair-bound, we notate wheelchair-bound, like I'm actually not bound to my wheelchair. My wheelchair doesn't sit in one place. It's not locked in. It's not, you know, it may have a seat belt, it may have things to help me stay in the chair, but I'm not bound to it, right?

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
When we say someone is bound to something, bed-bound, home-bound, we're emphasizing that this human is not living in a way that we would see ourselves normally living.

Liz Rohr:
Hm. Hm.

Andrea Dalzell:
Right? And sometimes we gotta change that narrative, because when you're diagnosing someone and saying, Well, this is the possibility that may happen, you start to scare them away from what disability actually looks like. Disability is not a bad thing. It's human nature.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
Everyone in, in human nature is going to experience some form of disability at some point. So when we sugarcoat it and act like disability is this horrible thing, we shy away from thinking about it as a death sentence. It all comes down to wording. And the wording really comes from healthcare first.

Liz Rohr:
Hm.

Andrea Dalzell:
Healthcare is the one that literally kind of notates documents and sends out to the rest of the world. We send out the wire, medically absent from work, we send out the reason why you need medical accommodation.

Liz Rohr:
Yeah.

Andrea Dalzell:
And that wording then plays into how other corporations and facilities and everyone else kind of utilizes the language.

Liz Rohr:
Hm. Oh, my goodness, oh, my gosh, I just love everything you said, like I think that, I think especially for newer clinicians, whether you're a nurse, whether you're a nurse practitioner, physician associate, like, I think that it can be so overwhelming to try to do your like, like learn all the things you need to learn in school and do that, do the medical stuff.

Andrea Dalzell:
Mm-hmm.

Liz Rohr:
And so it's like, it's hard to not get sucked into like, Wait, what am I doing for diagnosis? What am I doing for a plan of care? And to think about things like what language we use with people and also like, it makes such an impact, and, like, that's such a, like such a point you made about the fact that, like, it's not just the way we talk to pa- to patients, we talk to people, and the relationships that we have. And like how language really does influence our culture and the way that things change and, and the supports we have, like it starts at this interpersonal level, or like internal level, interpersonal, institutions, ideologies, right? And that like really all wraps in together. But like, I love the point you made about the fact that like, initial diagnoses come from healthcare providers, and like that language is just takes off.

Andrea Dalzell:
Yes.

Liz Rohr:
So, what are some examples? What are some examples of, um, language? Um, you've already gave, like, wheelchair-bound, bed-bound. What are some of the other language pieces that, um, you see and that are like, kind of like cringe worthy or just like substitutions? Like what is... Because it's, it's, it's about the language, but like, the thing that underlies language, at least this is how I feel, is that it's the perspective. It really changes your perspective. So what are some of the, what are some of the examples that you would say, to, for people to think about, or watch out for?

Andrea Dalzell:
Well, yeah, we are not going to sugarcoat human need, right?

Liz Rohr:
Yeah.

Andrea Dalzell:
Nothing is special about human need, it's human need, you know? Whatever that person needs to survive within their circumstance or situation, so forth. So we're not special needs, right? We're not gonna say... We do not say the word, the R word and I will not say it on this podcast.

Liz Rohr:
Yeah.

Andrea Dalzell:
You're using it. Whether you're saying mental R, it's not correct, it shouldn't be removed from your vocabulary. Even someone who is, disabled, special person, person with special needs, none of that... We're not going to sugarcoat disability. Person first language is giving the person like this woman with a disability or this, this person with a disability, you're acknowledging that they're a person before they have the disability is what we're really notating. And it, it kind of conforms with, with gender, and, and just asking how a person wants to be described when you get introduc- intr- the introduction happens, whether you're getting that intake form from the front desk and you're ensuring that that intake form says, you know, first name, last name, preference name-

Liz Rohr:
Hm.

Andrea Dalzell:
... preference sex, preference, you know, how would you like to be addressed. It's how you kind of approach to situation, whether you make the little change by seeing that it's not on your intake forms and then you're saying we need this on the intake form.

Liz Rohr:
Yeah.

Andrea Dalzell:
So that you're understanding how you're addressing your patients, and then understanding that we're not gonna sugarcoat whatever it is that is happening. Disability can suck. We know that and we can say that. So say that. We don't need to add anything to it. Like special need, why? Why?

Liz Rohr:
Yeah. Yeah.

Andrea Dalzell:
You're human. This is your human need in this moment, and we have to make sure that you can get it. I'm not going to say that that's something special because it's not, it's what you need. Somebody else may need the same thing. But what, when we label things special bounded, we kind of seclude them from being a part of everyday life.

Liz Rohr:
Yeah.

Andrea Dalzell:
And we wouldn't want that for ourselves.

Liz Rohr:
Yeah.

Andrea Dalzell:
So just kind of remember that that part.

Liz Rohr:
Yeah.

Andrea Dalzell:
Like, at the end of the day, yes, we're talking about language and how we introduce it and how we want people to, to feel secure, and how they interpret what we're saying.

Liz Rohr:
Yeah.

Andrea Dalzell:
But we also have to understand what we're actually saying has that impact, and would we want that for ourselves? Would we wanna hear the words bounded, or never will, or your special now, or mental R or, you know, anything that's cringe worthy.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
Like, we wouldn't want to hear it for ourselves if we were in that situation. So it's kind of best to not label it, but call it what it is.

Liz Rohr:
Yeah. Yeah.

Andrea Dalzell:
And, you know, and you can always put a respect effort into that. This is, this is in no way meant to, you know, reflect any disregard to you, but this is what we're seeing. This is how we're going about it.

Liz Rohr:
Hm.

Andrea Dalzell:
How... Are you feeling comfortable? Because at the end of the day, if the patient's not comfortable, then you're not gonna get anywhere in your conversation or your language because that patient is gonna be stuck on one thing that was said.

Liz Rohr:
Yeah. Yeah, absolutely. And that brings us to the q- some, we had some questions from the Real World NP community. And one of the questions was, I think that some, and I, and I feel like I hear this, is like, I feel like people, they want to, um, give really excellent care to all their patients. They wanna be respectful when it comes to conversations about disability. And so their question, but they were feeling like uncomfortable, and so it's like, their question was like, what would you recommend in terms of like, respectfully discussing disabilities with a patient, especially like in the primary care setting? Doesn't have to be, but those are our primary kind of audience members. But how would you suggest to talk about in a respectful way, bringing up disability, especially if somebody hasn't brought it up to that person in the first place, that provider?

Andrea Dalzell:
Well, I think, at the, at the beginning of it all, is, is where your introduction starts.

Liz Rohr:
Yeah.

Andrea Dalzell:
If it's a new patient coming in, it's the first time that you are, are dealing with this patient, you, you ask, you ask the whole history, just like if anyone else would. And then my diagnosis is transverse myelitis. It's a neurological inflammation of the spinal cord that affected me. I'm an incomplete paraplegic. When I go in, I see a new primary care doctor and I write that diagnosis down. My hope-

Liz Rohr:
Yeah.

Andrea Dalzell:
... is that when I go into the room, my doctor doesn't have to know what my diagn- like what that particular disease process is.

Liz Rohr:
Hm.

Andrea Dalzell:
But I hope that when I'm going into that room and I'm meeting with that physician NP for the first time, uh, that they're asking me, how does it affect my life?

Liz Rohr:
Hm.

Andrea Dalzell:
It's not what they know.

Liz Rohr:
Mm-hmm. Or assume.

Andrea Dalzell:
Not what they read or assume.

Liz Rohr:
Yeah. Mm-hmm.

Andrea Dalzell:
They're going to ask me, How does transverse myelitis affect your day-to-day activity?

Liz Rohr:
Hm. Mm-hmm.

Andrea Dalzell:
I wanna hear what you're telling me. Because as a nurse, when I'm doing my assessments, and when I'm going through, I'm looking at the whole picture, right? 'Cause nursing, we're holistic, we're taking into account everything that's happening. So now, I've never seen you before, I'm doing an intake on you. And I wanna know, how does this process affect you? Just like if someone has diabetes coming into the room and you know that their sugar is like in the eight hundreds, and you're asking them, "Well, what did you eat for breakfast?"

Liz Rohr:
Yeah, totally.

Andrea Dalzell:
Did you take your insulin? Right?

Liz Rohr:
(laughs)

Andrea Dalzell:
The same question-

Liz Rohr:
Yeah.

Andrea Dalzell:
... that I'm gonna ask someone that's presenting to me-

Liz Rohr:
Yeah.

Andrea Dalzell:
... some type of physical disability. Can you tell me how your day-to-day life is affected?

Liz Rohr:
Yeah.

Andrea Dalzell:
That way, I can now start to have a baseline-

Liz Rohr:
Yeah.

Andrea Dalzell:
... you know, of what happens throughout your day, what happens throughout your weekly, monthly, yearly, so that at the very beginning, primary care, that's what we're at, is going to say, Well, no, something is off. She's not... Her heart rate's now elevated, her BP hasn't been down. There's something that we need to adjust, especially for wheelchair users or persons like that have quadriplegic, or who are tetraplegia, who go through traumatic brain injury, or CBAs, or paraplegic. All of these are all encompassing. So yes, I'm talking from the person with, using a wheelchair, but I'm really encompassing all disability here. Because disability can affect anyone, whether you're talking about the person with diabetes who had an amputation, whether you're talking about the person who had a CVA-

Liz Rohr:
Yeah.

Andrea Dalzell:
whether you're talking about the mom who had a cesarean who had maybe other complications, who are now going back into the work field who are dealing with scar issues or, or other things happening. This is all encompassing of disability that we don't think of, we think of what we see visually. What about those patients that are even, who have invisible disabilities?

Liz Rohr:
Yeah.

Andrea Dalzell:
Right?

Liz Rohr:
Yeah.

Andrea Dalzell:
Where we don't even know what their day-to-day aspects are, because we don't understand what that disease process is doing for them day in and day out.

Liz Rohr:
Absolutely.

Andrea Dalzell:
But we know what the diagnosis is, so we assume that they're automatically in that. This is what's gonna happen, this is what you're doing. But livelihood and diagnoses are not the same.

Liz Rohr:
Yeah.

Andrea Dalzell:
At the very bas- basics of primary care, we need to know what those diagnoses are doing to that person day in and day out.

Liz Rohr:
Hm. Absolutely, absolutely. And it kind of reminds me of, so I think some experiences, it seems like there's a bit of a process, right? Like for some... I've, I've had some people where they have like some sort of, neurological condition, for example, and they get progressively like less function over time. And they're really kind of grappling with disability, um, of like calling it disability, like using that language. Do you have any thoughts or guidance like around that? Or just yeah, just any sort of reflection about, I don't know, if you've, if you see that a lot, or if you had any recommendations about that. I guess I'm just thinking about a particular-

Andrea Dalzell:
Well-

Liz Rohr:
... patient having a hard time with calling a disability and, and receiving assistive, assistive support.

Andrea Dalzell:
Yeah. We are human and our, our human design is to believe that we are invincible, nothing will happen to us.

Liz Rohr:
(laughs)

Andrea Dalzell:
And you know when that, that hits the fan-

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
... when you sit in a doctor's office or an NP's office, and they give you some diagnosis that you were just not expecting to get, and your world turns upside down. And here's where we backtrack to language.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
How are we presenting what disability looks like? And then, with our own language and our own interpretation going back out into the world, because like I said, this is the circle that we're in, healthcare drives the narrative.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
NPs, primary care particularly drive the narrative to the outside world.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
What other corporations, facilities, institutions are reading on that paper. What you can and cannot do based on disability, right?

Liz Rohr:
Yeah.

Andrea Dalzell:
Versus what that person can do in their livelihood.

Liz Rohr:
Yeah.

Andrea Dalzell:
That, that turns into representation. Are we seeing people with disabilities in media? Are we seeing that in our everyday lives? Or are we still continuing the narrative that a person is wheelchair-bound, so they're gonna stay home, that this person has this new diagnosis, and because it's going to get progressive, they should already start to rest and not be a part of their livelihood, instead of being pushed to see what they can continue to do for how long they can continue to do it with the right supports in place.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
So that's one end of that, that person grappling is because of the fact that they don't know what to expect. They don't know what to look for, they don't know what to even ask for. So, saying disability, it's like, wait a minute, I'm not disabled. I can still do it.

Liz Rohr:
Right, right. That's such a good point.

Andrea Dalzell:
But at the same time, disabled doesn't mean that you can't do something, it's because our language is determining that you cannot do something, not that you cannot.

Liz Rohr:
That's true, yeah.

Andrea Dalzell:
So when we're talking to people, we have to remember that. If we're presenting something that may be disabling at some point, we're saying to them, disabled is not a bad thing. We're getting you this course that you need to continue your livelihood.

Liz Rohr:
Yeah.

Andrea Dalzell:
Right? Disabled doesn't mean you cannot, disabled means that we're going to get you the supports to continue.

Liz Rohr:
Yeah.

Andrea Dalzell:
Right?

Liz Rohr:
Yeah.

Andrea Dalzell:
But comes to language, it comes to how we present it. If we, if we present it as a negative, it's going to continue to be a negative.

Liz Rohr:
Yes.

Andrea Dalzell:
Versus if we perceive it as a human need and we're meeting your need.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
Great, we're here for you. And, and now you feel supported and now you can open up to us and tell us that your next appointment that this is working, this isn't working. And now we can actually be here and do better.

Liz Rohr:
Yeah, oh my gosh, I get... I'm like really emotional actually just like hearing you talk about that. 'Cause like, I don't know what it is, but I think, like so I did an interview recently with somebody, a diabetes nurse practitioner, and she was talking, and I love the way she described this. I think that there's, like a couple of things that are springing up for me, like one is that, there's, there's a lot of, it's not only the language we use, but like what does that language mean to that person? Like, I think that's really the thing that's coming through here is like, it's really just about like assumptions, what is your knowledge base? And like your knowledge base as like the nurses, the nurse practitioners, as the provider? And like, what assumptions are you making about that person? Or what is that... What assumptions is that person making about what that means, what you told them? Right?
There seems like there might be a breakdown there. But the other thing it reminds me of is in that conversation, we were talking about starting insulin for patients who have diabetes, is can... I think a lot of people, my anecdotal experience is, that they tend to, get really discouraged and feel like they did something wrong, or they failed, or, you know, like, it's just this discouraging, like, oh, like, not good feeling. And like, I just love the language that she used, it was about, like, when she explains it to people, it's like, okay, well, there's a hammer for hammering needs and then there's screwdrivers for screwdriver needs, right? Like, you just use the tool that you need for your needs, right?

Andrea Dalzell:
Right.

Liz Rohr:
Like it's just, it's just, it's matter of fact, it's plain. It's like, okay, like, I think, I think it's just like what you're saying is so highlighting, we just have this like, norm, like this cultural norm, like in healthcare in the US, like, talking about dis- disability as being like this negative thing, this other thing, but like, really, it's just everybody has needs and what are the needs that they have? And how do we support them as like a whole human? So I just, I really appreciate you saying that. And it's just, it's so great.

Andrea Dalzell:
(laughs) Thank you.

Liz Rohr:
Well, I have a question here. So another question this kind of ties into, is what, a question from the real world community is, what barriers do you think could be rem-, removed to make primary care more accessible? One barrier, multiple barriers, like any barriers that you can point to, specifically in primary care that could be removed or amended?

Andrea Dalzell:
Well, as, yeah, as an assistant nurse manager in a primary care facility right now, I can tell you, and I'm in a medical desert, so that, that goes to tell you as well, what my resources may be. I'm limited, but I have people who are coming into my facility with CBAs and strokes and TBI, and paralysis and everything under the sun, and I go into my clinic and my clinic doesn't even have waiting rooms that are a significant space to be able to hold a wheelchair or walker or mobility devices. Right? You're waiting rooms are so packed with chairs that where does a mobility device live?

Liz Rohr:
Yeah.

Andrea Dalzell:
Think about that part. That just... Is, is your facility even like-

Liz Rohr:
Yeah.

Andrea Dalzell:
... set up to withhold mobility devices? Or is it really just set up for healthy people to walk and they be seen, right?

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
What about your, your rooms? I think about just the basic.

Liz Rohr:
Oh my gosh, the room.

Andrea Dalzell:
The structure of the room. Okay?

Liz Rohr:
(laughs) It's wild.

Andrea Dalzell:
We don't think about these things. I worked in a hospital system where when I was going on shift, the person that was coming off shift, I would pull them and ask me to reset my room because I'm in a wheelchair and I need to make sure that I can get around the room easily.

Liz Rohr:
Totally.

Andrea Dalzell:
I'm in primary care now, and I go into one of my exam rooms, and I'm like playing Tetris between the bed, the chairs, the, the stirrups. Like, everything is everywhere, the, the scale, the, the garbage can. It's like you gotta get thing out the room, just to be able to move around-

Liz Rohr:
Yeah, yeah.

Andrea Dalzell:
... as a primary care provider. Now, if I have another patient with the mobility vise who comes in with an aide, who maybe can't get up on the bed because the bed doesn't go up and down, who can't get on the scale, because scale isn't only for someone who can step up. These are basics. Basic needs to have-

Liz Rohr:
It just keeps going (laughs).

Andrea Dalzell:
It's basic things. When you get into... How about getting into the office, are near, uh, a transportation, do you offer parking? Is your parking lot with accessible spots for wheelchairs, or walkers, or canes or, or service animals to able get out. When they come into your waiting room, you know, is there height adjusted seats so that someone who may not be able to bend too low can still sit down?

Liz Rohr:
Yeah.

Andrea Dalzell:
You know, these are, these are basic things that I'm thinking about.

Liz Rohr:
Yeah.

Andrea Dalzell:
But that's just the basic access to primary care, not even specialty service. So for me to find a primary care provider that's not OBGYN, that's not even hematology, that's not urology. It's just my doctor who I need to see-

Liz Rohr:
Regular.

Andrea Dalzell:
... make sure that my blood work looks good. And if I need to see a specialist, I can go, right?

Liz Rohr:
Yeah, yeah.

Andrea Dalzell:
Like the basics, the basics for prescriptions, it's like why do our patients not come into the office to see us before they end up in the ER?

Liz Rohr:
Yeah.

Andrea Dalzell:
Because the ERs accessible. The ER is accessible (laughs).

Liz Rohr:
It's so true. It's so true.

Andrea Dalzell:
Right? So those are things you got to think about, like, why are patients... Why are we not getting patients? How do we get more patients? How do we even ensure that we are, are free for them to come in? It's just the barriers. Are your website's accessible? Can someone who is visually impaired or hearing impaired access your stuff?

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
We don't think about these things because it's not incorporated into our learning. The language isn't a part of our learning.

Liz Rohr:
Yeah.

Andrea Dalzell:
We're not... When we talk about disability, we're thinking about, okay, they may not be able to walk, they may not be able to talk, they may have aphasia, they may... You know, all of these things, but we're not thinking about the livelihood. Now, how do they get into the office? Is there transportation? Can they come into the... Can I get them on a scale? Can I weigh them? A lot of our calculations are based off of weight.

Liz Rohr:
Yeah.

Andrea Dalzell:
And I can tell you that the amount of patients that don't get weighed in just primary care is-

Liz Rohr:
I was gonna say, I mean, I think that's, that's, I see this all the time. And it's just like when are gonna wait on this person, they have heart failure. This is really important. Like it's important regardless, but it's like, it's like, wow, that's really horrible. Yeah.

Andrea Dalzell:
And, and, and just basic, right? Or even just to get onto an exam table.

Liz Rohr:
Yeah.

Andrea Dalzell:
Does the table come down? Do you at least have one exam table-

Liz Rohr:
Yeah, one option.

Andrea Dalzell:
... that can come down, up and down, so that if someone can't get up, can we still do a physical assessment on them and get something good? But again, like I said, I'm paraplegic. I'm an incomplete, I cannot stand. So when I'm inspecting doctor's offices or consulting, I'm often looking for what their assessment intake would be for like someone like me coming into the room. So if I get up on that table, can I turn left and right? Can you ch- do a skin check, right?

Liz Rohr:
Hm.

Andrea Dalzell:
Because that's what's happening in primary care. You should you be doing a skin check on someone who has, you know, neuropathy or paralysis, because you should be making sure that the skin integrity is good for the long-term. Doesn't happen either. Especially if there's a weight discrepancy. Now, I've seen you six months, you've gained some weight, you're sitting in a chair, I may need to order a new chair. And I can't get you on a table and I don't have a weight.

Liz Rohr:
Oh, it's so painful. It's so painful.

Andrea Dalzell:
Right? (laughs)

Liz Rohr:
'Cause it's like no- It's just, it's, it's subpar care. That's, that's not okay (laughs).

Andrea Dalzell:
But how can it be so subpar care if the basics of your information that you learned doesn't include it?

Liz Rohr:
I know. I know.

Andrea Dalzell:
Right? The basics of what we learned, especially in like NP school, like I'm in NP school now, so.

Liz Rohr:
Yay. I'm so excited. I didn't know that. Oh, my God. Amazing.

Andrea Dalzell:
(laughs) Oh, that's a, that's a special release for this podcast.

Liz Rohr:
(laughs) Excellent.

Andrea Dalzell:
Right? Finished my master's in nursing education and now I'm in NP school. So, you know, I got these textbooks and I'm like, looking through it. And I'm like, trying to like, see what they're saying and, you know, understanding just the basics and absorbing it. And I'm like, wait a minute, we don't even talk about disability at this level either. Like, it's not integrated into what a diagnosis would be.

Liz Rohr:
I see.

Andrea Dalzell:
It's not integrated into what my assessments would be. And I'm like, so do I need to com- complete like whole new assessment? Like what would be a great assessment for these particular categories?

Liz Rohr:
Yeah.

Andrea Dalzell:
And a lot of people will say, "Well, that's in specialty." And I'm like, "Do you know what the wait list for specialty is right now? You know, do we know what insurances are putting up against seeing specialists in general?" This is where primary care really can, can integrate into community health and say, we have thought about these things and we're implementing them, and really pushing the American boards to say, you know, specialty care starts with, with primary care-

Liz Rohr:
Yeah.

Andrea Dalzell:
... if we have to be able to do these assessments, and we have to be able to have basic access to be able to do these assessments,

Liz Rohr:
Definitely, definitely. Oh, my gosh, that's so, yeah.

Andrea Dalzell:
(laughs)

Liz Rohr:
I mean, I guess the way that I'm thinking about it, too, is like, I have this systematic approach, I shared with you, I have ADHD-

Andrea Dalzell:
Mm-hmm.

Liz Rohr:
... and I think that that helps me, like, do the same thing in the same way every single time. And so when I think about assessing with disability, I'm thinking about how do I approach like eye pain? Like, how do I approach a cough? Like, what is that differential, excuse me, differential diagnosis, but also like, what are the assessment pieces? And like, that is like a very clear opportunity in there of like, okay, you have somebody who uses this assistive device, what is your checklist of things you're gonna assess for that person? What questions do you wanna ask? Like, what is the metric that you're gonna measure? And it's just, it's like, we're talking about, it's like, of course, this should be in the curriculum, right? Like, this is so easy, just do it (laughs).

Andrea Dalzell:
Right, right. And, and again, it's not just for someone who's paraplegic, like we can also-

Liz Rohr:
Yeah.

Andrea Dalzell:
... attribute someone who may have, uh, CVA who's now coming in who may have had tetraplegia, or quadriplegia, or hemiplegia and maybe their hand function is, is lessened and they're, and they're constantly clenched fist, maybe we should be saying they should be using a stress ball or getting fitted for a brace. And while they're waiting for a brace, they should be doing this, right?

Liz Rohr:
Yeah.

Andrea Dalzell:
Like, these are all the things that we should be thinking about just in primary assessment.

Liz Rohr:
Mm-hmm. Definitely, definitely.

Andrea Dalzell:
Before you leave us, let's make sure that we have this in place.

Liz Rohr:
Yeah. Totally, totally. And that, that makes me think of, we had a couple of questions. And we had a couple... You and I had a couple of thoughts about this. We had a specific question about workplace accommodations, like, this person has a neurological condition, that is progressive, and has concerns about just navigating that for themselves, in terms of what that looks like. Maybe starting with that and then we can talk more about, like, what are some things people don't know about workplace acce- accessibility and like resources?

So maybe the first question to start is about like, what are workplace accommodations? Like, what does that mean? What does that usually look like?

Andrea Dalzell:
So workplace accommodations, literally, is to make sure that you can do the job with, at the capability that you're able to how you show up.

Liz Rohr:
Yeah.

Andrea Dalzell:
It's not giving someone a leg up. It's not, you know, making someone's job easier.

Liz Rohr:
Yeah.

Andrea Dalzell:
That's not what an accommodation is. An accommodation is so that they can actually do the job the way that they can, and, and passively that's safe.

Liz Rohr:
Yeah.

Andrea Dalzell:
And, and, you know, a lot of, we use this negative term around, around accommodations or workplace accommodations, like what does that mean? Like do I need to get... Anyone can get it at any point in time. And I love to reference a woman who has had a baby who now comes back to work who may be on a pumping schedule, right?

Liz Rohr:
Yeah.

Andrea Dalzell:
She needs to get those workplace accommodations so that she can take that half an hour to pump every two to three hours. Right? Is that really an accommodation? I'm a woman, I'm gonna say no, that's not an accommodation. That is a very necessary need that needs to happen, but for the patriarchy, yes, that's an accomo- accom- accommodation. And that doesn't give that person a leg up in their job, that's meeting their need, so that they can continue to do their job.

Liz Rohr:
Yeah.

Andrea Dalzell:
Right? And I think that's what we have to meet first. We're meeting human need. Healthcare workers are not synonymous with being healthy.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
Not because we're healthcare workers means that we have to be 100% healthy.

Liz Rohr:
Yeah.

Andrea Dalzell:
That narrative is false. And when we continue to perpetuate that narrative, we put a stress onto us that is unobtainable and a sense of perfection that will never be achieved. Because we're human beings at the end of the day, and we have human need, like our nurses that are going through mud right now in, in Fort Lee and in Florida, you know, we're right after Hurricane Ian. And these nurses... And these health care professionals have shown up and lost everything and continue to take care of other patients, while their human need is, is at the bottom of their priority list. But they're working through trauma. And if we were really to consider that as a profession, we would say that their accommodations would, that they would take a month off after all of this, right?

Liz Rohr:
Yeah.

Andrea Dalzell:
That would be a decent accommodation to say after you've worked through 13, 14 and 15 days post a hurricane where you've lost everything, possibly family, that you take some time for you.

Liz Rohr:
Yeah.

Andrea Dalzell:
And accommodation is making sure that your needs are met. But you know, we're, again, in a capitalist society. And you know, what I say is the pipe dream, but that doesn't mean that we can't advocate for it and it doesn't mean that we can't advocate for our needs to be met-

Liz Rohr:
Yeah.

Andrea Dalzell:
... at our work places, whether we have a disability, or we don't.

Liz Rohr:
Yeah.

Andrea Dalzell:
Because again, and I love to say this, disability does not discriminate. It is one of the class systems that anyone and everyone can join at any given point in time.

Liz Rohr:
(laughs)

Andrea Dalzell:
It does not discriminate, right?

Liz Rohr:
Yeah.

Andrea Dalzell:
We are the fastest and largest growing majority in the world. Okay, we have 1.8 billion people who, who self-identifies with a disability, let alone those that do not identify. Right? So if you have the opportunity to join at any given point in time, then you need to also remember that someone who is meeting you, in the place that you're at, is deserving of any accommodation, to allow them to be human and live. So that doesn't matter whether we're in healthcare or not.

Liz Rohr:
Yeah, yeah. And it's, it's like such, it's such big stuff, because this is such, like a cultural movement conversation. Like, it's really, it's just, it's, it's so much. Like, it's, it's really like, it's all rooted in that right? Because I think that people... I think the, the question, if I'm reading the subtext there, is that there is a lot of fear. Um, there's a lot of uncertainty and a lot of fear of like, how do I navigate this? I'm gonna get pushed back, like you were saying of like, you know, it's a leg up, like there's this negative connotation with it. So it's, um, it's really, it is, it is really tough.
Um, one of the things that you, you had brought up before is talking about, um, uh, I believe it was ta-... you were talking about ADA resources, or you were talking about, like, what is it that people don't know about whether it's workplace accommodations or accessibility, like, what is it that people don't know that you like, wish that they knew?

Andrea Dalzell:
Oh, that your job is not where you stop (laughs) right?

Liz Rohr:
Yeah.

Andrea Dalzell:
If your Job says, No, go up (laughs). Go up. Listen, you know, and, and this started for me since nursing school, um, I got into nursing school based on merit. And then when I was in nursing school, I was told, like, orientation level, told that I wouldn't be able to be a nurse because of my wheelchair, and, you know, going into the hospital system infection control, and not being able to do CPR, and all these assumptions. And I had to prove a point that I could do it and please don't put this assumption on me. And I went through school without an accommodation. And that was harder on me to not ask because I didn't want the, the notion that I couldn't do something.

Liz Rohr:
Yeah.

Andrea Dalzell:
And you weren't gonna say, well, she could do it because of an accommodation. Right? But then I had to shift my own narrative. Wait a minute, accommodation isn't a bad thing. If I need 10 minutes extra time then I need 10 minutes of your time. If I get 20 minutes to go use the bathroom every two hours, and I am given my 20 minutes, we'll use the bathroom because everyone else can go to the bathroom, and not have to worry about it, where I may have to go find an accessible stall on some next level floor. Right? Remember that your human need is the most basic thing that you have to meet in order to show up as your true self at any job.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
So you asking for an accommodation is not a bad thing.

Liz Rohr:
Mm-hmm. Mm-hmm.

Andrea Dalzell:
The, the job force that may say no to you, because they don't want to pay for your accommodation, or implement your accommodation, or saying that it is too burdensome, go above them, file a report. Put in those reports with the ADA, put in those reports with JAYCO, put in those reports with, with the commissioner of your state, put in those reports with the EEOC, which is the Equal Opportunity Employment, um, Commissions. Like do not allow for corporations, facilities or institutions to tell you that they cannot meet your human need-

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
... for you to be able to work. If you still can work and you have the ability to do so, don't let someone say that you can't.

Liz Rohr:
Yeah, absolutely. Absolutely. So I like to ask people who are a specialist in some way, uh, when I do these interviews, uh, from your paradigm of your specialty, what is, what is like a pet peeve that you have, or what is something that you wish primary care providers knew?

Andrea Dalzell:
Oh, everything. I can't, I can't-

Liz Rohr:
(laughs) Go for it. So pa- This is so pax time.

Andrea Dalzell:
(laughs) I can't like... back, but like, honestly, my pet peeve is just like, when you're filling out these forms, and, and like I understand that some people are gonna come in and you get inundated with forms. And that, you know, you automatically are assuming they can't do something where you're gonna put down like, you know, unable to reach, unable to stand.

Liz Rohr:
Yeah.

Andrea Dalzell:
You know, because that's what these forms are asking. How long could they stand? How can they reach?

Liz Rohr:
Yes.

Andrea Dalzell:
Right? Can you not say that I cannot stand, like, I sit down perfectly fine. Standing is not the option here for me. Right? I can sit for 12 hours, but if you say I can't stand, my job will automatically think I can't do the job. Right?

Liz Rohr:
Ah, interesting.

Andrea Dalzell:
Like this is here, this is like, I have to get paperwork done, like, to a tee because it has to go based on what my ability is, not based on what the wording is. Right? And the wording is gonna say, the wording is ableist, the paperwork is ableist. Paperwork is coming at you as, can you be this super cute, perfect human? Are you 100% "normal"? Right?

Liz Rohr:
Hm.

Andrea Dalzell:
Normal. So can you stop trying to fill out-

Liz Rohr:
Yeah.

Andrea Dalzell:
... paperwork as though someone is fitting the box of normalcy that doesn't exist.

Liz Rohr:
Yes, exactly.

Andrea Dalzell:
If they can stand, like, what is the job for? How long are they standing? Should they be standing for six hours or 12 hours anyway?

Liz Rohr:
(laughs)

Andrea Dalzell:
Your medical opinion, do you think that that's okay? No, it's not okay. It should-

Liz Rohr:
Right. The norms are the messed up thing. Like, the no- the cultural norms of what's expected is the, is the thing that's messed up. Yeah.

Andrea Dalzell:
It's really messed up. But then we, we, we... The pet peeve is that we, we enforce those cultural norms by how we continue to address them, just by paperwork. And I understand that, you know, we, we have, what? 10 minutes to see a patient, 15, if we're lucky. You know, 30 minutes, if it's an annual exam. I get it and I hear you guys. And I know that it's hard to tack on more, but we're not tacking on more, we're changing our language.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
We're starting at the basic level of access by saying, Tell me what you do in your livelihood, and I'm going to make sure that this translates. And as I see you every six months to a year, because that's primary year, if anything changes off that baseline, we can reassess and we can change the forms to such to meet your needs, and get you the accommodations you need.

Liz Rohr:
Totally.

Andrea Dalzell:
Right. So that's my pet peeve, my pet peeve and my secret.

Liz Rohr:
Yeah.

Andrea Dalzell:
I'm giving you the pet peeve change your language, go by their livelihood and like, please, love of God, do not say wheelchair-bound, do not say bound on anything.

Liz Rohr:
(laughs) Strike that off, right out of your language.

Andrea Dalzell:
Take it off. We're not handicapped. You know, we're not, we're not special needs. We're not bound, right? We're disabled humans. We, we don't have anything special about us. It's just we need things that are going to make our lives just as easy as it is for you to be able to say I'm standing up.

Liz Rohr:
Totally, totally. Well, I have one quick question about forms.

Andrea Dalzell:
Yeah.

Liz Rohr:
So it sounds like, like the form itself is problematic, right?

Andrea Dalzell:
Of course.

Liz Rohr:
Um, and the place that the language starts is in primary care, which influences, right? Everything on in like the world outside of primary care. So like, what, what, um, what adjustments do you recommend, um, primary care providers who are trying to provide assistive support or, um, whatever accommodations that they need at their workplace? Like what is, what is like a positive way to impact that from the provider perspective? Like a way of answering it or any, any thoughts there?

Andrea Dalzell:
I think this is where we come back to that initial, that initial intake.

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
What does that initial intake form look like in your practice, whether it's private, whether it's, you know, with an insurance company, what does that intake form look like? Because then you're going to see what the patient is trying to address for themselves. Right? So you're asking them their pronouns, you're asking them what they wanna be called by, you're asking them, you know, how do they address their own diagnoses? How do they address their disability? Are they paraplegic? Are they, are they a wheelchair user? Are they a cane user? Walker user? Whatever. They're going to put that language on their intake form first. You're just asking, how do you address your own disability?

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
Do you identify as, as a person with a disability? If they check off yes, then you're asking, you know, the next part is, uh, how do you identify with your disability? Wheelchair user, walker, cane user, whatever the case is, because that intake form is then going to pull, give you the basic information in their own profile, whether you're on Epic, which I love Epic, or any other, uh, programming that you use for that, for your patient information, it's going to be there. You're going to see how they address themselves first.

Now, with their baseline assessments, can they bend? Can they stand? Can they reach above their head? These are things... We squeeze... We have our patients squeeze our fingers to make sure that their hands are the same, right?

Liz Rohr:
Mm-hmm.

Andrea Dalzell:
We check their feet for neuropathy, we, we check their ears. The same thing goes for someone who has some type of physical issue. If you're sitting down, you're using a wheelchair, um, are you able to push yourself all the time? Do you do all your groceries on your own? Are you able to cook? What needs aren't being met that you need to have met that we haven't discussed?

Liz Rohr:
Hm.

Andrea Dalzell:
It's having that conversation with the patient. Because then when you're filling out those forms, and it says do you stand for 10 hours, you can cross out 10, stand, say sit and you can say, yes, can sit fine for 12 hours, right?

Liz Rohr:
Totally.

Andrea Dalzell:
'Cause you're the medical professional that understands that my body can sit for 12 hours and it doesn't need to necessarily stand up.

Liz Rohr:
Right, right, which a nonmedical person in a workplace setting may not be able to understand.

Andrea Dalzell:
Right. But that's how you, that's how the, the narrative changes on the paperwork.

Liz Rohr:
Yeah.

Andrea Dalzell:
'Cause now I'm not just saying cannot stand.

Liz Rohr:
Yes, right.

Andrea Dalzell:
It's cannot stand. That's it.

Liz Rohr:
Yeah. Yep.

Andrea Dalzell:
Ability is done.

Liz Rohr:
Yeah (laughs)

Andrea Dalzell:
Cannot see.

Liz Rohr:
Yes. It's not like, it's not affirming. It's just negative.

Andrea Dalzell:
Right. It's just saying it isn't. But this is where technology also impacts healthcare.

Liz Rohr:
Yeah.

Andrea Dalzell:
And we may not know what's out there, but we know how the person lives day-to-day and that's just in basic primary assessment. We know how you live, we know how you're able to do something. We assess every six to, six months to a year.

Liz Rohr:
Yeah.

Andrea Dalzell:
We know something's changing. So if your paperwork needs to change, we change it.

Liz Rohr:
Yeah. Yeah.

Andrea Dalzell:
You can no longer-

Liz Rohr:
And it's, and there's no baseline... It doesn't really feel like there's a baseline assessment. Like, it's very problem-based, where it's like, okay, you have visual impairments, you have hearing impairments, right? But it's not like, that's not a, that's not a routine part of our schooling, or our practices, really, of like, everyone should have that. Right? And then it's just a normalized thing of, like, everyone has a physical, like all of these different assessments, and then what assistance do people need? 'Cause everyone's gonna need something, right? And it's just a, it's just a gradation piece versus like an exception or an afterthought, or, you know, like, the way it's treated at least now.

Andrea Dalzell:
Right?. And then in primary care, that's exactly how it works. Right? Okay.

Liz Rohr:
Yeah.

Andrea Dalzell:
I see you come in, you're holding your arm, it can't stretch out, we should probably send you for an X-ray. X-ray comes back inconclusive, we send you to a specialist.

Liz Rohr:
Yeah.

Andrea Dalzell:
But that's exactly how it works.

Liz Rohr:
Yeah.

Andrea Dalzell:
It's we're not, we're not doing anything different.

Liz Rohr:
Yeah.

Andrea Dalzell:
We're just standing on where we're at for those that are coming in with different needs.

Liz Rohr:
Yeah.

Andrea Dalzell:
Because normally we don't include their needs into our notes-

Liz Rohr:
Yeah, yeah.

Andrea Dalzell:
... in primary care.

Liz Rohr:
Yep. 100%. Yeah, absolutely. Well, um, thank you so much for this. Are there any other kind of like parting pearls of practice, words of wisdom, or, um, any, uh, if you wanna share where people can find you? Uh, and-

Andrea Dalzell:
Yeah, so all my social media handles are @theseatednurse.

Liz Rohr:
Perfect. We'll have that down below in the description.

Andrea Dalzell:
Yeah, that's it. @- @theseatednurse. Find me, you can Google me. Um, but my parting words, to anyone that has a newly acquired diagnosis or disability, or if you feel overwhelmed listening to this, like, Oh, my goodness, just take a second and realize that we're not talking about anything other than human need, and, and, and human needs being met. And as medical professionals, we get to firsthand see, care for, treat, and be the person that sees these people in their most vulnerable state.

Liz Rohr:
Yeah.

Andrea Dalzell:
So we can see the impact and the narrative to help them, so long as we keep it positive and not always just put a negative connotation over it.

Liz Rohr:
Mm-hmm. Mm-hmm. Totally, totally. Well, awesome. Thank you so much again, I so appreciate it.

Andrea Dalzell:
Yes, Liz. Thank you so much for having me.