KATE FIALKOWSKI  0:01  
Hi, this is Kate Fialkowski with the Institute on Disabilities at Temple University. This is being recorded for the Dischange 20 symposium online. And we're currently hearing from students and early career professionals on the topic, "expectations matter." I'm really delighted to have with me on the phone Luke Hoban, who is an Urban Bioethics student at Katz School of Medicine. Hey, Luke, how you doing?

LUKE HOBAN  0:28  
I'm good, how are you?

KATE FIALKOWSKI  0:29  
Doing great, thanks. I really appreciate you taking the time and being with us on this call today. Thank you.

LUKE HOBAN  0:35  
Of course

KATE FIALKOWSKI  0:37  
Now I gave a little introduction, which was just a title but would you like to share with us a little bit about your background? Who is LUKE HOBAN?

LUKE HOBAN  0:46  
Sure. So I am a 24 year old wheelchair user from around Philadelphia. I've been here my whole life. I am a wheelchair hockey player on Philadelphia's wheelchair hockey team. I went to Penn as an undergrad student, and I have a degree in science, technology and society. And now I am a master's student in the urban bioethics program at Temple. I'm particularly interested in disability rights and ethics and health care, and that sort of lens.

KATE FIALKOWSKI  1:27  
Terrific, thanks for that introduction. So your, urban bioethics program from this professional lens. Were talking about bias and expectations. So from your lens, what do they have to do with each other?

LUKE HOBAN  1:47  
So the way I see it is that bias to sort of create these expectations of people and bias is just a certain way of creating those own expectations of other people in your own head, before you even really chance to know them based on these surface level perceptions.

And I think that's the distinction that you need it's important because having bias itself isn't necessarily like a sin, because it's just sort of a natural human thing. But the important thing is that we're all aware of our biases, and don't let them create those expectations that we then act on and create discrimination, when we interact with other people, we need to be working to sort of counteract those biases, before they can have a negative impact on the people around us that we're interacting with.

KATE FIALKOWSKI  2:54  
So you just laid out a whole, you know, sort of a whole process from bias to expectations, expectations enacted to discrimination. Can you go into a little more detail on that? Because we moved from bias to discrimination. So can you go over that a little more?

LUKE HOBAN  3:16  
Yeah, so I think, the film we just saw "The Interviewer." I think that's sort of a good way to look at it. Because the two characters, Thomas, who was being interviewed, and Paul, who was sort of the boss of the company, at the beginning, both sort of have these biases against James who's the person with down syndrome.

And they both sort of go into it with certain expectations. But you see Paul, really acting on that bias and, you know, yelling, at James and keeping him in sort of a menial role that doesn't really contribute much. And you seeThomas really sort of evolve on that throughout the interactions that he has with James, and realize that the expectations that he had were flawed, and that, you know, the sort of the belief that we had, someone else shouldn't be doing the interview, or that James wasn't really the boss were probably just rooted in bias and sort of discrimination that he might not have even known that he had against people with Down Syndrome. And you know, that contrasts a lot with Paul. And I think the two of them are sort of the two ends of the spectrum.

KATE FIALKOWSKI  4:45  
Thanks for using that example, and I'm just going to interject for our listeners, that the film that you're referring to called "The Interviewer" is done by a production firm called Bus Stop films, and they have generously allowed us to put this the link to this film on the website for the symposium. So I just want to let the let the listeners know that if they scroll down on the symposium screen, they'll see the film "The Interviewer," and this version is provided with audio descriptions and captions.

So back to our main topic, Thanks for using that example of the film, "The Interviewer" and sort of that, you know, the three people, the three characters working together and the the interactions, and the central theme of it really is about a bias and how it gets manifested in that film. So thanks for using that example. So you talked about that. You talked about two ends of the spectrum. You know, Paul, and James. So tell us a little bit more about where what works well? Have you seen something that works well in an employment setting?

LUKE HOBAN  6:14  
Yeah, so I think an example that I've experienced and I was lucky enough in the last job that I had, I was a researcher at Penn, doing healthcare, operations research, and when I went in for that interview, I forget if I disclosed my disability or not in advance, but I went when I got the job they were they sort of expected that I was going to need some accommodations, to perform the tests and the job and coming to the office and fulfill my duties. And they were sort of open about asking about that, and do their best to accommodate that.

And they didn't necessarily try to pretend that my disability didn't exist. I think, you know, I've also seen it the other way where sometimes interviewing for a job, just sort of see, once they've laid eyes on me, that i'm in a wheelchair, and you can almost see their attitude change, and they sort of come in with preconceived notions. And even before the interview starts, I tend to have a feeling i'm not gonna get the job, so i've kinda seen it go both ways.

But where it has worked well, it's been the places that you know, are a little more open and willing to ask questions, and be accommodating and asking questions that aren't like frauding and intrusive but are instead about, you know how to make this job work for you and do something thats gonna be accessible.

KATE FIALKOWSKI  8:12  
You know, I'm thinking about what you're what you're saying. And we had I have the liberty of having talked to a couple other people for these interviews. And, you know, one of the things I have heard and also heard previously is, sometimes people don't know what to ask and that they don't know what's allowed or how to ask or what to do.

LUKE HOBAN  8:48  
Yeah, definitely tricky.

You know, like we were talking about before with these biases, a lot of people sort of want to pretend that their bias doesn't necessarily exist, and that the sort of expectations that society has around disability aren't things that we should talk about. And instead of sort of sweeping it under the rug, but then the effect that has is then makes it that much harder for people with disabilities to end up getting jobs and working in those places.

KATE FIALKOWSKI  9:36  
Yeah, well, you know, this idea this, we have an option of confronting our bias. We also have the option of sweeping it under the rug.

Um, I guess that I would say that maybe we don't know that we have a bias Until we see different people and in the moment of seeing a person, then suddenly we are forced to confront whether we want to sweep it under the rug or not, we're sort of forced to confront our bias.

LUKE HOBAN  10:19  
Completely agree, I think that that sort of when it sort of manifests, is when you first encounter, when you're first meeting that person.

And like I said before, it's all about how you react to that. Because, you know, your gut reaction, your immediate reaction isn't necessarily. it doesn't necessarily make you a bad person. Although there are probably real, you know, if you're hateful and bigoted as your first reaction, that's not a good sign. But if you have just sort of a questions or, you know, you're thrown for a loop at first, that doesn't necessarily make you a bad person, but it makes you think you need to not let that negativity impact your interaction. And you need to, for lack of a better word, get over it. And, you know, give the other person a fair shake, actively trying to put aside that initial bias.

KATE FIALKOWSKI  11:30  
So, Luke, what do you think? I mean, what is your perspective on career possibilities for for people with disabilities?

LUKE HOBAN  11:41  
Um, you know, like with any sort of person, it depends on the job, and it depends on the person.

When people with disabilities are given a fair shake, they can do a lot of the same things that nondisabled people can. Obviously, obviously, as a wheelchair user, there are things that, you know, I'm just physically not going to be able to do but thats the case for anybody.

You know, not everybody is qualified for every job. And I think that people, if employers are sort of willing to sort of acknowledge that the outset and focus on what people disabilities can do, and more specifically on what the people with disabilities who are applying for their jobs can do. Then now that creates a much more equal footing and i think that you know, if you're used to.

Again it just gets back to this whole idea of bias and, and being realistic about the people in front of you. You don't as an employer, you don't need to go in. And, you know, have this sort of sweeping perspective of every person with a disability and every level of qualification and say, I believe that anyone can do anything. But when the people, when people are coming to your door and applying for the jobs that you're posting, you need to look at them on their merits and say, what are their qualifications can they to do this job? And then, you know, what can we do to make that happen? And if you ask those questions, then I think you'll see that a lot of people with disabilities can do a lot more work than they're given credit for maybe at the outset.

KATE FIALKOWSKI  13:57  
Thank you. Now I want to switch gears just a little bit. I know that you are not only interested in science and ethics, but you're also a bit of a disability studies scholar. And so

Go ahead.

LUKE HOBAN  14:21  
 No, that's nice of you to say.

KATE FIALKOWSKI  14:23  
Well, I know it's a bit of a passion of yours. So, you know, from from a disability studies lens. Are there any ideas, you know, this is your chance. Also, to educate the listeners, I'm hoping that we'll have some students who are listening to to these audio files. So is there anything that you would like to educate our listeners about?

LUKE HOBAN  14:51  
I mean, I think that uh, you know, this sort of gets back to the sort of the idea of like, medical versus the social model of disability, which just as a crash course, refresher, is the medical model of disability basically, looks at a person's disability as something that needs to be fixed or shared, in order for that person to, you know, meet their potential, you know, they need to their disability needs to be dealt with, you know, in a strictly medical way, so they can sort of fit society's norm a little better.

And the social models says that the disability itself sort of a diagnosis, if you will, isn't in need of fixing what's needed. What needs to be fixed is society's expectations and the barriers in society, and acts that get in the way of disabled people and prevent them from, you know, interacting more fully the society.

So a good example is with myself when a lot of people see me, you know, they might think that because i'm in a wheelchair, that I want to cured  of my disability. Because that's sort of the predominant feeling that people get, and sort of the predominant lens that society has. But in reality, but for me, you know, I don't really care, I just need an elevator or a ramp so that I can get into these buildings. And that's sort of the more prominent barrier and then my wheelchair, or my ventilator or my diagnosis.

KATE FIALKOWSKI  16:51  
Thank you. I think that's, I think that's a useful lesson to be able to have to frame up you know, how are you thinking about disability and by changing your perspective from the cure perspective to a social model perspective, then you can also help be responsible for taking some action. Right. I think part of the challenge with the medical model is the medical model is like somebody else's responsibility and I don't have to do anything.

LUKE HOBAN  17:28  
That's a good way to put it. And it's sort on everybody to combat these societal. Not to use that word again. But that societal bias and discrimination sort of is everywhere. You know, it's not just something that medical professionals are responsible for. It's everybody's,

KATE FIALKOWSKI  17:58  
Everybody. Yeah. Thank you. Listen, we're just about out of time. But I, you know, I don't think that we can end the call without just acknowledging the current situation that we're in. We have a global crisis on our hands. And I just wonder if you have any advice for students and young professionals with disabilities. Any advice in this moment in time?

LUKE HOBAN  18:32  
Yeah, so there's a couple things that I was thinking about. When you're looking at employment and sort of seeking job hunting. One thing that's important, first of all, is to just to know your rights as a person with a disability, that there's too many to name on a phone call like this, but if you just do a role, disability, employment rights, there's some great resources out there. Now outlining what employers are, are and are not allowed to ask. I also think in a time like this, it's really important to find a community if that's possible. Whether or not that's people with disabilities or not.

But I think in particular, people with disabilities to really benefit a lot from either in person or in these days online communities. Even if it's just a Twitter hashtag,you know, crypto vote or something like that.

These online communities that can create more areas of connection. And I also think that you know, I think it's important for people with disabilities in particular, to remember that, you know, we're talking about all these things, but you know, if you do encounter bias or ableism in the job hunt, you know, it's important to not take...it's important to remember that is a reflection on the employer and their expectations and sort of the ableism that's sort of inherent of capitalism, and not a reflection of your value as a person

in everything, whether or not you have a job isn't the measurement by which you need to give yourself value. You know, everybody has value, whether or not they're productive, or have a job. And I think that as, you know, the world is increasingly chaotic and you know, we all see employment numbers and the economy changing rapidly. You know, you don't need to tie your own self worth and your value to those external measurements. And that's hard to do. It's something I've struggled with. But I think it's something that we really need to strive for.

KATE FIALKOWSKI  21:13  
Well, I think they're excellent words to live by. And I'm going to take the liberty of just repeating that thought. Everyone has value. Your job is not a reflection of your value as a person, quote by LUKE HOBAN, so tweeted out. Okay, again, I want to say thank you so very much for taking the time to be with us today. I really appreciate it Luke.

LUKE HOBAN  21:42  
Thank you.

KATE FIALKOWSKI  21:44  
Okay, talk to you later.

Transcribed by https://otter.ai