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Other Advocates

Last updated on November 13, 2019

*Intro Music*

Gavin: Hi, welcome back everybody to week five of the effortlesspodcast, our podcast on universal design and accessibility. My name is Gavin.

Paige: And I’m Paige.

Gavin: Hi everybody! So last week we did a little bit of discussion about the history of buildings at Saint Joseph’s University where we are students, and we talked a little bit about the future in terms of how the university is planning to expand in 2020, what implications that will have for accessibility what might be a benefit, what might not, what might be neutral. and this week we’re gonna do an interview that’s going to give us a little bit of info on the other side of it, the other side of accessibility issues, which is focused more on self advocacy. This is gonna interface too a little bit with what we, our discussion that we had with Dr. Tudor, who works at the University. We talked to her a couple weeks ago about her experiences working at the university and dealing with problems with mobility and our discussion with her was really illuminating, I thought. She talked about how really the biggest obstacle, well universal design is one thing right, but the other side of it is issues with mental health, self esteem, and learning how to navigate your disability in a world that is not always going to be accomodating to you. So, as a function of that, were gonna do a little bit of an interview about an organization locally who Paige was good enough to get in contact with, who are doing some work advocating for people with a variety of disabilities.

Paige: Yeah that’s right Gavin. So Inglis House is a house that is really a residential home for those who are confined to a wheelchair. They are really close to our campus, about five minutes away, just right up City Ave and kinda off to the side. I have been volunteering there for a couple years, ever since I was a freshman at Saint Joe’s. So Inglis House is really a place that is so special and so near and dear to my heart, I love them all tremendously and they were so so gracious to kinda take the time to talk to us a little bit about a couple of things that they offer for their residents because Inglis house is a home for those who are in the middle stages of their lives, it is not an end of care facility or nursing home or anything of that aspect, I think their youngest resident — we’ll talk to Patti about getting the specific age but is in their twenties and then their oldest is their seventies or eighties. So they definitely have a wide range of ages there. So, they really do a lot of work to kind of have a lot of adaptive technology for their residents and kind of–they talk to us a little bit about how advocacy plays a role in that, right? So what does that mean for people who are speaking up for themselves or whose on their team that’s gonna speak up for them? And the many different things that kinda help us kinda get a glimpse into what it means to be living with a disability or living to be living while confined to a wheelchair and it kinda gave Gavin and I a little bit more of an insight to what that means because again, were new at this and this is something that were learning and growing with so we’re gonna ask all the questions and were excited to see! So they were so gracious to speak with us, we’re excited!

Gavin: And it’s gonna be, it’s gonna be interesting because I think that this is an important exercise in making sure that their clients can meet the world halfway in a sense. You know it’s, its learning what really needs to be worked around in terms of a variety of cognitive and physical disabilities. But it’s also important that these people know the first step in learning what their options are, they know what’s out there for them. So we’re gonna get a good glimpse, I think, into what it’s like on the ground helping people figuring out how to navigate the world around them.

Paige: Exactly, and Inglis is a perfect resource for that. They really do have some of the most wonderful, wonderful people who are on the Inglis staff. So were going to talk to Patti, Charles, and Katie who are some of the staff members at Inglis house, and we’ll have them introduce themselves and they’ll give us a glimpse, just into a little bit about how Inglis house really helps its residents in the best way that they can with advocacy, adaptive technology, moving forward in an ever changing world and just how happy their residents are to be able to live their life exactly as they want.

Gavin: Hey guys, welcome back to episode 5 of the effortless podcast, our podcast on accessibility and universal design, my name is Gavin.

Paige: And I’m Paige.

Gavin: Hey everybody, so this is going to be our second to last episode for a while, which is insane, it feels like we just started this.

Paige: Oh it’s gone by so quick, it’s kind of crazy actually.

Gavin: And we’ve learned a lot and talked about a lot, and we’ve still got a little bit of stuff to show you guys this episode…last episode we talked a lot about specifically about St. Joe’s where we’re students, talked about some of the history of its buildings, some of the history of the development of buildings on campus, and a little bit about the future, with regard to what it’s going to be implementing as a sort of “master design plan” for 2020, which has started developing after a huge donation. We looked at some of the accessibility issues that may come up with that master plan, some of the big changes that they’re making. We came up with some pretty interesting stuff. This week we are going to be changing task a little bit. We are going to be focusing less on building specifically and more about advocacy which in my estimation probably the way things are now and in terms of accessibility probably the most important thing.

Paige: I agree. It is tough and it is definitely more about advocacy and speaking right now and working with the changes that we are talking about . Especially with not only what Saint Joe’s has for the future, but what is happening now. So this group of people is Inglis House. Inglis House is a home that is located in West Philadelphia for people that are confined to a wheelchair. It is not a nursing home, or an end of care facility, it is rather a life facility. So the youngest resident is 18 (editor’s note: it is actually 22) and the oldest resident is 72. So some of these people were born with spinal deformities or accidents that brought them to Inglis for they have an inability to walk. Or they have a progressive disease, MS for example, which we will learn more about. So we really wanted to highlight this house just as a comparison for everybody.

Gavin: Right, this is great stuff what these people are doing and it is significant to realize that this is not just the elderly that are affected, but people of all ages, with all different backgrounds, and all different conditions. I think that this is an important thing to talk about, the whole advocacy thing. In our conversation with Dr. Tudor that we mentioned, I think over the past couple of episodes we mentioned, that she discussed how applying her experiences to the ‘real world’ (vs a university) about what you have to do when you have a disability and seeing where you can advocate for yourself and where you can ‘work arounds’ for whatever you are dealing with. What she seemed to be getting at in our conversation with her was that it helps to figure out what you can do as an individual without as much assistance because that is a good way for figuring out where there are no workarounds or where focus needs to happen so that people that are perhaps dealing with the same thing she is. How can I advocate for people for myself? For like me? There is a situation where there are no decent work arounds and where change really needs to happen rather than being something that may or may not help a group of people.

Paige: Exactly! Inglis deals with this on a large scale because they are working with people, like Gavin said, who have to advocate for themselves 24/7. Inglis House, we will get to see, as well as what it looks like in Philly, PA, and more state and regional laws that help advocate for these people and what they have to advocate for themselves. So we are very interested in learning more and we are going to talk to Patti who is the Volunteer Coordinator. We are going to talk a lot about how people that are currently suffering from a disability need people to advocate for them as well.

Gavin: Yes, and we thank Inglis House for talking with us today. Getting an idea of how advocacy operates in the real world is going to be huge for understanding how we can try to affect change in the future especially as people who are able bodied and don’t necessarily deal with the issues directly. So it is a great opportunity and we are going to see behind the scenes, like Paige said.

Paige: OK so now we are getting ready to call Patti, who like I mentioned is the volunteer coordinator at Inglis House, and we are calling just to talk to her a little bit about advocacy at Inglis House, what they do to advocate for their residents and what we can do to help out as well. Let’s give her a call.

Paige: Alright. Hi everyone, so I am here with Patti with Inglis House and Katie and Charles who are our adaptive technology specialists at Inglis House. Hi guys!

Everyone: Hi!

Paige: So today we just want to talk to you guys a little bit about Inglis house, your advocacy, and innovative technology. So what is Inglis House for some of our listeners who may not know?

Patti: So Inglis House is located just up the street from St. Joe’s, so right off of City Avenue. We are a long term care facility for adults who utilize wheelchairs. A lot are power wheelchairs. It is for a lot of adults with varying disabilities. It’s been here actually since 1877, but it’s been in this location for about 100 years, and we actually work with a ton of St. Joe’s students that come through to volunteer part-time.

Paige: Ah yes, I loved to volunteer there. So what is the age of your youngest resident, just a ballpark?

Patti: You have to be 18 years or older to live at Inglis, but I believe now our youngest resident is 22, and I believe our oldest resident is about 80, but the average age is about 40 or 50.

Paige: OK cool, so talking a little bit about the innovative steps that Inglis takes for its residents, I wanted to learn a little bit more about the technology lab and adaptive technology that’s available, so many Katie and Charles can speak a little bit on that?

Katie: Yes! So at Inglis we have a residential computer lab, and it’s completely adaptive, it has 35 work stations, and it has multiple inputs, for our users so that’s anywhere from adaptive keyboards, a mouse, to some more higher-tech options like ID things, voice input, switch access, which is a synteract feature that can help people turn on their iOS devices, and we also offer training and support with them through our in-room support positions, so we have two….kind of our own geek squad available Mondays and Fridays, and the lab’s open Monday through Sunday, from 9 am to 8 pm, and during those hours residents are encouraged to use technology in the computer lab, if they’re not familiar with the technology they can receive training, if they have their own personal devices they can call our hotline, and also if they just want to learn how to use their device or want to learn about Facebook, or Gmail, or Instagram, they can just drop in on a workshops, or a class, or schedule one-on-one time with an educator. So that’s the stuff we’ve got going on with the computer lab, and I wanted to introduce Charles because he’s kind of the research, cutting-edge, 3D printing guru behind all of this.

Charles: Yeah, so based off of what Katie said, I’m from in-room support, we help residents with the tech in their rooms, and help with their personal laptops, cell phones, we’re starting to support Alexa devices, so it’s exciting because people are able to do more independently through that. So we’re setting up a lot of different customized setups, through voice control, like activating your TV, controlling your lights, but in terms of the research and development side we’re relying heavily on 3D printing to come up with new ideas for maybe getting a product out there that you can buy that will provide a solution to help you do something. That can be anything from eating devices, to help them hold their utensils, we can also print replacement parts for things that break, since we’re relying heavily on grants and government funding, 3D printing has been a really cost-effective solution because the material’s really cheap and we can also produce results within a couple days, bring it down, try it out, and gather some feedback to keep building on those iterations from the first prototype to the last finished item that will add something to their setup. And then we’re always on the lookout for, you know, what are the trends inside of this kind of assistive technology space, what are people relying on in terms of new methods. Because of Alexa we’re seeing a lot of voice control, and we’re trying to stay on the edge and up-to-date with what’s happening, and seeing if we can always be utilizing the latest and greatest tech.

Paige: Wow, that’s great, it sounds like you guys have a lot of different options for everybody, so everybody really has the chance to come and not only to learn about technology in general, but how to use the adaptive technology and kind of find what fits best for them. Now, how long does it take to build a lab that’s as, maybe as large or extensive as yours is?

Katie: How long? This is something that Inglis has been working on for 15-20 years, it started out with just a few computers, and conducting research and going to conferences, and fulfilling the needs of the residents has made the technology just form into this…giant program that formed into so many different entities, whether it be for education, or, if somebody wants to use a computer with the help of a volunteer. So through the use of technology and the wants and desires of the residents, it’s become what it is today.

Charles: Well yeah, because it’s always evolving, so we’re getting bigger monitors, we’re incorporating monitor mounts for easier positioning and adjustments, we’re upgrading the PCs to get a lot of software that works with Windows 10, so it’s a constant progression. And you know, the lab will always continue to evolve because as tech and software does, we always have to be up to date with that.

Katie: Yeah, and that’s our advice to you as far as building something is to identify the need, and identify the people that’ll help solve that problem, like, a lot of this stuff is just finding solutions. You know, we wouldn’t know a lot of this information had we not had a resident with a need for it. And then it’s just problem solving, you know. It’s all just a big interdisciplinary team effort, you know? They wouldn’t know if somebody even had an interest in computers if our therapist didn’t contact us, or a social worker didn’t email us, or a family member hadn’t bought an iPad. Or maybe there’s an occupation therapist or physical therapist trying to reach out to us because a resident’s getting a new wheelchair and they want to make sure they can order it with Bluetooth compatibility. So it’s just identifying your team members, then identifying the team members, and just trying to solve them.

Paige: That’s great, that brings up…you kind of answered my next question, which is awesome, we were wondering where we would even start with a situation like this, we really wanted to make sure that it be all-encompassing, and you mentioned because technology is so constantly involved we wanted to make sure we would create a plan that would be able to allow for that adaptation and that room to grow, so kind of starting with assessing what our campus need would be is a great advice to be able to start, so thank you. That’s awesome.

Katie: Yeah, it’s really just identifying what you guys want to do, it could be structural, it could be ADA compliant, it could be just as simple as a few adaptive computers, it’s just identifying what you guys really want to focus on and then using your resources. Philadelphia’s obviously been here, and Inglis House is a huge resource for the community, known for its missions around disability. There are a lot of programs in the area that can assist you.

Charles: And we rely on RESNA a lot, because this field is so small that now research is available to you and everybody’s kind of in this shared stage of sharing knowledge with each other. You know, we’re always trying to help each other out, be it, you know…is there a product out there or a problem that we can’t figure out on our own? We’ll reach out to people that we’ve networked with over the years, and everybody’s really willing to help out.

Katie: Yeah, we’re partner’s with RESNA, which is Rehabilitation Engineering and Assistive Technology Society of North America, and that’s been a huge resources for us, because like Charles said we can go to forums, chat with someone there. But there’s you know, occupational therapy firms which there’s a lot you can do with, access and communication, physical mobility. There’s a lot of resources through that company, through that program, through RESNA. There are going to be other conferences and gatherings to have meetings of the minds and address disability needs in Philadelphia.

Paige: That’s great, thank you so much for sharing that with us, that definitely gives us a space to work from and really gives us a glimpse into what type of research we need to do, and kind of gives us a little bit of insight into what types of groups are out there that are able to assist everybody in achieving the same goal, which is great, that’s really what we like to hear, especially in our research of universal design and accessibility. It’s great to hear there are groups out there that help with that, because we haven’t seen any particularly stellar in the same goal that we’re trying to achieve, for universities at least.

Katie: Also as you know there are a lot of students who volunteer, and while they volunteer they’re also learning, they’re taking away a little bit of knowledge on disability or knowledge on accessibility, and we’re also looking into engineering programs.

Paige: Oh cool!

Katie: So we’re trying to look into student senior design projects. I don’t know if you have like engineering or, anything like that, or, can you maybe collaborate with another university?

Paige: Yeah, we did have something similar to that, but maybe not as extensive an engineering program as some other competing universities, but that’s cool that there’s like an option, that’s a good idea. We could reach out and maybe see if we could do a collaboration, or…it’s interesting that you guys are approached by so many systems like that. I didn’t even think about that, that’s really cool. And that’s kind of like a great segue into like a little bit more about what we wanted to talk to you guys, is about advocacy within these. Like how do the volunteers really impact Inglis in that sense?

Patti: You mean in terms of advocacy, or in terms of helping the residents?

Paige: Um, either-or, we just kinda wanted to get a little bit of a look. I know, but not everybody knows.

Patti: So, um, we have volunteers from basically everywhere, um, from all age ranges. We have some adult volunteers, we do work with a lot of student volunteers. We pretty much have volunteers in the building 365 days a year that assist the residents. We work with, because we’re in Philadelphia with so many other universities, we work with no only St. Joe’s but with a lot of other universities and medical schools in the are, and the residents really appreciate having the opportunity to work with and talk to budding health care professionals, whether it be nursing students, physician assistant students, medical students, OTs, PTs, any type of students. The residents really enjoy the opportunity to work with them, and kind of providing a way to understand how to work with the future and potential patients that they could have down the road, that patient interaction is really important, and having a really good bedside manner. Like right now, we actually work with Drexel Medical School for a whole year program which is trying to teach the students how to develop a longstanding relationship with the potential patients they could have. So it’s in all different aspects, we do some clinical work, but we also do some work where the students can just socialize with our residents and again residents really get to shape future medicine and how they want people to see them. It’s very important, so just the fact that students come here to open their eyes and expand their knowledge of working with people with disabilities, the residents like to do the exact same back and open the volunteers’ eyes on how it is to work with someone with a disability, where you find out that people are just people everywhere, everyone just wants to be cared for and treated with respect, and we’re able to really help fulfill that relationship that hopefully carries on with the volunteers who want things continued on past Inglis.

Paige: That’s awesome, that’s exactly what we’re trying to do, so that’s great to hear that, that Inglis House is really a place where people can come and learn and kind of understand a little bit more, and kind of hopefully take what they’re learning and understanding, and putting that back into their university, their home, their lifestyle, and just have a better understanding of what it means to be living with a disability and what they can do to advocate and really help out for everybody. To create that world where we’ll all be equally be able to move around and live.

Patti: I want to just add, a lot of the time when our students are here, whether their coming for an internship, or maybe this is their first interaction with a resident, they’re identifying a lot of needs that may be overlooked just because they have a different approach. Some of the time it’s just volunteering but then they get that one-on-one time and they’re really good at identifying things, and they kind of come back to us, and from their projects are identifying need, and coming up with solutions. So we have students come up with some really innovative things, or advocate for residents because they notice a problem, or maybe the comfort level. Sometimes the volunteer can also be a friend, and a lot of the time our volunteers, you know, become extended family and can help identify needs for the residents. So that’s always a really great outcome of our volunteer programs.

Paige: Yay, that’s perfect! You guys are so great.

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