Okay, welcome to the session, my name is Dr. Maurice Scholes and I have a panel of dynamic, dynamic patient advocates and policy makers. I want to remind everyone here to silence your cell phones for all sessions except for workshops and audio is being recorded in this room, so if you have comments or questions, please go to the microphone so they can be recorded and they can be part of the larger history of the meeting. Evaluation forms, please, please, please complete the session evaluations, they'll be very helpful with future planning, and the sessions are also located in the mobile app, so those of you that don't want to be old-fashioned with the book and paper, you can use your mobile app to actually access all the course materials and do your evaluations. And as a reminder, please visit the pavilion downstairs, it offers interactive resources, educational opportunities, including the AAPM and our learning center with complimentary hands-on education throughout the assembly on multiple topics. Sponsored educational theaters and cadaver labs are there as well as expanded career centers, so check out those new opportunities, they're free to all of the attendees. With that housekeeping, I want to take the time to thank you for coming and introduce my panel. If you all would tell us a little bit about yourself, and we'll start with Allison Port, who's the chief of staff to city council member Leslie Harris, and she's the city council member from district B as in Boyd, who chairs the quality of life committee and serves on the transportation and airport committee and public works and sanitation and environment committees. Allison, welcome. Thank you. Hi, everyone. Like you said, my name's Allison Port, I'm the chief of staff to council member Leslie Harris, who does all those things and a lot more. She is my third council member to work for, so I think it's fair to say I've been through the ringer on a number of accessibility and all the issues. Myself, I am an attorney. I've worked in government, at the state, local, and federal level, as well as in the nonprofit arena, and I have a background in social work, so I'm happy to be here. Excellent. Excellent. Next up, I'd like to introduce Mr. William Newells, a military veteran, human resource professional, and workforce sourcing specialist whose lived experience as an athlete, adventurer, and traveler with quadriplegia really gives him a unique insight into what we're talking about today, and he is with the Paralyzed Veterans of America. William Newells, please say hey. Hi. My name is William Newells. You can call me Billy, and like Maurice said, I'm an avid traveler. I'm part of the Paralyzed Veterans Association of San Antonio. That's where I live, and I'm happy to be here. All right. And last but not least, I present to you Mark Raymond, Jr., founder and CEO of the Split Second Foundation, a nonprofit focused on advocacy and awareness for those living with disability, and he's also the New Orleans Regional Transit Authority board chair, so someone with a disability and a position of authority. Welcome. Hi. Good morning, everyone. As Maurice mentioned, I'm Mark. I run an organization called Split Second Foundation that we started to really build health infrastructure in New Orleans after my accident. It kind of stemmed from a true lack of resources, so getting to collaborate with folks like Maurice and Allison consistently to create a more robust health infrastructure has been amazing, but also doing all the policy work and ensuring that everyone is being advocated for the right way. Very good. So one of the things that was very important to me is that we have a whole meeting full of physiatrists and people that take care of those with disabilities, but I think we need to be intentional at sending the voices of the people that actually need things moved forward rather than speaking for them, giving voice to speak for themselves, and we have some great advocates here to sort of bring a different perspective to things. I want to kick things off with Allison. This is a 300-year-old city, and we are very, very proud of our 300-year-old city and what it means and what it looks like, but that's about 250 years before the American with Disabilities Act, so my question to you is that as a policymaker, how do we preserve the character of a city like New Orleans while making access for all of its citizens a priority? Yeah, I think that's the key question we struggle with every day as staff, as policymakers. Believe me, it's on our minds because we want to make sure that the city is one that represents what we used to be and the things we treasure about the old New Orleans and the things that bring in conventions and tourism and things that fund our state, frankly, and the things we love as residents, but also the things we need as current residents here. This comes to the forefront most, I would say, when we're dealing with land use, with buildings, with building code, with transit and infrastructure. It is at the forefront of our minds through all of these processes when it comes to the Historic District Landmarks Commission, and so what policymakers have been intentional about doing is building in, as we're attempting to update policies in general to be more friendly to accessibility needs, we are also building in mechanisms for exemptions and for special accommodations so that those are always a part of the process. Marcus, when was your accident? Tell me what was the biggest surprise as you pivoted from an able-bodied person to a person with a disability in this 300-year-old city. My accident was July 4th, 2016. One of the immediate things I noticed was how important curb cuts were. Infrastructure isn't just buses, but sidewalks and streets. A lot of times we won't... You see people riding in wheelchairs in the street, and being able-bodied, you're like, why is this guy in a wheelchair riding in the street? Then you see all these beautiful oak trees, but if you're walking down the sidewalk, the sidewalk is all busted up. I can't roll over it. Naturally, my next easiest path is to just ride in the street. I was using the bike lanes a ton. When Bike Easy launched that campaign, I was like, yes, bike lanes. Can we put my wheelchair guy on it, too? Really, you're in San Antonio, so not quite the same in terms of historic character, but the same in terms of just making sure accessibility... When you went from being able-bodied to living with a disability, how did you find navigating your hometown of San Antonio different? I've been in the chair for about 23 years. When I first got in the chair, San Antonio wasn't really an accessible city. Just like Mark said about curb cutouts, sidewalks. We're a sister city to New Orleans in reference to the 300 years. But I was fortunate to meet someone on the city who was also in a chair, and she made it her mission until she passed to work with making San Antonio a very accessible city. I'm very fortunate now, 20 years later, to be in a city that's extremely accessible. It comes down, we have a historic river walk and all of that. I myself can work out from where I live, and it's paved on both sides of the river for several sides of town. There's a whole infrastructure there that has been built up. Now, there were growing pains, because I ride the bus, the city bus in San Antonio, because it's extremely accessible. But it went from having accessible buses on the weekends only to now they have them every day. It's a no-brainer now. But I was with those growing pains of a bus driver saying, oh, you have to go up backwards. And I was like, why do I have to go up backwards? I mean, have you ever been in the chair? I'm not strong enough to go backwards. I'm strong enough to go forward. I'm strong enough to go backwards. Oh, well, that's, you know, so I was in city council meetings saying, that's not right. Like, have you ever been in a chair to do something like that? So I had to actually demonstrate how to do things like that. So it's better now. So we're in the middle of that right now. How long did it take for you, for San Antonio to get there? And then, you know, another thing is that I'm very visible. I'm very out in the city. I go to dinner. I hang out, all of these things. And it took a while for the bus service to realize, hey, this dude's got a point. Because at first, but it took, oh, my gosh, like at least 10 years of me talking to the city. It's me, only me. Because when you see disabled people, now you see a little more because you see a lot more veterans. I live in a heavily veteran city. But you see a lot of people like me in chairs now. But when I was first in the chair, oh, there was like hardly anyone like me in a chair, you know. And you can see. Absolutely. Right. I think part of that is that there was nowhere to go. You know, if they didn't exist, they would just stay at home. And I guess to stay on this point, you talked about how you went to city council meetings and you testified. And Allison, as a staffer on the other side of that, what was persuasive? Like what did people say to sort of make the light come on for you the first time? I can say I can recall early days of you getting really involved, Mark, and coming before the council and sitting at the presenter's table and being really upfront and sincere and vulnerable about your story and your struggles. And I think that you persuaded everyone on that council that this was important enough to take on and that you were willing to be the voice of other people who were living in wheelchairs and dealing with other sort of disabilities to help translate the needs to the council. So I think having a person who's living it come and speak to us, to staff, to elected officials, is invaluable. So that's a good dovetail to the next question. So we have a room full of physicians here that provide care for people with spinal cord injuries and other disabilities. What did you want your doctor to know or help you understand when you were first injured, not just from a medical standpoint, but as an advocate and as a person? Oh, golly. This is a whole new life, right? Like when you're introducing this to families, and I say families specifically because when I had my accident, I couldn't comprehend much of anything. Like I'm still grappling with the grief and the guilt and thinking about yesterday and kind of going through the spiral of depression. So it was a lot of stuff that my mother was handling for me and my family and my sister, but educating them. And then that transition home was like phase one, right? So what do I need for phase one to be successful? I need the right equipment at the home. I need the bed, the shower chair. I need a mental health professional. Even if I say I don't need one, like I need somebody that I can talk to that isn't in my family that I'm lashing out at, even though they're doing everything for me, right, to just also connect with and help me process. I think phase two, like once you get into the acceptance space of it and you really do start to venture out and you're trying to navigate society. And to give you a timeframe perspective, phase one for me was probably a year. Like the first year you're going through your new routine, you know, your first birthday, your first Thanksgiving and holidays, your first Mardi Gras, all of the seasonal stuff, and you're still thinking about, well, damn, if I wasn't injured, I would be doing X or Y, right? But I am, and here I am, and give me a drink because I'm here, right? Opposed to like really looking forward to and planning for those moments like we do now. Well, from a physician's perspective. I'm going to cut in for a second. So Billy and I were actually friends before he was injured because I did my residency in San Antonio. And when his accident happened, I was out with him that night, but I went home. And I got a call from our common friend that said, Do you know anything about Reeves Rehab? And I was like, yeah, I kind of work there. Well, Billy's coming. I said, coming to do what? So he went from being my friend to my patient. And it was a very interesting sort of thing to sort of say, how do I change my role in some ways? And so I heard some of the complaints about my colleagues in real time. So I just wanted to make sure that that background came out. So go ahead, Billy. So even with Maurice, there's sometimes I have to tell him, no, that's not – I mean, you have a medical perspective of it, but that's not what's going on. Even when you in and out calf, you have to explain things. But I think from a physician's perspective, I think it just – I think what Maurice did is different from other docs that I dealt with in spinal cord and I still deal with, is that they made themselves out in the community, the disabled community. Like Maurice was a ref, and he worked in wheelchair games and things like that. So he saw how people interacted in this new body outside of the hospital. And so he saw them from a different perspective. Some of these people – like I have to work. I work. When I had my car accident, I was 32. So I already had a master's degree. I was already in the community. I was already working. I have traveled, all this other kind of things. But when you meet from doctors, they have this sort of way that they treat you, and then they really don't know you outside of that. And I think you need to wrap your head around that perspective. And same thing when Mark was saying going from rehab – I mean, going from the hospital to home. I always say that you need an advocate for your medical well-being as well. Like he had his mom and his sister. I had my father and my aunt who was a nurse. But still, those conversations you have with those adults, you still need to have with the patient. A full-on, full adult conversation about, all right, so at this point, you don't have Christopher Reeve's money, so therefore you are leaving this hospital without being able to walk. We need a plan to have this happen. And you not only need to have that with the people who care for them, but you need to have that with your patient, a real talk. Okay. So I think this is really, really invaluable in terms of centering whose voices we're talking about. So we talked a little bit about local transit, and we're going to come back to that. But it's been all over the news now about sort of flying in a wheelchair. So people's chairs get lost. So, like, can you get out of that and walk down the aisle and get in your seat? So take us through from arriving at the airport, clearing TSA, to getting on the flight. What does that process look like, and how can we be advocates to make that process make sense? I'm going to go first because your perspective is different from mine, I think. For me, it's a lot of phone calls, calling the airlines, and then getting there, and they still don't remember what you told them, right? Is it on the app? Can you put it on the app? It is not on the app. I think some of them do have website infrastructure, but I haven't seen it on apps. I think, too, but it's best practice. And even when you do, you get to the front desk and they're like, so what's the battery in this chair? How heavy is the chair? You fill out this whole paperwork and they ask you all the same questions. Yeah, absolutely. Then you get to the front desk or the front gate, and you're the first person to board. You get down to the end of the jetway. For me, they pick me up underneath my arms and knees to put us on this little tight aisle chair to roll us to our seat. I always travel with my mother because she knows how to take care of the chair, right? They store the chair underneath the plane. Depending on the size of the plane, they might have to put it on its side. I have a power wheelchair. This is 450 pounds in comparison to the Ty-Lite, you know. Yeah, mine's 23 pounds. So a lot of times I'll get to my destination and my chair will, the back will be laid back kind of crazy or the arms will be bent because they had to lay it on its side. And to go back to the policy issue though, when the ADA was written, it never considered airlines, right, it never considered rental car companies. It never considered transportation network companies like Uber and ride shares, right? So a lot of the policy thought wasn't baked into that legislation. Billy. So from my perspective, when I got in the wheelchair, I immediately got into wheelchair sports. So I started to play quad rugby and we were traveling. So I knew then, I was like, so how do you navigate as a single man in a chair, right? So I got into wheelchair sports so that I could, you know, have this some sort of camaraderie so I could ask people. So with me, I realized, okay, so the chair that I need needs to, like I'm only 23, 28 inches from here to here, right? Because I need to get into hotel rooms, I need to get, and so I normally fly Southwest because I travel alone a lot and I'm able to get onto the plane and hop in the first aisle, but so I don't understand why the first aisle, it can never, the first row of seats, and I've asked this all the time, why do you insist on having, and I know it's there for the tray, but some planes, you can't lift that up, so you can't transfer it or have to be picked up to transfer and Billy loves being picked up. I hate being picked up. I don't see why now, you know, this day and age, you need to have that, you know, I mean, that needs, I accept it when I have to have it done, but I make sure that when I get to the airport, I have to get there two hours early because TSA, when you run up to TSA, it's like, what is this? And I'm like, oh my God, like I've traveled, and these are people who know me at TSA, like, hey, how you doing, Ms. Lewis? Where you going again? I'm sorry, I said, fool, gotta get a full pat down. Can your shoes come off? No, sometimes I do, and now I'm just like, no, I'm gonna take them off. You just check me, you know, hire me, you can check me, you know, or then I have to get a full pat down, like here in New Orleans, New Orleans and Orlando, they're the only places, oh, Puerto Rico as well, where I get a full pat down, everything, I'm like, I'm a sign up in line. Now, I understand that you have to do that for TSA, but come on, like, really? Like, because you're not checking everyone else like that, you know, and then when you get to TSA, it's always a male assist because they have to get someone to escort you because you can't go through the machine, which I understand, but here I'm putting my laptop, my bags, and everything in the, to get checked, and they always make the assumption that I'm traveling with someone else. I'd wish they would, and I always say, I'm traveling by myself just to let them know, hey, my bag is going down, but I'm waiting 10 minutes for someone to come get me, to check me, but everyone else who's in wheelchairs who gets pushed up there, they get to go, and I'm like, I don't understand, why can't you just put me on, I've asked TSA, I've also asked for the clear check, it doesn't matter, I've asked for TSA clearance, it still doesn't matter, shoes have to come off, belt has to come off, all of these things, and I'm like, so the only luxury I get is I get to go before everyone else to stand and wait, so, and then I always make sure when I get to, I have to go to the gate check because they have to inspect my chair and put my chair, so it'll come up at the gate, so I always have to be friendly and say who I am and all of these things so they'll know, and then they're like, so is this your chair? Like, I don't, like, oh, okay, so I understand that, or if I'm with someone, and I'm sure Marcus had this, they'll always go, so is he able to move? Like, is he, and I'm like, I speak, like. No, but I think this is, there's two things that I don't wanna gloss over that both of y'all said, number one is community. You started with sports, you started with your family and our New Orleans tradition, sort of build a community on how does this work, and I think that's really a key question or a key thing you can talk to your patients about, like, who's your community, and how are you gonna source that community to do the things that we haven't thought of or talked about, and the second thing is the sort of infantilization part where no one's talking to you, they're talking around you, and when you say things, they're not even registering that you said, like, oh, is that your chair? It's like, that's what I just said, it's my chair. So, Allison, from a policy standpoint, especially you all work with the airport committee, how can we sort of embed human dignity in the process? Like, safety is important, but dignity is important, too. Yeah, I know that a lot of our, a lot of things that we've worked to do are having someone speak for themself as a voice on the committee. Like, we established a ferry committee under a different council member who made sure that a person with lived experience was going to be on that committee and speak for herself. Same thing, I think, when we meet with these airport muckety-mucks or whatever, it's important for us to make sure, us as policy makers, to make sure that y'all know as physicians how to access that space, that other people with lived experience know how to access that space, to be a voice in the room. Because oftentimes, it's just out of ignorance. It's just out of, I'm used to doing things the standard way, and I don't have to live while thinking about what's gonna happen with my wheelchair at gate check, so I'm not, it's out of sight, out of mind. So, it's a matter of opening up the space, and I think we in City Hall try to be super deliberate about that, but there's even oversights that we make as well-intentioned as we may be. So, it's useful, that's where y'all's advocacy as physicians and as individuals comes in. I wanna add, too, so the TSA, TSA is a federal administration, right? And the inconsistency that we see state-to-state is the biggest cause of anxiety, right? Like, it should be the same every airport I go through that is controlled by TSA. When I brought this up to Congressman Carter, who's on the Transportation Committee in Congress, he didn't understand why that, why this functions the way it functions, and TSA reports to that committee. So now, as he drafts legislation, what you all can come in and do is also be the voice from the physiatrist's side saying, yes, they need that level of access through TSA pre-check, so every time they go to the airport, they don't have to get the 20-minute, you know, strip search, basically. Mm-hmm, mm-hmm. So this is an interesting thing. So I talked about Split-Second Foundation, and I wanna come to that in a second, but I wanna talk a little bit about local transport now. So as the chair of our Regional Transit Authority, you have a voice now and also a position of leadership. How have you used your voice and sort of helped people understand how to make our buses and trains and ferries work for the entire community rather than just people that are able-bodied? Talk a little bit about that. So I was appointed to the RTA board by Mayor Cantrell her first month in office. After I sent her, I didn't even send her, I saw her at a festival. It was like, Mayor, this is crazy. Like, this whole system is crazy. It's a guerrilla advocacy. It really was. Me and her husband are really good friends. God rest Jason's. Um, um, paratransit is the service that is specific to elderly and disabled people, right? For us, we would have to call to schedule that ride 24 hours in advance, and then they would give you a window of which they will pick you up. I think it operates the same in most cities. Some days I would literally be on the phone on hold for 25 minutes to schedule this trip that would come an hour late the next day. I mean, the most frustrating thing ever, right? So if I'm an hour late, if that ride is an hour late, I'm an hour late to my doctor's appointment, might not make it, might get there, and they say, we might be able to see you, but I'm in limbo when it comes to picking me back up. There's no wheelchair accessible ride shares, wheelchair accessible cabs. That is my only transportation option, especially in the beginning of this for me. So that, it was miserable. And that misery, I think, stemmed and started this whole thing for me. When the mayor put me on the board, I literally went there to fix that. And then, you know, you start asking other questions, and Lord, I started to learn not to ask questions. But like, okay, where are the other failures of accessibility in our transit system? So we operate four modes, paratransit, the fixed route buses, the streetcars, and the ferries. All of the buses are now accessible, but is the infrastructure around the bus accessible, right? Or am I letting you off in the middle of the street or in a patch of grass? You know, and you can't maneuver. The ferries was a big one, and I know you, we battled about the ferries. Just the boats, we had brand new boats that did not work for two years. And it was a lot of posturing and legal back and forth, and the nuts and bolts were corroding on brand new boats. If you bought a brand new car, and it didn't work when you got home. Like, didn't work, period. Forget the other features that we're talking about did not work. So then you have to get past that to have the discussion about accessibility. So we finally got the boats working. Then to face the accessibility challenge of going down that old ferry terminal, which now we have a new one, it's brand new. It's right over here by the Four Seasons Hotel. Go see it. Right by the aquarium. It's beautiful, and the ferry system is really mostly accessible, and I love riding the ferries. The streetcar, however, our beautiful St. Charles historic streetcar, out of 54 total cars, only three of them are ADA accessible. And that is a nuance from a lawsuit that took 11 years to settle. Now they have a CEA in place in which RTA is supposed to deliver more accessible streetcars every year and constantly assess the situation. However, there's 62 total stops. Out of those 62 stops, only six of them are accessible. And mostly because of the width of the neutral ground that the streetcar rides out on doesn't permit enough space. Wait, we have to translate neutral ground for our non-New Orleanians. That's the part in the middle of the street. The median. The median. The median in the middle. There's not enough width on the median for a lift to come out, a ramp to come down, and for someone to ride off safely. At most intersections, they will ride off right into the street. The solution that we found is modern streetcars. So if you go to cities like Portland, even old cities like Bordeaux, France, and Seville, Spain, they have these beautiful level boarding modern streetcars that you just roll right on and off. Strollers and everything. Now, it's expensive, and we're gonna have to find the funding for it, but that is a viable solution for our transportation issue. So, Billy, what are some common sense things that people can do to make a city or a public transportation system work better for those living with a disability? I think something similar to what New Orleans is doing now, I mean, and what we're doing now, in reference to having advocates who are disabled and advocates who serve the disabled community. So that's your physicians, that's your occupational therapists, that's your physical therapists. And with a collective effort to be more aggressive and assertive in reference to what the needs are of the disability community. I think that's what needs to happen. That didn't happen, I mean, if Paralyzed Veterans Association in San Antonio didn't push the efforts to even the VA hospital and reference how they treat people with disabilities, along with the dogs, there would have not been comparable service at the VA hospital. And so from that, Paralyzed Veterans, they have been active in accessibility issues in San Antonio. It took, because I'm a product of it, it took 20 years for it to be different. Now I can say that I could welcome him to my community because we could be right along on the sidewalk and not have any problem from where I live and to where I go in San Antonio. Here, I say this because I travel a lot to New Orleans and I know certain streets, I know certain sidewalks, I'm not going down the sidewalk, I'm going this way, I'm going this way. Like even going to the mall is horrible because even though by that aquarium, they built a whole new aquarium, but they still haven't found a way for wheelchairs to go over the train tracks. So what you have to do is go through the Hilton and go up an elevator through another floor to another floor to get to the mall over there. You cannot do it. I've done it because I'm in a accessible, I mean, I've done it because I've been over tracks, but I told myself this weekend, I was like, Billy, you're not gonna do that this year because there's been many times I'm like, oh, and somebody's helped me over, but I'm like, you built this whole new aquarium and you still haven't found a way for people in chairs to get to the mall. So I think it needs to be an effort. And even though you may not feel like this is your job, but if you wanna, I get it, if you wanna just treat people with disabilities, you wanna be a doc and just treat people and that's it. And you don't feel that it's your duty to do anything other than that. I get it. That's fine. But if you are different from that, that's what it's gonna take, so that you can be an advocate for when you get someone who's new in a wheelchair, you'll be able to address some of the things that they may have questions to. I got good news for you. We built a pedestrian bridge that crosses over those train tracks with a ferry terminal. Oh, okay. So when you go up, the ferry terminal's to the left though. So if you're looking at the aquarium from Canal Street, ferry terminal's to the right, aquarium's to the left, you'll see the bridge that is attached to the ferry terminal. It was an extra $12 million and it slowed down the ferry terminal's construction process. Give me a round of applause. I'm gonna check that out. But check that out. Yeah, I'm gonna have to. It was very intentional for that very reason. And also because people coming off of the ferries would get blocked by the train at times and be late for work. Yeah, absolutely. It had double use. And you brought up something too that I wanna mention. A lot of this is tied to funding. A lot of this is tied to a lack of funding and governments having to be creative in finding the sources to pay for infrastructure, improvements, accessibility throughout cities. And that's where we struggle a lot because a lot of times too that funding might just be allocated for a year. So you have to layer multiple sources and it gets tricky. Didn't y'all just apply for funding and it wasn't approved for streetcar modernization for accessibility purposes? We did. So RTA's been sued several times for not being accessible. In our most recent suit, we're being sued right now, we submitted a appropriations request to Congressman Carter's office to address the accessibility challenges on St. Charles and see if we got an extra $10 million, could we make some of these stops, make the streets a little bit wider and get creative? But we didn't get the appropriations request. So now we gotta try again next year. So one of the things I'm hearing is that lived experience matters. And I was a resident, as Billy talked, but I went and played wheelchair rugby and basketball. I was not very good, but I was very enthusiastic. And that gave me a different perspective. Similarly, Mark has done a program here called Ride With Me, Roll With Me. It's a double entanglement because there's a second line song that kind of goes with here in New Orleans. But what that process has done is the governor, the mayor, our congressmen, several of our city council members literally got in a wheelchair and rolled around the city with Mark. Now, we can talk about a lot of things. But when people are, oh gosh, I think it just almost fell out, that really drives home the point. And I think that sort of bedroom advocacy really matters. And that's something that each of us can do and facilitate in our own clinics, in our own places and spaces. So talk a little bit about the strategy behind that process and that project. So I started the Roll With Me campaign in June of this year. And the thought was, how can I put somebody in my shoes to experience this, what I do daily, just to give you a taste? And the first person we did was the CEO of an organization called Greater New Orleans Incorporated, which is like one of the big economic development engines for the region. The money people. The money people, right? And immediately, his office is on the 23rd floor. We come down. It's a class A office building. And I said, Michael, you've got to figure out how to open the front door. They don't have an ADA door, right? And he's trying to figure out how to fight this heavy glass door just to get outside. And I was like, this is it. This is like baptism by fire. And I ended up taking him on probably about a seven block stretch around downtown by the Hyde Hotel. And all throughout, he was just like, man, this is such a visceral experience. I never would have thought that a crack in the side would have that much impact on me being able to ride down the sidewalk. I never would have thought that the slant of the sidewalk would play that much of a part. Because you've got to push so much harder on one side than the other. Opening doors, going to the bathroom, every little thing. And at the end, he was like, man, everybody in the city needs to do this. Everybody needs to experience this. Political leaders, business leaders, you name it, because it literally changes your perspective. And what I always tell everybody is, you're a split second away from this being a reality. Being able-bodied is a blessing, but it's not promised tomorrow. Anything can happen at any point. Since doing Michael, we've done a total of 35 from city council members to the governor, the mayor, other business leaders. And everybody's reaction has been the same. And to the point about the TSA stuff, I was having that conversation with Congressman Carter while he was pushing the chair about going through TSA and the challenges that that faced. Just the dignity, right? Like, dude, get your hand out of my groin. Absolutely. We're going to have to do this every time we come. But using that as an advocacy tool, I would encourage you all to maybe do a wheelchair to work day, right? And don't be afraid to be vulnerable and express how it makes you feel, because it is frustrating. It can be a very frustrating experience. And at that, I want to open up the mic for anybody in the audience that has had an experience with a wheelchair to work day or your personal advocacy to make your community more accessible. We're always here to share good ideas. So feel free to come to the mic. We'll recognize you. Have you done a roll with me, Allison? No, I haven't been invited. Leslie has, though. Sign me up. So when Councilmember Harris did it, what were some of the things she brought back to the office after she did that experience? The same exact things that Mark is saying. It's the little things that you don't realize, because you're not in the chair. You're not looking at it from that perspective. Turning around in order to get on an elevator, making tight spaces work in a historic city, the sidewalks with the bumpiness because of our old oak trees, pedestrian signals for crossing the street. Probably super basic things to y'all, but it's just hard to see if you're not living it. So Billy, you've seen this evolution in San Antonio over time. Yes, we've seen this evolution over time. I want to come to what that looks like, because we're at the beginning of that process. And you're like, let me tell you what it looks like in the middle. Microphone, please. Hi, my name is Mary Keene. I'm from Marionjoy in Wheaton, Illinois. I'm a Peds physiatrist. When I was in medical school, we at Northwestern at the time did have a wheelchair day opportunity. And it was life changing, but I'm wondering how many Pimanar residencies, excuse me, have a wheelchair day for their docs, for their doctors in training? Sure. I think that might be a really good thing to do. I'm going to suggest it at Marionjoy. So this is interesting. So in Peds, we have a day where we taste all the formulas, because we prescribe all these infant formulas, and most of us have never tasted, let alone seen them. So we don't realize Nutramigen smells absolutely awful. And so if you have someone that is actually swallowing it versus getting it in a G-tube, that's a problem. But you don't know that if you've never actually physically tried them. And I think similarly, it's very difficult to know these things if you haven't actually tried them. So I think that's a wonderful thing we can easily incorporate. Doctor? So I'm Dr. Yolinda Lizbosquez. I'm a Peds rehab physician. Go Peds rehabulous. So when I was in my previous job, I was the director of medical student experience with the department. And I changed the curriculum for the Pimanar rotation, especially when it was an introduction to rehab, and make it more as a disability experience. So in addition to shadowing clinical practices, the medical students had to do two reflections. One was to see a disability with a primary, sorry, to see a film with a character, with a primary character with a disability, and kind of like talk, and they would have to complete a reflection. And the other one was a wheelchair experience in which they would do a pre-wheelchair kind of like reflection or assessment of what do you think will be struggling, and then kind of like do a post-experience. I stopped doing the wheelchair experience reflection B because I got the feedback from some people in the disability community that the wheelchair experience could be almost like blackface or something like that, like emulating something that is really not your experience or something like that. So I'm happy to include it back again because I feel there was an important experience to have. The other thing that was provided to me as a feedback was that even if you don't use a chair, using kind of like a stroller or something that has wheels, because we will never, as non-disabled bodies, we will never experience it from your eyes and your perception, right? But even have like a stroller or something, every time that you need to think that you lift the stroller or something, well, that's a wheelchair that is unable to kind of like go through the air. So I'm very open to suggestions or feedback on how to provide these experiences to learners and to peers, not just in the medical community, but also out in the real community. Cool, thoughts? I think they had something like that at the VA. But the thing about that was that it was in the hospital and it wasn't like downtown or even like, I think that it needs to be incorporated and it needs to be incorporated in not an area, not just outside of the hospital setting. And I think if it's outside the hospital setting in a downtown setting or even around the hospital, but sometimes around the hospital, it's really accessible over there too. So, and I'm not saying you need to pick the worst accessible area because not necessarily, that's not ideal, but it does need to be in an area to where you will have to, able-bodied people will have to navigate. I did something similar to that, but I'm gonna take your idea. I need to pick your brain in reference to that because that's an idea for me in San Antonio to bring the disabled community together and the forces that be. But I had that similar situation to where I used to have a trainer and my trainer, he got in the chair with me and he started working on it. It's like, Billy, is it hard to have blisters on my, yeah, that's what it is, but just to navigate. So talk a little bit about the arc because I think that's really fascinating. So you were in a city that when you were first injured was like nowhere and now you all are in a place where you can literally go from work to home to recreation on public transportation, how did that, what were the big major steps or the moments? So you knew me when I lived downtown. Yes. And so now downtown, there were areas of downtown where I wasn't able to get to. You would have to know a certain elevator that worked at a hotel to get you down to the river and you wouldn't go on this side because that elevator's always broke. So now the city is very conscious in reference to accessibility. And I wouldn't say that if it wasn't, but I use transportation every day, you know? And so, and I use Paratrans and we have the same problems and I don't understand that. And I have fights with the, I'm very aggressive at those meetings. And- Billy's very aggressive, period. And I know they have enough of me, but I mean, I don't understand how you- Cold and assertive. I don't understand how Paratrans can't be as seamless as our transit system. Because I can say that, like I've never written the transit system here in New Orleans because I just don't trust it, you know? But I've written the transit system in New York. I'd rather ride the buses than the subways because an elevator may go down to ride the subway and then when you get to a stop, the elevator may not work. So that's what you have with- So you're stuck in the bottom? Yeah, you're stuck at the bottom. You have to get a policeman to carry you. Oh, and I know. Again, we talked about how Billy loves being carried. So just as a point of clarification, in order to become better advocates, if we're going to do a simulation experience, we should take into consideration the environment in which we're exposing our learners. Right. So I would give them a set of tasks to also do. So they had to go outside of the hospital. They had to at least go outside to like a community center where there was a food court. They had to order food. They had to go and get utensils and they also had to try to use a public restroom and get into a stall and try to transfer as well. So I'm hoping that, you know, like at least it's, yes, we're not emulating and we'd never be able to simulate your experiences. So thank you so much for sharing all this. But being very kind of like intentional on, you know, the challenges that we're trying to expose them so they have a better understanding of at least the tip of the iceberg. No, I think it's really fascinating. Well, come up with your next. What's really fascinating is how we can use technology. So, you know, we talked about rideshare and cabs. In New York, there's a thing on the app you can actually indicate if you need an accessible cab or a rideshare, but that's not everywhere. It's not. So like, how does that, so no, we're, this is 2023. People use rideshares and Ubers all the time. How do you Uber around the city? Uber is very anti-regulation, like extremely anti-regulation. New York is one of those unique cities that half the cabs in New York are accessible and that's controlled by the greater New York municipality. I don't think that's a New York statewide thing. No, it's not. And for the wave function of Uber, that has only been driven by large urban corridors. Houston, DC, California is always special and they lead the way typically in legislation and requirements, but we haven't gotten there yet. And as a matter of fact, our legislature took the municipality's ability to regulate TNCs to the point of requiring them to have wheelchair accessible vehicles away like three years ago. So we went backwards. So for those that don't speak fluent policy, the federal jurisdiction is the top, then there's state jurisdiction, then there's your local jurisdiction. The state jurisdiction has the ability to say what local jurisdictions can and cannot require. We used to be able to, three years ago in New Orleans, to have local jurisdiction require things within the city. The state has removed that regulation. And so we don't have the ability to do that at a local level anymore. So for us to say, if you wanna work rideshare in this city, not anywhere else in the state, it has to meet these metrics. We can't do that locally anymore. Anything to add to that, Billy? So New Orleans used to be okay with, they used to have a shuttle, airport shuttle, that would, that had, now, granted, the shuttle, the one they had, they had maybe one or two of their shuttles that were accessible. But every time I would come to New Orleans, I would always go to the airport and get the airport shuttle, and they would have an accessible one for me. Now, they don't even have that shuttle anymore. And so now, when I go to the cab stand, I ask for an accessible, well, maybe the, that cab's not here, it's 45 minutes before, or it's broke down. And I'm like, you only have one accessible cab in this city? What? For years? His name's Mr. Delaney. Okay. We know him. He's never available. Yeah, that's what I'm saying. I've had his number for seven years. I've never talked to him. Yeah, so then, they'll pull up, and it'll be a suburban. It doesn't matter how big it is. Right. I need to be, I can't walk, so I can't get up in there. But I've gotten it in cars, because if I'm with somebody, somebody's able to hoist me up, you know what I'm saying? So now, I just have to be, and I've ridden, since I've been here, I've ridden in four Ubers. And so, I just have to be Uber-friendly to the Uber drivers, so that they can take apart my chair and stuff like that. And most Uber drivers and Lyft drivers, I can say this, they are very friendly, and they are very helpful to me. I've only had one occasion, of all the cities I've driven in, and it was happened here, that I got a complaint. But I've never had a complaint, but, you know. Well, I appreciate that. They can't pick me up. Listen, that's the thing. I always think about people in power chairs. How do they get around? So, part of the Roll With Me campaign was also to educate folks on the lack of these types of resources, right? What I realized halfway through it, is I need to focus more on the economics, and the economic impact of the lack of, right? New Orleans is a tourism-driven city. That is our gross domestic product. That's what people come here to do. They come here to play. As a city dependent on tourism, from an economics perspective, we should be as accessible and inclusive as possible. And so, when I started to have these conversations about why doesn't Uber have blah, blah, blah, it quickly became, okay, why isn't the tourism industry pushing this? Because in order for them to sell the Super Bowl to come here every five years, you would think the NFL would want that box checked, as well as large events like AAPMNR and others. Hint, hint, hint. And so, now, having conversations with the Lieutenant Governor, with the Walt Legers of the world, the tourism people, and having them look at it from a purely economic perspective, they realize that the average disabled traveler not only spends more money, but travels more frequently. Therefore, we should absolutely be lobbying all of our legislatures and everyone to be as inclusive and accessible as possible. Excellent. Microphone, please. Sorry. This is great. I'm Carly Rothman. I'm from Hackensack, New Jersey. So, I'm very close to Manhattan and a lot of urban and suburban areas. I'm a pediatric physiatrist, so it's obviously not my lived experience, but I've had families who the main way that they get around, especially, New York City has a lot of transit, but when you're in places like Newark, the transit system is not as robust. And so, for them to come to an appointment with me, they're gonna take a taxi. And now we're talking about kids, and you're talking about they have a sibling, and then you have a stroller, and then you have a kid who needs a wheelchair, and then they need a booster seat and a car seat and like all of these ends like the one mom and like how Is she gonna? Get all this stuff in the car and like take it out and deal with all of it. And so it's Can really be a challenge that we're all like the whole team is trying to you know Put our heads together of how this is gonna work For the mom because it you know and that I think sometimes as physicians. We're like Oh, well, you need X Y & Z and then and then when you really look at their situation, you're like, oh, no, that's not gonna work so Yeah, I just really appreciate you guys giving these lived experiences It really is very helpful. And the other thing I will say is I talking about like Education for physicians and how to get us more aware of these things. I got to participate in a really great program at Hofstra University during my residency where The they do a day every year at the medical school where our chair is an SEI doc And so he brings a big panel of his patients and they do small focus groups with the students where they talk about like What history to ask to somebody who has a disability or how to do the examination and like talking about how you know To ask somebody to get on to the exam table. What help do they need? Can they do it themselves? Are they gonna you know, because so many times you know, I'm sure you guys can attest to also like if if a Physician has just not examined you, you know, because they're not sure what to do with the chair and things like that. So Yeah for any of you guys who are like in Residencies or medical students. I really enjoyed participating in that program and and the students really loved it, too Thank you. Thank you. So a question for the panel How can organizations like the AAPMNR talk to and empower patient advocates rather than speak for them? So and I think this is this is about allyship and about how we can leverage as an organization that comes to this city and other cities I'll start I guess Mark you want to start and I'll go to Bill and Allison a lot of times when I'm looking at organizations like AAPMNR I'm looking specifically to the advocacy initiatives that the staff are already Undertaking and figuring out like where this fits in that because a lot of times it's about like staffing capacity as much as Like they want to support everything, right? So where's the capacity and how can we build this into the future capacity? and then being really intentional about like the battles that we're picking to You know, there's like long-term battles stuff. That's gonna take us five years to get past and then there's low-hanging fruit, right? So I'm constantly like challenging Organizations to think strategically like that, especially in terms of where we want to be it as society Yes, it's just really strategic for me I Think it does need to be a A Co-existing advocacy similar to what might go back to the PDA in San Antonio You know, so if it wasn't for the paralyzed Veterans Association dealing with the the rehab docs that were there at SCI Things would have it was a collective effort that things needed to be changed because we as patients Wanted certain things to happen and even though we have docs were dealing with us They weren't really listening to us So it's going back on, you know having you know Even like even when you deal with rehab docs on At the VA it's on, you know the bottom level But then when you deal with docs and you're a patient upstairs It seems like this doc doesn't even know like how to deal with you like so you in and out cath You're a doctor like you don't know that I'm a quadriplegic like, you know, so but it took the advocacy of those docs Training those docs in the hospital how to deal with SCI patients and I think that's this organization Would be very important and when you're out in your communities to Look and seek the other community To have that concerted effort, you know I guess my thought goes back to sort of what Mark said. I know in the council members office. We're a staff of maybe five Not a lot of capacity. So for us The easiest thing the easiest sell is if you bring us a package. Here's the problem Here's why here's the solution. It's worked in other places. I will do the advocacy for you I can only assume that outreach to a big organization would be the same I want to add going to your point to about coalition, right? So right now Senator Bill Cassidy from Louisiana is pushing an amendment to Social Security disability because for so long people with disabilities were only were asset You couldn't have more than $2,000 Yep, they didn't they weren't increasing the money for organizations like a PM&R that might have an advocacy arm It should also be baked into their communications team that hey this legislation that's affecting the population groups that you serve is Potentially in the works we should support it and then from there the organizing, you know Maybe a day on Capitol Hill next year that they can all go invite the the members of a PM&R to go see Bill Cassidy in support of this legislation and make the rounds in Capitol Hill Right like that is where I think about Capacity coalition building and then inviting other partner organizations that they you know, I'm sure American Cancer Society For stuff like that it needs to be a collective effort because that's what Yeah, we have a unique perspective in New Orleans is that lots of groups like to come here for their convention Mm-hmm. So we have American Academy of Physical Medicine Rehab the American Academy of Orthopedic Surgeons American Neurological Society so like the neurologists were just here So I think part of this Thinking and branding for advocates in all the cities to say who's coming, you know And if they're coming like I was I wanted to be intentional about us being here with you all on a panel Like that was important to me as a member of a PM&R to make sure we feature Advocate and patient voices at our convention if we are the physicians of function like that should be part of what we do I think similarly as other groups come you want the peak surgeons and the neurosurgeons are gonna be the ones that actually do the initial stabilizations of patients and so What is the purpose of quote-unquote fixing someone to leave them to a life to be fixed at home? And I think these are easy sells for us so as we go to different cities we can really think through that stuff The next question I really wanted to talk to talk to you guys about is How this change is happening And and I'd like for each of you all to think about something that you did or you focused on in Terms of making your cities and communities more accessible. That was a big win for you. It could be small It could be personal it could be bit like I got something passed at a federal level But I think it's always helpful for the audience to hear like a success story, and how you did it Because it just seems so massive and daunting to change anything sometimes Anybody can start I Think I just go back to the thing that I explained when I when I first started is that when I first got into the chair and You know the bus drivers asked me to go backwards, and I was like you know what is that and so then I figured out where these meetings were for paratrans, and I and Even though it was kind of crazy that I had to explain it and show them You know how to do that you know, but I think that that changed and they stopped Asking People in chairs to go up the ramp backwards to just get on the bus You know you there's no way you could see you know you how are you able to you know your back and your triceps are Moving your 200 pounds where you can use your chest your triceps and your arms, and you know to go forward You know so I think that's kind of like the biggest accomplishment that I could say that I did in my community for for people in chairs That's that's retail advocacy And I don't want to discount that Because that really was a seed change in just how people even access the system And I remind our audience to say that Everything massive doesn't necessarily seem massive when you start but the fact that we had a whole reorientation of how Drivers interacted with patients living with a disability and how they even boarded and participated in access to service That's the big deal And so one person can make a difference, and I really enjoy that For me it would probably be starting split-second foundation Which has been specifically focused on breaking like all of these barriers right for me To looking at it from a global perspective where I guess 30,000 square feet looking down is so minty so many many Issues the first one was like being discharged from outpatient therapy and not having any place to go Right no place to continue working out to continue my recovery journey when insurance dictates that okay? You've been coming here for 11 months. You're not making any more gains So it's time for you to go home, and you know your caregivers can can exercise you right? So that was the first thing that we wanted to start with the organization was a fitness program that fitness program catalyzed into a Community coming together with the rest of their challenges whether that was caregiver support transportation lack of supplies lack of understanding lack of education and with each of those new issues we created new programs to address them and now operating the only holistic wellness center in the Gulf South With with access to all of those resources for people with a host of different abilities Has definitely been the best work. I've done Yes, and me and Allison renamed helped rename a whole bunch of streets, too Yes, yes, so so what he's talking about is he put together a fully accessible gym Which y'all might have in fancy cities other places, but that's the first one we have down here I'm on the Gulf Coast South and I think that's transformative For our community and a model for other communities all over the place so again These things sound small, but they all started with one person, and I hope that's inspirational Allison I can tell y'all too I'm sure most of y'all being in from other places you've seen those dockless scooters like lime and bird and they go all over the place and when Mayor Cantrell began her Her office as mayor one of one of her sayings was city of yes and so these companies came in and pitched a pilot here and Her team was very inclined to say yes, but the director of the Office of Transportation Myself safety and permits and law sat together before we would allow such a thing and the reason they're not here today is Because of very long and extensive conversations that mostly centered around these things would impede Accessibility they would block our sidewalks and the ability of people in a chair to move along not to mention People probably drunk riding around on the scooters everywhere that would impede any sort of walkway for anyone So I think that's that's one example Excellent so again at all levels So we're getting close to the end of our time and so I want to give each of y'all some closing thoughts And what I want you to keep top of mind is that we have a group of physician and physician advocates here That really want to be different and make an impact in their community. They made time to come and be with us So, uh, what do you want to leave them with? I'm as they go out and make the world a better place. I Will start I'll say that whatever community you're in I guarantee that there's a public body That's looking into issues that you can speak and be an expert to you on behalf of and with your patients that whether it's a designated seat on a ferry committee or Showing up as a member of the public to your city planning commission and making sure they don't waive The ability or the requirement to have curb cuts you can have a voice With and on behalf of your patients then you can take that back to the people that you work with and share that more broadly I Want to piggyback on what Allison said that's that's very true that Be active, you know outside of the hospital Or the rehab facility you work, you know be intentional about serving Your your That your community yep, I Want to echo the same thing I think You know a lot of times it's like knowing where we fit and then using Once we get rooted Using that spot to grow and to branch For me it started like with just small things. How could I fix? not having a fitness center or Not having reliable transportation services Then understanding, you know who controls what and who do I need to go talk to to lobby? To persuade and use your powers of persuasion To get people to see the point to move the needle to move everything forward because I think we all want to see all of our Cities in our country be better right? We want to we want to know that we're doing this To have a better tomorrow and not the same To be addressing the same challenges over and over and over again and bringing solutions to the table Like we need people who really? Like aren't just going to come and complain about the problem, but be proactive about solutions You know and really pushing the needle on solutions Well, what I want to do is a charge to everyone here is to be intentional about who? You're you're speaking for and who you're elevating to speak for themselves I think it's very important as you all think about courses for future meetings in future cities That we be intentional at partnering with community and patient advocates We would be remiss if we talked about things affecting Mark and Billy without Mark and Billy in the conversation We would be remiss if we were talking about making policy changes with no Policymakers in the decision. So so as doctors we are supermen and superwomen sometimes But sometimes we need to be super connectors But sometimes we need to be super connectors And I encourage each and every one you think about courses you can do in ways you could elevate and include Folks and faith and faces and perspectives and dialogues that need to be in the room You all needed to be in the room today. I'm honored you responded and answered my request that you join me with a yes I use personal leverage to do this in that all three of these panel members Leslie the council member is a dear friend of mine for a long time. So she kind of owed me a little bit Billy, like I said, I've known for the entire length of his disability and we've been friends for gosh 25 years now And Mark is a newer friend, but he drug me in to chair his gala Earlier this year, so he's worked me And and I just am amazed At the work that each of you are doing to make your communities better and that good news needs to be shared with the world So, please give me a round of applause A round of applause for yourself for coming and again, please Fill out the evaluation forms and thank you for your time and attention Allison port chief of staff the council member Leslie Harris Mark Raymond jr Split second foundation and RTA board chair William Newell's all-around badass and traveler adventure and sportsman All the things and and and just the last piece is that these guys have both lived through catastrophic injury, but they both live like they date they Hang out they go places. I'm like god that looks fun. I wish I could have gone to that but I just am so Inspired by the fact that you all are living through all these headwinds. We've been talking about but you're still living And that's amazing. Keep living guys and keep doing what you do Allison I'm proud of the work and the job that you and the council member do thank you all for coming. Thank you

accessibility in cities

public transportation

individuals with disabilities

wheelchair users

physicians

advocating for patients' needs

airports

TSA screening

improved communication

policymakers

medical professionals