Transcription:

Melanie Cole (Host):  Welcome. Today we’re discussing wheelchair accessibility in the public spaces and proper etiquette around wheelchair users. Such a great topic. And my guest is Pete Anziano. He’s the Shepherd Center Peer Support Manager. Pete, I’m so glad to have you with us. What a great topic. So, first, tell us what are peer mentors and how do they make a real difference? What does the research show about patients who receive intensive peer mentorship if they are someone in a wheelchair?

Pete Anziano (Guest):  Okay so a peer mentor is somebody at Shepherd Center, I should say. A peer mentor is someone who represents success in the Shepherd Mission statement to have people rejoin their lives with maximum independence. And I like to add with personal style. Right? Because as we grow up and we develop ourselves into the individual we want to become, we want it to be custom. We want to be a little bit different than everybody else around us so that we can feel like ourselves. Because the pursuit of happiness in a lot of way is the pursuit of a sense of self.

And so, these mentors who represent that success in maximizing their independence and with personal style; have to go through our training and our volunteer services orientation so, that they can come in and visit patients who have just found themselves in a new set of circumstances that in a lot of ways flips your world upside down. That vision of the future that we create for ourselves can become unforeseeable when you’ve had a terrible accident that changes the way your body works or an accident, an injury or disease or something that is slowly degenerating in your body that’s left you with an outcome to be a patient here.

So, by representing the success; they come in and meet with the patients and their family members and give them an opportunity to see what their future might be like so they can start again to build a picture of their future. And out hope is that this picture, this new picture, this revised picture of their future was one that doesn’t have to take a whole bunch of reworking. We don’t want to have to rejazzo their entire canvas but maybe just break out from small brushes and make a few additions.

And what we found in the research to get to the answer to your question there is that when people do have meaningful interaction with peer mentors through our peer support program here; they are less likely to be rehospitalized after discharge. And that means a lot of course to somebody when they are going home with a new set of circumstances to feel confident that they can take good care of themselves and avoid readmissions. And it’s also valuable to the hospital as well. It helps us look and feel good about the job that we’ve performed for the patients and families while they were here as patients.

Host:  We all want to help someone when we see someone with a disability. Should we be offering? Because now I want to get into some tips about wheelchair access and about etiquette specifically right now because it’s so difficult for some people to interact when someone’s in a wheelchair. Do we offer help? Should we ask before we offer help? Or wait to be asked? Tell us a little bit about some of the etiquette things that you find most important including terminology. Do we call them someone with a disability? Do we call them disabled? Speak about some of this etiquette because it can be quite confusing.

Pete:  Sure, I think that the best policy is to just to ask. Some people have a big kind spot in their heart and they are looking to do something kind and generous to fulfill that spot in their heart really and to feel like they are contributing to society. But if you don’t know how to ask somebody or if you don’t know how to help somebody; you really should just ask and to be presumptuous sometimes can be irritating, frankly. When somebody is newly injured and they are going out into the community and let’s say they are venturing to the grocery store and somebody just runs up and grabs the door from them or just grabs a bag of groceries from them in an effort to help with all the right intentions; it can be irritating, frankly.

And so, if you want to help somebody, the right thing to do is to ask. And they might say, no thank you. And then you just smile and be on your way. Because like I said, people are looking for a sense of confidence, looking for a sense of accomplishment often and I don’t want to accidentally step on their toes with that. But at the same time, some people might need a hand. So, it would be nice if they were asked if they needed a hand.

Host:  That was great. Now what about things like when you are speaking to somebody and there’s common expressions that say I’ve got to run along now or got to run; is that embarrassing? I mean do we have to really think that hard about everything that we are saying?

Pete:  Well when you’re talking to somebody who has a disability and you fumble over those statements; when you fumble over common figures of speech like you’re speaking to somebody who is visually impaired, and you say do you see where I’m coming from. Or you are talking to me, using a wheelchair and say heh do mind running up to the store real quick for me. When you get into those common figures of speech and you back out of them clumsily, that’s what creates an awkward moment. I think that just like offering your right hand to a person who has a prosthetic right hand; it’s a normal thing in our culture to do. If the person with the prosthetic right hand doesn’t feel comfortable offering their prosthesis; then they will offer their left hand and we should follow suit.

And so, to say to me do you mind running up to the store; I feel like that’s completely appropriate and completely fine. Also on terminology, I’m not a disabled person but I am a person with a disability. And that’s a valuable way to word things especially when you consider that I’m an entire person and I’m not just this one aspect of myself. If a purple person were to walk in the room; I don’t think that they would want to be referred to as purple guy. They would want to be referred as something more complete and representation of who they are. Because like I said, when we’re young and we’re growing up and we’re developing this vision of our future and in that a sense of self.

And then, in my case, at 33; I had a motorcycle accident that changed some of that but that didn’t in that moment make me a disabled person. It made me a person with a disability. Because I’m still the character, I’m still the personality. I’m still passionate about the same things. I still love people and the same things. And so I feel like to say I’m a disabled person is kind of limiting in the way that I’m being presented in that phrase.

Host:  Well I can certainly tell. You are a great peer mentor and definitely a character. So, tell us Pete, do you think as a country, that I know at Shepherd Center obviously, all of this is to perfection, but as far as the surrounding areas, our communities; are they in your opinion, accessible enough? Do they provide adequate services and a welcoming environment? What do you see are some of the challenges that you personally still have to go through?

Pete:  Well I think that you’re right. Here at Shepherd Center of course we do our best to lead and providing an environment of accessibility, an environment where people can get done what they need to get done regardless of their ability level. When you get out into the community; it’s not perfect. And I’m not mad at anybody for that. But as we know, from other cultural shifts that we’ve tried to execute in our country; it takes a long time. It takes multiple generations for people to change the way they feel and think and even the way that they kind of pre-cognate about things. People have preconceived notions about what it means to be me despite not having any experience in it.

And as an example, my father was born in a time in this country where people with disabilities like his own son now, were thought to be lesser, were thought to be in some opinions, a blight on society that drew the rest of our culture down. Now of course, things have changed with the Rehab Act in 1971 I believe it was and of course the signing of the Americans With Disabilities Act; the laws have changed but people’s experiences are slowly changing as people like myself get more and more involved in the community and get more and more visible to our culture at large. But it will take time for that to be normal and for it to infiltrate not just the spirit of individuals but of course, the buildings, the parks, the community access points.

It's not perfect. There’s a lot of growing to do in our culture and community but I’m excited about the changes and I hope that if people find themselves disabled and going out into the community and finding these hurdles; I hope that they find a good way to communicate the value of the necessary changes. Because it’s easy to get irritated and aggravated but it’s difficult to hear somebody who is aggravated and irritated. So, there’s more changes to be made but we just need to be diligent, consistent and gracious.

Host:  Before we wrap up, for family members, who love someone with a disability; how can they make sure when they are going some place that wherever they are going is accessible? Does this involve phone calls and website searches? Wheat do you want the family members to do to make sure that the place is welcoming and that it won’t be that difficult or insulting or embarrassing for the person that they are going with?

Pete:  I think that if it’s a restaurant or a cruise line or a cabin, at the beach, or in the mountains or something like that; a phone call is something that’s easy to make to say is your environment accessible. Now the person you get on the phone may feel like it is because they have an ADA grab rail in the bathroom, but they might also not think that it’s a problem that there’s two steps up into the bathroom. So, the person you speak to on the phone may not know exactly what you need and what you’re asking for, or what you require. At the same time, they might feel like it’s an accessible home or an accessible environment for one reason or another.

So, it’s handy to do those preliminary measures of outreach to gain a better understanding. But it’s likely that the people don’t know exactly what you are looking for. And that’s because ADA is so broad sweeping. Somebody who is visually impaired is going to have different requirements and somebody who is hearing impaired is different than somebody who is mobility impaired. And even among the ability impairments; there’s low level impairments and high level impairments. So, I get the question all the time is that environment ADA accessible. And the answer can only be well it sort of depends. What’s the disability?

And so, I think that rather than calling ahead is to keep a good open mind, to be ready to problem solve, to be ready to enjoy yourself even if you have to problem solve a little bit. Because after all, if we are all going together somewhere as a family; the goal is to come together, to commune, to share and to love one another.

Host:  Absolutely well put. As we wrap up now, tell us a little bit about peer mentoring. What are some things that you share insight with, with someone who is newly in a wheelchair or has new mobility issues and then give us your best advice for that etiquette that we’ve been discussing and what you want others to know about someone such as yourself.

Pete:  Sure, well I’m a full spectrum person. I am not just the wheelchair. My conversation with people who are inquiring only about the disability – that conversation is always really short. Get to know the person before you start asking them about the disability. If you run into somebody at a restaurant or a social gathering or a concert or something like that and you’re compelled to speak to them; maybe you ought to know a little bit about the person before you start leveraging in on what happened to you kinds of questions.

And in peer mentoring, we’re not motivational speakers. We don’t come into the room to somebody who has been newly injured or impaired and say heh, look at me, I did it, you can do it too. I represent success and you can represent success. But we go in ready to ask questions. You might call it motivational interviewing. And we go in ask open ended questions. Find out what’s the big deal to them. What’s valuable to them? What’s important? What are they worried about? What are they hopeful for? And when you start getting that insight; then you share your experience or a mentor, would share their experience with that person as it relates to their hopes, concerns or fears about the future.

So, they might say oh I’m worried that I can’t be a good father. Well, if I’m a father which I am, I can say you can be a good father. And I can share my experiences with having been a father for my 18 year old and my two year old and my three month old. And give them a sense of confidence that they can do it too. But we don’t want to just come in like I said and be a motivational speaker more or less just bragging on ourselves. But we want to speak directly to the concerns of the individual.

Host:  Wow. Thank you so much for joining us today. What a great segment. What a great podcast. Pete, thanks again. That wraps up this episode of Shepherd Center Radio. You can go over to our website at www.shepherd.org for more information and to get connected with one of our providers. If you found this podcast as educational, inspirational and informative as I did; please share on your social channels. Share with family members and friends because we could learn a lot from this podcast and from Pete’s advice for us. So, be sure to check out all the other interesting podcasts in our library as well. Until next time, I’m Melanie Cole