Kelly Rouba and Karen Palazzini

00:04 My name is Karen pellatini. I am 30 years old. It is September 19th 2010 and we're in Trenton New Jersey and I'm here with Kelly Ripa who's been my friend since I think 9th grade in high school 9th or 10th 9th and I'm 30 years old and I'm here on behalf of enable ink and I saw I serve on their board and they actually serve individuals in the state who have developmental disabilities. So they had asked if I'd come out today and share my story.

00:40 All right. Well, so let's start by telling why you want to share a story. I guess what you do in your life. I was diagnosed with juvenile rheumatoid arthritis at the age of 2 and it's taken quite a toll on my body and I actually use a wheelchair and so for many years I was very bitter is Karen nose and sort of kept to myself about it. But then in college, I sort of had this Awakening if you will and turned did a 180 and sort of began to accept it and decided that rather than being miserable about it. I would do something to make life better for myself and those living with the disease. So that's really when I started to become an advocate for people with disabilities and people with juvenile arthritis, and that led to me becoming involved in different organizations like an evil so so

01:40 This made me think of a question when you're just saying that so I saw that turn around and you in college, but from afar cuz I was going to college 2 hours away. What do you think prompted that do things? You just finally got comfortable with things or do you think there was something well I had to do a term paper for one of the classes that I had at the College of New Jersey and I decided to do the paper on juvenile arthritis. And as I was writing it, you know, I thought it was a subject. I knew really well and actually I learned a lot in the process and then when I was done I had to present to the class and it was the first time I really talked about it to anybody the little a room full of people and I just feeling like they learned a lot from it and I enjoyed creating awareness amongst them and realized it was something I wanted to keep doing and that's how I

02:40 Involved in an in you know what actually a few years later after I graduated. I met Richland Sally who we work together and he had Muscular Dystrophy and I think he helped me really become more comfortable in my own skin and that things really hot girl for me. Even at that point I got from there. I think William and you tell me this but probably you've got a lot of positive feedback from that to from actually being open with people and from people if they know the answer as to why you're in The Witcher don't necessarily think about it as much I think and it makes me sad I think that here I mean juvenile arthritis has been around for many many years and here it's 2010 and people still largely don't know that children can get it and not just the older children, but baby is so that's one thing.

03:40 I am trying to do is create awareness and one of the general public because a lot of times people still ask what's wrong with me and they've guessed everything from a stroke to approval process. And so I realize there's just such a gap there and trying to fill that there's also a huge I think from what you've taught me about driven arthritis. There's a huge difference in people who are affected with it and how effective they are. So obviously you're on one end of the spectrum was other people don't have outward signs of it, right? Yeah. There's a lot of people who have it that look like the quote on quote a normal person. Yes the typical person and and it doesn't mean that they're not in pain. I mean I still in pain I'm they just don't look like they're fact that and me personally you can tell it's affected every joint. So I'm trying to also let people know that like, you said that it can affect everybody differ.

04:40 Me and Anna and actually not just that but from hour to hour or a lot of us are affected differently. So 1 minute. I might be feeling pretty good in the next. I'm in a lot of pain tonight. So it has its ups and down really changes. Will you are definitely more than just do for arthritis. So we should talk about something else to I'm going to start the question. What are the most important lessons you've learned in your life say sometimes I would love it if we could just flip everybody inside out and see that we're all the same on the inside is too often. We look at people and judge them for how they look on the outside and stead of the type of person they are and secondly you everybody has abilities and maybe I need a wheelchair to get around, but I can be talented in other areas. And so I wish more people would focus on each other's abilities and

05:40 The things that we may not be so good at gestures. I agree. I mean, that's the first people I mean, so I walk with crutches as you know, that people already or the people named. Oh and that's the first thing people say of you and of me, especially when we're together with just his money, but you know that I see the crutches for a wheelchair first, but there's a whole lot more that we can do. So, it's a good last time I was born with spina bifida as you know, and that's the same is very similar juvenile serious, and that there's so many different forms of that. So I have kind of a middle middle grade. I am ambulatory but ambulatory with crutches and it affects mostly my right leg, but definitely present some limitations. I mean, it happens though, but I think you and I both

06:30 I've done pretty well for ourselves pretty accomplished. So proud of us that is certainly a lesson that has been good to learn but I think we probably both learned a lot sooner than other people in that, you know, you just get on with life and you do what you can do when you make the number to that it was pretty easy for us to figure that out. Maybe some other people take longer. I don't know personally. I'd like to find creative ways to get around challenges and I think you're much the same way. We're not even accept. My challenge is to begin with us. I mean you and I both don't know any other way of life and we don't know what it is to go run down the block or to go for a jog or something like that, but it's not since it's never been there. It's not like we feel like I don't know most of time don't feel like things been taken away to find other ways to do it and I know somebody recently who serves sprain their arm and all the sudden told they couldn't play sports for a couple weeks and tragic life.

07:30 How do you handle the situations like that. It depends how I know if they know you well and they don't think of like, oh, she can't go play sports. Anyway, then they complain about it people who are more aware of my disability. Then don't talk. I don't know. Don't talk about. I mean, I think I'm the eternal optimist for people that are talking to me. It's like really it'll be over two months like you can do it up and move on and you'll be fine by our people to help. So I'm sure you do. I don't know I try to do it for a small.

08:30 Being able to interview you fraction magazines that okay. Let's do have you had any experiences are moments in your life that you might consider sacred. Let's say I've had actually I had to say I mean for as many challenges as I've had over the years and I've certainly had my fair share this past year. I've had a lot of really wonderful experiences as well. And I've I've met a lot of great people have really inspired me and so in terms of sacred though, and it was just really be spending time with family and friends and and learning from them and

09:30 One thing and it ain't no secrets away right word. But another's are life-changing experience for me was attending the Miss wheelchair America Pageant. Yeah and just meeting women from all around the country who obviously all used wheelchairs and all had overcome a lot of struggles and still done amazing things and Blaise cast and their states. It was definitely life-changing for me and a lot of them still stay in touch with me and vice-versa tonight, and I know it affected my family a lot to I'm sure they wasn't in your life your kind of nothing daily. You don't want to sell you run across a lot of people who deal with encounters around then all sudden you're in a room full and

10:20 Help Sarah thing. I don't know and I have to say I thought going into it. I had a pretty good shot just have have I said, I thought I had done a lot of things and I spent there an actual criteria as far as like the public service everything even get any of that. You had to be between 21 and 60 and do a lot of bed and I really forget what what other things you had to have to compete but this is actually years ago, but every single woman there was so accomplished. It was amazing and they served on councils and had to do two different program.

11:20 Just really been such an amazing things and they all had such an upbeat attitude towards life and they haven't kissing stories. I remember you telling me some of them say everyone's in wheelchairs for different reasons. That's not all it is a great mix of people and like one girl had been trying to fix a windmill and her on her grandparents farm and fell and broke her back into her a couple people were hit by drunk drivers and one person was in a wheelchair because of polio and that ended up being the winner actually and they they really just all had such interesting stories and background. So I wish I wish more people could have been there and it wasn't like Miss America well-tended light well-publicized meaningful than the typical beauty pageant.

12:20 No more at stake for you guys. Yeah. Yeah. It was really the one that should be showcased Nationwide and I think a lot of people would learn from that and benefit from it and be inspired from it Kelly. I want to pick us up here and we'll maybe made you decide to

12:37 Go to the pageant. Well, actually rich who I spoke about earlier was the one he and his wife suggested. I do it after reading about it and his muscular dystrophy magazine and when they originally suggested it there was so much involved that I didn't think I could do it at that time and but it it always stuck with me and I was always something I wanted to do on the timing was right and finally a few years later. I heard the pageant was going to be on the east coast and it had never been before and I was just at a more settled place in my life career-wise. And so I thought I'd I'm going to give this a shot and actually had become more of an advocate by that time they were getting more into the swing of things. And so I ended up applying I had to go and fill out this

13:37 Who packet for their board of directors? And at the time there wasn't actually a pageant in New Jersey remember that like many states had so I had to go before the board and they did select me and I then had to do public speaking on a regular basis and that was sort of new to me and you know actually opens a lot of doors for me and I spoke at different conferences as you know and goals which most meaningful things you did. It became part of my platform. I made a three-fold platform and so part of it was to create awareness among the really young children and that's where I feel like a lot of the stereotypes began as to what it means to have a disability. So, you know, I spoke with them and a lot of them really did become enlightened.

14:37 What frustrates me is when I go out in public and kids stare and they look at you like they've seen an alien or a ghost as you know, and say Mommy or Daddy what's wrong with her and apparently they don't usually whisper it. Yeah in front of everybody and it is is hurtful. It is painful for me or whoever I'm with and so I found that by doing that I was actually going out in public and kids were sick and Daddy. I remember she spoke at our school that's called and it was great to see that turn and then I was making a different and they were excited to see me and not scared and you're a little celebrity almost for them. Anyway, so I did that and then I also engaged an emergency preparedness for people with special needs because there have been a lot of reports out that there's a lot of gaps in that field and that were not being served properly and when they're

15:37 Disaster there's people who haven't been accounted for and they've got my fine. Yeah, there's actually a paper the other day and it's still happening. A woman was being pulled in her wheelchair by her Aid in flood waters. How come you are so I've been working ever since then I do encourage people to be prepared and your kind of Twisted that into a career of ourselves and open the door to a career right people with the New Jersey office of emergency management and the progressive Center for Independent Living Independent Living approached me about the spokesperson for them and then that led to a job with FEMA and it led to actually other jobs. So, you know, there's still a long way to go but I feel like I've been working on this for years and hopefully more more people are getting prepared and maybe it'll save a life somewhere along am I

16:37 The third part of my platform was to work on increasing employment opportunities for people with disabilities because at this point we're still having like 70% of people in the state with this abilities without jobs. And that's a horrible number hasn't gotten much better. But I'd like people to hire us for our abilities. And yes, maybe I would have trouble filing something in Ohio file cabinet, but I can do reports on the computer that you knock your socks off so you can cuz they have to recognize what we can do what you can and narian of an emergency care are so now I think shows I should show people how capable of somebody with a disability can they

17:37 They hired you and then looked beyond. Yeah, I was in my interview different places and jobs and things and I always tell people straight up which I think it's hard to people. I think it's prospective employer employer is he know they look at you and they don't want to ask cuz they're not supposed to ask her. You know, they don't want to bring it up. But I'm sure you're the same way. I've always made it as forward issue was like, yep. Yep. I know. I'm on crutches and it's going to stay that way. So ask me any questions you have now because I didn't see it as one of the ocean and I need to make sure that you don't see it limitation either. So thankfully I've had very open-minded employers and never had a problem with that and then with the vet schools Dave and I mean that was huge to go into vet school with any kind of disability because you're dealing with horses and cows and sheep and goats and God knows what else everything that wants to kill you. So thankful. I entered a people never have ever made it.

18:37 Muttation for me and even if they even if they had doubts prove them wrong, so as soon as people seen I've been in a wheelchair. My phone is changing them shutdown. Yeah, totally totally and it's a shame because clearly they were impressed enough with my resume for me to get in the door. But then when they saw the wheel chairs, aren't you I never got any call back so discrimination even in 2010 still exists and benefits of conscious which I think sometimes it is and it's the same way not just in the employment area. It's with dating to I mean a lot of guys and girls can't see beyond the disability that somebody has

19:37 Stihl professional personal everything had as you know, a lot of struggles with that over the years and I think it takes a really special person to see beyond that. You have to get to know somebody that you don't you don't have that physical factor to work off of most the time. You have to get to know somebody well and be friends with them and then have them kind of not seeing the wheelchair definitely and I hope if people are listening to this 6 years down the road that things have improved so, and all because you know, we all age and we don't look the same as 50-60 as we were when we were 20. So you really have to fall in love with the person. That's very true.

20:35 Interesting thing you brought up the first last everything looks so you wait. Let me see if any other questions fit me.

20:43 I mean, do you have any good dating stories?

20:46 I feel I guess they didn't say that. I mean there's some guys over the years and I think a lot of times I've actually lowered my standards quite considerably and you have and question and so the guys I feel like that I most admire my life or really just interested in being friends and you know probably wouldn't look twice. And so I feel like yeah definitely lowered my standards and I feel like things would be different if I didn't use a wheelchair totally agree. I mean that's just a fact of the matter. Unfortunately. I would love to have told my mom. I would love to have one month. We're totally free.

21:46 Arthritis tree the wheelchair just obviously, you know and just see how different people are simply dresses up in a fat suit for the public Persona. I mean, it's similar things in personality might have no doubt. We've actually written to Tyra Banks to see if she would do one of those that he isn't and such and we would love to see hers then in a wheelchair and try to date and and or get a job with the same. I mean they could try to make her in Disguise live having it have to not be able to recognize her I guess so

22:46 Maybe that's not politically. Correct baby. I wish you would do it but very much tell me how proud they are me and all that I've accomplished and but then you know, that's that's why they all that they might consider dating and so I don't know best accomplishments over there. What is the what are the proudest? What are you proudest of in your life? I have two things and one being last year when my book came out. Yes. I'm an excellent for those who were interested in the Ultimate Team guide are always the provider. I am very proud of my book. I must say because

23:46 Growing up and wanted to be a writer since 69 and along the well over the years. I've been writing for newspapers since 99 actually the Trenton Times I started with and progressed to write for magazines and websites. And so I had not done a book and in December of 2006. I was approached by an editor actually a husband of an editor of a series called. It happened to me which is put out by a scarecrow press and they're part of Roman in Littlefield. Actually. It's very complicated and asked if I would do the latest in the series which would be on juvenile arthritis and they said they've been wanting to do one that on that for a while and actually jumped at the chance and part of the reason.

24:46 What is because a lot of the literature out there was very outdated or very sparse and it's really hard and came out to about 300 pages and I did kind of launch the book with a book signing that you were at and how to be a border border in Princeton and to get the word out about that and it's been in more difficult process than I would have thought but people are really excited that it's out there because those living with the disease in their families and just haven't had a lot. So now I see you that is out there. This is sort of like a all-inclusive self-help guy and you have a lot of Avenues in there for people to help themselves.

25:46 Agencies that you found helpful organizations that have helped even things like that actually stemmed from when I was interviewing people for that book and I came across the arthritis National Research Foundation and interviewed the executive director and lean Belial who I consider a second mother and they're out in California and they're amazing to me because they are so compassionate and there's solely focused on finding a cure for arthritis and actually related diseases and raise money and to fund research and that's all they do and when you're living with something as you know, you really just want to see that work is being done to find better treatment and a cure move forward.

26:46 I began helping them a lot. As you know, and was invited to be on their board and then they did something I would have never imagined and that's create the Kelly award for juvenile arthritis research and it's become an annual Grant of $75,000 that go in your name that goes to a researcher who's working on a project that stand out amongst all the Gran applicants and this year we awarded it to dr. Susanna Bridges and she called me to thank me and told me that if she had not received the grant she would not have been able to continue her work because the university she was with could no longer funded, you know in this economy is just nowadays is horrible. So don't want to see that corner that car Mustang so I had the time I actually had chills because if it weren't for this grant her project would have

27:46 Open the fountain. Can you imagine I mean great things could come by her work and some know that it could have just been done and it's cool to that. You have a name to money make it so many times. I think money go somewhere and you don't really know where it goes. But yeah that's going to her and to her resorption. I love having oversight over things like that. So I am still humble invited. I have to say it because

28:15 It just looking back as we talked about earlier how close off I was and not proactive and grateful that I did not want any and have done something that's made a difference instead of just being bitter and miserable and ignoring what I think that you

28:41 I'm great places will hopefully people will learn by that I mean instead of wallowing in self-pity that you if you just looked at things differently in life and it's all that you could make a difference in spite of your situation or limitations. You can really do great things. I did that thing to put your accomplishments of This research was funded which is pretty cool and I continue to promote that and it started to really hard at that a lot of things with the Arthritis Foundation enjoy it because it means a lot to me and we can talk about that in a minute. But why don't you tell me I was thinking about that as you were talking. I don't know I guess so, I think probably the first thing that

29:37 That popped into my head was the day I found out I got into vet school and maybe the second date is today. I was finally finished with about school for years later or was for very long are so I think that that's got to be it and also mean this isn't like a concrete accomplishment, but I think the people that I've gathered around me, I mean, I like my friends my family, we're both very close to their family as I think it is a huge and I do that is an accomplishment because they're so many people in the world who you talk to you or who I work with her. Whoever who constantly have problems with their family and their drama. Drama and you know, I'm fighting with this person and I don't get along with my mother and I haven't talked to her in 20 years and I think it's a huge accomplishment to have that WWE call. Definitely you have many many great friends and just from being in so many people has weddings.

30:37 Yeah, yeah. Yeah, but I was lucky I found a good group of people in college good group of people in Practical from high school. I visited him. Yeah, but no, I think that as a huge accomplishment to be able to stay in touch until all the different places that I've lived in line around. I'm so glad you're living close to me again because for so many years or so far away and I have a phone conversation once a month. I know and I hope so, let's make our last 10 minutes count. What do you want to talk about in the last 10 minutes? I think we've done pretty good so far I do too. Well. How about

31:22 Sure. Sure.

31:35 Call Karen a little bit more about him and the influences that on you, you know, Rich he he was never one to be out there in the public, you know and advocating in that regard. I mean, he did do some with the muscular dystrophy Association in volunteering his time, but he was just he was a great friends and Loki I guess you two like how you can have a normal life. That was it is yeah, exactly it. He's married had a kit had two kids, right? Yes. Maybe you should say unfortunately what happened to your to go but Rich passed away on Christmas Eve on ya going to wait while at Wegmans and have a heart attack and it was very unexpected and we all thought

32:35 He would unfortunately Die Young from the Muscular Dystrophy and and it had really like with me taking a toll on his body and he's been using a wheelchair for years and couldn't walk at all anymore and I can actually walk a little bit as you know, but he couldn't but he was never down about that and he just took I took life I guess with brain is not like he dealt with whatever he came his way. He wasn't talking about it and he figured things out and and and I like what you said in that really he wasn't out there the public Advocate but just showing me on a friend level how I could grow and achieve all the things that so many people don't think twice about right for those with disabilities is very challenging.

33:35 I was an eye-opener for my parents to and you know, he held a job often multiple jobs and actually as long as I knew him, you always were full-time and I had a part-time job and you know, he drove and he owned the house and was married and had two kids and and

33:58 It was just had a very full life beautiful life and inspired me to to know that I could do it and the most exciting thing to happen to me recently is that I did finally buy my own house has people like rich and a couple of my other friends like got to lose or Norman Smith who's the founder of project Freedom which develops barrier-free housing communities throughout New Jersey. These are all people who are out there showing everybody else. We myself that no matter what your disability you can live on your own and and independent absolutely and your house is beautiful. Thank you. And so is yours going more and more towards Universal Design for everyone because you know as we age we all become Limited in some fashion. I was crying so more doorways or

34:58 Wider and cabinets or countertops might be a little bit lower and more things are on their first floor like at least narrow bathrooms master bedroom, maybe less no steps to get in and out of the home. So anyway with my home, I've made had to make a lot of modifications so I could get in from the ram into an automatic door to go grab bars in the bathroom and toilet flushes. You have to use it open. The living Bible is on automatic Toto USA actually donated the toilet.

35:50 Play the watch later. They would call it and it's all up in the grab bars to use my bathroom has a case study to show people with all types of disabilities and even the elderly dad so that you can be independent and these things that they put in my bathroom have pulled out some of the obstacles in my life that a long time ago. My mom and I thought or not even a long time ago, but up until recently right. How do you get around? Yeah, we thought how would I do some of these things? So that's been helpful to see that I can do more on my own thanks to Innovative products like that is to say I can't wait to have that all automated. So yeah, that's the next up there doing home automation. So with a touch of the button the lights will go on. I can control the heating and air the blinds will go up and down.

36:50 Where will you be in 10 years? So well, I feel like I'm in a state of flux I am.

37:10 I feel like I hope to be in a much better position with my career. Unfortunately, I was laid off in April and had to then quickly take a full-time consultant job for a local nonprofit and quite as much money and it's a sad by product of this horrible economy. We're now living in and I really hope that several years down the road. I'm where I wanted to be now and or better and I'd like to have a great job where I'm still continuing to make a difference in people's lives and hopefully making a much better salary and just something I enjoy you know, one thing I really wanted to do is work for the arthritis National Research Foundation and they're not out of point where they can grow like that and what you have to be in California to do that. No. No I said we'd like to see them girl on the East Coast.

38:10 And I'd also really like to be married and maybe have a child of my own. So that's what I'd like to have in the future. But how about you think somewhere there's always me. I will still be a veterinarian obviously, but there's always a way to ways to grow professionally and just with your knowledge and abilities and all that stuff. So, I don't know if I'll still be doing emergency work. It's a pretty wicked on the hours and overnight then you know, all kinds of strange things that I do, but I hope you open your own practice. So I don't know. Take care of my little baby child cute Maltese family and friends veterinarian be in the house. I loved her family around me that I love him and I

39:02 Just more good things considered a more things 20 years is a harder one to answer though. I don't know if I could do that. I think you'll be successful in that home. Thanks. We have one minute. So I'm going to think you will thank you for coming fun. I'm glad I was off today. I didn't get one of the few people who knows me best though, and so and and vice-versa. Obviously we talked about pretty much anything, Thank you.