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Susan Battista (parent):
My name is Susan Battista. When my daughter was born we actually didn’t think about the future or what the next step was because she was so ill and had so many things that were wrong with her that they actually didn’t expect her to live. So we didn’t really go beyond a day at a time and then eventually her health improved. She was still very ill, pneumonia five times a year and things like that, we really didn’t think about the future.
But as she became older, one, two three, we started thinking about school and education and she went to a school that could give her physical therapy, occupational therapy and also challenge her academically and teach her the things that she needed to learn at school. She did that, and she accomplished what she needed to, to the point where she had to be mainstreamed into a public school because they weren’t challenging her academically.
But, um, I became very involved in, in the school system. I fought for her to be placed where she should be and then there were issues with the special, ah, transportation, she was on a special ed. bus and I fought for a lift van because she couldn’t climb stairs, and another issue was seat belts, she, with her physical disability her arms are in front of her and if the bus route stopped short there was no way for her to brace herself so we fought for, ah, seat belts. So eventually we, we came to a compromise with the seat belt would be stationery on the bus and she would wear a harness that just zipped up and they would clip her on when she got on the bus so she couldn’t move out of her seat, just as if you were in a car and you had a seat belt on.
So we had some, some difficult things standing in our way but little by little you eventually overcome these issues, you don’t realize how big they are until you look back and you’re overwhelmed and say, “Did we really, did we really go through all of that? It’s hard to believe that we really did go through all of that”. And then there’s, um, with the physical disability all the, the medical issues. She’s had 21 orthopedic surgeries, that’s an issue in itself and like I said, I did have a son who was older and who was very difficult to be with Christina three weeks at a time, in the hospital, and also try to have a relationship with my son and I think, in the long run, my son got short changed, you know, my husband and I, um, we were always going, he was working, my husband was working two jobs, trying to be at the hospital, trying to be with my son, it, it was, it was a very difficult situation but we, we did the best we could as parents.
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Susan Battista:
Christina has always had the mind set that she could do whatever she wanted to do and, another thing, I, I think it’s important to mention is that, when she was born, and she came home and she wasn’t able to walk, she actually didn’t stand until she was six years old, just be able to stand on her own.
My husband and I and our son, we never use the word “can’t”. It wasn’t a part of our vocabulary at all because if I couldn’t figure out something, or my husband or my son couldn’t help her with something, Christina would literally sit there and think about a way to do it. For an example, a puzzle. She, she could only, she would open her legs up and, and sit that was the only way she could get around would be opening her legs and scooting on her, on her behind to move around because she wasn’t able to walk. Well, say she wanted to do a puzzle, she would, she would literally figure it out that she would put the pieces on a lazy Susan, keep it on the side of her and reach for a puzzle piece and put it into the puzzle. She was always a problem-solver so she was, she was always that way. There was never “I can’t do it, I can’t”, and she never felt sorry for herself. And I think, I don’t know whether this is a good thing but I think it is, the fact that she was born this way and that something didn’t happen to her in her teens or her twenties. So Christina doesn’t really know any other way other than the way that she is.
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Susan Battista:
I’m sure she’s going to, ah, achieve her goals, I know she will, I…she’s going to continue on to, ah, to get her Masters, and I’m sure she will, she’s not going to have any problem. People are asking her to work for them, she’s already had, um, job requests, people asking her to work and, and I, you know, I tell her if she wants to, fine, but to make sure that she continues on with her education now before she marries and should have children because it becomes very difficult. So I, I, there’s no doubt in my mind that Christina will have a job, it’ll be, it’ll be a job that she’s happy with because she knows what she wants to do and I think she’s going to be great at it because she can, not, she can speak about it not just from a professional point of view but also from a personal point of view which is something she could have used when she was growing up to say you know, I understand what you’re talking about because I’ve been there and I didn’t have anybody to speak to and now people will. Once she starts practicing, um, what she wants to do people will have someone out there, they’ll have Christina.
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Susan Battista (parent):
We were just in Boston, and that was two days ago, and here we are in Washington and here we are again, Christina has, ah, enlisted us to, to do this interview (laughs) and so that would be Christina so here we are (laughs). I don’t know what’s ahead of us, with Christina it could be anything. Right now I’m just hoping after these past few days that we’re going to go to the airport, get on the plane and go home (laughs) and I can be with my husband and my son and my family, my dog, my baby, he’s been waiting for me.
Alyne Ellis (interviewer):
(Laughs) right, OK, thank you very much.
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Christina (Susan's daughter):
Christina Battista. I’m from Rhode Island. I’m gonna be 30 this year. I have what’s called Arthrogryposis Multiplex Congenita and this happens one in 3000 births and this disability affects both my upper and lower extremities. My arms are in a fixed position; I cannot move any of my fingers except for my thumb on my right hand. I can walk but I have a hard time climbing stairs and basically every activity that I do requires some kind of assistance. However, I’ve been able to adapt things where I can cook myself, do a little bit of cleaning and, you know, just try to do a lot of different things in my own ways and I, I type a lot so I’m pretty quick with that as well.
Alyne Ellis:
So when you type, I assume you don’t use a keyboard?
Christina:
Actually I do, it’s funny because if you really look at my hands you know, and my fingers don’t move, I actually just use one finger but I use a lot of upper trunk movements so you’ll see me going, typing so fast left to right and I actually type a lot faster than most individuals do.
Throughout the course of the years I had over 21 orthopedic surgeries, everything ranging from my knees, my back, um, my toes, everything just to make me more “able”. A lot of the challenges I faced was in elementary school. The elementary school did not find that it was appropriate for me to go outside through recess because it took too long to put my jacket on in the winter months so my Mom had to fight for that. I was in actually a special education room for two months when I transferred to a new school because they saw my physical disability and automatically thought I had something cognitively wrong so my mother had to fight for that as well. And then high school was pretty OK but because I still needed some adaptations for certain things I had an IEP and, um, for the longest time they didn’t want me to be in the room when they talked about me and I didn’t feel that that was appropriate so I said that, you know, we won’t have an IEP, then, if I’m not allowed to be there and voice my own concerns and I got that changed and I was involved in my own IEPs. And then when I went into college, um, community college, my Mom and I felt that I, um, we needed to explore some other options as far as personal care assistance and therefore we contacted an Independent Living Center and I got myself on a program.
Alyne Ellis:
And what about now?
Christina:
Currently I have received my bachelor’s degree from Rhode Island College in psychology with a Minor in sociology. I do volunteer work for the Developmental Disabilities Council in Rhode Island. I run an advisory panel for people with disabilities in Rhode Island, I’m the chairperson. I volunteer my time at the State-wide Independent Living Center in Rhode Island as well and for fun I go horseback riding, therapeutic horseback riding. I am engaged. I have my own apartment and recently I just got approved to drive.
Alyne Ellis:
Wow, what a list! Wow! So is, does your fiancé have a disability?
Christina:
Um, he does actually, it’s not a physical disability. He’s got what’s called Asperger’s Syndrome, it’s a form of autism, um, completely high functioning, you would never know that he had it and basically for him it’s just a social aspect of life so we, we kinda complement each other because I tend to talk too much and he, ah, he doesn’t talk a lot so we kinda balance each other out.
Alyne Ellis:
When’s the wedding?
Christina:
September 20, fall 2011.
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Alyne Ellis:
What kind of care do you need?
Christina:
Pretty much everything, um, from head to toe. I kinda joke with people, I say, it’s almost like taking care of a baby but this baby can talk back to you. And I don’t mean talk back as in the rude aspect of things. Basically my morning starts out where I can get myself out of bed because I can, you know, walk and things like that but it’s everything from helping me with the shower. So it’s bathing, it’s dressing, preparing my breakfast and then once I’m out for the day, when I’m in a car they need to be able to put the seat belt on me, open and close the door, things like that. Then it’s preparing my lunch and dinner, then it’s night time routine, which means helping me put my pajamas on. My make-up I can actually do myself, I’m very picky about my hair so, you know, I have them help me with that. Painting my nails, I mean everything that you can really think of that you would do for yourself is what I need assistance with. Except I can write, I can write and like I said I can do some other small tasks on my own as well.
Alyne Ellis:
That must have been a pretty big deal for you when you figured out those things you could do.
Christina:
You know, you, when you have a physical disability you really just kinda learn what works best for you and sometimes it’s even learning how to ask for help, I mean I find that that’s really key. I’ve been in situations where I’ve been with other people who have my disability. I just attended a conference not too long ago where I was with others who have this and there was one individual who I met who was totally opposite with me as far as asking for help, it was almost like this person demanded it and I try not to do that because you know I value that person and you know, they are my hands so you know, I have to ask in an appropriate way, you know, would you mind, could you do this, if you wouldn’t mind, please, thank-you - those go a long way.
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The thing that I keep leaning towards is counseling people with physical disabilities and their families so I think my next step is actually gonna go back to get my Masters degree and eventually open up my own counselling, um, firm where I can do that, I can counsel people with, um, disabilities and their families.
Alyne Ellis:
Well what do you think you see, you must have some pretty strong opinions about what people need to succeed?
Christina:
Well I think everybody’s situation is very unique. I can only individually speak for myself, but I think everybody that has a physical disability kinda goes through the same emotions or questions and those are usually, you know, “Why do I have this?” you know, “What can I do to better my life? What can I do to show others that my life is great and that I am happy?” um, and I think adolescents have the hardest time dealing with it because not only are they trying to figure out at that age who they are but they’re also having to identify their disability and what does that mean to them and to others so I just, I really truly believe that adolescents are the ones that really need a lot of concentration, I mean you can open up the Yellow Pages and you see counseling for marriage, for couples, ah, post-traumatic stress disorders, everything else but a category for people with disabilities.
Alyne Ellis:
There must be times you get frustrated or whatever, I mean, how have you sort of moved within that space to become a happy person?
Christina:
Um, that’s a good question. Family obviously played a key role for me and I had a really good support system from friends, but I think as you get older you get more confident in yourself and, at least for myself, that’s how it became for me. As I got older I pretty much said if somebody doesn’t like me for who I am then, you know what it’s not worth my time to be around that person. And it was hard, don’t get me wrong, when I was young, when it came to dating, because when you’re like, you know, in your young teens the typical reaction is you’re impressed by looks and I didn’t have the “normal” body. So that, that was challenging but you do get past it and eventually, you know, people hopefully find that right person for them and I, I got very lucky.
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